Cupcakes and Counterblast

I sit in my boat, alone, on the ever-changing ocean of life.

[theritualofourexistence]

03/25/2026

If you asked me in December how things were going, I would’ve enthusiastically replied that they were going well. My mental and physical health have been stable (the most stable they’ve been as an adult probably), I love my job, I love the time I get with family and friends and my partner. In 2025, I was very fortunate to joke that having no news is exactly where I want to be… a lot of things fell into a very comfortable and joyful routine for me. I very much do not want my life to be exciting—I find it’s much more enjoyable when it’s not. 

Earlier this year, however, that routine was disrupted when I found myself suddenly and unexpectedly single. 

Over the years, I’ve often described this recent long term relationship as non-traditional. My now-ex and I established very early on that we both wanted this relationship to function in a way that allowed us to preserve our independence. We both wanted to be direct and honest with each other about everything. And we both wanted this relationship to be, instead of something we needed, something we wanted—a bonus. For me, it was that. I can say with confidence that this relationship never felt like a burden to me and that it brought me a significant amount of comfort and joy and escape during some of the most challenging years I’ve faced. I wish, so deeply, that things had changed for my ex and I on similar timelines… but alas. 

I could write a lot about our relationship. About the ways it helped me stay anchored, about the new things I encountered and fell in love with that I’m not sure I would have ever known without my ex. I could write a veritable novel about the things I’ll miss. But I’ve chosen to keep most of that dialogue private for now. 

What I do want to reflect on in this post requires the recognition of my recent break-up, but isn’t really *about* the break up. 

The night it happened I immediately reached out to my people to both update them and warn them that I would be needing an extra helping of support as I navigate my grief. I messaged my best friends. In the car on the way home, I called my mom. Through my panic and tears I managed to say that while I was shocked and heartbroken, I knew I would eventually be okay. 

My best friend pointed out that it had been almost exactly ten years since my last holiday-surprise-break-up. Quick note, having two of these experiences feels freakishly unlucky. In an effort to confirm this unsavory timing, I ended up scrolling through old blog posts and found one post in particular that really helped bring me back to myself. The post is from 2020. I’d been single for 4-5 years at that point and had done a lot of work to heal and recover from my previous break-up. In the post, I talk about online dating and dating in general, I talk about my “standards” and expectations. You can read that post here if you’d like. 

The final line of that post is:

“Maybe, in time, I will find someone to share my life with in a romantic way. Or maybe I won’t. And honestly, I would just like to believe that I’ll be okay no matter what."

That stopped me in my tracks. Here I sit in early 2026… so much is on fire and so much is dark but I absolutely do know, confidently, that I’m going to be okay no matter what. That knowledge doesn’t erase the grief—that’s a thing I just have to live through for right now. But I know that I can and will live through it. In the span of five years, I have managed to prove to myself that I will be okay. I am far from being my own hero but that is some pretty heroic stuff!

I wish I could say I had moved past all the fears and insecurities I shared in that post from 2020. With my general attraction for others being both low and specific, it took me years to find someone I was attracted to who was also attracted to me after my last break-up. It may take years again this time. It may not happen at all. I hope it does… but I’m a permanently disabled and chronically ill person living in a small community with an even smaller social network. I know I have plenty to offer… but I do have baggage and standards and expectations… and that means I don’t exactly feel optimistic either. 

To those of you reading this, thank you for loving and supporting me. I value that love and support differently now than I did in December. But please keep your pity to yourself… yes, I’m sad, but I’ll be okay. After all, even sadness—the depths of it, the weight of it, the ache of it—is a gift.

Living with and through my sadness is proof that I am alive and aware and as long as I am those things, I can find and make and explore new paths to love and joy—the great magnifiers of the human experience.

I can and will do that regardless of my relationship status. 

Songs I’ve listened to a lot so far this year:

“What Was I Made For” by Billie Eilish

“Fare Thee Well” by Longest Johns

“A Troubled Mind” by Noah Kahan 

“Stopping by Woods” by Eric Whitacre, VOCES8

“Weightless” (ATL’s version) by All Time Low

Quotes that have carried me through the rough patches: 

“The woods are lovely, dark, and deep—but I have promises to keep.” - Robert Frost (See ^ “Stopping By Woods” for a musically breathtaking meditation on these words) 

“Still, a great deal of light falls on everything.” - Van Gogh 

“We live in between what we choose and what is chosen for us.” - John Green, “Everything is Tuberculosis”

“There’s no such thing as ready. There is only the moment and what you do with it.” - Sarah Beth Durst, “Race the Sands”

It's spring. Let's take a deep breath and carry on.

[theritualofourexistence]

A Tale of Two Uncles

From a loss perspective, I consider myself very, very lucky. I have a big family, and I’ve made it to my mid-30s with living grandparents. I lost one grandparent before I was born, one I was not that close with when I was twelve, and then my Grandmom in 2020—who I wrote about after her passing. When I speak about my Grandmom, I can’t help but reflect on the magic of my big and blended family and the way that she held us all together. I often joke that divorce runs in my family… but… it’s not much of a joke. It is, however, responsible for creating the many branches of the tree that I am lucky enough to call my family. To me, family is family. I’m grateful for all the family I have through all the various step- and half-relatives and marriages and re-marriages. Today, I am going to talk about the loss of my uncles.

In September of 2021, I lost my Uncle Greg to cancer. I never took the time to write about it—I think in part because I knew the reflection would be hard. In part because I was spending a lot of energy juggling a lot of plates—and I wasn’t seeking additional reasons to sit with my grief.

Last week, I lost my Uncle Mason to cancer. As I navigate the path through my sadness generated by his passing, I’ve found myself thinking a lot about Greg—and the tribute I’ve carried in my heart for years but never shared.

I was blessed with both these uncles through the web of connection and reconnection in the complicated map of my family’s marriages. My Uncle Greg was my dad’s younger brother, and my Uncle Mason was my mom’s older brother. They still are those things of course, despite no longer sharing in family holidays or group chats or games of Balderdash or delicious meals or inside jokes or golf trips or late nights spent trading stories.

Before I was born, Greg developed a brain tumor that required significant and life-altering treatment. The care that he received saved his life, but it also left him very changed. My dad often reflects on the magic Greg had when he was young—his athletic nature and charisma, his energy and spark. Though I never knew that Greg, I had the remarkable gift of growing up with an uncle who embodied gentle kindness. Everything about Greg was loving and soft. Some of my favorite memories with Greg are of coloring with him at the table in my grandparent’s sun-bathed dining room. He was an incredible artist, and I still have many remnants of the colored pencils that he gifted to me over the years. Greg viewed the world with a simplicity that made it easy for him to find beauty in everything—something I still very much aspire to as I move through adulthood. He appreciated good food and good jokes, he laughed often, and the light in his eyes was magic. My Uncle Greg was an original.

My Uncle Mason hosted our family Thanksgiving dinners for as far back as I can remember. He had a personality that could fill not just the whole room but the whole house. The way he told stories was unparalleled—I will always be striving to bring even an ounce of the drama he could muster in these performances. Mason was full of color and light and lived life hard and fast. I remember him digging a tuba out of a basement closet to serenade us in the basement one holiday. His outfits for our Christmas gatherings were always over the top. I will only ever picture him in Hawaiian shirts. He signed every text and email as “The Love Doctor” since that was his long-term moniker—in fact, I’m sure I’ve known him as The Love Doctor for just as long as I’ve known him as my Uncle Mason. He made incredible meals for his family but, more than that, he made incredible atmospheres for people to share love and laughter. Whether people were gathered at their home in Delco or down the shore or on a sunny golf course—Mason brought the party wherever he went. My Uncle Mason was an original.

The past few years, Mason fought his cancer with an astonishing amount of faith and optimism. Although we were sick in very different ways, Mason was a very special resource for me as I navigated all the testing and treatment trials around my MS diagnosis. We are blessed that not many of our other family members could relate to the trips to the MRI machine, the treatment centers, the failed attempts to find a vein for an IV, the fatigue of a chronic illness. But we shared that, and we could commiserate. And when I was afraid, I was inspired by Mason’s willingness to confront life as loudly and passionately as he could.

My final words to Mason were encouraging, as were his to me. I feel very fortunate to have had someone walking some of this journey with me who knew how hard it could be to find courage in the face of medical obstacles. I know that he is now breathing easily. That he is not afraid. And I want him to know that I’ll do everything I can to keep kicking life’s ass—both for him and for me.

Watching both my parents lose a brother is heartbreaking. Losing an uncle is sad, and losing a special uncle is especially sad. But much of my grief both then and now is very much a response to my parents’ grief. To my parents’ grief and to the immense and dark and gaping holes these two men have left behind. The sorrow of their wives, their children, their parents, their siblings, their grandchildren.

I am aware of my gratitude even through my sadness. I feel so deeply lucky to have gotten to call both Greg and Mason my uncles. They showed me different and remarkable ways of viewing challenges—of viewing the world. They never wavered in their commitment to playing the hands they were dealt, whether they deserved them or not. I will carry the lessons they shared and pass them on to others. I will continue to be inspired by their strength and their eagerness to laugh and the way they shone so brightly when surrounded by the people they loved. Both these men had so much love to share, and I am so lucky to be one of so many recipients of that love. The world is scary. Cancer is scary. But you wouldn’t have ever had that thought, not even for a moment, by looking at the lives of Mason and Greg.

My family is my greatest gift. And right now, my family is hurting. I trust that time will turn the ache into beautiful and comforting reflection of memories shaped in shining gold. My family will continue to carry Mason with us, just as we have done with Greg. I will always see Greg in every colored pencil sunset and I will always see Mason in every flamboyant flamingo shirt. I will carry them both in my heart, too—constant reminders to balance softness and beauty with brash laughter and confidence.

My uncles were originals. And the world is dimmer without them.

[theritualofourexistence]

01/09/2025: Reflections

It feels a little bit like I lived an entire lifetime in 2024. I’m maybe too aware of a handful of things, that, if I were less aware of, I would probably be more comfortable—happier. 

I’m too aware of the political state of our country and the risks it poses to me, to my family and friends, to my clients, to us all. I’m too aware of how long it takes my body to heal even the smallest bruises and scrapes. I’m too aware of the damage we’re causing the planet—see out-of-season devastating fires on the West Coast at the same time as 12 inches of snow in Virginia. I’m too aware of every twitch and twinge in my body; too aware of my heart beat; too aware of every single pin or needle—sniffle—cough. I’m too aware of how my shirts pull tight across my belly and upper arms and too aware of the stretching seams in my pajama pants. I’m too aware that time feels faster the older you get. I am, in a lot of ways, too aware of things beyond my control. Too aware of the weird and wild irony of being allergic to anti-inflammatory medications *and* being diagnosed with a chronic inflammatory disease. Too aware of the distance between me and Memphis, Tennessee. Too aware of never feeling like I get enough time with the people I love most. Too aware of how much money it costs to live—to try and live comfortably. Too aware of the minefield of burdens me and my existence places upon others. 

Being too aware is part of my brain chemistry, and in many ways, it has served me well. It has helped me stay organized, it has helped me navigate emergencies, it has helped me feel prepared. And I have done a lot of work to learn how to live with this part of myself. 

These days I find myself really, extremely grateful for that work that I’ve done. It’s impossible to imagine how 2015-Veronica would be navigating the world we face today. Not that this is going particularly smoothly, but I think *that* would be a whole lot messier. 

In 2024 I battled to find an MS treatment that my body could tolerate. I fought with my insurance, argued with providers, underwent trips to the ER and testing and so many blood draws that the only good vein in my arm is now calloused. But—and this is a big but—for now, it seems that I’ve landed on a combination of things that I can tolerate that are (again—for now) managing my disease progression and daily symptoms. 

I have marveled at my brother and his wife’s journey towards parenthood. I got time with my best friends and their incredible, beautiful, smart, sassy babies. I spent wonderful evenings on the couch with my mom and the cats watching football or some goofy show about the unquestionable overlap between historical achievements and alien intervention. I reveled in the ocean’s persistent ability to calm my soul. I spent couch dates with my partner as we laughed together over dinner. I dipped my toes back into performing with a deeply meaningful staged reading. I got to do a job, really multiple jobs, that I absolutely love with people I am honored to work beside. I saw (and met!) some of my favorite actors on a whirlwind trip to Canada with the bestie. I listened to so many good, powerful audiobooks. I ate as many Culver’s cheese curds and root beer milkshakes as I could fit into one trip through Kentucky. I saw Wicked, also with the bestie, to celebrate twenty years of singing those songs together. I spent too much money on Christmas gifts. I got tattooed by an artist I have loved and followed for a long time. I saw some incredible live music and theater with my dad.

I would never imply that this year didn’t have struggles. I ran into probably my lowest mental health point in the last decade in February after my failed infusion. But, as I continue to be comforted by as I reflect on each year that passes, the good far, far outweighs the bad. It’s so easy to look back on the big challenges and gloss over all the good things because yes, for me, the good things are often a little smaller. But those flashes of sunshine really do add up in just the most magical of ways when you take the time to truly see and value them. Every laugh between February and the end of the year put me one step further away from my lowest low. And gosh, there have been so many laughs. 

One of my all time favorite moments in a book comes when Syrio Forel is teaching Arya Stark how to use a sword. He counsels her in ways that extend well beyond weapons use and often poses the question, “What do we say to the god of Death?” 

The answer? “Not today.”

Nine years ago I got a tattoo representing this exchange in order to carry a permanent reminder of it with me. Even when the ship seems like it’s sinking, what do we say to the god of Death? Not today. 

I know this may seem silly to some of you, but these words have saved my life and carrying them with me everywhere is a significant comfort, even almost a decade later.

In my life, I’ve learned many (often involuntary) lessons about courage. Many of my favorite characters in my favorite stories show courage in the face of impossible odds. I will always draw my own courage from them, and this tattoo is one of many that serves as a reminder to keep fighting. 

The past few years have taught me a really critical variation on those lessons as well: it is absolutely necessary that we don’t take life too seriously. Be goofy. Be a silly goose. Yes, be courageous. But be an absolute ding dong too. Laughter is the fuel that keeps me going these days. In fact, I find courage is much easier to summon the more I let myself find wonder and humor in the world around me. I honor this with my tattoo of the year—which offers a slightly different albeit equally valuable response to the god of Death. 

What do we say to the god of Death? In 2025, we say, “that’s my purse, I don’t know you!”

In 2025, I look forward to more opportunities to experience wonder, to feel all the big feelings, to fight with and for the queer community, to revel in gratitude, to fill my life with color, and to laugh as loud and as often as I can. 

[theritualofourexistence]

Year 1

It’s been a year since I was diagnosed with multiple sclerosis.

My last update was shared in March of this year so I will pick up where I left off. It’s wild to reflect on that time, on how frustrated I felt, on how hard it was to keep pushing forward.

My neurologist chose to pursue medication number two (Gilenya), despite my misgivings about potential side effects. I had to have my heart evaluated and I had to have a thorough appointment with an ophthalmologist. I learned that I would need regular checks for both my heart and eyes in the months after starting the medication. With those preliminary boxes checked, I waited to get word about scheduling my first dose.

Gilenya requires an 8- to 24-hour observation for the first dose. This is a daily pill and, assuming your heart tolerates everything during that first observation, you can move forward with the treatment on your own at home.

In March I began taking Cymbalta, an SNRI, to help with both my lingering nerve pain and my anxiety. Although I was starting on the lowest possible dose, adjusting was still a challenge. Fortunately, I only struggled for a week or two with side effects from starting the medication.

I learned that the hepatic hemangioma discovered during my MRIs in the fall had grown--and that if that trend continued, I would likely be referred to a specialty surgeon. I did what I could to prevent this awareness from weighing heavily on my every moment while I waited for follow-up imaging in September.

I was surprised by how much time had passed without any word about my Gilenya observation. I checked in with my neurologist’s office to learn that the local options for this observation were no longer options—and that my neurologist was instead moving on to a third medication—Zeposia. Zeposia is a similar medication to Gilenya and is also a daily pill. There are concerns, however, about combining Zeposia and SNRIs… and I had only just gotten accustomed to an SNRI when I was handed this news.

My neurologist is a good doctor. I believe he knows what he’s doing, and I trust him to make recommendations about my care. He does not, however, know my entire medical history. He doesn’t really know me as a person either. We’ve spent maybe a half hour together total, and I know he is too busy to read my entire **extensive** chart. I reached out to express concern about the Zeposia given the other medications I am currently taking and some research my mom and I had done on our own. The nurse I spoke with seemed frustrated but agreed to pass on my concerns. Within a few hours, I got a call from my neurologist—which surprised me, since I had previously navigated the majority of my care with the nursing staff at the office. He unleashed what I can only describe as a condescending tirade that lasted minutes before I was even able to get in a word edgewise. I have done my research, I am smart, I am informed, I am a good advocate for myself—and still this man made me feel like an idiot. The fact that I was able to respond at all without bursting into tears still feels like one of the springs most significant triumphs. I told him I wasn’t comfortable with Zeposia and would prefer to try a different medication instead. The medication I named as an alternative option is called Kesimpta. It's a similar type of drug to the Ocrevus (February infusion reaction) but it is a monthly injection that can be done at home with no hospital trips or observation required. He pushed back, expressing concerns about the Kesimpta being rejected by my insurance. I politely reminded him that I had dealt with that issue already and was more than willing to do so again if necessary. He curtly ended the call by agreeing to submit the prescription.

I did not land on the decision to try Kesimpta lightly and had significant anxiety about having a reaction to it given how my first Ocrevus infusion went. That said, it is a medication that plays well with my other meds and, blessedly, doesn’t require any intimidating observation or regular heart and eye evaluations.

The Kesimpta was approved by my insurance without issue, and I began the treatments in May. I am still successfully taking it. It does suppress my immune system so I am being as careful as I can be about illness and infection risk.

The Cymbalta is doing its job. I have less nerve pain, more mobility in my left hand, and I have had single-digit panic attacks in the last 6 months which I consider a significant accomplishment.

I won’t know if the Kesimpta is doing its job until I get my annual MRIs done… which will probably happen sometime in November after having to reschedule my summer neurology appointment not once but twice. If the scans indicate disease progression, I may wind up going to war with my neurologist again—since I am in no hurry to go back to the treatment drawing board and I have only successfully been taking this medication regularly for 6 months. But we will cross that bridge if it comes, and I will continue to do the work necessary to advocate for myself.

I don’t like that I had to go through four treatments before finding one my body can tolerate. I am anxious about being sent back into that godawful machine for my annual scans. I am anxious about the results of those scans. I am anxious about potentially having to return to the treatment drawing board. I am anxious about the election and the state of the world—but that’s a blog post for another time.

I deal with daily fatigue. I have to be really careful about physically over-exerting myself or spending too much energy. If my anxiety spikes, my arms go numb. I am learning to live with MS and what that looks like day to day for me. I will remain persistent in advocating for myself in a system that is broken in so many ways. I continue to be so, so grateful for my expansive support network. And I am glad to report that the optimism has resurfaced.

Since March of this year, I went to Toronto with the bestie to see Dom Monaghan and Billy Boyd in “Rosencrantz and Guildenstern are Dead,” saw “Kimberly Akimbo” on Broadway with my dad, helped host a successful Out of the Darkness walk at Juniata College with my colleagues, participated in a beautiful staged reading of V Ensler’s “The Good Body,” played birthday mini-golf, started and finished a massive organizing project in the basement, learned my brother and his wife are growing their family, spent a day at the lake with my best friends and their babies, scored below par on my favorite mini golf course in my favorite place on earth, saw Bruce Springsteen, saw the Indigo Girls, met my childhood best friend’s little boy, learned that *for now* my hepatic hemangioma is stable (but will still need to be monitored), got a very fun and very dumb tattoo, ate a lot of great food, read so many good books, watched a lot of great football and soccer, and spent a lot of time in my favorite spot on the couch next to my mom with a cat in my lap.

There will always be things to be anxious about. But even as the horrors persist, so do I. And I have so, so much to look forward to.

[theritualofourexistence]

03/03/24

March 3, 2024

After my first post detailing my journey to a diagnosis in 2023, I got an immense amount of positive feedback. Many of you reached out to thank me for my vulnerability, to call me brave, to share positive and uplifting stories of those you know who are also navigating MS. That validation is part of why I write and share my experiences but that kind of feedback is also just the hallmark of a good, supportive community–and I am so, so thankful for you, my community.

As the positive responses rolled in, however, my lizard brain started to do lizard brain things.

It’s sometimes really hard to share these stories in a way that is both honest and optimistic. I often wait to write things out until I’ve done a lot of processing and regained some stability–only after taking the time to do that can I usually spin things in a positive light. All the delightful responses to my first post made me wonder if I was really being honest enough. Obviously you, dear reader, are a part of my support community, but the majority of my friends and family who are traveling this road with me are spared the nitty gritty. Maybe three of you have been exposed to my darkest thoughts and only two of you have watched the panic attacks in real time. Only one of you has witnessed the rounds of dry (and wet) heaving–sorry, mom. Over the past few weeks in particular, I’ve wondered whether or not I left out too much of the struggle when I wrote my first chronicle.

I very much wrote my last update from a place of gratitude, and while I often still feel gratitude very strongly, looking back on my journey from symptoms to diagnosis to treatment plan with optimism was a privilege. A privilege that, for the moment at least, I feel like I’ve lost.

I write to you know from a place where I have been able to do less processing and a place that is, admittedly, not real positive. But if I want to be honest, which I do, it seems appropriate to share from this place too.

After my diagnosis of multiple sclerosis on Halloween 2023, I started pursuing access to a treatment for this disease called Ocrevus which is widely heralded as one of the most effective (read: “best”) treatments to manage this disease. I had to battle my insurance but managed to win my appeal and eventually got my first infusion scheduled for February 16th. A blessing I am retrospectively immensely grateful for is how much time I had to research Ocrevus, to ask questions, and to wrap my head around what this treatment would look like and mean. Not to spoil the trajectory of this update, but something I regret pretty deeply is how many of my eggs I put in the Ocrevus basket and how little energy I spent on having a back-up plan. Some of this was intentional–I know believing in a positive outcome is more likely to lead to a positive outcome… and I worked hard to believe in the Ocrevus. To believe my body could tolerate the medication and to believe that it would be an effective way to manage my disease long term.

If you know me, you know I’m anxious. I was anxious about this treatment, even though I successfully put a lot of energy into trusting and expecting a positive outcome. Ocrevus is a twice-yearly infusion with a loading dose split in half that you receive in two initial infusions two weeks apart. The infusions are long so I anticipated spending most of the day in the cancer center. I had a plan, I brought lunch and things to entertain myself. My mom took the day off to be with me. The staff at the cancer center were excellent. I had serious worries about getting the IV successfully and comfortably placed but that went more smoothly than I was expecting.

Every Ocrevus infusion is pre-treated with a steroid and benadryl to help prevent a serious reaction. I knew about the benadryl in advance but did not know about the steroid. In the past, my body hasn’t handled steroids particularly well. I pushed through this surprise and desperately clung to my hope that everything would go smoothly.

About half way into the infusion, I started experiencing a common response to the medication–itching in the back of my nose and throat. I was warned about this by the nurses and reassured that while the reaction is common, most people receive a second dose of benadryl and finish the infusion with no additional concerns. Knowing that I needed extra benadryl did cause my anxiety to spike so I took anxiety medication with that second helping of benadryl and waited for the reaction symptoms to pass. Sure enough, within an hour, I was able to continue and ultimately finish my first Ocrevus infusion.

The relief I felt when they disconnected the empty Ocrevus bag from my IV was blissful but short-lived. In the hour-long observation following the infusion, my heart rate and blood pressure began to climb. I was experiencing some chest tightness (a symptom that often accompanies my anxiety) and if you’ve ever been around medical professionals, you know saying something like, “I’m noticing some tightness in my chest” is a sure-fire shortcut to the emergency room. Which is where I found myself at 4:30pm on February 16th.

Now, when I say my body has not tolerated steroids well in the past, elevated heart rate is one of the things I have noticed before. I am still suspicious that what I experienced that Friday was a reaction to the steroid paired with anxiety, though elevated heart rate is a recorded symptom of an infusion reaction and I understand the necessity of being safe instead of sorry. There is no way to know exactly what my body didn’t tolerate well that day but being told I was being moved from the Cancer Center to the ER certainly didn’t help my heart rate or my blood pressure.

We were fortunately able to secure a space for me ahead of time so that I could avoid the ER waiting room. That space was in the behavioral health unit but hey, I’m familiar with that wing and have no complaints. My first round of testing included an EKG and blood work which were fortunately normal. An elevated d-dimer led to some additional excitement in the form of an urgent chest CT but that came back normal too. I was given more medication for anxiety and took my own blood pressure medication and eventually things started trending in a healthier and more comfortable direction.

My heart hammered in my chest at 135 bpm until about 8:30pm. When all the results of my tests came back normal and my heart rate finally started to dip back into the 115-120 range, I was discharged home.

During the chaos of the ER trip, I didn’t really stop to think about what my reaction to the Ocrevus would mean for my treatment. Those thoughts came blasting into my awareness like gunfire pretty quickly after getting home.

Would I be allowed to continue the Ocvreus?

If not, what the fuck was I supposed to do next?

Scariest of all was the sudden, nauseating uncertainty about tolerating other treatments. What if my inability to tolerate the Ocrevus means I am no longer a candidate for any of the high efficacy treatments for MS?

I left the Cancer Center knowing my neurologist had put my second infusion on hold. I believed for a time that maybe I could convince him it was just the steroid and get the second infusion anyway.

The Saturday and Sunday after my infusion were two of the hardest days I have had since I first considered potentially winding up with an MS diagnosis all the way back in July of 2023. In fact, that Saturday and Sunday were two of the hardest days I have had in a very, very long time. Every moment was haunted by the fear that I would be unable to find a medication that would adequately manage my disease. Every time I closed my eyes I pictured my life unfolding as one sad slump towards permanent disability and death. Until Friday, February 16th, I felt like I had good options to control this disease and I felt confident that control was possible. Suddenly having to swallow a far less certain future was not something I handled particularly well. While I’d love to blame some of the darkness and drama on the steroid, I don’t know that that’s fair. I was deeply hopeless. More than once I wished my heart had just exploded in my chest in the ER so that I wouldn’t have to face the impossible decisions coming towards me too fast to adequately weigh and consider.

On top of that darkness, my infusion experience also did some significant damage to my (admittedly fragile) relationship with my body. It was hard to walk away from the ER and not blame my body for having the response it did. For landing me in a place where I need this treatment in the first place.

The Monday after the infusion with some help from my saintly mother, I started to drag myself out of the Ocrevus hole. I forced myself to recite some affirmations. I wanted to choose things that had at least some element of truth so I could work on rebuilding my trust in my body while finding something to cling to as I pushed myself towards the next hurdle.

“I am grateful for my body.”

“I am impressed by my body.”

“My body fights. And I will fight for my body.”

In the two weeks following the infusion, my mental state has continued to even out. I catch myself wondering sometimes if there’s a limit to that… if there’s a place I can be pushed to where my brain and my body and my soul won’t figure out how to crawl back. Ultimately this time doesn’t seem to be that–and that’s something I am very grateful for.

The gratitude is creeping back. The optimism is stubbornly MIA.

I have a new treatment plan. Instead of choosing to push my providers to continue the Ocrevus, I’ve decided to listen to my body and pursue an alternate treatment. This medication (Gilenya, for those keeping track or working on a list for character name options for a new fantasy novel) comes with additional risks and potential side effects and I would be afraid of those things even if I had 6 months to research this medication. I’d be afraid because I was told the Ocrevus would work for me and I believed it would and it didn’t. So now I have to pivot (something I am royally bad at) and I have to prepare to expose my body to another medication that will disrupt a lot of my systems in an effort to control the disease actively dismantling my body from the inside out. I’ve asked some questions but there are a lot of questions I won’t have answers to until I swallow the first pill. That is not something I am good at tolerating.

My anxiety is my biggest challenge right now. I feel afraid almost all the time. I know the fear is sometimes rational and sometimes not–there are a lot of very rational things to worry about when you’re voluntarily suppressing your immune system during COVID and flu season. I feel the anxiety squeezing me almost all the time. I can still function and I can still find joy. But my anxiety is a constant and unyielding companion these days and man, is that exhausting. I don’t know if the Gilenya will work for me, I don’t know if my body will tolerate it. I will only know after I work up the courage to try and, if I find I need to pivot again, I have no idea how I will summon the energy to do that.

One thing at a time, though.

Having a plan helps. And this time around I have a back-up plan (or two) as well. But that doesn’t answer all the questions, it can’t, nothing can, and I have to figure out how to move forward without answers.

I have, however, moved forward without answers before. And although it is not comfortable, I know that I can do it again.

The songs I included in my first post were also very much the product of all the processing I had a chance to do. When I’m in these low places, it’s very hard to find things that consistently help me feel better. That Saturday and Sunday there wasn’t anything that helped me feel better. In the two weeks that followed, I honestly didn’t listen to much music. Over the past few days, though, I’ve found myself drawn to one song that I’ve included a link for here.

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"You Are the New Day"

I know that my brain offered me this song for a handful of specific reasons. Wildly, I chose to include my favorite lyric from this song on my calendar for this month only to find the same lyrics in my TimeHop the very next day–in a Facebook status from 14 years ago.

Fourteen years ago I stood on the precipice of the hardest thing I have ever survived. Before February of this year, I don’t think I would’ve hesitated to call my misadventures in 2010 the worst thing I’ve ever confronted and lived through. Thinking through it, I know that although February was hard and I won’t mince my words about it, it wasn’t harder than 2010. I survived 2010, and I will survive this too.

I’m still doing my affirmations. I’m preparing to start this new medication once the half-dose of Ocrevus clears my system. It would be hard to navigate a new MS diagnosis and treatment even if current global events had a kinder tone but I won’t lie–it’s especially hard to rebuild optimism on my own micro scale when I’m also constantly bombarded with macro-level heartbreak. I don’t have it in me to be hopeful or optimistic right now, but I’m still moving forward despite that. Every step forward brings me closer to a place where I can once again embrace hope as my philosophy, and, in the meantime, just surviving by finding comfort in the little things will be enough.

I’ll conclude this update with an important reminder from one of my favorite chefs, Jet Tila:

“You don’t always win, but you always have to try.”

[theritualofourexistence]

MMXXIII

Story time. 

The past few months have been quite a ride. As I process this particular chapter of my journey, I decided to share it with you as well. The format of this blog will be a little different than some and I encourage you to stop and listen to the songs I’ve included. Before we begin, I am safe, I am supported, and I am not seeking any sympathy—I simply believe in the power of story-telling.

On June 26th I got to see a live concert. I am not a big live concert fan but for my favorite musicians, I will absolutely make exceptions. Counting Crows got me through the first year or two of Covid and getting to see them play a small-ish venue with my dad was a special thing. They sounded incredible, almost exactly like the recordings, and played pretty much all my favorite songs. If you know me, you know I cry easily. “Colorblind” has never been on my list of favorites but by the first chorus I had tears streaming down my cheeks. 

“I am ready, I am ready, I am ready, I am fine.” 

Symptoms

The day of the concert I noticed a weird sensation in my right foot. When I stood on the hardwood floor, I got the sensation that the floor was warm—but only under my right foot. I checked with my hands—no heat. I’ve had acute on chronic plantar fasciitis for years and that heel has given me consistent trouble. I assumed the heat sensation was some sort of swelling or plantar fascia related issue and went about my day. 

On June 28th I went to see a rheumatologist for a thorough evaluation. I had been worked up previously and given the old “something is happening, but we’re not sure what” response. The exam went well; I talked about my daily pain and occasional inflammation. I liked the doctor. I was reassured that it’s unlikely that my symptoms indicate a significant rheumatological problem. 

On June 29th I lay awake in my bed in the morning. The heat sensation I first noticed in my heel seems to be climbing my right leg. When I sit up and turn to get out of bed, something feels funny. Throughout the morning, it becomes clear that my left leg is a bit unsteady. I’ve experienced similar things before, typically with hip or back pain. I’m paying attention but I’m not worried. As the day wears on, however, things seem to be worsening. I stumbled going down the single stair into the garage, I develop an occasional twitch or spasm when sitting still or lying down, but only on the left side. While unfamiliar, these symptoms don’t prevent me from doing what I need to do that day. I will monitor it. I am not worried.

Over the course of the next week, my symptoms progress. I developed the bizarre heat sensation and pins and needles with occasional numbness on the entire right side of my body. When I sit on the toilet, it feels like the right half of the seat is heated. I have significant weakness on the left side of my body—navigating stairs is a challenge and I’m unable to lift my left arm above my chest. I’m walking with a pronounced limp. Due to the twitching and jumping on my left side, sleep does not come easily. 

It's been a week, it’s time to see a doctor. 

First Appointment 

Though I wasn’t able to see my primary care doctor, I was able to get an urgent appointment on July 6th. This was the kind of appointment that you read about on the internet with a bad taste in your mouth. I didn’t feel particularly listened to and I wasn’t very happy with the outcome. This doctor ultimately ordered blood work and a brain MRI, but only after I specifically and stubbornly requested it. I later discovered that the order was placed incorrectly… correcting this mistake and getting approval from my insurance took a full month. In the meantime, my bloodwork was inconclusive, and my symptoms persisted.

Symptoms 2

During the days following my July 6th appointment, I developed right-sided facial palsy. 

I am worried.

I cannot raise my eyebrow, I cannot squint, I cannot smile. I no longer feel like me. 

The numbness and tingling advance to the right side of my neck and head and I have an odd taste sensation and numbness on the right side of my tongue. The weakness on the left side continues to affect my mobility. I develop significant vertigo. I am battling constant, heavy fatigue.

Second Appointment

On July 14th I see a second doctor, still not my primary care provider, for a follow-up. I explain the new symptoms and the unchanged symptoms. This was a better experience—I felt listened to, I felt like this provider believed me and responded with an appropriate level of concern. She ordered additional blood work (for Lyme, in particular) and prescribed a low-grade steroid to help with the physical symptoms as well as doxycycline to address any potential underlying infection. Results of the blood work were inconclusive, I am still waiting on my insurance to approve the brain MRI, my symptoms persist. 

Symptoms 3

By July 20th, some of my symptoms have started to fade. The heat sensation and pins and needles on the right have improved. The weakness in my left leg has improved. I continue to struggle to use my left arm and I develop a burning and itching pain in my left shoulder, upper arm, and side of my neck. I’ve had two episodes of elevated heart rate that have occurred at the ends of long days after standing to take a shower. Both times, my heart rate hovered around 120-130 beats per minute for close to an hour before I could get it back into my usual range of 80-100. I continue to have persistent vertigo and fatigue. I continue to experience the facial palsy. 

The only time I feel normal is when I’m driving my car. 

By the end of July, the facial palsy starts to improve. Lingering symptoms include weakness in my left arm, burning pain in my left shoulder, headache, vertigo, and fatigue. A long day or a full day seems to have a significant impact on both the weakness and fatigue. 

My first MRI is scheduled for August 10th. I get referrals to see a neurologist and the soonest appointments I can get both locally and elsewhere in Pennsylvania are for February of 2024. 

Results

The results of my brain MRI are not normal. They do not exactly provide much information either, however. Armed with my slightly-less-than-normal results, I begin the process of getting an appointment with a neurologist.

I am able to schedule an appointment with my primary care doctor for August 16th. After a lot of phone calls to local neurologists and a lot of phone calls to my doctor’s office for very specific referrals, I am able to schedule an appointment with a neurologist in a cancellation spot for September 7th. 

Third Appointment

I have an involved medical history. I trust my primary care doctor with, literally, my life. Finally being able to connect with her, explain my symptoms, get validation, and hear her opinion is a huge relief and comfort. I am motivated to keep seeking answers. 

Neurology

By the time my neurology appointment rolls around, I’ve gotten very accustomed to dealing with my lingering symptoms. I am able to work part-time. I’ve made necessary accommodations for the changes in my body. 

The neurologist orders more blood work and two spinal MRIs. I schedule an EMG of all four limbs. We talk about possible causes. I begin to process a potentially life-changing diagnosis.

Results 2

The results of my spinal MRIs are not normal. And, the surprise no one is ever planning or hoping for, they also reveal a significantly sized mass in my liver. My neurologist immediately orders an MRI of my abdomen, a referral to a gastroenterologist, and a lumbar puncture. 

The MRI of my abdomen indicates that the mass in my liver is benign, and, blessedly, offers no additional surprises. The gastroenterologist schedules follow-up imaging in the spring to monitor any changes to the mass.

Final Chapter (for now)

On October 17th I had my lumbar puncture. I developed a spinal headache and spent October 20th in the ER before getting a blood patch which thankfully offered me some relief. 

On October 31st I was diagnosed with multiple sclerosis. 

(I cannot possibly express how genuinely glad I am that my neurology office did not miss the opportunity to deliver this news on Halloween—truly perfect timing)

Today, I have constant pins and needles in my entire left arm and hand. I have constant pain and weakness in my left shoulder. I have lingering fatigue, particularly following long and busy days. I have adapted, however, and I am not afraid. 

--------

The past few months have not been easy, but I am, very genuinely, okay.

Over the last month or so I’ve been working on gratitude meditations and the feeling I have most right now is not fear or anger or sadness but thankfulness. This would’ve been impossible without the support of my friends and family. My mom has physically and emotionally carried me through the rounds of appointments and testing and results. I’m grateful for all the support I have gotten, I’m grateful for providers I trust. I’m grateful that I’ve had access to the necessary testing and treatment. I’m grateful that I’ve had 10 years of therapy to develop the tools I’ve relied upon to approach this experience in a rational and mentally healthy way. I’m grateful that my symptoms are no longer a mystery. I’m thankful that I’ve been diagnosed with a disease that is very well-researched. I’m thankful that my lingering symptoms feel manageable. I’m thankful that I can work, for a job I love, and for employers who are flexible, supportive, and understanding. I’m grateful for a partner who is patient and understanding, who offers me critical reassurance, who seems to be a sponge for all of my emotional reactivity and fear, who has offered me so much comfortable normal in the midst of so much chaos, who has not run away. 

In early July, out of nowhere, Bastille’s “Pompeii” got stuck in my head. Over the next few weeks, I embraced it as a bit of a battle hymn. I’m not sure why this song fell into that role for me… it’s not particularly optimistic as far as music or lyrics are concerned but I used it that way anyway. I listened to it often, I cried through it, I used it to carry me forward. 

At the beginning of October, I was given a remarkable gift. I hadn’t talked about the Bastille song with anyone, but most folks who know me well, know how much of an emotional connection I have to music. Without any prior knowledge or prompting, a dear friend sent me a *new* version of “Pompeii” recorded by the vocalist from Bastille and arranged by Hans Zimmer. 

I don’t know what I expected when I first opened the link, but “Pompeii MMXXIII” far exceeded my grandest visions. 

During one of the hardest chapters of my life, Hans Zimmer and Bastille gave me my battle hymn. This song somehow captures all of what I’ve felt as I navigated my symptoms, testing, and diagnosis. Zimmer turned a simple song into a triumphant promise, and I will never be able to express my gratitude that this song came into existence when it did. 

If you haven’t listened to any of the others, please listen to this.

The tone of this story is different from a lot of my posts because I struggle with including my normal self-deprecating humor when talking about something this serious. I want to be sure to say, though, that the past 5 months have included a lot of laughter and a lot of joy. And, moving forward, I can absolutely promise that my self-deprecating humor will be in full force as well. 

All through July, despite my symptoms, I was able to do work I really enjoyed assisting with an event planning business. I loved the work, my coworkers, and bosses, and I’m hoping to do more of this work in future summers.

In August I got time with my parents in one of my favorite places. Even if it didn’t look the way it has in the past, I was still able to do most of the things I wanted to do. And I found joy. 

In August I got a glorious, magical weekend with my friends and their babies. I got time in the sun and good food and laughter. I got to hold two of the most incredible creations I’ve ever seen. I got to be Aunt V. And I found joy. 

In August I got a series of new tattoos for the first time in almost a year. I got one for a favorite musician, one for a favorite comfort film, and one for a new favorite film—offering a beautiful reminder to be present. Here, I found joy too. 

This summer I fell in love with the show Steven Universe, watching it for the first time with my partner. The simple, heart-warming messages this show brought me helped me smile even when it felt impossible. We also watched all of What We Do in the Shadows… which brought me a very different kind of joy. 

In September I started designing my calendar for 2024. I love calendars. The organization, the future-oriented thinking—I just love them. I always design my own wall calendars. In the past I’ve done my favorite films, Van Gogh paintings, photos of family and friends… and I always leave space to add quotes. For 2024, I designed digital art for each of my favorite tv shows. It’s cute and I love it and doing something creative for the first time since I developed symptoms was very hopeful. And joyful. 

In September I returned to my primary job. I told my coworkers about what I was dealing with and I was reassured by their gentle support. I proved to myself that I can do my job and do it well despite the changes to my brain and body. I am learning my limits. I find joy listening to audiobooks and decompressing during my commute, in time with my coworkers, and in the job itself. 

In September I navigated mom and I through a plumbing emergency. I was able to address the issue, get the necessary help, and facilitate a resolution in a timely manner at a busy time. My capacity to rise to this challenge and problem-solve under pressure brought me joy. 

In September I baked. I reveled in returning to an activity I am still good at. Trusting my body to recall these skills and maintain the stamina needed to complete the task up to my own expectations brought me relief and joy. 

In September I watched a lot of football in my comfy clothes on the couch with my cat and my mom. There is no place I’d rather be. Being present and basking in the comfort of these things brought me joy. 

In October I got my hair cut and colored. Having a pop of something vivid helps me feel more like myself again. This brings me joy. 

In October I did my Christmas shopping. Getting gifts for people is one of my favorite things to do. Though my budget is a little sad this year and my holiday season won’t look the way it has before, I am so grateful that I have had the opportunity to shop for the people I love most. I still have some shopping to do. This has and absolutely will continue to bring me joy. 

In October I watched the leaves change. Autumn is my favorite season and while I could always use more crisp sunny days with a light breeze, I made sure to soak up every moment of that that I got this year. I put on cozy clothes and got out warm blankets and loved the colors and the smells of my favorite time of year. This brought me joy. 

In October I purchased an entire wardrobe’s worth of micro-fleece lounge clothes with Grinch prints and patterns in preparation for my appropriately themed holiday season. It will be hard to measure the joy I find in having and wearing soft, fully matching Grinch outfits day after day when December rolls around. 

In November I will get more football time, more friend time, more family time. I’ll get to celebrate Christmas early with a tree and decorations and good food and gift exchanges. I’ll get to start a new medication to help with pain management and fatigue. I’ll get to do more of a job I love and listen to more excellent audiobooks. I’ll get the gift of processing my new diagnosis surrounded by love and comfort and safety and security. I’ll get more date nights with more Steven Universe, though we only have the movie and epilogue series left. Then we’ll move on to Fionna and Cake, Big Mouth, and our annual rewatch of the Lord of the Rings Extended Editions—which I think may be particularly special for me this year. 

In all of the months since I developed symptoms I’ve read books I’ve adored and listened to music that has kept my heart beating. I’ve spent golden, precious time with some of my favorite people. I’ve impressed myself with my capacity to be patient and present. I’ve found joy absolutely everywhere. 

I have had really hard days and I have lived through a lot of fear—but as unfamiliar as my symptoms have been, fear… well, fear is familiar. And that’s something I’m grateful for too. I know there will still be things that make me afraid… new providers, new medications, new treatments, new symptoms… there will be new challenges and for as long as I’m alive, I expect “new” will be scary. But I’m also confident. I’m confident that I can face that fear. I will keep being present, I will keep relying on my support, I will keep basking in gratitude, and I will keep finding joy. 

I have MS, but I’m still me. And I’m really grateful for that too. 

[theritualofourexistence]

Clarity in the Cancellation Crusade

After posting multi-paragraph comments on a couple different things that have popped up in my feed recently, it seemed like I should probably just sit down and write this out.

“Cancel culture.” Crazy shit, right?

The recent onslaught of cancellations includes Mr. Potato Head, Pepe Le Pew, a handful of Disney movies (Peter Pan, Dumbo, The Aristocats), and *audible gasp* Dr. Seuss. The Muppets also got a newfangled Disney+ content warning, though I’ve seen significantly fewer headlines about that.

The thing that inevitably happens when the news media decides to publish a headline about a children’s toy or book being “canceled” is a veritable parade of social media complaints about how sensitive people have become. I saw this particular post over 10 times in the period of a couple hours one day last week…

The question I’ve been asking recently when I see posts like that is this: “Who do you think cancel culture is?”

Because “cancel culture” isn’t real. In the majority of the cases currently making headlines, the choice to remove a character from a movie or stop publishing a book has been made by the company responsible for that character or book… and that is very much a normal thing companies can choose to do.

No one I’ve posed the above question to has overtly mentioned “Libtards,” but it’s certainly implied. People who haven’t read a Dr. Seuss book in 20 years are now suddenly all up in arms (literally?) because “the Liberals” are coming for “And to Think That I Saw It on Mulberry Street.”

The Liberals are not coming for Dr. Seuss. They do not care about a potato toy. Also, nothing is happening to the Cat in the Hat. I repeat: NOTHING is happening to the Cat in the Hat.

The choices to stop publishing that book and to market a vegetable toy in a less gendered way were made by the companies responsible for producing those products… not the Liberal “cancel culture” ghoul. In fact, it’s really, really hard to find public outcry about any of the things that have been recently “canceled.” There was a single NYT article that recently discussed the problematic nature of the Pepe Le Pew cartoons… that said, Warner Bros hasn’t aired that show in decades and it is not clear whether that article had anything to do with the skunk’s scene being removed from the new Space Jam movie.

Even growing up I remember things like political correctness needlessly becoming a partisan issue. When we fall into that media trap, all we’re doing is watering the plant of an already poisonous and ineffective two-party system. Be bigger than that temptation. Push back against media intended to further divide Americans. If something stinks, it’s probably rotten. Sure, there are certain topics that fall under the umbrella of political correctness that sound alarm bells for censorship issues… but didn’t everyone’s mom tell them that if they didn’t have anything nice to say, they shouldn’t say anything at all?

Again, though, the most important thing to remember about this recent wave of “canceling” is that censorship concerns are moot. A person who owns a thing is legally allowed to do all the censoring they want. It’s not the government that has decided to stop publishing 6 books written by Dr. Seuss… if it were, we could have the censorship conversation. These changes aren’t happening because there is a Democrat in the White House. They’re happening because the company who makes these products, has for whatever reason, decided to take a different approach.

In the case of the Dr. Seuss books, Dr. Seuss Enterprises re-evaluated their choice to publish 6 books based on racist themes and images. I have only heard of two of those six. The image below is, in my opinion, objectively problematic:

The fact that a major company behind such a well-known name has seen that something is problematic and has decided to stop publishing the books containing overt racist images is awesome. It sets a great example that we can all learn from. Humans have an amazing capacity to learn… that’s one of the only reasons we are in charge here on Earth. If we fall on ice once, we are often more careful on ice the next time. When we see that something is racially problematic, it’s a good thing if we can take action to get that thing out of rotation. More on that later.

Fundamentally, what is happening right now in Media Land is gross sensationalism.

“Cancel culture” isn’t real. Should people face consequences if they say or do racist things? Yes. We should all agree on that. Should we stop publishing books that perpetuate racist stereotypes? Yes. There are plenty of non-racist books that provide an education about racial differences without the added (exceedingly inappropriate) zing of Asian characters being painted yellow and African characters being given monkey features.

If you’re not convinced that some of Dr. Seuss’s material is racially problematic, I encourage you to pop on over to Google to check out the series of ads he did for FLIT in the 1930s. Yes, it was the 1930s. In the last 90 years, we’ve learned that images like that are not okay… let’s use that knowledge to let old racist graphics die.

Still can’t accept that “cancel culture” isn’t real? Still feeling like there’s something in the air now that is different and worse than before?

Okay, then, let’s consider it further.

Things have been “canceled” by people for millennia… this isn’t new. Being all for cancel culture when Colin Kaepernick kneels for the anthem (a perfectly legal form of peaceful protest considered respectful by many veterans) but opposing cancel culture when it’s threatening to eliminate an obviously racist thing is not exactly a moral stance. Burning your Nikes in the street but then turning around and spending $400 on a copy of “If I Ran the Zoo” on eBay after Dr. Seuss’s own family has pulled it from publication due to racist imagery is… silly.

The same people who seem to be so vocal about “cancel culture” now are part of the same communities who tried to cancel plenty of things in my lifetime. Things like trick-or-treating, Harry Potter, school dances, books and movies with LGBT+ characters and themes…

History absolutely bubbles over with things that have been canceled… often for good reason! Some examples that come to mind: 

DDT

the Catholic Church (see the 16th century Protestant Reformation)

doing our everyday poopin’ in outdoor holes

polio

hoop skirts

phrenology (new science cancels old science like every damn day)

Ford Pintos (not to mention cars without seatbelts)

telegrams and rotary phones (replaced by easier and better ways to communicate)

lead paint

asbestos

Four Loco

Y’all remember when we all did the ice bucket challenge to cancel Alzheimer’s?

Learning that something is problematic and moving past it is LEARNING… not cancel culture.  Learning and growth are good things. We all benefit from them.

Another thing worth commenting on from that Cat in the Hat post that circulated in my Facebook feed: why do we consistently demonize sensitivity? Racism feels like something we should all be sensitive about. If being sensitive about something results in meaningful change and a less hateful country, isn’t that… good? Why do so many Americans seem to place so much value on their “freedom” to hurt others?

And don’t get me started on comparing this stuff to Cardi B. It boggles my mind that that’s happening at all. Why is there suddenly so much outcry about one song that features female genitals in a literal ocean of songs that feature male genitals. I grew up knowing every word to songs about sex well before I even knew what sex was. Your kids are only desperate to listen to WAP because they know it makes you squeamish. And take a second to think about why it makes you squeamish. Genitals are human and scientific and we literally all have them. If you have more of a problem with WAP than with any of the other 10,000 songs about dicks and sex, you need to spend some time examining why that is.

Here’s another post I’ve seen bouncing around the social media feeds:

Something about this is just plain hilarious to me. Like what are racism and rape culture if not THE REALEST issues? This country’s problem with systemic racism runs so, so deep and is reflected very plainly in centuries of cold, hard numbers. It’s not that I *think* systemic racism is a problem. The data very clearly shows that regardless of what white people think about race in this country, systemic racism absolutely IS a problem. Racism and rape culture, arguably at the root of the most recent canceling spree, are not just real issues, they’re real American issues. They’re cultural issues. And solving cultural issues is not easy. We know that these issues have been passed down through the generations so maybe changing children’s toys and books and shows isn’t such a bad thing to try. There is SO much work to do to address racism and rape culture in the United States, but small steps are still progress.

If choosing to stop airing a show that blatantly perpetuates rape culture means one less young person is stalked or assaulted or raped, that’s worth it, no? What if that one young person who doesn’t become a victim is your daughter?

If choosing to stop publishing a book with racist themes and images leads to even one kid understanding more about the nuance of race in America and the breath-taking extent of white privilege, that’s worth it too.

Would I rather the media spend time and money to bring American attention to bigger issues associated with this nation’s racism and rape culture? 100%. There are ENORMOUS fish to fry. Dr. Seuss is not an enormous fish. Potato head toys are not enormous fish. Pepe Le Pew is not an enormous fish. They’re not even big fish. They’re small. They’re tiny fish. They’re anchovies. But frying some fish is better than frying no fish.

Canceling Pepe Le Pew is not hurting anyone. Warner Brothers owns Pepe Le Pew. Warner Brothers owns nearly everything; they are not hurting for money. And canceling Pepe certainly isn’t hurting American kids. There are plenty of other kids’ shows to watch that are significantly less problematic. Just because you watched Pepe Le Pew and went on to be a properly respectful adult doesn’t mean there aren’t other kids out there who did internalize a harmful disrespect for consent. No, Pepe Le Pew probably isn’t single-handedly responsible for anyone’s decision to stalk or rape anyone else. But could a show reinforce the groundwork that ultimately leads a kid down a path where he is unable or unwilling to respect the boundaries of others? I mean, it’s not the craziest thing I’ve heard this week.

Canceling six total Dr. Seuss books that are already pretty obscure is not hurting anyone.

Changing the name of an already genderless potato toy to reflect that genderless-ness is not hurting anyone.

A brief recap: racism and rape culture are very real, very American issues.

If the decision to stop doing a thing doesn’t hurt anyone and may even save someone some hurt, why does that decision bother you?

Also, in all your frantic Facebook posting, make sure you are differentiating between “cancel culture” and consequences. When the media tosses around the phrase “cancel culture” it has this tone of finality that is, plainly, not realistic. Fads and trends move so quickly in the internet age that the idea that a group of people could “cancel” something permanently is just not possible. People who do or say racist things, though, should face consequences. People who do or say transphobic or homophobic things should face consequences. Consequences are one of the only ways we learn to do better. And again, that’s not my opinion, it’s science.

One of the consequences that can have the most impact is, you guessed it, losing money! In this capitalist hellscape, money talks. Boycotting and choosing how we spend our money are some of the most engaging ways to combat racist and homophobic garbage. When you have your temper tantrum because the company who owns a book with overtly racist imagery decides to stop publishing that book, that speaks volumes about your priorities. If you respond to that company’s decision by buying the book in question on eBay for $400, that speaks even louder volumes. What are you doing? WHY are you doing it? I’m guessing you don’t even know, and you should probably spend some time thinking about it before you flush away a chunk of your stimmy on a freaking RACIST KIDS’ BOOK.

All actions have consequences. All of our choices never affect just us. How we vote affects other people. How we spend our money affects other people. Spending our money on things that are problematic perpetuates the problem… whether it be racism, rape culture, homophobia, or transphobia… or so many other things this country desperately needs to address.

It’s human to not like change. Change is going to happen, though, regardless of whether or not we’re comfortable with it. In the information age, we have a remarkable opportunity to steer that change. Leaving behind racist relics is change, so it may be inherently uncomfortable. But change that moves our country away from racism and rape culture is GOOD change.

I am begging you. Use critical thinking… if you’re seeing a headline about something being canceled, look up WHY. Some of these headlines are absolute bunk… they’re shared just to get people all riled up and create American division. However, just like we *should* cancel lead paint, a children’s book with overtly racist images shouldn’t be published anymore and it’s weird if you disagree with that. Disagreeing with that decision, as silly as it may seem, perpetuates racism. I know how triggered y’all can get when someone suggests you might be perpetuating racism, but it is what it is. Do your research. Don’t spend your money on racist garbage. Be better.

I feel like this post is me just barking the exact same thing in different ways, but I also feel like there is so much more I could say.

I’ll leave you with this:

What will it take for Americans to weigh the threats of racism and homophobia the same way we weight the threat of lead paint? If it’s a matter of costing lives, well, the numbers speak for themselves.

[theritualofourexistence]

Odes to Old Gods

I started this year intending to journal about things I survive. Then at the end of the year, I could look back on my challenges and think about them in a more positive way--wow, look at what I overcame! The plan was to document everything, both good and bad, so that I could think about them more as experiences and lessons learned than as... good and bad. 

Needless to say, I stopped keeping track of those things in April. 

Earlier this month, I pulled out the journal again to update the list. I ended up quitting on that too. 

I do think, though, that in a less chaotic year, thinking about my life this way would be good practice. So, here I am, sharing my list with you in the form of an end-of-year, wrap-up blog post. 

A few quick caveats: 

This year was hard for literally everyone except maybe Jeff Bezos. 

It is not healthy to compare challenges or struggles or suffering.

I am not sharing this because I am looking for sympathy... I believe that being vulnerable is a very important part of the human experience but we can all also use a reminder that we never really know all of what anyone is experiencing. We shouldn’t need that reminder to treat others with love... but the older I get, the more I think those reminders might be necessary.

Things I have survived in 2020:

- A bit of a stalking experience in January which has since been resolved.

- Losing my job, hunting for a new job, securing a new job, training for the new job.

- My first Harry Potter tattoo for my ten-year tattooiversary.

- The fires in Australia.

- An absolutely wonderful trip to NYC with my dad when I got to see both Beetlejuice and Hadestown and have an enormous strawberry cheesecake milkshake from Junior’s. 

- Losing Kobe Bryant.

- Parasite absolutely CRUSHING the Oscars.

- Having a really, really good visit with my grandparents in March before all hell broke loose. 

- Weinstein being convicted and sentenced.

[Everything after this point happened during a global pandemic.]

- Losing Grandmom. I was unable to attend her funeral and still have not had the chance to grieve this loss with my extended family. 

- Losing my health insurance.

- A Zoom party for my Grammy’s 80th birthday.

- Losing Breonna Taylor. And George Floyd. And so, so many others. This is the first year I have really committed to understanding the current race-related issues this country faces and BOY, do we have work to do.

- The stress but success of orchestrating a safe family trip so that I didn’t have to go an entire year without seeing my brother.

- Losing my shifts at my primary job due to virus-related concerns.

- Countless other family happy birthdays over Zoom.

- My 60-year-old mother returning to work face-to-face with a student population that largely ignores all virus-related guidelines despite her working tirelessly for months this spring to offer UHS providers an adequate work-from-home option. 

- Being diagnosed with hypertension.

- A nightmarish friend trip. Despite our best laid plans for a safe and healthy visit, Mother Earth decided to trap me 90 miles north of my best friends for 4 days. I eventually got to see them for about 12 hours and honestly, it was worth it. That is the only time I’ve gotten with them all year.

- Losing Ruth Bader Ginsberg.

- The selection of Amy Coney Barrett to the Supreme Court.

- Our sweet girl Clio being diagnosed with a seizure disorder and then coming down with a life-threatening upper respiratory infection. 

- Learning that my grandmother would be voting for Trump in the 2020 election.

- The actual election.

- Losing Rooster, my sweet, sweet boy.

- Learning that my uncle has been diagnosed with esophageal cancer.

- Missing Thanksgiving with my extended family.

- Getting really excellent holiday gifts for my favorite people.

- Missing Christmas with my extended family.

- Safely spending some holiday time with my immediate family.

That is FAR from everything. But I don’t have the energy? Capacity? Time? to sort through everything.

Here are the things from this year that I am still currently surviving:

- A global pandemic! And all the associated chaos. With my asthma and high blood pressure and obesity, I am considered high risk and am still not able to safely return to my primary job. 

- Hypertension! More on this later.

- Grieving Rooster. In the days after we said goodbye, I wrote a memorial that I will eventually share here. Psychology has recently analyzed data suggesting that losing a pet can be equivalent to losing a relative... I have never felt grief like this. It’s been over a month. I cry every night. 

- Managing Clio’s health. She is still adjusting to her seizure medication, which she gets twice a day, and is still on medication to help with lasting symptoms of the respiratory infection. She is fussy about food and her weight fluctuates a lot week to week. She is also a feral rescue who has only ever been handled by me, my mom, and our vet. If mom and I are ever going to vacation together again, we will need to find someone who can manage catching and pilling her twice a day... no easy feat. Fortunately, at the moment, vacations aren’t really a thing for either my mom or I and I am working hard to approach these concerns in a cross-that-bridge-when-we-come-to-it way.

----

This year has been overwhelming. The last two months alone have been overwhelming. And they would’ve been overwhelming without the added spice of a global pandemic. The number of Americans we have lost to this virus has doubled since I last posted here in mid-August. Some time this week we are likely to reach a point where we’re losing 4,000 Americans per day. PER. DAY. This year has been overwhelming.

----

There were some good things this year, of course. I am so, so thankful for all the time I got with my immediate family and the very brief but vital time I got with my friends. Fortunately I am only ever a text away from my closest friends and we are able to message pretty much every day. I am also extremely glad to have found a place in the fantasy enamel pin community. The family I’ve found in pin-land has carried me through some of my lowest points this year. I spent more time in view of the ocean than I typically do in a given year... even though much of that time was still riddled with anxiety. I did art this year. I read books this year. Some really important ones, in fact. If you read nothing else in 2021, read The New Jim Crow. I also got tattooed! I’m going to include those here because I think the significance of each reflects something interesting and important about all I have survived and am surviving this year.

----

In January, I got my first Harry Potter tattoo! My favorite quote from the entire series is delivered by Hagrid during the Triwizard tournament:

”What’s comin’ will come, and we’ll meet it when it does.” 

I got that incorporated into a tattoo. In January. 

Also in January I got a “Prisoner of Donuts” tattoo... because life just wouldn’t be manageable at all without donuts.

In March, I got a bird of prey carrying a book to represent one of my all time favorite poems, “On Thought in Harness” by Edna St. Vincent Millay. The final lines of that poem:

“Soar, eat ether, see what has never been seen. Depart, be lost, but climb.” 

In July, I was able to safely navigate getting a tattoo that symbolizes the saga told in The Lord of the Rings trilogy. LOTR is my first and oldest fandom and the story is still so, so important to me today. The lessons I learned from Tolkien when I was a kid also carried me through some of my hardest moments this year.

Also in July I got a Plumpy tattoo. That’s right. Plumpy. From Candyland. If you haven’t played the game in a while, you may not remember Plumpy. He’s one of the first characters you meet on the game board... and one of the worst cards to see when you’re close to winning the game. You could be three damn squares from the finish line and pull the Plumpy card and back to the beginning of the board you go. Plumpy is a really great reminder that even when we have no choice but to lose ground, we can gain that ground back again. And hey, once you pull the Plumpy card from the deck, you likely won’t see him again for a good long while. 

In October, I was able to safely navigate getting my second Harry Potter tattoo. Neville has always been one of my favorite fantasy characters and I chose to carry him with me permanently. His courage, despite so, so much bullshit, inspires me every day. I also got a nautical tattoo for my mom’s ancestors who came to this country and fought in the Revolutionary War. Just as my family has a long and proud history of fighting for what matters, I too will carry that banner, even if it looks very, very different in the modern age. My third tattoo of the appointment is a cuckoo holding playing cards, a nod to one of most important stories I’ve read: Ken Kesey’s “One Flew Over the Cuckoo’s Nest.” This book has informed not just my personal journey with mental illness but my passion to work in the field as well. My final tattoo of my October appointment, less than a week before the 2020 election, is a weeping Lady Justice. 

----

This year has made me look critically at things I very comfortably ignored for a long time. I would hope that it has done the same for most of you. Very little if any of this year was easy for me... but the most important lessons are never easy to learn. I’ve spent this year more worried and more angry than I’ve ever been before... and all I hope to do moving forward is use that fear and that anger to make this country, this world, a better place. Miss me with your resolutions this year. Every single day we should prioritize surviving and treating others with understanding and active love. I worked hard to do that this year and I will continue to work hard to do that every day. I’m proud of the work I’ve done. And in case it wasn’t clear, I’ll be dragging as many of you as I can on this journey with me. If you really feel the need to make a resolution this year, resolve to learn. Resolve to understand. Resolve to read The New Jim Crow and then TAKE ACTION. Take action with your votes and your voices and your money. Resolve to act.

----

This year wouldn’t let me escape it without being put on blood pressure medication, despite my best efforts to lower my blood pressure without it. Although I had gotten back down into a healthy range for a few weeks, RBG’s death and the landslide of utter shit that followed that completely wrecked all the progress I had made. I’m not happy about adding a new medicine to my regimen. I’m not happy about adding a new chronic diagnosis to my already lengthy laundry list. I did not expect 30 to look like allergy pills and three daily moisturizers and foot stretches and Metamucil and acid reducers and migraine medication and iron supplements and six prunes a day and chronic pain and blood pressure medication... but here we are. I’m exhausted from working so hard to be healthy just to have all that work not be enough. I feel very much like my body is giving up on me... and that is a feeling I am struggling with a lot right now. My soul is a vibrant but powerless passenger in a car speeding towards the edge of a cliff.

I’ll keep trying though. I start my new medication tonight. Hopefully it helps. Hopefully the side effects are manageable. I don’t really feel like I can handle much more... but I guess we keep going until we can’t.   

----

I have no expectations for 2021 to be better. I don’t have much hope for it to be better either. This vaccine will saves lives and that’s really good news. But a lot of other things will be difficult, will stay difficult, will become difficult. I’m going to try to keep fighting, and I hope you do too. 

“What’s comin’ will come, and we’ll meet it when it does.” 

[theritualofourexistence]

[hyper]tension

There are so many things I could be writing about right now. 

I’ve chosen to stick with one of the things I know best for this post.

Did you guess “body image issues and the problem of narrowly defining the concept of health?” 

If so: a cookie for you! 

A handful of pictures popped up in my Timehop from 12 whole years ago that gave me pause the other day.

Sometimes when I see older pictures of myself I am overwhelmed by how different I look now... in a bad way. I see myself in those pictures as thin and beautiful and I see myself now as a sausage monster stuffed into bike shorts. 

The more I sit with and work on my body image issues, the more I have noticed healthier thinking habits developing. Let me be clear, this has been an incredibly slow process. But seeing those changes is something I am really encouraged by... and it makes the every day body image fight have some measurable value. 

I can say with confidence that, at 200 pounds, my body image is currently the best it has ever been.

That has nothing to do with the specific number on the scale and everything to do with working really hard over a lot of years to understand that neither “beauty” or “health” are inherently defined as “thin.” A fundamental pillar of that understanding is that you cannot separate mental health from the concept of general health. 

Mainstream culture does this. 

Mainstream culture wants you to believe that it’s your weight or your BMI that determines whether or not you are healthy.

That is bullshit. 

Here are the pictures of me from 12 years ago. We were moving my high school boyfriend into his freshman dorm for his first year of college. I don’t think any of the people in these photos will mind me sharing them in the context of this blog post. 

I am *THIN* in these pictures.

I am 17.

Apart from a very clear warning sign that I was already developing horrible posture, I noticed a couple of things right away about these pictures when I was looking at them the other day.

My shirt is a size small or extra small. 

I am holding my arm across my stomach in the fourth picture because I do not think I am *thin enough* to be wearing that shirt. 

I may have been a thin 17-year-old. But I was not healthy.

I was physically fit.

I played soccer for three out of four seasons of the year.

But I was not healthy.

I know I wasn’t healthy because I was about to embark on my senior year of high school during which I would, at times, only allow myself one and a half meals per day. Sometimes that one meal would be pasta. Other times that one meal would be a bag of dark chocolate peanut M&Ms and a Mountain Dew. Other times it would be a gallon of strawberries. Other times it would be a family pack of Twizzlers.

My body in those pictures might look healthy. 

But appearance is not an appropriate indicator of health. 

The two times in my adult life that I have been the thinnest have also been the times in my life where I have struggled the most with body image and disordered eating. 

After I escaped the abusive relationship of my freshman year of college, I gained around 20 pounds.

The following summer, I exercised for an hour every day and ate only pickles and Greek yogurt (separately, of course, don’t be gross). 

I lost 30 pounds.

That was also not healthy.

Fast forward a handful of years to 2015. 

I start an anti-depressant. 

Over the course of the next two years I gain around 50 pounds.

Today, in the spirit of full disclosure (and because the numbers don’t mean shit), my weight fluctuates between 190 and 200. 

I am obese.

A mathematical algorithm used to determine BMI has labeled me “obese.” 

My clothing sizes vary day to day thanks to IBS-related bloating but I’m somewhere around a 14-16. 

Do you know the cut-off for plus sizes? 

It’s 14. 

So, I am an obese, plus-sized woman.

The numbers aren’t very polite, are they?

Within the last two years I was diagnosed with severe iron-deficiency anemia.

I committed to correcting that with a number of lifestyle changes including taking supplements and adding iron-heavy foods to my diet. I took Vitamin C to boost my absorption. On days I took the supplement I had no coffee, no tea, no dairy, and no acid-reducer meds. In 6 very committed months, I resolved my iron issues, for the most part. We have since learned that the daily stomach medicine I take may be affecting my iron absorption so, although I am no longer taking supplements, I am taking a daily vitamin to help maintain a healthy level of iron. 

That story is about health.

I had a health issue and I developed a strategy to resolve the issue, being sure to consider my mental health as well. 

I have worked really, really hard to consider my HEALTH instead of my WEIGHT.

This obese, plus-sized woman exercises for around an hour every day. She does not drink alcohol or soda. She is aware of what she eats and is careful to eat when she’s hungry and stop when she’s full. 

One of the ways I know my thinking is healthier is that when I look at bathing suits on Target’s website, I have started to consider their plus-sized models “normal.” 

The average size of an American woman based on the most recent data is between sizes 18 and 20. 

I spent over twenty years unable to see an average-sized woman as beautiful.

Even though the clothing industry has labeled me “plus-sized,” if anything, I am “slightly less than average-sized.” 

In this post, I’m sure my thinking seems sort of piece-meal and disconnected.

In my head, thin-ness and health and body image and eating and exercise and cultural interpretations of beauty are all smashed into one big Frankenstein’s creation. 

For a long, long time I did not consider plus-sized or average-sized women to be beautiful solely because they were not thin.

When I was thin (and not healthy), I know that I considered people of that size, the average size, to be unhealthy.

I am at a point in my life where my habits are the healthiest they have been and my mental health regarding my body image is also the healthiest it has been.

And I weigh 200 pounds. 

You cannot look at a person and have any idea how healthy they are. 

You cannot look at a BMI or a number on a scale and judge a person’s health accordingly. 

I have worked with people who are suicidal who are thin and people who are suicidal who are not thin.

Health cannot be separated from mental health.

Can you be too thin? Absolutely. Your body needs a certain amount of fat and muscle to function properly. Can you be too big? Absolutely. Risks for all kinds of delightfully chronic and fatal conditions increase with weight gain.

Can you be big and be healthy? Yes. 

I know because I am those things.

If you exercise, if you are aware of what you eat and are careful to not over-eat, if you get the vitamins you need, if you prioritize balancing mental health and physical health, if you get enough sleep, “healthy” is within reach for everyone. 

If I ever write a book, it will be about balancing mental health and physical health. Because for basically my entire adult life, I’ve focused on one or the other and that does not work. I promise that if I do write a book, it’ll be better organized than this zig-zaggy blog post.

We have to push back against the cultural tendency to keep mental health separate from our definitions of general health. 

We have to push back against the cultural tendency to define health by how a person looks.

You are not “healthy” if you are not physically healthy.

But you are also not “healthy” if you are not mentally healthy.

And sometimes, especially if you have a tendency toward body dysmorphia or disordered eating, the healthiest option is not to focus on weight loss or buy into a fad diet plan. 

I am not trying to lose weight.

I am trying to be healthy.

And, you could argue, I’m not trying to lose weight BECAUSE I am trying to be healthy.

Trying to lose weight feeds mental illness for me. And that is not healthy.

This blog post is brought to you by a lot of years of working really hard to understand myself. My specific approach to managing my health may not work for you, but I challenge anyone reading this to take a moment and think about whether or not you are giving balanced consideration to physical and mental health. Because, even if our specific situations are different, balancing mental and physical health is the only path to being healthy. For me, for you, for everyone.

This blog post is also brought to you by a new health hurdle that has been laid in my lap over the past few weeks.

I have high blood pressure.

Chronic hypertension runs in my family, so I have a predisposition for high blood pressure. I have not been aware of having it at all in the past but thanks to my mom’s new blood pressure machine, I am aware of it now. 

Learning that I have high blood pressure instigated a bit of a breakdown. 

For a lot of the reasons I have already mentioned.

I’m working really hard to be healthy by balancing my mental and physical health. So why, if both those things are headed in the right direction, does my body not seem to agree?

Well, genetics will do that.

In the name of health, I scheduled an appointment with my doctor. We talked about the typical “lifestyle changes” that would be recommended for someone my age with high blood pressure.

I am already doing all of them. 

There are things I cannot control, however, that are affecting my mental health right now. I am carrying a lot of stress about the upcoming election. I am carrying a lot of stress about Black people being disproportionately arrested, charged, jailed, and killed by police as part of a system of oppression that I would very much like to have a part in dismantling. I am carrying a lot of stress about the pandemic that has killed 170,000 Americans. I have spent 7-8 years learning how to manage my stress. Those tools were not intended to work in situations like this.

So, my doctor and I made a plan to monitor my blood pressure, to try do more meditation and progressive relaxation, to eliminate processed snacks from my everyday diet (on occasion is still allowed), and to start doing some basic weight exercises with my cardio. 

Blood pressure is a really good example of why a healthy approach requires balancing mental and physical health. 

I’ve checked the physical health boxes for blood pressure management. 

And things beyond my control are preventing me from checking the mental health boxes for blood pressure management.

And also, genetics.

With the help of my doctor, I’ve developed a plan that considers both my physical and mental health and only time will tell if that has an impact on my blood pressure. For what it’s worth, my doctor is optimistic. Part of the reason my doctor is optimistic is because I am healthy.

To clarify, being healthy does not mean that my IBS has gone away, it just means I am treating my IBS with diet and medicine. 

Being healthy does not mean my anxiety has gone away, it just means I am in control of my anxiety.

I would not be healthy if I was unable to manage my IBS. 

But I would also not be healthy if I was unable to manage my anxiety. 

I would not be healthy if I had not figured out the value of balancing physical and mental health. 

Just like I found a way to overcome my iron-deficiency anemia, I will find a way to overcome my high blood pressure. It may require new medication and lifestyle changes, but by giving adequate consideration to both my physical and mental health, I have no doubt that I will eventually find a healthy solution to push myself over this hurdle as well.

Gonna wrap this up with a poor quality mirror-selfie I took this morning when I tried on a new bathing suit. This is a (headless) picture of a 200-pound, obese, plus-sized, healthy person.

[theritualofourexistence]

One challenge of white ally-ship in the age of BLM.

In the age of Black Lives Matter, how I’m hoping this chapter of life gets labeled some day, being a white ally has presented new challenges. I’m working through these challenges in the only way I can, listening and learning from Black and POC voices. There are maybe two things I’ve been hung up on consistently over the last few days and I think I had a bit of a breakthrough. Part of me wants to write this out just to write it out, but I would be lying if I implied this post was only for me. If you consider yourself a white ally, I suspect you’re meeting challenges too. And maybe some of what I’ve landed on can resonate with you as well. Most of my communication with others is happening through social media and messaging apps. This is for safety reasons, of course, and because I genuinely believe social media is a tool we can use for change. I’m not here to have that fight with you today. In my various feeds, I’ve seen a handful of white people say things like, “well, _____ is Black and he’s not out marching/he believes all lives matter/Blue lives matter/he’s a cop and he says this is all bullshit.” Etc. This is a challenge because what is happening right now in this country does indeed require white folks to listen to Black and POC voices. In a lot of cases in my feed, I don’t ever get to interact with the Black people these white people are speaking for. Maybe they don’t exist. But I don’t consider that a fair assumption. So, for the sake of the argument, let’s say they do exist. I will note here that none of the Black or POC voices in my feed have said anything remotely close to these things that I’ve heard reiterated by white folks as excuses for their silence or opposition. But, as I said, for the sake of the argument, let’s say they exist. It hasn’t seemed appropriate for me to preach listening to Black and POC voices and then shut down these white people when they do just that. So how can I, as an ally, navigate this sticking point in a conversation I believe may have some impact of value? Keep in mind, I know I’m not magically changing any minds. But I do have the tools, mostly communication skills, to share a new piece of information in a way that may be understood for the first time in another person’s life. I believe I can do this because I’ve done it before in other contexts... but again, not here to have this fight today. So, when a conversation about the protests in this country goes in this direction, how can I, as an ally, proceed? Here is a thing I know that is true of all humans, regardless of race or culture. We all experience things differently. Your experience is never exactly the same as someone else’s. This is because even if we survive the same event, our points of view differ, as do our backgrounds and philosophical/spiritual beliefs and our neural processing techniques. No two people will survive the same trauma in the exact same way. Now for the hypothetical. Let’s say ten people experience the same event. Of these ten, six eventually speak out. Though they lived it differently, each of the six experienced trauma during their shared event. Maybe some of the six seek therapy or other psychiatric treatment to overcome their trauma. Maybe some of the six find healing in telling their stories. Maybe one of the six turns to alcohol to self-medicate. In a situation like this, it will never be appropriate to say to those six individuals, “it couldn’t have been that bad, those other four people were there and they are fine, so you should be too.” First of all, we don’t know for sure that those other individuals are fine. Maybe those four are processing things differently. But yes, it is also possible that they weren’t traumatized by the shared experience. Even if they weren’t though, we don’t get to be the people that decide that the four are “right” and the six are “wrong.” In any situation that statement is true, but it’s especially true when we didn’t witness the same event those ten people did. Each perspective of those ten people deserves to be heard and valued. But it’s vital that we learn to value one without devaluing the other. 

In a situation where four people are saying, “no really, everything is fine,” and six people are saying, “I am not okay, and things are not fine.” It is our responsibility to hear them all. After we hear them, though, what must we do next? Well, if those four people really do believe that everything is fine, then maybe we don’t need to do anything else for them. If the other six people ask for help, though, we help them. 

I would never imply that I know anything at all about what it is like to be Black in this country. I do know what it’s like to be traumatized and to not be believed. Nothing in my comfortable and privileged life has been as physically and emotionally challenging as telling my story and having the people in my life refuse to hear my truth. One of the greatest and most simple gifts we can give to others is simply believing them and validating their experiences. 

If the event in the hypothetical is being Black in America, obviously not everyone will respond to that the same way. Not everyone will be presented with the same foundations, backgrounds, choices, and experiences. 

Is that metaphor clear? 

Black outrage is not hard to find right now. If you’re not seeing it, you’re choosing not to look. It’s our responsibility to look. And then it’s our responsibility to listen and change our behavior in a way that contributes to their fight. 

This metaphor is far from perfect. But it has helped me clarify my thinking and maybe it’ll do the same for you. 

Some of the most important things that are not included in this metaphor are the numbers. 

The numbers make it clear that Black outrage is justified. 

The numbers make it clear that Black people are disproportionately beaten and killed by police. 

The numbers make it clear that Black people are disproportionately incarcerated, often receiving harsher sentences than white folks for the same charges and crimes. 

The numbers make it clear that Black people are disproportionately given the death penalty and disproportionately executed. 

If there is a Black person in your life who does not seem to agree that Black outrage is justified, they’re entitled to their perspective. Being Black is an experience white people have judged and governed without understanding for far too long. That person’s perspective, however, does not eliminate the reality of Black outrage and it does not eliminate the numbers that justify Black outrage either. 

I am working hard to be an ally. I am working hard to listen to all Black and POC perspectives. As white allies, we don’t get to pick and choose which Black voices appeal the most to us. It’s our responsibility to take it all in. In this case, that has demanded that I find value in Black perspectives that oppose the movement that has been unfolding across generations and is now blooming in the streets of our cities all across the country. If I can find a way to see both points of view, however, so can you. It’s fine to align yourself with and support the Black people in your life who oppose this movement... but that does not give you the right to devalue or ignore the movement. Both perspectives have value, and both deserve our attention. 

In the effort to listen and understand, though, you, as a white ally, don’t have the right to use any Black perspectives as an excuse to look away from what is happening in this country. Even though _____ says it’s not bad, ____ and _______ and _______ and _____ say it is. And if you’re gonna listen to your friend, you’re morally responsible to hear and process those other voices as well. 

Oh, and don’t forget, in your listening and processing, that the numbers justify Black outrage. 

Note: One of the challenges I am facing in my white ally-ship is the desire to speak in a way that does not draw attention away from Black or POC voices. It is not my job to lead this fight. It is my job, however, to be a white ally and to encourage the white community around me to do the same. That is the intent behind this post. In case it was not absolutely clear, this post is in no way meant to minimize the experience of being Black in this country, which I know I cannot even begin to understand. 

Photo borrowed from The Atlantic, taken by Scott Olsen.

[theritualofourexistence]

Grandmom

When I talk about my family, there are a couple different things I find myself saying often.

First, my family is my most valuable gift. I am so, so grateful to be a part of the family I have, and they mean more to me than anything else in the world.

I’ve also been known to joke pretty casually that divorce runs in my family.

While I usually say that with a smile, it’s not inaccurate. My parents are divorced. My parents’ parents are divorced. Though I would never imply that divorce was easy or straightforward, it has brought some pretty incredible people into my life.

When I was born, I had three full sets of living grandparents and a set of living great-grandparents. On my dad’s side, I had Grammy (his mom) and Pap-Pap, Grandpa (his dad) and Nana, and Grandma and Poppy (his mother’s parents). Today, four of those six people are still living, which is something I treasure beyond words.

My mom’s mom passed away when my mom was only 19, so I never had the chance to meet her. My mom, though, speaks very candidly about knowing that Dotty is still around and has been with her (and all of us, really) during the most important moments in our lives. My mom’s dad, my Pop-Pop, married Irene after he and my mom’s mom divorced. By the time I was born, the drama of that divorce was long gone and my mom’s whole family had developed a very special sort of relationship with Irene, my Grandmom. Irene made this easy. I think loving was a very simple thing for her. Not that it wasn’t a sacrifice, just that it came very naturally.

My mom was sick around my birth so my first home on this whole earth was actually under my Grandmom’s roof.

My Pop-pop had his first major stroke when I was only a couple years old. I wish that I remembered him better when he was healthy, but most of my memories of him are of him in a wheelchair. He could be difficult (that’s putting it mildly), but my Grandmom cared for him through three major strokes and countless mini strokes, right up until he passed away at home in 2004. I remember saying goodbye to him. We didn’t have much of a relationship, but I was old enough to recognize the impact his passing had on my mom and her family. I think he was very, very lucky to find Irene. Really, I think the whole family was lucky that he did.

My Grandmom has been dealing with multiple medical issues including crippling arthritis for a lot of years now. She has never complained about this pain. In fact, I’m not sure I ever witnessed her complain at all. The last few years have been especially hard as she lost her driving privileges and her mobility began to decline. She didn’t like being stuck at home. That did not, however, stop her from continuing to mentor younger members of her church who were seeking spiritual grief counseling. Over Christmas she said that it was harder over the phone but that it was worth it. It made her feel like she was doing good work, that she had some value. I mention this specifically because it goes back to what I said about her ability to love. I don’t know that I would call this fierce. I would call it calm but strong. She managed to love everyone the same way, the same amount, with the same steady current of support.

On Monday, my Grandmom had a stroke.

She began to decline a few hours after reaching the hospital.

She passed away yesterday.

I know she is at peace. And for that I am so, so grateful. I will miss her… really, I already do.

It hasn’t been a secret that she has been ready to go for a while. Not in a morose way, but in a peaceful, acceptance-of-mortality way. Often, at family gatherings, when you asked how she was doing, she would say with a laugh, “Well, I’m still here and I still remember my name!”

I am grateful that my Grandmom didn’t spend more than a few hours unable to recall her name.

Because of this peace she had made with her eventual passing, I had the privilege of saying goodbye slowly, over a couple of years. I’m very grateful for that too.

She was a genuinely remarkable woman and she shared a deep, deep love with a family she didn’t have any responsibility to embrace. We certainly embraced her right back though.

She’s been the matriarch of the family for decades. For those of you who know my love of musicals, it’s funny, but she brings to mind a specific character from one of my favorite shows. I haven’t thought about this until her passing, really, but I find myself thinking about it a lot over the past few days.

I don’t have any claims on an abuela. That is not my story. But Abuela Claudia’s trademark song in “In the Heights” is “Paciencia y Fe.” Though my Grandmom and Abuela Claudia are more different than they are alike, if there is one person in my life who has demonstrated patience and faith, it’s my Grandmom.

It’s no secret that I run hot. A lot of people in my family do.

But my Grandmom was able to care so, so deeply in the most rhythmic, steady way. I’ve used that word “steady” a lot already, but I can’t seem to find a better way to say it. She was a pillar. Unshaking, constant.

For myself, a lot of my personal rhythm is sort of like learning how to drive stick. It’s jarring at times and there is jolting and horrible sounds and stopping and starting and stalling.

My Grandmom was never like that. If I’m learning stick, she was a train on a well-known track. She was the metal core of a building’s supports that takes the vibrations of an earthquake and disperses them safely and evenly. She was the strongest roots of a tree, the calm surface of a deep lake, she was the roof of the house in Glenolden that has been in my family longer than I have.

My family will miss her anchor in our lives. But we will be fine because of how she built us up.

When I was a kid, we would play with my uncle’s old Legos in her basement. She would always get our favorite treats, Yoo-hoo and crumb-top donuts and all the yummy things we didn’t get at home. She and I made our Christmas punch together every year. She iced my finger and put a band-aid on it when I was stung by a bee for the first time. Every Christmas she would leave us a special gift by our bedroom door, either pajamas or slippers to wear when we gathered as a family to open gifts on Christmas morning.

My Grandmom has been a part of every Christmas I’ve ever had.

She was very quick to laugh, even when her physical condition started to decline. It’s her laugh that I know I will remember most often and most easily. Her laugh, and of course, her love.

No one in my mom’s family would be who they are without her. That’s the sort of quiet, strong impact she had.  She wasn’t the star on the stage, she was the stage manager—making sure everything went off without a hitch. It seems like the right thing was never a hard thing for her to identify. Not that she didn’t have to make hard decisions, just that she always handled them with grace.

Even when she chided me for misbehaving, she did so in a way that never made me feel bad about myself. I never doubted her love or her pride in me, in our family.

She knew when to push and when to leave something be. She loved to play games, I remember a lot of rounds of Upwords, and she loved to watch the birds in the backyard. I remember quiet conversations at night at the small table in the kitchen with just the light on above the sink. I remember that she came out to the bar with me and my parents when my 21st birthday happened to fall on the eve of my brother’s high school graduation. I have never been a drinker and even that night I don’t think I finished my beer. But she could tell that I was feeling low because I had spent my birthday playing second fiddle and she did what she could to soothe that. I remember just sitting quietly with her, so many times in so many ways over so many years. Being around her was peaceful.

She lived to welcome so many grandchildren and great-grandchildren. I truly just feel so fortunate that I got to be one joint on the web of people she knew and loved during her life. I share no genetic material with my Grandmom but that did not stop her from gluing my whole family together and very gently and carefully holding every piece in place until the glue set firm.

She may be gone but the glue remains, stronger than ever, fortified, eternal.

Thank you, Grandmom. You’ve played an instrumental role in giving me my greatest gift, my family. I wouldn’t be me without you. I’ll keep loving you from here, just like I know you’ll keep loving us from wherever you are now. It’s easy for me to imagine you blending into the bright force of light that is the love flowing in and around and through all of us. I will spend my life striving to have the impact on others that you have had on so, so many people. In a world where peace and love and strength are priceless currency, you were and will always be one of the biggest diamonds I’ve ever seen.

Once you’re done telling Pop-pop all about the Eagles winning the Superbowl, you’ll have to give him a kiss for me.

We miss you, but we’ll be okay down here. Thank you so much for everything you gave to us. It is such a blessing to know you’re now basking in the peace you so often provided for others here on Earth.

I love you, Grandmom.

[theritualofourexistence]

Half groan, half sigh.

So. The state of the world. It’s chaos.

I don’t do so hot even when the world is not chaos.

So I am not doing so hot... squared.

The primary feeling I’m battling day to day is definitely fear. I will not list all the things I am afraid of. Because the list is long and stretches the whole way from getting groceries to death. And that is not the point of this post. The fear is heavy and hot and nauseating and basically constant... but every once in a while I’ll get a flash of something else. 

We’ve made it out of March. So, it was time for me to take down my calendar and pick a quote to use for April. As I contemplated this a day or two ago, just sitting in my room looking at the quote I chose for March, I got angry. 

The quote I chose for March was taken from a mind-numbingly beautiful letter in Rainer Maria Rilke’s collection titled “Letters to a Young Poet.” The quote came from letter number eight, which discusses grief, and 100% should be read in full at the viewers earliest convenience. The quote I chose for March is this:

“Perhaps everything that frightens us, is, in its deepest essence, something helpless that wants our love.” 

I chose this quote for a lot of reasons. It fit a lot of what I was feeling about some various personal hurdles I overcame in February, including starting a new job. 

The section I pulled the quote from is wonderful, and if I could have fit the whole section on my calendar page, I would’ve. 

But here’s the fucking deal, y’all.

This goddamn virus is NOT helpless.

And it is making me SO afraid. 

I think my rage bubbled up for a couple reasons... first, it sort of feels like I picked a nice quote and the world was like, “actually, how about I just break all your bones and prove that goofy poetic quote wrong instead?!” Second, and this gets more at the grief and fear than the anger--I am working SO. DAMN. HARD. to be okay. And the current state of the world has made that so much harder recently. 

It’s sort of lovely to think about the things we fear as helpless, as things that just want our love. But this virus and the associated concerns do not fit into that category. Or really any category of any of the things I’ve survived so far. I don’t know how to process a lot of what I’m dealing with... whether it’s news or the what-if scenarios my anxious brain is so good at painting on the insides of my eyelids. I’m tired of being afraid. And I don’t know when I’ll be able to stop being afraid. Which just makes me feel more tired and more broken. 

I’m angry that I chose that quote in an effort to think positively about the things I’ve struggled with this year. Because it takes effort for me to be positive. Even on a regular ass day without a global pandemic. And i did it. Instead of picking a gloomy quote, I picked a realistic quote about facing our fears and trying to make the most out of crappy situations. 

And then the situation got crappier and now that quote just makes me feel like an idiot. 

So picking a quote for April has not exactly been the cheerful journey it sometimes is. 

I’m still angry. And I’m still afraid. And I’m still tired.

But I picked a quote for April. 

It’s been in my head a bit recently and after reading the entire poem for the first time in a long time, I decided it was an appropriate choice.

My quote for April is this: 

“The powerful play goes on, and we may contribute a verse.” 

When Robin Williams died, I painted the Genie being freed with the first part of that quote in script around it. I have the painting hanging in my room, near my calendar, but maybe a second dose of that quote will do some good right now. 

The quote comes from a Walt Whitman poem. He’s not my favorite writer but again, the poem seems like a pretty good fit for how I’ve been feeling the past few weeks. 

This is the full text of the poem, titled “O me! O life!”:

“Oh me! Oh life! of the questions of these recurring, Of the endless trains of the faithless, of cities fill’d with the foolish, Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?) Of eyes that vainly crave the light, of the objects mean, of the struggle ever renew’d, Of the poor results of all, of the plodding and sordid crowds I see around me, Of the empty and useless years of the rest, with the rest me intertwined, The question, O me! so sad, recurring—What good amid these, O me, O life?                                       Answer. That you are here—that life exists and identity, That the powerful play goes on, and you may contribute a verse.“

I am miserable. A lot. 

I am finding very little peace in the optimism of others. It is one thing to have the strength to say that things will get better... and I do admire that, don’t get me wrong. But the reality is that there will be thousands of people who lose their lives to this illness. For them, things will not “get better.” No, we will not all come through this together because thousands upon thousands of people will not come through this at all.

It’s still getting worse. And I don’t know when it will start getting better. I don’t know that I have the juice to go another... four weeks? Eight weeks? Sixteen weeks? I was low on hope before and I’m feeling like the world is very much testing how much lower that hope can go... and not in a fun limbo-style party way. 

Additionally, just for spite it seems, Tumblr has chosen to underline “peace” as if it’s spelled incorrectly and nothing I do makes the squiggly line go away. Yes, I fucking know peace doesn’t exist right now but we don’t need to ruB IT IN DO WE?!

Please try to take care of yourselves. Be forgiving. Let yourself cry. Practice safe habits as best as you can. 

We won’t all survive what is currently happening in the world. And that is humbling and sad and scary. The truth in all of this, though, is that no matter what happens, we all have the opportunity to contribute a verse. 

Think about what you’d like your verse to say. About what you’d like it to mean. About how many other people may have the opportunity to benefit from your verse after you’re gone. 

Life is sometimes fragile, but that does not eliminate its power or its meaning.

This is one of those hard lessons that reminds us that the fragility of life is a big part of what makes it such a remarkable gift. 

[theritualofourexistence]

Tired justice.

OKAY.

A victory is a victory and I am *trying* to appreciate that.

Weinstein is going to jail for 23 years after being found guilty of two charges.

He received a sentence of 3 years for being found guilty of rape.

Three years.

That makes up a very small portion of his sentence so I think it’s easy to look at the whole and say yeah, this is fine, this feels proportional. The man will likely die in prison, so I’m sure for some, that’s enough.

To be clear, that’s not what matters to me. I genuinely don’t like the idea of anyone dying in prison.

But I also don’t like the message that a three year sentence for a rape conviction sends either.

In the state of Pennsylvania, you can get two whole years more than that for a marijuana charge if they can prove intent to distribute.

The state is currently in the process of legalizing both medical and recreational marijuana.

But you can still get a longer sentence for those charges than Harvey Weinstein got for being convicted of rape.

Here’s another problem I have with his sentencing.

This was a HUGE, mainstream case. It got MASSIVE media attention and a whole collection of celebrities have been involved in various ways since the trial began.

How do we ensure that justice will be granted to similar cases that don’t have that same level of exposure?

Here is your easily predictable reminder about good ol’ Brock Turner.

Brock turner was caught actively raping an unconscious woman.

He was not found guilty of rape.

He was found guilty of “sexual penetration of an unconscious woman” AND “sexual penetration of an intoxicated woman.”

That...

In case you weren’t really sure...

Is rape.

That case also got media attention... but a lot of it came too late. Regardless of that media attention, Brock was sentenced to six months incarceration in jail. He served three months.

Harvey will be in prison for the rest of his life... even though his rape conviction only carries a three year sentence.

Brock never even saw the inside of a prison. He saw the inside of a county jail. And he only saw it for three months.

Yes, the Weinstein sentence is more than I was expecting. And yes, I’d say it’s a pretty good length given both his age and his crimes.

But do I feel like this is some landmark case that is going to change how we handle rape and other sexual assault crimes in this country?

Nope.

Maybe that has something to do with facing an election where I’m (likely) going to have to vote for one of two creepy old white men with a history of inappropriate behavior towards women.

Maybe it’s just that I’m crazy tired of the same story told 1,000 different ways and never having a satisfying ending.

Either way, I’m going to stay vigilant.

And you should too.

Believe women.

Believe victims of abuse.

Fight for justice.

Blah blah blah.

[theritualofourexistence]

Pitted dates.

It’s a pun.

Here it is! The dating apps blog post you’ve been waiting for! Although, it’s not exactly about dating apps. It’s also not exactly about dating. It’s a tree with a lot of branches and no coherent thru-plot but all of these things do feel at least a little bit related so buckle up.

To start: a brief background. 

I am nearly thirty. I identify as ace or aspec (asexuality spectrum). I am not hetero... if pressed, I’d probably call myself queer... but generally speaking “not hetero” seems to cover that part of things adequately. I’ve had a handful of long-term relationships and partners. I’ve been single since my last relationship of over three years ended abruptly in 2015. I haven’t dated since then. I’ve gone on a handful of dates in that time, but no repeats and no relationships. 

It took me a long time to move past my last relationship. I probably didn’t even consider dating apps for a whole year. I’m not very socially outgoing and I don’t have much of a friend group in my town so I don’t go out to the bars or anything... which means dating apps are one of the only ways for me to actually start exploring options.

I started with OkCupid and eventually worked my way to Bumble. I can’t afford to pay for anything more involved so I’ve never tried Match or anything like that... and Tinder was never particularly appealing to me either because I have no interest in hook-ups. 

I’ve posted on and off about being single over the years. There were plenty of times, early on, when I hated being single. I felt alone and broken and it wasn’t a good place to be. Gradually I became more comfortable, however. I explored labels a bit more. I learned a lot about myself. I’m at a place now where, though I am lonely sometimes, for the most part I feel like my needs can be met by the people in my life... even though I’m not romantically involved with any of them. 

In response to a blog post from a few years ago, a woman a generation or two older than me sent me a message implying that she was sure I’d settle down and find someone who could make me happy if I just lowered my standards a bit.

Then, that sort of made me blind with rage. 

Generally, now, it still does. 

I’ve thought a lot about this message and its implication over the years. There are times when I can see how someone might think my standards are too lofty. But what’s the difference between standards, even high standards, and simply knowing what you are and aren’t compatible with? 

I’ve dated enough and been single enough to be VERY confident about some things. 

And yes, there are certainly some deal-breakers. 

It’s possible that there are more deal-breakers than “deal-makers” so to speak, but I still think that’s probably not the worst thing in the world. Especially for someone who is relatively comfortable being single and also relatively busy with work. Dating takes time. And here at almost-thirty, I don’t feel like spending time on someone who I am pretty sure I won’t be compatible with.

It’s not so much that I’m judging the others, either. When on a dating app, I’m pretty careful to only swipe right for guys I think would also be compatible with me. 

If you use the word “spontaneous” in your bio and at least one of your pictures is you sky-diving... you’re probably not right for me. 

If you put in your bio that you’re only interested in women who prioritize dogs and fitness... I’m probably not right for you. 

Is that tied to lofty expectations? Or am I simply being realistic and saving both myself and the other party time and effort? 

I certainly have a type. And I’m sure there are potential partners out there for me that are not that type. I’m not averse to being surprised or trying something a little unexpected. What I do know, however, is that I will never jump out of a plane. And I will also probably never kiss a dog on the mouth. 

My “standards” are basically generated from my knowledge of myself. So, sure, call them lofty. But I’m pretty proud of the effort I’ve put in to understanding myself, and when it comes to dating, there is value in utilizing that knowledge. Here are some things I know about me and the associated “standard.” 

I am not a partier. I don’t do drugs. I rarely drink. If you are visibly drunk or stoned in the majority of your pictures, we probably aren’t super compatible. 

My politics lean FAR left. I don’t even like referring to myself as a “democrat.” I care deeply about social justice issues. If you voted for Trump, we probably aren’t super compatible. 

I am extremely anti-gun. I grew up in a rural area and understand both the sport and value of hunting. I know that I will never hunt though. Could I be compatible with a hunter? Yes, definitely. But could I be compatible with someone who is waving around various guns in 3 out of their 4 pictures? Probably not. 

I am a cat person. Though I don’t HATE dogs, I certainly prefer cats. I have a very low tolerance for small dogs and, in general, I don’t like the way dogs smell. I’ve made friends with a handful of dogs in my life and certainly could again. But if you say that you hate cats in your profile, we probably aren’t compatible. 

I work a lot and I make no money. As a result, I’m tired a lot. I spend a lot of my very limited down time doing extremely low-key activities like reading or art or watching TV. I can’t afford to travel much. Part of the reason I work a lot is because I’m actively trying to hit certain career milestones. I feel like I’m a bit behind. But more than that, I’m very passionate about my work. If you expect to take the place of my long-term career goals, we probably aren’t compatible. If you expect me to hop on the next plane to Europe or Asia or Africa, we probably aren’t compatible... unless you’re covering the costs. 

I’m a feminist. If you’re a fundamentalist Christian or someone who believes a woman’s place is in the home, we probably aren’t compatible. 

I believe black lives matter. If you currently display or have ever displayed the confederate flag, we probably aren’t compatible. 

I’m committed to learning. Not necessarily in school, but from everything in the world around me. If you don’t share that perspective, we may not be compatible.

I am looking for someone who shares some of my interests. 

I’m looking for someone who has other human beings in the pictures they post in their profile... instead of six different versions of the same poorly lit selfie from an unflattering angle. I think I’m probably looking for that last thing so that I’m not raped, stalked, or murdered if we’re being honest. 

I’ve already said that I identify on the asexuality spectrum. As such, there’s very little that I’m naturally attracted to... if I find that, and it’s very rare, that person and I almost never “match.” If we do match and you ask about my labels and I explain them and your instant response is that I must be ace because I’ve just never had good sex, we definitely aren’t compatible. 

I don’t know, all written out, maybe this is a lot. 

But I still don’t think it is. 

For the most part, every guy on dating apps seems to be looking for the same woman. 

She’s thin and into fitness, she has a dog, she hikes a lot, she loves going to concerts and traveling the world and she works hard but parties harder.

That woman can’t possibly exist in enough quantities to please all the men on Bumble. In fact, I doubt that woman exists at all because I don’t understand how you have the time or money to even do half those things. 

So yeah, I may have high-ish standards... but are MY standards even the issue?

If no one on Bumble has any interest in a fat brunette with a lot of tattoos who reads a lot and wears sweatpants more than any other clothes... well, what I want isn’t going to matter a whole lot anyway.

I want someone who loves me for me... who works to understand me... who raises me up but who also respects my independent nature. I don’t think I do well if I feel too needed. I want someone who respects my politics, my philosophy, my dietary/health choices, my mental health journey, my career aspirations, my sexuality... and hell, if that’s too much to ask, I’d probably rather just be on my own. 

I had a big “ah-ha” moment a few years ago when it occurred to me that if I want to have a child, I can do so on my own. I can choose a donor, I can carry a baby or I can use a surrogate; if those things don’t work, I can adopt. My family and friends are a safety net forged in the strongest flexible metal in the known and unknown worlds and I have no question that they would be enough to guide me in that journey. 

Now, if I go that direction, it’s still many years away. But I know I could do it. And that’s enough to wipe away the creeping fear of the biological clock. 

I am not in a hurry. But I don’t have time to waste. I have a never-ending list of books to read and a finite number of years to read them so yeah, I’d rather sit on the couch with my mom and my cat than go on a date with someone I know I won’t be compatible with. 

Are my standards too high? I truly don’t think that shit matters at all. 

There are times when I’m lonely, but I am not alone. And I know that’s also a common occurrence for many people who are dating or married or polyamorous or ace or divorced or whatever. I’m pretty sure loneliness is just a part of the human condition. 

And, most importantly, my needs are largely being met. Browsing dating apps is entertaining at times, even if it doesn’t lead to dates. There are times when I want to be told I’m beautiful, I want to be told I’m powerful generous kind loving passionate giving funny sexy smart creative. Just because I’m not dating someone, however, does not mean I don’t have someone to tell me those things. It’s a wonder what friends and family can do... all you have to do is ask. And sometimes you don’t even need to do that!

Would I like a partner to walk with me through the rest of the world? Sure. But, at the same time, no partner will ever know me the way my best friend does. The way my family does. They may know me in a different way and a valuable way, but no one will know me like the people who have watched me become who I am... through trauma and time and growth and failure and success. And sure, we are always growing and changing and experiencing new failure and success... but I just don’t know. The more I age and the more I think about it, the more I’m pretty sure I don’t *need* a significant other. And that’s a comforting thing, not a sad thing. 

I don’t think there’s ONE person out there for you. I don’t think some all-knowing deity designed your perfect “other half.” You are a whole ass person and that is enough for my god. Even more so, implying you can only be completed by one other human person means you’ll miss out on what you could gain from so many other beautiful people along the way. 

I think it’s okay for me to be honest if I’m not interested in going on a date with a thirty-year-old basement troll. I think it’s okay for me to be honest if I’m not interested in going on a date with a suit-wearing globe-trotter who spends his weekends blowing his income/inheritance with a drink in hand. I can sure as hell promise you that I’m never going to be Sarah who weighs a trim 120 and has a long blond braid and hikes with her dog on the weekends when she’s not tanning on a beach in Spain or tailgating/day-drinking for eight hours at a time.

Is it my standards or their standards or is it something completely different? 

I think it’s human to want to be enough. 

I would be lying if I said I didn’t feel that way.

But the more time and energy I spend on loving and understanding myself, the more confident I am that I *am* enough. I’m not defining “enough” by what a spouse or partner sees/wants/needs. I’m defining “enough” for myself. And if I’m enough for me, maybe that is all I really need.

Maybe, in time, I will find someone to share my life with in a romantic way.

Or maybe I won’t.

And honestly, I would just like to believe that I’ll be okay no matter what. 

[theritualofourexistence]

Rebuilding.

I landed on a metaphor yesterday that I felt like sharing.

Yesterday I got some bad news. The type of news that makes you sad and afraid and hopeless and helpless and sick and frustrated all in one moment.

In that moment, my grief was sharp and raw.

I’ve spent a lot of time learning about how I handle the hard things in life and I’ve grown to understand that often I need to let things bubble up and overflow and boil and riot and eventually things will even back out.

Yesterday, in describing my moment of grief, a new way of thinking about it came to me.

My initial reaction to heart-breaking moments is like an earthquake. It rocks the structure, it knocks everything off the walls, books are shaken from their shelves and furniture collapses, windows crack.

Then, in the next moments, the moments following the earthquake, we rebuild.

I wade into the feelings. I swim the depths of sadness and climb the summit of fear. I trudge through the heavy snow of hopelessness and drag rationality back into its rightful position at the helm of my ship.

In my trashed earthquake room, I start to pick up the books and return them to the shelves. I look at each and turn it over in my hands. I rehang the art on the walls. I put things back in their places, slowly and deliberately. I patch the furniture and replace the windows. I take a deep breath.

With time, the room will be reassembled. Perhaps it will be even prettier and more organized than before the earthquake.

Today I am still feeling sad and sick. I’m still feeling frustrated and scared. But, unlike yesterday, I am not helpless or hopeless. I am certainly daunted but I am also more confident that I can face whatever comes next.

The earthquake is no joke. But with time and patience, I can rebuild.

I can rebuild.

I can rebuild.

[theritualofourexistence]

Ten years spent learning to think differently.

Everyone and their mom is posting about the past year, and in a lot of cases the past decade.

Let’s start with the past decade.

In the last ten years:

- I survived what I have grown to recognize as an abusive relationship.

- I played a lot of beautiful characters on stage.

- I spent over two years dating someone who now refuses to talk to me.

- I spent three and a half years dating someone different who I also don’t speak to any more.

- I spent hours and hours playing board games and/or video games with my favorite people and my family.

- I graduated summa cum laude from Gettysburg College. My English Honors Thesis remains the most downloaded item on Gettysburg’s online database of student and faculty publications. For commencement, I was seated in the chair immediately behind my abuser.

- I’ve gotten *a lot* of tattoos.

- I gained 60 pounds.

- I went to Nicaragua.

- I racked up a stupid amount of loans.

- I went to South Africa.

- I read a lot of books and watched a lot of movies and TV.

- I started getting panic attacks. I learned to manage those panic attacks.

- I spent five years working in restaurants.

- I made some tough decisions and put in a lot of work to redirect myself and identify new goals... resulting in getting my MA in Forensic Psychology.

- I spent 7 years in therapy. 

- I said goodbye to two beloved pets and hello to three more. 

- I took anti-depressants and medication for my anxiety.

- I navigated getting my own insurance.

- I saw Bruce Springsteen play my favorite song of all time.

- I helped my two best friends get married.

- I loved. A lot. 

Those are, obviously, an extremely brief summary. This past year and the one that has just begun mark the 10-year anniversary of the worst period of my life... and the struggle to begin working past that period. It’s a heavy weight. And it makes it hard to think about the last decade without being bitter. So, as I move into 2020, I am choosing to not spend much time on thinking through the last decade. There was good and there was bad, but ultimately what matters at this point is choosing how to spend my time and energy on what happens next.

---

Now. 2019. 

This past year I moved home with my mom. 

I started one job adjacent to my desired field and one job very much a part of my desired field. I worked them both for around 10 months of this year. Not only have I gained incredible experience but I’ve helped people and, something I did not necessarily expect, I made a lot of good friends. I know people who scoff at being friends with your coworkers but that is the mark of 2019 for me. I struggle to make friends and I don’t have many in the area... so working at an office of people mostly my age from the same parts of Pennsylvania who all share the same passion and commitment to working a hard, hard job... well that was a gift in more ways than one. Though the future is a bit... vague... I don’t doubt that I can choose to carry these friendships forward and I am so, so grateful for them. 

I got back on the health/exercise donkey. After tackling my iron deficiency anemia head-on, I worked hard to find a balance between mental and physical health. For me, this means finding some sort of exercise I can do often enough that I don’t hate. I have to be able to motivate myself and I have to feel like it has value. For the last 10 months, I’ve exercised regularly, something I am immensely proud of. I’ve gained fitness and, most importantly, I’ve motivated myself to keep working. I walk when I can and do intervals of what I lovingly call “fat sprints” 2-3 times a week. Even on vacation!

I saw one of my favorite musicians with my brother and his lady in one of the coolest cities I’ve ever visited.

I made a lot of cool paintings.

I spent a lot of energy working to help one of my best friends plan and execute her wedding. I don’t know that I will ever have a wedding of my own, so throwing myself head-first into doing whatever I could to help was something I found a lot of pleasure in... it was an honor to help the special day go smoothly... but it was fun too. 

I did Ink-tober again.

I saw the ends of my chapters of How to Train Your Dragon, Game of Thrones, the Avengers, and Star Wars with the people I love most in the world. 

I read some really, really good books.

---

Like all years there were things that were good and things that were not good.

I stand now in a place of some uncertainty. 

But something that is different... very different from a decade ago but even different from the beginning of 2019... is that I am not afraid.

There are a lot of things I want to do. Just like I took steps forward in 2019, I will continue to take steps forward in 2020. I don’t know how many. I don’t know what those steps will look like. But every day we spend learning about ourselves and about each other, we have the opportunity to take steps forward. 

I’m learning how to value steps forward. I’m refusing to take steps back. I’m understanding that sometimes our only way forward is to take some steps to the side first. 

Take deep breaths.

Listen. 

Learn. 

Be still.

Lean into the things that are hard, the things that take the most effort. 

Do your best. Recognizing that your best can vary a lot. 

Continue to commit to understanding that all we can do is all we can do. 

Help someone else. Help a lot of someone elses. Help yourself. 

Build communities. 

Use your privilege to balance the scales. 

Take action.

Humans are remarkable. They are complex. They are resilient. I know this because I live it every day. If I can, you can too. Find joy in the human capacity to overcome... it is the most beautiful thing I’ve ever seen.

I hope that 2020 brings expansion of horizons. I won’t say happiness, because happiness is a myth. Value learning, value time spent with loved ones, value moments of contentment and comfort, value hard lessons, value new experiences, value the journey to self-love, value feelings of fulfillment and achievement. You are remarkable. And you’re so much bigger than “happiness.” Give yourself credit for your successes and learn from your set-backs. Use small victories like rare, perfectly-shaped handholds on the rock-wall of your human life. 

Remember that no journey lasts only a year. Find comfort in that. 

Onward and upward... in your own time, at your own pace, in your own way.

[theritualofourexistence]

#CancelStudentDebt

You. Guys.

Background: Bernie Sanders and Ilhan Omar have called, on Twitter, for users to briefly state how their lives would be different without student debt, using the hashtag #CancelStudentDebt. It’s part of a campaign recently launched by Sanders that would instantly eliminate the $1.6 trillion dollars of student debt currently hefted by American citizens.

Even with that plan, I’m still not sure I’m voting for Bernie.

And if he somehow wins, I still don’t actually believe he’d be able to just poof away my student loan debt. 

For the sake of the “what-if,” however, I chose to tweet along with the hashtag... just a simple statement about how my life would be different if I didn’t have student loan debt. 

This is the exact text of my tweet:

“With no student debt, I’d be planning a future that included children, supporting my parents, and pursuing my dream job. #CancelStudentDebt”

I went on to say in a few follow-up tweets that I’m still pursuing my dream job... just much more slowly than I could without the debt I already have. I briefly explained what that dream job is (having my own practice and providing therapeutic services to those incarcerated or recently released) and that I have three jobs now that I’m using to work in that direction... but that I still feel the pressure of my loans every day, every time I choose to spend money on anything.

That tweet seems pretty harmless to me. Despite that, it has launched quite a shit storm. One that I was definitely not expecting.

First, I am a nobody. I have very few followers on Twitter. I basically use it to follow sports, a handful of celebrities, and whine to no one about the stuff I struggle with daily. 

The good: this tweet now has 200 likes. WHAT?! I think the most likes I’ve gotten on a tweet before capped out at like 25, at the MOST. It also has nearly 30 retweets. So folks relate. I approve.

The shit storm: over 60 mostly middle-aged white dude trolls were sitting on that hashtag, waiting for a simple little tweet like mine to come along so they could jump on it and rip it to shreds. 

In the last eight hours I’ve been called stupid and lazy more times than I can count. I’ve been told over and over again that I shouldn’t have taken out loans if I didn’t want to pay them back, that I should have picked a different major in college, that I shouldn’t have gone to college, that I should have gone to a cheaper school. I’ve been called a socialist (yeah, okay, not denying that), I’ve been called evil. As of 5pm, I’ve been called a cunt... by strangers... at least three times.

I never intended to start an argument about the benefits and or downfalls of eliminating student loan debt. 

I was simply saying that, without it, my life would be different. And easier.

I was raised to chase my dreams. I think a lot of people in my generation were. But our parents, likely the same dudes shit-posting on Twitter today, were well-meaning when they told us to dream big and to have the courage to chase those dreams. I don’t think they could predict the world we would inherit... and just how hard it would be to actually pursue those dreams.

I don’t think my dreams are outlandish. I don’t think they’re irrational. And trust me, I know what irrational looks like. 

Do I think my student loan debt will magically disappear? No, I don’t. Would it be nice? Yeah. It would. Would things be different and easier? Yes, definitely.

I can’t go back and pick a cheaper college. I can’t go back and pick a different major. I can’t go back and decide not to switch fields. I can’t go back and un-sign the loan papers I signed when I was 18 years old.

I was 18 years old. Maybe. I honestly could’ve been 17 because I’m a summer baby. And I have absolutely no memory of signing loan papers. I knew enough to know I’d have to pay them back. But I also knew that getting loans was the only way to pay for the program at the college that I thought would be best for me.

Turns out, 18-year-olds don’t know shit.

Maybe we shouldn’t let 18-year-olds make decisions about thousands of dollars.

Anyway, here I am now, unable to undo any of the decisions that saddled me with my current student loan debt. 

Today I was called stupid, lazy, evil, and a cunt, just for having a dream.

What a weird thing.

Some suggested I join the military. Maybe I could make that work... but let’s be honest, the military isn’t a nice place to be for pacifists. Also, enlisting when we’re on the brink of war with Iran just seems, objectively, stupid.

What do people get out of insulting strangers on the internet? None of the people who responded know anything about my life. Many of them told me to get a job and work to pay off my loans. Well, I’ve got a job and I am working and that’s not really enough. Many of them accused me of seeking handouts. Of never working for anything and expecting to be carried through life.

Those people don’t know how hard I’ve worked. But that didn’t stop them from calling me names.

I often forget that not everyone understands empathy the same way I do. It’s why I feel the way I do about a lot of socio-political issues. If you told me that my taxes would go up ever so slightly but that I’d be able to help millions of Americans achieve financial stability, I’d say sure. 

I don’t understand why people with a comfortable life--a home, a family, a steady income--feel so mad about other people wanting a chance to have those things too. 

All I want, really, is to be comfortable enough to feel like I can give back. To repay my parents for their constant support, to donate to causes fighting the good fight, to provide affordable therapeutic services to people in need with limited access.

Today, right now, I’m pretty sure I will die childless and still with debt. That’s the reality that I face every day. I work hard, despite that. And I dream, despite that. But the idea that maybe that isn’t my future is certainly nice... no matter how immediately unrealistic it may be. 

What did all those angry white people get from telling me to quit bitching and get a job and deal with the consequences of my actions? What good does that do? Who does that help? 

What good does it do to tell a fat, poor, anxiety-ridden 28-year-old that her dreams are stupid and unattainable and that she’s a lazy idiot for having them? 

What synapses are firing in your brain to make you think that that action has any kind of value? 

Remember, folks, that even if you’re looking at a computer and not a face, that screen-name is connected to a real ass person. I may have silly dreams but at least I am committed to not treating other people like garbage. I don’t have any interest in hurting anyone’s feelings, and I’m adult enough to choose my actions accordingly. 

Today, I sent a simple tweet out into the universe, and, in return, strangers called me names for hours. HOURS. It’s literally still happening.

Who does that serve? Calling me an idiot isn’t going to change the reality that forgiving student loan debt would change my life. That’s not an opinion that can be corrected, it’s simply the truth. 

So, regardless of who is elected and what happens with student debt... Regardless of whether or not I pay off my loans some day... Regardless of whether or not I die childless with debt still left to pay... think about how you interact with others. 

Hurting people for no reason is sick.

I’m a strong girl, because of all the hard work I’ve put in, of course; so I’ll be okay. But you don’t get anything from insulting others on the internet... so why spend the time and energy to cause that hurt when there’s nothing at all to gain from it? 

Here in America, if we’re lucky, we’ve only got 80-some years to dick around on Earth.

For the love of God, please just use that time to be kind to one another.