• Des Roundtree •

I write a lot. I also have a lot - #Lupus #Fibromyalgia #Anxiety #ChronicPain #Hashimotos #Bipolar2 - I am still here, a work in progress and progress at work.

[desroundtree]

What Colors Are You Made Of?

Sometimes there aren’t enough yellows to make me happy. To provide  me with the warmth that helps smiles glide across the faces of those around me. Yellows that jump at you and find their way into your memories.

Sometimes there aren’t enough reds to light my fire. To warm my soul and fill me deeply and from a space that I recognize, want, and need. My reds are muted, and feel like pinks struggling to find their depth. Not deep enough to stir anything real.

Sometimes there aren’t enough peaches to soothe me. To make me feel like closing my eyes and taking a deep breath is a gift I can give myself and one I deserve. 

I realize the reds are what I crave lately. A space where I can run at full speed, dance all night, and make memories for myself and those around me. Places where I am free and full and keenly aware of how important I am in this world. Not only to the people around me, but to the world at large - red is where I feel like my voice deserves to be bouncing off the pages.

There are always blues. Blues that hold to my soul and drag me to sweet places I miss. That remind me of the life I lived, what I had, and what I have always felt I deserved. Blues that feel like they slide across my skin easily like oil dripping through your fingers, running down your arm no matter how hard you you to hold on to it. It's always easier to feel blue, at least that's what I think.

But the colors, all of them, make me. I wish they blended in a way that made me feel safe like they did before, in a way that made me me shine from within, and take pride in my accomplishments and relationships. 

While I love grey, the invisibility it brings is where my comfort plays best. A part of me know how life feels when it’s the best it could be. When I am bursting with happiness and not drowning in blues and greys.

I wish I felt colorful again

[desroundtree]

When There Is No Quiet

Being diagnosed with ADHD late in life made a lot of things clear for me. I thought all the way back to my childhood and once I was able to isolate behaviors and things, I recognized patterns in my past that showed me I have had this for a long time. But even with all the research, all the knowledge, and all the medicine - when it’s hard, it’s hard. 

There are times when the chatter is lower than others. Where the noise in my head sits at a low hum just beneath the surface of every thought I have. Even when those thoughts are whispering they bubble up and make no space for the thoughts I want. While it can be a very personal struggle especially since mine deals mostly with executive dysfunction, it can also be a very public struggle when I search for words or lose my train of thought.  

It doesn’t stop there. If it effects my speech, then it effects my writing and I find that it is so much easier for me to lose phrases, direction and ideas. It happens more than I care to admit, even though I guess I already did. So when I struggle in that sphere, the executive dysfunction fun kicks in and I avoid the thing I have to do and am struggling with.

The kicker is I really want to do it, I just can’t. 

Those are the days when it’s loud and I feel helpless, and alone in a way that makes everything hard to explain. Having a marching band in your head doesn’t really make you feel like adding to that noise is necessary, at all. On days like this even outside noise bothers me and I feel like I can hear things even more keenly than normal, like the overstimulation has unlocked some sort of superhero power. Should I be thankful that I can hear a watch ticking across the room, or a loose piece in the fan of my bathroom? Probably not. 

Mostly, I find myself frustrated and stressed out which invites other health conditions to come and play. And these bitches play and love to overstay their welcome. Once I’m in this rabbit hole, the sadness kicks in and the self doubt dances to the same tune. 

Then I truly can’t do anything, even if I want to. 

So while I take medication, I can honestly say I have so many other health conditions that make everything worse - it always feels like nothing gets it right. Sometimes it’s right enough and sometimes it’s so wrong. 

I wonder what it’s like not to feel this way. For it to be quiet - no hum, no marching bands. To walk through the supermarket and get everything I need. To not need a million lists or post its on my refrigerator. To not avoid things I love to do simply because. To not avoid people because I feel like I can’t have a conversation or keep up. 

I wonder what it’s like for there to be no noise. For the thoughts to calm and dissipate, for the whisper to be comforting instead of all consuming. 

I wonder. 

When I can concentrate, I wonder.

[desroundtree]

When it’s time to move on, things always flood the surface - emotions, anxiety, relief. It’s always something that fills the space of what it means to move on.

Boundaries - setting and keeping them - has always been a ritual of moving on for me. When you set a boundary, a real one that removes the issues from your life, it encourages your brain to move on. Not only from the situation but from the person or thing that dragged you there in the first place.

The month of March has been hard for me in the boundary space of my life. I have had to dig my heels in for me and choose my long term happiness versus what would have made other people happy or comfortable. But the issue is and will always be - boundaries can hurt to hold and keep.

The last two months have been some of the most trying emotional times I have had that weren’t related directly to my health. I was hurt in ways I never thought possible by and for people I never thought would have a hand in my tears. Not as purposely or vindictively as my feelings were trashed.

Should I have lashed out? Maybe. Possibly. In the moment it would have made me, and all my friends, feel better. But the exhaustion that comes along with the acceptance that people are hurting you on purpose is kind of unexplainable. It ushers you to the space of giving up a lot easier, I can definitely tell you that.

My reaction now to what has happened and what has been allowed to happen, will be frowned upon as well. But my reaction is that, a reaction to something that has been done to me. And you can’t police people’s reactions so the space I exist in now is one that understands and stands in the light.

If you do, you get done to.

But even if I know that, it doesn’t make it easier to hold my line. I know I don’t deserve half of what happens to me in life, being chronically ill has proven that to me clearly. If you have chosen to bring more pain, more confusion and inject more sadness and pain into my life - I have to learn to make my heart hurt less when I demand a life that doesn’t include that, or you.

In closing, it’s ok to choose you - even when it hurts. That pain exists in the place where the shackles that held you to the abuse for so long have been. Fill that space with things that don’t demand the constant and continuous sacrifice of what you deserve and demand to be happy.

You aren’t asking for much, I promise. It is what anyone in any healthy relationship deserves - don’t let anyone try to convince you otherwise.

[desroundtree]

The Big Bad Wolf

I have tried to be the type of person that doesn't let what other people think of me phase me. What they think is their problem and I am not in the job of opinion changing in this stage of my life. Unfortunately there are times when even the best shields can’t fight the opinions that make their way through the seams. It’s hard because I’m a reactionary person, my energy will always match yours - no matter what that energy is. Good or bad.

I have tried to take it all with a grain of salt. Keep it moving. Brush the dirt off my shoulders. But let’s be honest, there is only so much of that you can do before you get sick and tired of the bullshit. My biggest takeaway from people who think they know me or my life is that they don’t. At all.

 A major issue with making assumptions about people is they are usually based on an overreaction, or a jump to conclusions. Most times the other person only knew half truths or even responded in the midst of the issue. The madder someone is, the worse their opinion. The heat of the moment is a bitch place for you to make a decision from. Yet people choose to operate from there and don’t get that choices have consequences. 

It’s almost as if people don’t understand you can be mad too. Mad that they feel that way. Pissed off they would RATHER (it’s a choice) feel the way the they do because clarification takes too much energy. Disappointed in anyone that allows a terrible version of me to exist in their head because it fits the Devil they want me to be this week, day, or hour. 

But what I won’t do, ever, is clarify things. Things are clear to me. I have BEEN moving through the world happily without searching for people’s approval or asking their permission. But when I slip and care, it sucks to realize this big bad wolf opinion of me is something upheld simply because people don’t want to apologize or take fault for things that made me feel bad. They don't want to take the time to ask. They refuse to feel bad for their assumptions.

I can’t be ashamed because people are wrong, that’s their job. All I can do is try not to be the wolf they made me out to be in their heads, in MY head. But it’s hard when all you want to do is blow their houses down, and know you damn well can. 

[desroundtree]

The Perfection of Time

Sometimes I guess I really don't know where to begin. This is one of those times. I jumped back in with my first post yesterday and it felt good to write. To let it out for me but also to let you know it’s ok if you have those same kinds of feelings. All of your shit is valid - good and bad.

So much has happened and not happened it feels ridiculous to rehash it all, or to put myself through the emotions that come with that. I will be concise when I say a lot of things have changed in my life. Some of those changes have shocked me and shaken me. Others have grounded me and showed me who, and what, I really am. Most have showed the world that I am not to be fucked with. It is clear that my peace has become my priority. And my silence can become deafening.

I have opinions and addressing them has always been easy for me. This is my space, and in my space I am free to move as I wish. I am working to make myself feel like a lot more of the world is my space - learning to take it up  and not be apologetic for it - and to demand what I need, when I need it. This hasn't been easy. It is still very much a work in progress. With Covid and my illness, the very idea of taking up physical space scares me to death. But there have been, and will be, more steps toward demanding freedom others around me don't seem to want to share. It's odd to feel like the world has become a place where your existence is not only dismissed, but completely ignored. Then to realize that that feeling and those behaviors are closer to home than you think. 

Gaslighting can come from anyone, and I have learned that even those that should be sympathetic, lose that touch when they’re inconvenienced.

Life was hard in the moments when I lacked concentration, when I couldn't figure things out, when words made no sense in a sphere where they once did. I was scared. I am scared. But I realized that’s something that’s not going to go away but I can learn not to operate from that place.

I am an outspoken supporter of therapy, and mental health treatment - whatever that may be or look like to you. In the time that I’ve been gone, I struggled through medicine after medicine, and spoke to therapist after therapist. I stopped sleeping enough to even constitute what any person would really call rest. My Lupus flared because the stress, sadness and overall nothingness of it made it impossible to stay healthy. I was in a constant state of irritability and it went from bad to worse, with no good to be found on the scale. I struggled with what I felt like was the selfishness of it all. I struggled to feel loved when it is obvious I am.

I can’t imagine what the world would be like if I wasn’t.

But still it was hard. It is hard. Every fucking day. 

It has been a really rough go. 

But in this time I have also made plans, secured ways, made moves. Silently. The way most moves should be made. Not in this day and age it seems. I have plotted. I have been angry enough to push. I have taken care of everything and everyone, so much so that I have forgotten to take care of myself. I have checked my ego at the door, and have really tried to learn and understand the way I work and what I require to exist within my space. 

Yes, require. 

My energy is important to me, too important almost, and I share it reluctantly at best. I have learned because time is a teacher. People say it heals but sometimes I’m not sure. I think it teaches you that there are some things that you might not heal from. And that’s ok too. 

I will leave you with this, we aren’t meant to be perfect. Even if perfection is what we are taught to strive for. Perfect is what you make it. It’s whatever lights you up. Time taught me that we end up working so hard toward something so unattainable that we forget that right now is as perfect as it’s going to be. 

[desroundtree]

Boundaries

I am a person that has always struggled boundaries. Most of the time it happens with others but I can admit it happens with myself a lot too. I have learned that being bipolar makes me struggle even more, so I am truly not imagining it when I say I feel like it is the hardest thing to do. 

I will admit it takes me a while to get to that point. It isn’t one transgression, it’s usually many - whether those transgressions are intentional or if I just perceived them to be transgressions - that doesn’t matter. If I feel slighted or hurt I am entitled to that feeling and the truth is no one can tell me otherwise. We all have things that push our buttons, things that hurt us more than others think they should, reactions that people can see as too much or even too little. I am not concerned with the way other people think anymore but I will always be concerned with the way I feel about it.

I  want to be clear, boundary setting is intentional. It is because I am hurt and no one has to understand that but me.

But people have misconceptions about boundaries. It isn’t telling someone not to talk to you in a certain way, or telling someone you don’t like something they did. That’s a warning, not a boundary. A boundary is removing yourself from the situation so it isn’t allowed to happen to you again.

You disrespect me enough for me not to speak to you, then I create a boundary and guess what - I am going to hold the line.

You treat me badly in the past continuously and want to try to walk back into my life because you’re done being an asshole, well guess what?

I am going to hold the line.

You don’t want to admit your wrong at all, any time, any where - guess what?

I am going to hold the line.

You hurt me or those close to me, you take advantage, you’re cruel, you’re selfish….

Guess what????

I don’t care who you are. I am going to hold the line.

I think people don’t understand that it is a hard place for me to be in, those are hard decisions to make and this was a place I arrived at. It doesn’t come without tears, or pain, or sadness.

And it isn’t easy. I have feelings too. Feeling like you’re being treated badly and choosing to react to it to protect yourself is going to make people uncomfortable. It’s going to push people out of their comfort zones - the same way I felt pushed out of mine - and that’s what they deserve. Their comfort, their ability to move in and out of my life, their ability to do things without impunity stops with me.

Let’s burn the bridges down.

[desroundtree]

Feeling things in a large way has always been my way. I haven’t known any other way to be and frankly I wouldn’t have it any other way. I like big things - big music and hair and words. I have never felt like I had to make excuses for being that way, until age crept in and the insecurities of time and life settled under my skin. It's hard to know that you are too much, or to feel like you are too much, all the time. It's hard to understand that all of you is too much and shrinking down is the only way that you feel tolerable to the outside world sometimes.

So I figured that maybe shrinking down isn't the way. Maybe growing out is the way. Growing out of these places that feel too small and tight. Maybe the right thing to do is to deal with life in whatever big way I want to, whether that way is understandable to some or most shouldn't be my concern. We shouldn't break ourselves down into bite sized pieces so we can be consumed by the masses, instead maybe we should remain just as we are and allow the people and things that can handle us to do just that.

Thinking about how life has changed, and how I no longer feel the need to, has been enlightening to say the very least. I find myself unable to hide things that I once kept bottled up - happiness, discontent, anger and even dread. All of it comes floating to the surface, demanding to be heard, and felt. I can't deny these feelings, and want them to be a part of what I can only see as healing and growth. I can only understand that being me means being all of me, all the time. Not just when it feels like the world is ready. I am ready, and that is what matters.

I guess I am trying to say if you feel like you are just too much, that's ok. Being too much has always been preferential to being too little. I would rather be too much any day to be honest, because it allows me to be comfortable in my own space, flesh, and time. Maybe that's the hardest thing for other people to grasp, this concept that shrinking down doesn't work and refusing to shrink is my only goal sometimes. I want to take up all the space in the room, and maybe that's too much for some people.

It ok for those people. They are free to leave the room.

[desroundtree]

[desroundtree]

There are still beats of joy we can find by looking around. Maybe this has changed us and we aren’t present as much. Maybe we find it hard to experience joy because of the situation we are in, and we search for what we lost instead of loving what we have. Maybe we feel like joy is the over saturation I see, this frantic need some people have to gobble up every experience they think they need to fill up. Maybe our joy is wrapped a lot in others and not as easily recognizable in the things we inherently have become. All of these things can simultaneously be true and that’s ok.

But I think we have lost is the ability to find joy that we feel matters. These small things that make us happy are often tossed aside as less than because grand gestures are what we feel we need right now. Because we feel so deprived and like we have had so little of what made us feel normal. Because things have consistently felt sad or empty or angry. Because there hasn’t been a lot to celebrate when so much feels like loss.

But there are things to celebrate. Like how some of us have managed to stay connected, or managed to disconnect and some of us even had the time to find our voices. Some of us found our purpose, some of us found our way in loss, some of us have learned that empathy is a big job, and some of us have learned the concept of what holding space means. We have learned about letting go, and how that can change not only your world but the world around you.

We have had birthdays and holidays - though different - they were still a part of this year and a half. Some of us surpassed milestones, made big moves, launched different directions, danced to our own tunes and made what this was into something that could possibly hold light. We did that even when it feels like we didn’t. We did.  We made the best of it and some of us fought like hell to do just that.

We also learned - some good things and some bad like every other year. Though this year it felt like learning a lot of bad all of the time and at one point everything felt that way - the news, the heart, life. But we started to learn that this is going to be the normal for now, for a little while. And started to make, hold and keep space - for ourselves and for others. Without that space I don’t think a lot of people would have felt the comfort they did with becoming the people they did during this. They wouldn’t have grown without room to grow.

It’s hard to imagine this being over. Maybe it will be sooner rather than later but I’m not sure of that at all. I think we have a long way to go and there will be more for us to overcome before we make it through. What I hope for us is patience. With this and with each other. With the demands this entails and the dedication it takes to be steadfast.

I hope for the grit and grace it takes to find beats of joy through all the noise, and to believe that they all matter.

[desroundtree]

I’ve noticed most of my grief in life has circled around my illness and what it does to my body.

Being 43 and unable to help yourself from point A to point B when you could just a day ago is often mind boggling to say the very least. But it’s humbling to say a lot. It’s hard to become acclimated. It’s hard to understand. It’s hard to reconcile.

Needing help all the time is also hard to accept for someone who is, and always has been, fiercely independent to a fault. It’s hard to need when you’ve never wanted to need. It’s a hard thing to accept. But when it’s your constant reality it starts to become apparently clear that there is no other path to go down but the one that has you leaning consistently instead of standing straight on your own.

Maybe this isn’t your experience with chronic illness but a lot of people who are ill feel this way. Your life changes and so the way you see yourself has to change too and that’s the hardest thing to understand sometimes. Those days of just going don’t exist anymore and the meticulous way you have to live your life begins. It’s overwhelming and mostly, it’s tiring.

At times it makes you long for the life you had. Until you realize you were struggling then too, you just didn’t know why. Now at least you know why and when helping yourself is a possibility you might be able to take that chance on you. The life you lived is gone, there’s nothing you can do to get back that space so instead we mourn and grieve what we no longer have.

It feels like a constant and evolving process, this kind of grief, as it comes in body crushing waves sometimes and other times like the whisper of a breeze on your skin. But it’s always there especially when I’m humbled by something physical like being unable to walk or leave my bed. This grief settles in for the life I once had, the abilities I took for granted, the space I existed in before this became my all day everyday.

With the grief comes this strange embarrassment. At being sick, at what it has done to me and what it continues to do (as if I could control any of it either way), at needing the amount of help I need sometimes. All of it feels like one big embarrassment.

So I try. That’s all I can do. I try not to be so hard on myself and to allow myself the help I need. Sometimes I even ask for it no matter how uncomfortable it makes me. I try to accept that life has changed and will continue to change because that’s what life is. I try to get out of my own way when I feel bad and stand in the sun when I’m feeling good.

That’s all I can do and that’s all you can do too.

[desroundtree]

I’ve always been a thorough person. I follow up and follow through. It’s hard not to imagine myself that way. Just letting things be what they are. Just pretending important things don’t matter. Living in a space where half ass is how I maintain relationships I might be through with.

But thorough is precisely the type of person I need to be right now. The type of person that doesn’t just allow chips to fall where they may, and lets people show me who they are and doesn’t try to change them. Maybe I just need to finally learn to let sleeping dogs lie. To let people be their own thorough selves and to accept that, no matter what it shows me.

It’s not easy to come to the conclusion that this decision is also being thorough. That this is not giving up on people and things but choosing. Choosing what feels right and thorough to me and to what I deserve. To what I should expect of people and things in my life. This little but huge step is me being the most thorough with every bit of my being. It’s being the most authentic and the most true to me, and I owe that to myself.

Maybe thorough doesn’t make sense to some but it makes sense to me and at this point in my life making sense to me matters. It matters because when things don’t make sense I don’t feel well and I need to feel well. So being thorough matters because I matter. It’s hard to explain to people that you matter especially when they should know, especially when they did know.

Be thorough. With yourself and your feelings and what those mean to you. Be true to what that means no matter how uncomfortable it might make you in the moment or how much you think your life might change. Change is good. Change is necessary and change, above all else, is thorough.

[desroundtree]

What is validation? Do you ever offer it to others? Think about how many times you have been asked to validate someone’s feelings or experiences but instead replaced it with your own. Think about how many times your response has been about what has happened to you not what is happening to them. Think deeply about how problematic it is to lack the empathy to see what your actions have done to others. 

This is what life feels like sometimes to me. It feels like I have all the validation to give when necessary but it’s as if there is no validation when I need it, want it or deserve it. And to be honest there are just times when that is all you need, simply to be listened to, read, and not to have your situation compared to the other person’s or even to be given fault when you know you own none of it. Sometimes that is just what you need.

So if someone comes to you for validation, if someone tells you that you hurt their feelings - it is ok to apologize even if you don’t understand exactly why you hurt their feelings, then it’s ok to get to the bottom of it. But what is not ok is to sit somewhere and point your finger at the person who had the nerve to tell you that you hurt them in the first place. 

That is not ok, and it’s not tolerated in my world. Not anymore.

[desroundtree]

What happens when you lose someone? And I mean really lose them? Not like we had an argument and we’re not talking kind of lose them, I’m talking about the kind of loss that you experience when you wake up and that person just isn’t there anymore. During Covid we tried our hardest not to expose or be exposed to anybody because of my illness, not because of them. Sounds selfish when you put it that way, but the truth is I learned that I need to protect myself in that way in order for me to get through this.

We’ve lost someone. My husband’s aunt. His Mom’s best friend. The last of a generation. And we haven’t lost her really if you think about it. She was taken from us. She did everything she was supposed to do, she wore a mask, she washed her hands, she socially distanced. But it happened anyway. And to be honest, I wish none of it had happened. My heart is broken, I don’t know where to put all this pain, all these little memories flickering through my mind. Like when she told me the child in my belly made Dale proud (my husband’s mother who has been gone for a long time now). She was a special woman - one of integrity and spunk. She was sassy and the best dancer ever. She loved boxed wine and I might go get some this weekend just to honor her.

I don’t know how to handle the next event and not see her there. I just don’t know how. How do I walk into a space that was always filled with so much joy just because she was there? How do I walk into a barbecue, or a family party, or anything after all of this is done, and not have Barbara there. It’s such a loss, and I’m really not sure how to handle it. It’s an even bigger loss for my husband, who not only lost his aunt but his mothers best friend and the only person who really had memories that were deep, honest, and true to share with him. And for her daughter, who had a normal mother daughter relationship with her obviously, to hear the pain in her voice - to hear her crumble with the thought of never seeing her mother again. It’s all too much to handle without Barbara in this world.

My heart is broken.

[desroundtree]

Sometimes I guess it’s hard to understand how people justify their actions. Maybe them not justifying them is a justification in itself. Not feeling like you have to explain actions you committed that hurt other people is something I will never understand. It’s something that doesn’t make sense to me. It’s something that doesn’t warrant sense. At times I wonder if things will ever be different again, will we ever sit at dinner and talk, will we have a laugh over a bottle of wine, will we ever see each other again.

And it’s not because of anything that I’ve done. It’s more for all the things I accepted that were being done to me. There was a space where I was just allowing everyone and everything to do whatever they wanted. It felt very very unlike myself, I felt like a person who was having so many things done to them but not really ever becoming a part of those things. Good or bad, I just wasn’t a part of that happy and growing space. At least not anymore.

I felt like and I still feel like a person from the outside looking in, but not one that was never involved. More like one that has been pushed out and pushed away. Maybe that wasn’t the intention of the person but I believe it was. I believe we move through this world with intention and we choose the things we do and we choose them purposefully whether they be good or bad. And if your intention is to hurt somebody who’s never ever hurt you and has never meant to hurt you then what place do you really have in my life?

It’s hard to write these things honestly. Because it’s hard to feel these things and to understand that I might not ever come to a place where I don’t feel this way. The anger that is seething within me is uncontrollable at this point. Feeling like I’m at a boiling point is the least of the problems. There’s nothing more that I wanna do than to confront everyone and everything that has made this situation possible. Try to understand why they feel it’s OK for them to navigate the way they do in circles that involve me. It has an always been this way. I was always asked, I was always invited, and now I’m not. And there is absolutely nowhere to go from there.

[desroundtree]

“Pain makes your world very small. My world had been this room.” - June Osborne, “The Handmaids Tale”

The sheer truth of that statement cut me to the bone and I cried. June meant all the pain - physical, mental, emotional - every pain imaginable. And I meant and felt it the same way. It’s so hard to imagine a day without pain at this point, but it’s something I am learning to deal with, handle and maybe even fix at some point in time. That’s the goal, of course.

Pain has kept me prisoner for far too long, anxiety has done the same and so has trauma. All of it holds you in this vicious cycle that doesn’t seem to find its end. Even when you spend what feels like every second of your life searching for that one answer, it continues to allude you. The one answer that make might it click or make it feel better. When it doesn’t come, it’s almost like this feeling of instant failure. A space where there is NO space to get better. A space where you begin to feel like getting better goes along with something you earn. 

Sometimes I know better than that of course. This is something I live with, the pain in whatever form it exists. Sometimes it feels bigger than all the cosmos, but I know it isn’t. I have to learn and teach myself it’s not all encompassing and swallowing me whole. Those are the hardest lessons but they certainly make me stronger, more durable, and ready for whatever the world has in store for me.

This is not positivity. Believe me. This is what I have to do to exist and to get from point A to point B without losing half or all of my shit. It’s been more difficult lately, to find space and when I can’t find it, to demand it. Pain requires space, but it also requires boundaries. So I have tried to set boundaries with my pain as well. It feels like arguing with a ghost in the mirror sometimes but I usually win arguments....

[desroundtree]

Learning is hard but I also understand how hard it is to unlearn things.

When you are accustomed to allowing things to happen to you because of who someone is, or how old they are, or whatever excuse it is we make nowadays for toxic behavior, it is hard to see that behavior as wrong. It is hard to understand something when it is happening to you even though you could see it happening plain as day to someone else. The maddening part is we simply do it because for so long it has been allowed.

Allowances are another thing I have learned to live with and no longer have any place in my life.

Things become uncomfortable when you stop allowing people to behave whatever way they like with your time. Because to put it simply, that’s what it is. People acting how they would like to regardless of how that makes you feel. That might be hard to read, believe me it was hard to write. It happens to me more than I care to admit. I come to a place where I sacrifice what I feel because other people think it’s the right thing to do. Or the right thing to say or the right thing NOT to say.

The truth is, the only right thing to do is what YOU feel in your heart. Other people may not understand what that entails - be it distance, disagreement, or silence, or anger. But that’s not for them to understand. No one has to “get” your process. It’s YOUR process, and if that is going to get you where you need to be, if it’s going to allow you to find your freedom and happiness - then who cares who doesn’t get it? This isn’t about them, it’s about you.

Life is to short to spin your wheels so people TOLERATE you. The world is too vast to beg for love and acceptance. Because that same world is so large there is also no time for bullshit.

I have too much to do, too much life to live, and too much love to give to spend time loving people who don’t love me. It’s too exhausting to perpetuate the fraud of relationships that don’t exist, or do exist built on a base of “I have to because...”

I don’t have to.... not anymore.

[desroundtree]

Living with assumptions has been the hardest thing to come to grips with after being diagnosed, then living with excessive symptoms and flares. My life has obviously changed, it’s harder than it has been and I can understand a certain level of apprehension when approaching me and life.

But it’s almost like there aren’t any questions anymore about what I can handle, where I can go, or what I’d like to do. There are assumptions about what would make me happy, about what I need to be comfortable, what makes sense to me. Assumptions made about things from A to Z.

All of these assumptions are made with zero input from me. Which makes them feel all the more asinine and invasive. I am the one locked in a box because someone else feels I can’t handle a walk, a day in a park, a vacation. All of these things seem relaxing so why couldn’t I handle them? Why couldn’t I handle laughter and conversation and memories? Why couldn’t I handle a few happy moments in life?

Simply because someone else believes I can’t. Because someone else simply didn’t ask what I’m capable of, what my life is like, and more importantly, what I want. Simple. Yet so difficult for some people.

Maybe it seems like you’re doing me a favor by making these decisions for me. But autonomy is something that I crave in my life and in my illness. Since my disease is something I can’t handle, something that has me claim a constant state of movement, I love the ability to make decisions about MY life. Being disabled, having a chronic illness, having mental illness doesn’t render me incapable of making decisions about my happiness. It helps me to see even more what I need to feel happy.

Yet, it’s always viewed as a reason not to include me. Not to ask me. Not to see how I am. My disability is the reason I am not included when it’s the precise reason I should be included. Because my disease has no cure, because I face my mortality with a steel gaze and sometimes, just sometimes, I want to choose to have the sun in my eyes instead.

So give your disabled friends and loved ones some credit. Allow them to make decisions about their lives. Don’t decide what they can and cannot do without talking to them. Do not choose for them.