It's the final Saturday of July, and as such, it's also the last part of the Disability Pride Month series of posts I made this month. Today's closing blog is going to be a bit different from what I usually post, though. Originally, what was supposed to come out today was going to be a blog talking about George Pig and his hearing loss, but that will be shafted to next month.
Instead, I decided to get personal about my own experience with my health.
I mentioned before in my ROTTMNT and TADC analysis that I do not identify as a disabled person. That being said, I do have a condition that can cause disability at times, and that condition is multiple sclerosis, or MS. I was diagnosed with it two years ago, and this July (7/12) actually marks the two-year anniversary of the diagnosis and the three-week hospitalization that subsequently occurred after.
Not many people know what MS actually is, and I hope that this post raises awareness of what it is, what it's like to have the condition, and how you can support people like me who live with multiple sclerosis every single day.
Let's start off two years ago. I remember the day my first symptoms showed as if it were yesterday. It was the Saturday after the 4th of July. Before that day, everything was normal. I was going to 4th of July parties, talking with friends, and overall having a great summer. I had even gotten my babysitting and CPR/AED/first-aid certifications the month prior! Nothing could get me down.
And then I woke up that Saturday morning, and my right eye was blurry.
At first, I didn't think much of it. Maybe this was the consequence of me being on my phone for so long in the night now that summer was here. And besides, I had been sleeping on my face, so it was a given that my eyesight may be a bit squished.
But throughout the day, my eyesight didn't get any better. I fact, in some ways, it seemed to be getting worse. I struggled to read up close without lifting what I was reading to my face directly and not even squinting helped. I couldn't play computer games for so long without needing to stop. It was like I was seeing static, a weird type of 'blurry' that wasn't just the myopia I've come to grow accustomed to. After a couple of days, days when my vision didn't get better, I talked to my parents, and they said if my sight remained so blurry, that they'd call the doctor.
As the week went on, my eyesight continued to decline. By the time Thursday rolled around, it was affecting my left eye too, and basic tasks like pouring cereal, reading a book, and even watching TV became impossible. It was when I dropped an entire box of Honey Bunches of Oats on my kitchen floor attempting to make breakfast when I realized that this was way more serious than I initially thought.
So, that same day, my mom and I rushed to my pediatrician's office.
At the doctor, I did a bunch of eye tests. You know, the type where they make you cover an eye and read the words on the wall. No matter how close I got, I couldn't read a single letter. It was only when I stepped nose to nose with the wall that I was able to make out a single letter, and even then it was hard to make out anything more than the giant "E."
The doctor took the results, walked out of the room, walked back inside, sat down, and said as gently as she could that I needed to get to the ER ASAP, and that they were already calling the hospital.
The amount of fear and panic that rushed into my body that second was something I wouldn't wish upon my worst enemy. Well, I'd wish for them to feel it for just thirty seconds, so they'd think twice before making fun of my anxiety. I was horrified. To think that just a few days back I was thinking about beach trips, birthday parties, and fun times.
My biggest worry then was simply finishing my summer homework; now, it was surviving.
I cried the entire ride back home, and I continued crying until my dad made it out of work to drive us to the 45-minute away hospital. My parents tried cheering me up by pointing out city monuments and playing music, but nothing worked. I was just too scared.
Just a few minutes after getting to the emergency room, I was whisked back to a room, where in the span of the next twelve-to-fifteen hours, I had multiple tests done evaluating my eyesight and neurological standing points, was asked multiple questions about autoimmune disorders, I was admitted to the hospital, and then, the following morning, I was given an MRI that lasted almost two hours. An MRI with no movie or no music- just me, the machine, and those god-awful beeping noises.
Less than a half-hour after my MRI from hell finally finished, with my parents and aunt (who had rushed to the hospital the moment she heard the news) by my side, I received my official diagnosis: multiple sclerosis.
The first thing that came into my mind? Thank GOD this isn't glioblastoma (Yes, I know I watch way too many medical dramas). A close friend of mine passed away from the tumor some years ago, and I've been a bit paranoid ever since about the chances of me getting a cancer like it.
Imagine you live in a house. In your house, there are appliances like a TV, a fridge, and a computer. And connecting those appliances together are wires. Think of the appliances as your brain, and the wires as the nerves holding the system of machines together. The cover that protects the wires is the myelin sheath, making sure it's safe from harm.
And then, imagine a family of rats move into the house. You didn't do anything wrong to cause them to come in- they just show up one day. The rats gnaw on the wires of the appliances, creating small, tiny lesions in them. The lesions disrupt the signaling between the wires and the appliances, like the lesions in MS disrupt signals between the nerves and the nervous system. And because there is no cure for MS, there is no way to deal with them, just like there's no way to fix the holes in the wires without replacing them as a whole.
On some days, the machines work normally. You don't even remember the holes are there! But on other days, the TV refuses to turn off, the food in the fridge spoils, and even the computer is on a fritz. It seems like everything is falling apart, and all you can do is call a mechanic or wait it out. These days are relapse days, and they can last from as short as a few hours to a day, to as long as weeks or even months without treatment.
Around you are other hosues with the same rat problems. But each house has a different issue. Some houses never have 'rat attacks; at all. Others go months or even years without them, only for a relapse to occur at the sight of a trigger (relapsing-remitting). And for a few, unlucky houses, more and more rats move in even with treatment, progressing the damage of the house further and further (primary progressive).
This is why each case of multiple sclerosis is different. Lesions can present in different places, causing a variety of symptoms that often go either unnoticed or misdiagnosed by doctors. One person with MS may never have any relapses outside of diagnosis, and are able to live a pretty normal life. Others have severe relapses and use wheelchairs and mobility aids to get around. No person with MS is the same.
And it's also why I felt so alone after my diagnosis.
On one hand, all of my issues had a solution now: my eyesight, my random bursts of fatigue, the way my words had started to come out more and more jumbled as of recently: it was all MS's fault (and a severe iron deficiency too, but whatever). But, at the same time, my path felt unpredictable. Who knew if I was going to retain the same level of cognitive and physical ability I had now in the long run? I didn't even know a single person who had the condition; there was quite literally no one to talk to. My anxiety worsened when I found out that the steroid medications I was being given were not working as effectively as they ought to be, and that I needed to stay in the hospital for an additional two weeks in order to receive a treatment called plasmaphereses. All my blood would be routinely filtered out every other day of my body with a giant machine and replaced with fresh plasma to hopefully kick out the B-cells that were causing the relapse.
If I could tell little fourteen year old me anything now, it would be to focus on the present. It's so easy for any of us, especially an anxious ball of fluff like I am, to worry about the anxieties of the future or the mistakes of the past. But, the past is gone, and the future doesn't exist. What's only present is the now. I'm still trying to implement this into my everyday life, but I'm better at it now than ever before.
In the hospital, I did a lot of reflection. I started journaling my feelings and talking to my social worker about what I was going through mentally. Along the way, I had a large support group consisting of my mother, my father, my little brother, and all the amazing aunts, uncles, cousins, and friends who popped in to make the long drive to the big city in order to visit me. I have to admit, I was and still am extremely lucky to have such a tight-knit community surrounding my family and I.
By the time I was released from the hospital, I had gained back full clear eyesight in my left eye, and my right eye was on track to do the same by the end of the month. It took months for me to deal with the mental toll of being diagnosed with a neurological disorder. On top of this, I was also already dealing with my diabetes, and I had to start thinking about whether my Type 2 diagnosis was actually a case of LADA or not (autoimmune disorders often come in pairs).
In retrospect, I probably should have seen a therapist, but at the time, I was too ashamed to do so. Luckily, I have a social worker right now who's great.
Now, my treatment plan involves getting special infusions every 5-6 months and visiting my neurologists twice a year. I'm happy to report that I have yet to have a serious relapse since that fateful July, and I'm in the process of pulling back on my medications a bit as well. I know this isn't the 'usual' path people with MS get to take, and I'm grateful I was lucky enough to be able to do this.
Looking back on my MS journey, if I had the ability to go back and remove the disease from my body, I'd definitely take it. I wouldn't, however, take away the experience I had in the hospital. I made so many wonderful connections, and although it was hard and emotionally taxing in the long run, it taught me so much about perseverance, hope, being vulnerable with others, and the power of community. Being a patient is a big reason I am now interested in going into the field of public health and policy: I want to speak for others who can't speak for themselves.
It also gave me a greater empathy for those like me who also struggle with autoimmune disorders. Lupus, vitiligo, rheumatoid arthritis, type 1 diabetes- we all are united by the shared betrayal of our bodies towards themselves. I have begun to look up to celebrities such as Selena Gomez (lupus warrior!), Nick Jonas (fellow diabetic warrior!), and Selma Blair (fellow MS warrior!) This is why representation matters. This is why we fight so much to see all types of people showed in the media. This is why we have occasions like Disability Pride Month, to teach others about what we go through and to advocate for those who suffer.
When I see discourse about representation in media, from people who can't fathom the idea of a little mermaid being black or a princess having two dads or a warrior in a wheelchair, I think of myself.
I think of the little Black girl who wanted to be a doctor so badly and lit up when she discovered Doc McStuffins on Disney Junior for the first time.
I think of that same little girl, giving herself insulin shots for the first time, finding out her favorite Jonas brother has the same disease and smiling. I think of a younger kid at my old school who also has diabetes, running over to give me a hug when we ran into each other at the nurse's office because I was the only person she knew who could truly relate to what she went through every single day.
I think about fourteen year old Dovely, so incredibly scared, and now, two years later, so incredibly happy.
And right now, I'm thinking of myself once more, finally brave enough to come out and share her story, hopefully helping those who find hardship in helping themselves.
Happy Disability Pride Month, everyone. Here's to a thousand more to come.
