Being scared isn’t a bad thing

I’m always pretty open on social media about my disability. I mean, I can’t really hide it. I talk about lack of public access, or funding problems, or not being able to open jars and Pop-Tart packages. But one thing I don’t address publicly very often is that having a progressive muscular disease can be pretty damn scary.

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This cat doesn’t have thumbs and can still open jars better than I can

I don’t talk about it a lot because, truth be told, I don’t think about it all that often. It doesn’t affect my day to day life, and usually the progression is slow enough that I don’t really notice it until suddenly I can’t do something I used to be able to. I generally don’t think about the fact that I could be one illness away from losing the ability to independently breathe overnight. Whenever I say things like that I feel like I’m being a fatalist or morbid but the fact of the matter is it’s just the reality of the situation. Avoiding the topic isn’t fair, because it’s okay to be scared and it’s okay to let others know you’re scared – we all feel it sometimes, and it doesn’t have to be disability related.

I have been so blessed with friends who are willing to share the burden with me. I may get scared but I never feel isolated. I met my best friend when she was 15 years old – and let’s be real, what 15 year old girl wants to deal with doctors appointments and talking about how a common cold leads to pneumonia? None of them. But she did, and over the last 6 years she has been through so much with me that I’m surprised she sticks around. This goes for all my friends. Last night when I told them I was nervous about an appointment today, all of them offered to drive and go with me. Not out of guilt or pity, but because they knew I would do the same thing for them.

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If I could offer any advice to anyone – disabled or not – it’s to build a support system. Surround yourself with people who you can discuss your fears and weaknesses and insecurities with, and make sure they can discuss theirs with you. There should be no shame in being afraid of things, and I’ve found that more often than not talking through the things I’m worried about with someone close to me can calm me down enough to start thinking more clearly instead of spiraling into an anxious mess.

Sorry for the heavy Thursday morning post…but at least tomorrow’s Friday?

PSA: Chronic Pain hurts

Being diagnosed with chronic pain was one of the best and also one of the worst days of my life. It meant that I would likely live with this for the rest of my life, but it also meant I could stop searching for answers.
Starting around age 16, I was missing school several days a month with migraines and extreme leg cramping. It would get to the point where I would almost black out in pain. I spent years back and forth with doctors; they tested me for blood clots, did ultrasounds, CT scans, MRIs, blood tests, everything imaginable. They found nothing wrong. I tried several different non-narcotics, for nerve pain and anti-depression medicines. None of them worked, or helped with my pain at all. All I got were some pretty nasty side effects and no relief. As someone who prides herself on knowing which drugs are addictive, the fact I was taking Vicodin several times a week really started to wear me down – just not as much as the pain itself.

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So when I went to the neurologist – my favorite specialist I’ve ever met – and after some tests he informed me I might just have nerve damage due to a past injury I was relieved. I think he was surprised at my reaction, and I probably thanked him 25 times before I left the office. Of course it was upsetting to know I’ll be dealing with this for years to come. The week prior to my wedding will have a chronic pain cloud over it, and if that pain joins me on my wedding day I’ll do what I always do and pretend it’s not there. But now I won’t keep wasting years and trips to the doctors and money on prescriptions for things that just won’t help.

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You see, pain is exhausting. Waking up with a migraine more mornings than not, and then going about my day as if my head doesn’t feel like it might explode, is exhausting. Constantly hoping that the plans I make won’t be ruined by an extra
-severe pain day is exhausting. In many ways, my chronic pain is much more crippling than my Muscular Dystrophy. I’ve spoken with many people with chronic pain and they all agree: finding a balance between medicated and lucid is difficult.
Taking just the right amount of pain medication to take the edge off, while still remaining a functioning adult at work and social functions takes practice. Being aware of my medication tolerance, and ensuring that I don’t start building a tolerance
and therefore an addiction is not easy. Most also agree that “alternative medicine” doesn’t work – or at least not as well. We get sick of hearing “Have you tried acupuncture?” or “You need a massage” – no matter how good the intentions are. Breathing exercises are great, but they’re by no means a cure all.

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Given the cards I’ve been dealt, I still maintain a pretty positive outlook, so days that I’m short or cranky or over emotional, it’s probably because the pain is too much. Please forgive me if I seem slow to respond or like I’m not paying attention to your words. I’m still trying to master the balance of pain management, and I can’t do it without my support system. To anyone who has had the pleasure of dealing with me on a pain day just know that I appreciate you more than you know. I think I speak on behalf of all chronic pain sufferers when I say that good friends make it all worth it in the end.

I mean you’re cool, but

Dating in midcoast Maine is hard. Frankly, everything in midcoast Maine is difficult. But dating in particular is difficult – it’s an extremely small dating pool and the activities to pick from are limited. “Do you want to go drinking?” “No we did that
last week…let’s go eating instead.”. So even if you’re not disabled, this post will probably be pretty relatable. But you know what’s extra hard? Dating when everyone thinks of you as “that girl who’s really pretty, for someone in a wheelchair”. (Did I just call myself pretty? Yes. No shame in my confidence game).

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This one’s a weirdly sore topic for me, because my middle school and high school years were actually pretty great as far as adolescence goes. I had a ton of friends, I got out and did a lot of things, and for the most part my wheelchair was the least of my worries. As a matter of fact, the only time I really remember recognizing that I was different because I was in a wheelchair was when the guy I was crushing on (do kids still say this?) said “I really like you but I couldn’t date you because we couldn’t dance together at dances”. Which, first of all let me say, nobody dances at a middle school dance.
Nobody. I’m calling you out on your shitty excuse, sir.

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This wasn’t an isolated incident, although after that nobody ever put words to what they were feeling quite as concisely. Through high school, while my friends cycled through boyfriends, I was constantly hearing “You’re so great and your friend is really cute, do you think you could set us up?”. And I did, because I’m nicer than one might expect. Although all of my classmates were great about including me in everything we did – but I lived, and still live, comfortably in the friend zone.
People won’t tell you the friend zone isn’t really a thing, and in many cases that’s true. However, I think most disabled people – wheelchair users in particular – will agree that it is very real, and it is something that we fight our whole lives. Just because Spinal Muscular Atrophy is a pediatric disease, that doesn’t mean that I am indefinitely a child. I am 24, I work more or less full time, I have friends, I drink, I shop, I own my own vehicle. I am very much an adult – and having a pediatric disease shouldn’t mean that I am destined to become a 45 year old chihuahua lady who’s “a great girl, I just couldn’t date her”.

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Being disabled doesn’t make us children, and it certainly doesn’t make us undateable. We like movies, and hanging out, and sometimes even Netflix and Chill. It’s not up to you to worry about “well how does it work?” because that’s our job. We’ve spent our whole lives figuring out how to do every day things, dating would not be the biggest hurdle we’ve had to overcome. Seriously, give it a shot. You might just find we’re not all that bad, after all.

If you’re reading this

When I was a kid, my friends used to forget I was disabled. Not so much that they’d forget I was sitting down or anything like that, but they’d skip down stairs and expect me to follow them. While this is partially because badassery comes naturally to me, it’s also because my teachers all the way up through my senior year made it possible to forget. When I was 9, 10, 11, I severely underappreciated the time and effort my teachers put in to making my every day experiences seem as normal and seamless as possible. During 7th grade gym class, while the rest of the kids juggled or rode unicycles during our circus unit (why is that a thing?) I learned cup stacking. To me, it seemed obvious that there would be some wheelchair-accessible alternative to what the other kids were doing. That’s just how the world works, right?
Wrong. I’m sure Mr. Lyons (shout out to you, wherever you are) put his free time and thought into figuring out something I could do – but he never let me see what was going on behind the scenes. My 8th grade science teacher never let on that it was inconvenient to have to coordinate with a parent to come in and help push my manual chair through the woods for our outdoor science unit. My 6th grade teacher picked me up and carried me into a boat on a school trip like he’d been doing it for 20 years.
I’ve recently discovered that I can sometimes have a hard time connecting with other people with disabilities, and until about 10 minutes ago I haven’t been able to figure out why. I don’t identify as a person with a disability. I don’t wear it proudly on my sleeve, or push a disability activist agenda. I just live my life, and remain extremely grateful for those around me who allow me to do so. People who don’t plan too far ahead and make my chair seem like an inconvenience. People who don’t see me as “Meaghan, the girl in the wheelchair” but instead see me as “Meaghan, who’s not great at stairs”. I never went to the Muscular Dystrophy camp to meet people who were “like me”, because the people who are like me surrounded me every day.

  
So if you’re reading this, it’s a thank you note to you for making me feel like Meaghan. And just know, if you ever need a token disabled friend, I volunteer.