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.

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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.

Disability privilege?

I spend a lot of (read: too much) time on Twitter. I mean a DISGUSTING amount. I guess that’s what happens when you live in a state where everyone’s concept of fun involves spending time outdoors but your legs just aren’t having it. On Twitter, there’s a lot of talk about current events, celebrity feuds, and the proper use of “your” vs. “you’re”. There’s also recently been a huge trend toward discussing the concept of privilege.

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Chances are you’ve probably seen the articles about it, too. White privilege, middle class privilege, thin privilege, able-bodied privilege, straight privilege. Since I’m 4 of those 5 things, I guess I don’t have a lot of room to talk. I mean, aside from depending on other people to help me with every physical aspect of my life, I’m pretty privileged.
I want to talk about disability privilege, though. Because it’s a thing. It’s only a thing because I make an attempt to see the silver linings in most clouds, but I benefit from a great deal of disability privilege.

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Let’s start with the parking. You know I have to address it. Sure, there’s been an upswing in expectant mothers parking but no matter where you go you can expect to find a handful of handicapped parking spaces. This means the mall, the grocery store, even the gym, have spots set aside specifically for those with mobility disabilities. Oh, it’s sleeting? Lucky for me I have a little plastic placard that almost guarantees me a spot less than 100 feet away from the building entry. Talk about jackpot.

Next, I want to address concert and event venues. Disclaimer: I do NOT speak for all disabled people with this statement (or, for that matter, with any statement). I know people who have had terrible experiences with concert venues being inaccessible and that is inexcusable. However, I have had nothing but great experiences with almost every event venue I’ve been in. By great I don’t mean they were willing to work with me – I mean they pampered me. “Oh you’ve got cheap seats? There’s space in the pit, let’s get you up front.” And the look on people’s faces when I get to pass an entire line to get into the concert and get my seat early? PRICELESS. Well, not priceless. The price is the total lack of independence…but they don’t need to know that. They can just carry on thinking I use my wheelchair for nothing more than primo seating. It’s easier for them that way.

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Concert seating leads me to celebrity interactions – my favorite part of being disabled (if we’re being real, there aren’t many to choose from). Now, I’m not naming names, but there’s a certain young wizard who is considerably shorter in person than he seems in the Great Hall (if you know what I’m getting at). There have been a few other times where I’ve met people because of my disability and let me tell you, THAT’S a privilege.

This post isn’t intended to make light of privilege (I’ll do that later, trust me), or even to make my disability seem like a walk (drive?) in the park – it’s not. The point is, in almost any situation you will ever be in, something good can be found in it. You just might have to work a little harder than you’d like to see it.

Maine, the way life should be

If you’ve ever talked to me, or seen my posts on social media, or possibly even looked at me, you know that the one thing I hate more than anything in the world is cold weather – more specifically, I’m convinced that snow is really just Satan’s tears. The only Winter Wonderland in my book is a palm tree with colored lights on it surrounded by sand. That’s it. Below, you can find a short list of the things I do in Maine in the winter.

1. Cry, because it’s cold and my fingers hurt

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2. Watch Dexter, because it satisfies my need to see Florida sunshine, as well as my own personal winter-induced “dark passenger”

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3. Make 7 or 8 attempts to get into a building, because my wheelchair keeps sliding down the ramp no matter how much sand or salt we put on it

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4. Cry, because instead of being inside where it’s warm I’m outside literally spinning my wheels

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5. Text my best friend to ask her if she’d like to spontaneously move to Florida, today

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6. Make a pros+cons list of living in a house in Maine vs. a cardboard box in Florida


7. Google flights to Orlando

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8. Sit in front of the woodstove and stare at the wall, because it’s better than sitting in the cold to watch TV

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9. Cry, because there’s 4 more months of misery

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10. Pull myself together, because Lilly Pulitzer season is right around the corner

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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.

Excuse me, that’s my tax money

Today I had a weird thing happen. I became the person I judge on a daily basis. I went through the grocery checkout, paid with my EBT cash card that gets automatically refilled every month by some magic bureaucratic minion, and then went and bought a Powerball ticket. I could see the look on the cashier’s face and, maybe only because I’ve had that same look so many times, instantly knew what she was thinking. “If she’s getting government money, why is she wasting money on a lottery ticket?” It wasn’t mean-spirited, it was almost a sense of personal hurt at the fact that her tax dollars were paying for my groceries and my money was paying for a Powerball ticket (dear cashier, wherever you are, if I win I will absolutely share!).

As a huge proponent of welfare reform and someone who fully supports the idea of not using anyone else’s tax dollars for something considered a luxury, I get it. I’ve been in her shoes. I’ve felt the same things I’m sure were running through her mind.

But here’s what she didn’t know – and couldn’t be expected to.

  • I work an average of 30 hours a week and come home exhausted, to the point my arms are so exhausted that by Friday morning I can’t apply my own makeup
  • I pay someone $400 a month to get me back and forth to work – out of my pocket – because there is no program to pay for someone to get me to work (it’s not considered vital to living)
  • I don’t qualify for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) because my income is too high…and trust me, it’s not that high

Those $10 a month from that card are what I get from the government to help with any of the extra costs associated with having a disability. And that is why I’m such a proponent of welfare reform. You shouldn’t have to live in poverty just because you’re disabled. There are ways around it, but in most states the waiting list for the waiver (allowing those with disabilities to earn a reasonable income and still receive the help they need) is 3 or more years. I’ll remain a proponent of welfare reform for as long as it takes, because I will forever think that you get what you work for, but after today’s reminder of what it feels like from the other side I’ll make an effort to keep my inner monologue a little more understanding.

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As far as the Powerball goes…I’ll keep you posted.

“Why can’t she walk?” “Why can’t you think?”

If being alive has taught me anything it’s that having the ability to walk doesn’t mean you have the ability to form logical and intelligent thoughts. So why do so many able bodied people think that my inability to walk is somehow indicative of my inability to think?


I can’t count the number of times that I have been approached by someone who spoke to me with slow, short words – always accompanied by a gentle shoulder touch or clasping my hand. Or worse, the people who come up to me and my friends (you’re probably surprised to learn I have them) and ask my friends my name, or how old I am, or why I can’t walk. This is where able bodied people’s lack of logic comes in – if you saw me talking with said friend a minute before you came to talk to us, why would you assume I’m incapable of answering for myself? Did I somehow lose the ability to form a coherent thought in the last 45 seconds? Unless I have a shot glass of tequila in my hand, that’s probably not what happened.

I have generations of stereotypes to fight, and since I can’t have my Twitter feed on a continuous scroll across my forehead, I find myself overcompensating in person. I’m forever terrified that people will think I’m stupid – or worse, boring – simply because my legs don’t work, and that’s an assumption I’m just not okay with.