What a wedding photographer did for me

In 2011, a friend of mine who knew I was interested in photography suggested I check out Katelyn James, a young wedding photographer. At that time I had no idea how important Katelyn would end up being in my life. 
For about 3 years after that, I was convinced that I was destined to be a wedding photographer. Not only that, I was going to be the next coming of Katelyn James. (Take it easy on me, I was in the middle of an early onset quarter life crisis.) It didn’t matter that I wasn’t physically capable of being a full time wedding photographer, or that my personality was entirely different from hers. All I was focused on was how much her blog posts (this is the one that started it all) and her photos inspired me, and that I wanted to do that for others. It wasn’t until I had been at my current office job for over a year, and gone through the depression associated with realizing that my disability would prevent me from achieving this dream, that it hit me. 
My purpose is not to be a photographer. It is not to model my personality off of someone I didn’t know beyond their internet persona. My purpose is much different, but equally as important. For years people have thanked me for the small bits of insight into the life of someone with a disability that I offered through my social media. The time has come for me to transform that into something more meaningful. 

 

My best friend Melissa and I with Katelyn and her husband Michael
 
After 5 years, I was able to meet Katelyn and hear her speak just over a week ago, and she said something that really resonated with me: pain has purpose. My struggles with my disability (and with life in general) offer many teachable moments for myself and for others. I truly hope that by sharing both the good and the bad parts of my story I am able to help even one person – with or without a disability. I’m fairly certain that that is my purpose. 

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How my mattress changed my outlook on life

One of the things doctors won’t tell you about having a mobility disability is that you won’t sleep. You will be tired all. the. time.  For most of my life I have woken up at least 4 times a night – sometimes more – to reposition. That means that, like an infant, I was waking my parents up several times a night just to help me out. I’m 24 – that is not cool fun. I had just accepted this was how it had to be. I can’t move myself, so of course someone had to help me, right? My parents both suggested that I try different mattresses but I was so convinced that it would never get better that I didn’t bother trying. Well, as much as it pains me to admit it, they were right (just don’t tell them I said so).

A few weeks ago while I was in the midst of whining about my back hurting, my dad insisted that I look at new mattresses again and pick one. I don’t know if you believe in fate, but if you don’t I’m about to make a believer of you: after years of putting off purchasing a new mattress, the Sleep Number bed I was looking at was on sale for just 2 more days after I decided to try a new one. Seriously, God? Thanks for the discount. After trying the mattress at the store, we ordered it in hopes that it would relieve at least a little of the pain I was suffering every night and hopefully allow all of us to get a little more sleep.

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But actually my sleep number is 35, just FYI

Since my bed got here, I have only woken up to reposition 1-2 times a night. Is that ideal? No. Would it be great to sleep through the night? Obviously. Is this much better than waking up every 2 hours? Absolutely. Especially after years of thinking that I was doomed to never get a restful night’s sleep for the rest of my life…because that is not a fate that I’m okay with.

So basically what I’m saying is that if you’re in a situation that is not where you want to be, don’t accept it. Many (not all) life changes are in your power and it is up to you to make your life – and your sleeping situation – into what you want it to be. It might take some trial and error, and you may have to admit you’re wrong sometimes, but sometimes being humbled isn’t such a bad thing after all.

How Do You Do It: Airline Travel

I’ve been in a wheelchair for the last 19 years of my life, but I would not consider myself an expert by any stretch of the imagination. I don’t usually feel I have a lot to offer in the way of new information to others with disabilities, because honestly I’m still figuring it out as I go.

One thing I feel pretty confident writing about, though, is traveling as a person with a mobility disability. Maybe it’s because we didn’t even know enough to be worried but even as a very young child my family never considered not traveling, just because of my wheelchair. As a result, I’ve got a few travel tips pertaining to flying, because I know this is something a lot of people who use wheelchairs (electric wheelchairs in particular) never do!

Bear in mind, I’m not an actual expert. This is all based on my own experiences. I’d love to hear tips from any other wheelies!

 

1. ASK FOR WHAT YOU NEED

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Frankly, this is always the case. When I was younger, I was always scared to tell people what I needed because I was afraid I was inconveniencing them. As I get older, I’m realizing that as a general rule, people really don’t mind helping!

Don’t be afraid to ask the flight attendants for another pillow for positioning, or a blanket, or even help moving your feet or arms to where you need them. I’ve flown many different airlines, but by far my best experience was with JetBlue. While my dad was reassembling my chair (see #3), the flight attendant held me so that I didn’t have to wait alone on the plane while my dad was preparing my seat. I mean, really? That is some serious service.

2. MAINTAIN A POSITIVE ATTITUDE

 

I have heard about a lot of negative experiences with the TSA but in the 15+ times that I’ve gone through a security checkpoint I have never had one problem. I attribute this to the fact that I have never gone into it expecting something bad to happen. I always make it very clear what parts of my body are sore or shouldn’t be touched, as well as what ways my body can and can not bend. As a result, my pat downs are always quick, painless, and generally pretty chatty. Instead of looking at it as a chore or an inconvenience, I look at it as them doing their jobs and am always sure to say thank you. I’m going on 18 years of traveling and I have never met a TSA agent who wasn’t pleasantly surprised by my upbeat attitude!

3. ASK TO GATE CHECK YOUR WHEELCHAIR

When you’re checking in, ask the ticketing agent if you can remain in your own wheelchair until you get to the plane door. This will allow you the freedom to get around the airport yourself, as well as to remain more comfortable than you will be in a standard sized manual chair. Due to the configuration of some airports, particularly the smaller ones, this isn’t always possible – but it never hurts to ask! If you do gate check your check, they’ll likely bring it back up to the plane door to meet you after your flight.

It helps to have a working knowledge of your chair. For example, I know that my wheelchair batteries are sealed gel cell batteries, which means they don’t pose any problems regarding safety. If you’re traveling alone, ensure that you know how to explain to a handler how to switch your wheelchair into manual mode, which is how it will need to be for them to navigate it to the cargo hold.

4. ARRIVE TO THE AIRPORT EARLY

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Airlines always recommend getting to the airport 2 hours early, but if we’re being real nobody does that. Well, YOU should. One time I arrived early and still almost missed my flight because they detected uranium on my hands when they swabbed them…what? Apparently sometimes bananas can do this (pro tip – don’t eat bananas if you don’t want to be labeled a terrorist). Generally I end up with a ton of extra time on my hands after I get through security, but it is much better than having to rush to explain all of my unique needs. Rushing tends to cause problems, so it’s best to be able to take your time.

5. BRACE YOURSELF FOR LANDING

This really only applies to people like myself who have very weak trunk strength – but it’s an important one. Even the smoothest landing comes to a very abrupt stop and will send you flying forward. I have never traveled alone so I have always had either a parent or a friend to “soccer mom” me and hold their arm across my chest to make sure I don’t hit the seat in front of me. If you’re traveling alone, you may want to ask about either a harness seat belt instead of just the lap belt, or befriend your seat neighbor! Most people are glad to help with things like this – even if it’s a little awkward. It’s something that a lot of people don’t prepare themselves for and you could be asking for trouble!

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If you don’t fly, you won’t have any blurry family photos taken at a German Christmas market. Would you want to miss out on that?
Hopefully these tips helped. Like I said, I’m not an expert! However, I have done a ton of both domestic and international travel and have been doing all of these things my whole life without any problems!

I’m Ready

I want to start this post with a little bit of a disclaimer. I’m not attempting to take away from the struggle of any minority. While I consider the United States in general an amazing place to live, filled with opportunities, anyone who identifies as a member of a minority group can attest to the fact that we have a lot of work to do. That being said, this is my personal struggle.
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I consider myself, as someone with a disability, as a member of the silent minority. Generally speaking, we don’t organize protests; we don’t stop traffic or storm shopping malls to make our points. As a result, disability rights and the problems that affect our community don’t get addressed. You won’t hear wheelchair accessibility addressed at the presidential debates, and as we discuss welfare reform you’ll never see mention of the fact that those who receive government assistance because of a long term disability are unable to marry those they love. Obviously none of this will be fixed overnight, but there’s a stigma here that needs to be addressed: the angry cripple.
In my 24 years of life, I have always made an effort not to be an angry cripple. Generally my family and I worked through any problems we had quietly and independently – because, in our eyes, we could have had it much worse. And that’s true. But it could also be much better. More buildings could be handicapped accessible. Public transportation across the country could be more readily available. Social programs could be adjusted to allow those with disabilities to continue to work and still receive the care they need.
It’s not a matter of being angry, or bitter. It’s about being vocal. Change starts on the smallest, most local level, and as I head into my second quarter of life, I’m ready to speak up. So if you see me complaining about accessibility or inequality, know that I’m not angry.

I’m just ready.

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Me being not angry courtesy of Melissa Gebert Photography

 

Gratitude

I am a part of a Facebook group for people with my disability (2 actually, one specifically for females). It’s amazing, honestly, what the Internet makes possible. Growing up I didn’t know anybody else that had my disease (Spinal Muscular Atrophy aka SMA) and now I could name probably 15 without batting an eye. It makes it much easier to compare notes, form friendships, and learn #disabilitylifehacks.
However, there’s one recurring theme in this groups that I honestly don’t understand – it’s the aversion to the word “inspirational”. Not even just the word – the concept. There’s something that, until the past few months, I didn’t even know existed known as – apparently – “inspiration porn”. This isn’t nearly as good as #foodporn, and I’m not even sure that right now I understand what it is. As far as I can gather, it’s the resentment caused when able-bodied people look at someone they perceive as less fortunate than them and get a warm feeling inside by helping them. It’s almost always done with good intentions, and often it’s not something the able-bodied person even realizes they’re doing.
So why are disabled people mad about it? I guess if I look at it objectively, I don’t want to be seen as someone who deserves to be pitied. I mean, given the situation I live an extremely comfortable life. But if my disability gives other people pause and asks them to take inventory of all the blessings they have in their lives, who am I to stop them? Just as I look at someone with cancer and inspired by their positive attitude, so too can others look at my inability to walk and do the same thing. Anybody who tells you their disability doesn’t make their life more difficult is lying to you, or in denial.

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I once read a Facebook status written by another girl with SMA about how she was angry because someone she didn’t know asked to pray for her. She wrote that she didn’t need prayers, and that prayers wouldn’t heal her, and she was doing just fine on her own. Now I don’t go to church every Sunday (or even every month) but I do know that we all need prayers. She isn’t wrong that praying and faith won’t give her the ability to walk again (if only it were that easy), but there was so much hatred in her words. I am a firm believer that praying with somebody, whether it’s to heal you physically or spiritually, has never hurt anybody. Sure, maybe that woman may have just checked “help an invalid” off of her to-do list – or maybe the experience would have stayed with her more permanently. Maybe the spirit of helping others would have prompted her to volunteer to drive those with disabilities to appointments, or to donate to a research program.

  
Every interaction that we have with another person gives us the opportunity to shape them. It can either be positive or negative. I would like to think that I can be “inspirational” without being pitied. I can be a reminder that maybe having the wrong paint color isn’t the worse thing that could happen to a person. And I’m okay with that…I guess you could call me an inspiration porn star.

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.