Nina outside in her wheelchair.

My Wheelchair Is Not a Prison

Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”) but the misguided sympathy I now get for being a wheelchair user. Non-disabled people tend to see the wheelchair as The Worst Thing That Could Ever Happen to someone. Look at the terminology used: wheelchair-bound; stuck in a chair; confined to a wheelchair — but they don’t think of the alternative.

Before I had my power wheelchair, I would leave the house once or twice a week, as it caused me so much pain to walk and the add-on effects weren’t worth it. Now as long as I’m not in a bad fatigue phase, and can get what passes for “dressed” enough, I can go out multiple days in a row with only minor consequences. Without their wheelchairs, tens of thousands of people would have no access to education, work, or a life outside of their homes. The futon is my prison; the wheelchair is my freedom and my best friend.

I will admit to getting a bit (extra) depressed from time to time because I miss being able to do some things I used to love – dancing, climbing, scrambling, hiking (basically anything involving going up mountains), kayaking – but people often fail to understand that even if I didn’t need my wheelchair, or the crutches I sometimes use, I wouldn’t be able to do these things anymore anyway. The wheelchair is not the symptom of my condition or my limitations, it is the thing that helps me continue to do what I still can. So don’t aim your sympathy at my wheelchair. Channel it into anger at the lack of wheelchair access I and other disabled people face instead!

Follow this journey on Nina Childish.

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No Goal Is Too Small When You Live With Ehlers-Danlos

My goals used to look like: write a speech in a day, go running with Jenny, clean my room, get straight A’s in all my classes. I look at those goals now and need to remind myself to take a breath, and then take two steps to the side – maybe three.

I say take steps to the side because I’ve moved away from where I used to be, but I refuse to move backwards. There are a lot of things I have had to get used to with my newfound chronic illness, and a big one is accepting the things I cannot do. You might be tired of reading my writing about this. It comes up a lot, but I’ve always heard the phrase “write what you know.” Well, like it, love it, want to chuck it out the window, this is my life and this is what I know.

Today’s goal was successful. However, I did have a day last week (maybe two, I can’t remember) where the same goal was not successful. What was this goal? To take a shower.

Yes, yes, I know. Mundane. Simple. My dad can crank out a shower in like four minutes and be clean as a whistle. However, the life of a person with chronic illness is not always easy.

The car accident I was in on Saturday triggered my Ehlers-Danlos syndrome to go into another flare. At least I’m pretty sure that’s what happened. I’m still figuring all this stuff out, too. Moving on, what that means is more pain than normal and more fatigue than normal. What that means is easy tasks like taking a shower leave me out of breath.

It took me until this afternoon before I got in the shower and I had to rest for about 40 minutes afterwards just to recover from that. I’m not complaining. On the contrary, I was so proud of myself! I did it. I accomplished my goal. So what, I had to rest afterwards. That’s life.

I don’t know what tomorrow’s goal will be. That will be decided when I open my eyes. It will probably involve going to my morning class. Whatever it is will be good enough. My goals don’t have to be climbing mountains. That’s not my job. My job is to do what I can to take care of me. Today that meant taking a shower. It may seem small, but it was good enough for me.

Don’t worry about your goals. Don’t compare your goals. No goal is too small.

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Why I Don't Consider My Ehlers-Danlos Syndrome to Be an 'Invisible Illness'

I don’t recognize parts of myself nowadays. I don’t belong in the body I live in anymore. Just like you wouldn’t belong in a house that neglected you, I don’t feel like I belong in my own skin.

Ehlers-Danlos syndrome is known as an invisible illness. You generally can’t see the manifestations of it. However, I don’t agree. You’re just not looking close enough.

It’s hard to look past things that have changed and the things you’re not used to. When I look in the mirror, I see a tube coming out of my stomach, a tube going into my intestines and a couple of lines on the side of my arm. I see around 25 percent less of me than there was last year, and I was never in a position where I needed to lose weight. I see bruises from botched injections and scars from too many surgeries. I see the machines I can never get more than a couple feet from. I see the bags under my eyes from the exhaustion of sleepless, hospital nights.

I also struggle with the fact that things are ever changing. Changes in a treatment plan can cause me to gain or lose obscene amounts of weight in a matter of weeks, causing my wardrobe to have a range of sizes. When I just about get used to a tube, a new one is added or taken away or changed. It’s a never ending guessing game of how my appearance will develop next.

Beneath my outer appearance, I see a body that is oh-so determined to shut down. Joints that won’t stay in the right place for more than a couple hours, a gastro-intestinal tract that has failed at it’s one purpose, and an autonomic nervous system that can’t get its act together to allow me to stand up.

I don’t want my illness to get in the way of my self-image. My illness has taken so much from me, it’s not going to define my self-worth. When I look in the mirror, I see a body that’s waved at hell and come running straight back. I see scars that tell incredible and sometimes funny (in retrospect) stories. I see a body that’s not giving up over just anything.

On days I can’t see the positives of myself physically, I try to look at myself a bit differently. I see a girl who has wiped her tears too many times but has found a way to stop crying. I see a girl who laughs in the face of uncertainty. I see a girl who saw a challenge, got scared of it, but kicked its ass anyway. I see that you’re not your tubes or scars or weight. I see that you are not just what’s happened to you, you’re how you approached it. I see that there’s a future in your eyes, even though you’d rather keep my eyes closed sometimes.

I detest the ways you can physically see my illness manifest itself (try dress shopping with tubes!), but I am the way I am as a result of my suffering.

I’m not letting it get to me, and I’m not going anywhere.

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Why I Stopped Smiling Through the Pain

I choose to live.

Four powerful words… all of which accurately describe my current health state. I have spent the past six years fighting a war against myself, trying to will myself to feel better. For the last six years all I have wanted is to be health, to have my old life back. The life where I didn’t give a second thought to walking down stairs, chasing after my kids, dancing in my living room, hopping out of bed in the morning.

I have fought relentlessly to try to will myself into a healthy state of being. If I can just fake it until I make it, eventually I will get there. If I think positive thoughts the pain in my legs and back will dissipate or perhaps, at least, not affect me as much.

What I ended up doing was having a complete nervous breakdown, unable to formulate a coherent thought, continuously crying for no apparent reason. I spent months shutting myself in from my friends and family, feeling as though I had nothing to offer to their lives because I had become such a burden.

Living with a chronic illness, faking it until I make it set me up for failure. Smiling through the pain and pretending to feel better than I did became a daily struggle, almost as great as getting out of bed everyday. I was living a lie. I was pretending to be someone and something that I wasn’t. And it was exhausting. It made me feel like a complete failure.

I have always been a driven, hard working woman. I do not like to be told “no,” whether it’s by my parents, my husband, my friends. If they tell me I can’t do something, by God, I would move heaven and earth to prove them wrong. I viewed every “no” as a challenge. Not only I would I do it, but I would accomplish that task — and then some.

My husband would tell me I could not buy something until we had the money to do it – thinking I couldn’t possibly get it done – and then I would. I loved my job. Recruitment was so much more than just finding a person a role….it was putting together puzzle pieces that other people were not successful in doing themselves. I had clients that would call me and start the conversation with “this is a very difficult search” and I would get giddy with excitement. The harder the better made me happy. I was proud of my accomplishments – owning my company, making my client’s lives better, leaving an indelible impression on the candidates lives that I touched. Then I got sick.

It seemed like it was one thing after another. One injury, one infection, one kidney stone, one hospital visit after another. Could it be possible for one person to have such bad luck? What was I doing to make myself get so sick? Why couldn’t I help myself from catching these infections, falling up or down those stairs? Was I not exercising enough? Not eating enough kale? Eating too much salt? Not drinking enough water? Drinking too much water? After every episode, every hospital visit, every trip to the ER, I would beat myself up with these questions. It always came back to, “What the hell is wrong with me?” and, “Why can’t I just get my act together and move on??”

Fast forward six years. I am a mother to three amazing, strong willed, active children. I am a wife to a very patient, and sometimes infuriating, supportive, loving husband. I am a daughter, a sister, a friend. I am a recruiter. I am a 40-year-old woman living with two chronic diseases that there are no cures for.

I am staring down a path that looks nothing like the path that I had chosen or laid out in my mind. I am living a life that is nothing like I wanted or worked to have. I am sad. And scared. And in mourning for my old self. But I am also happy. I am at peace. I am hopeful. I am loved.

I am choosing to live in the present. I am choosing to allow myself the time I need to feel all of the above feelings. I am learning to love myself again. My true self.

I used to describe myself as broken. But I am not broken. I am so far from broken that I actually hate that word. I have chosen to embrace and be with all the pain I feel physically daily, because that helps ease the mental anguish I have been suffering with. I have learned that pain is something that cannot be avoided, but suffering is a choice.

Ehlers-Danlos syndrome and ankylosing spondylitis are conditions that I will not allow to define me any longer. Instead, I will redefine my life around them. I will allow the physical pain that I feel as a result of these diseases to be what it is, because it is not going anywhere. The longer I fight it, the harder I fight to pretend it isn’t here. To ignore how my knees, ankles, back, ribs, neck and head are feeling, the worse I make my mind. I spend all my energy pretending I don’t feel the way I do, and then I have nothing left to give the people who matter most — myself, my husband, my babies, my family and my friends.

Letting go of the facade that I’ve been maintaining has been liberating. It feels like a 500 pound weight has been lifted off my back. Now, when people ask me how I am feeling, I answer them honestly. If I am having a bad day, I tell them so. Not because I want their pity, but because I am so tired of lying. This is my reality. Giving in to it doesn’t make me weak, it means I am strong. Not fighting to get better is not the same as giving up. I am not, nor will I ever, give up.

The love I receive from “my people” on a daily basis, and the relationships with them, have become so much more honest and real since I stopped fighting. I am supported and loved by people who are not afraid of the real me. The bruised and worn down, battered and, at times, dislocated, me. Because I have chosen to honor both the light and the darkness inside of me, I am able be a better person to all the people that I love, starting with myself.

Living with a chronic illness, living with the reality that I am never going to feel better, that there is no cure, doesn’t have to be like fighting a constant battle. It has enabled me to be grateful for the little things. My son’s hugs, my daughter’s snuggles, the feeling of my husband’s hand on my back, the friendships I have made with women who genuinely love me and want what is best for me.

I am working on not taking a moment for granted. I am working on getting more comfortable with asking for help. I am working on being more forgiving of myself, for my unwashed floors, emails that are piled up, plans that get rescheduled. Because at the end of the day, those things really don’t matter. My life is worthwhile. I am worthy and deserving of peace. If I need to spend extra time in my bed, that is alright. I know in my heart that tomorrow will be better. It will be better because I will be here… Feeling however I am.

If you or someone you know needs help, visit our suicide prevention resources page.

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To the Girls Who Questioned Why I Only Occasionally Use Crutches

Since the middle of January, I have alternated between using a cane and forearm crutches to walk with. Sometimes, depending on the day and the place, I will walk with no aid. At school, however, the walking distance each day is so great, I use the crutches everyday.

I have recently received the diagnosis of Ehlers-Danlos syndrome (EDS), a connective tissue disorder. One of the more affected areas of my body are my hips. This causes chronic pain and instability. One of my doctors suggested the crutches, and they have been invaluable in helping me get around school.

With having a service dog, I am used to constant questions – some of which get very personal. I generally try to give an answer that will help educate. When asked about the crutches, depending on the person, the situation, and my mood I give one of two answers,”I have EDS, it is a connective tissue disorder that affects my hips. The crutches help me to walk,” or “I have bad hips.” I am perfectly fine giving either answer. Sometimes I don’t mind telling people why I use crutches, other times I’m in a hurry or am not in the mood to give the whole talk. I don’t owe anyone anything.

So far I’ve had pretty good reactions from people. My favorite is when they treat me the same as before the crutches and cane arrived. I enjoy being independent. I don’t like to be pitied or looked at like I can’t do anything for myself. I also don’t like to be questioned on the validity of my illness.

This was something I ran into yesterday in the elevator of my building. I had run down to take the trash out to the dumpster. I left Jenny in my dorm and since I was taking the elevator down and then right back up. I also left my cane in the room.

Going down was fine. Going back up, some girls I didn’t know started questioning me. At first I tried to answer their questions, but they didn’t understand how I could be walking right then, but couldn’t walk without crutches around campus.

I didn’t present this nearly eloquent enough then. I will try to do better now, but here is my answer.

Yes. Sometimes I can walk just fine without any aid. I might not even limp. Other times I need a cane or crutches. It’s just the fact of my life. I have an illness that causes pain in a variety of areas in my body, especially my hips which are rather important in the walking process. Due to the weakness of my connective tissue, my joints are also very unstable. Especially my left hip, which tends to move around in the socket. Walking aids help take some of the weight off my leg and hips, which help to decrease pain. They also increase stability and reduce the likelihood of my hip ball moving where it shouldn’t, or me falling.

So the answer is yes, I can walk. Some days are better than others. Some days I need help. That’s OK. Not all walking is created equal. I am thankful for the mobility I do have. I know I am blessed to be able to do everything I can. Using a cane or crutches is just a small part of my life and what makes me who I am.

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What Ehlers-Danlos Syndrome Takes From Me (and Teaches Me)

Dear Ehlers-Danlos syndrome,

I don’t mean to be rude, but I just can’t stay silent anymore. I’ve tried to be nice, I’ve tried to be aggressive and I’ve tried to coddle you, but nothing has worked. I feel like I just haven’t gotten through to you.

You’ve taught me a lot, don’t get me wrong, but sometimes I really get sick of you. Sometimes I wish I could walk away or something, but deep down I know it doesn’t work that way. I’m stuck with you, whether I want to be or not. And when I say that, I really don’t know how it makes me feel.

You do add a lot to my life. You add a lot of bad things and a lot of good things. You add splints, subluxations, casts and exhaustion. You give me postural orthostatic tachycardia syndrome (POTS), Raynaud’s and other gems. When I think about all the negative things you add, I get overwhelmed.

The thing is, you add so much more than that.

When you test my relationships, you teach me what a true friend is.

When you exhaust me, you teach me how to function with less.

When the doctors don’t know what’s best, you teach me how to persevere and fight for my own best interest.

When you cause me immense amounts of pain, you teach me the true meaning of strength.

When you depress me, you teach me coping mechanisms.

When you interrupt my goals, you teach me to be patient and that no matter what, I will find a way.

When you make me feel alone, you give me a community to reach out to.

So, although it may not always be easy in the moment to see all the positive things you add to my life, I guess it all works itself out. I may want you to leave me alone at times, but it’s true. Whenever you take, you do teach.


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