On Getting A Little Naked, and Why This Website Matters

Life has been a bit crazy these past few months due to health issues (surprise, surprise). Things have finally evened out a little, and I feel like I have the energy and brainpower to kick this website into gear again.

But…

I have a very, very hard time talking about my own disease, that warped beast that rides on my shoulder. I mention it here and there. I talk to people about my symptoms, and commiserate, but I’ve never actually written about it. And that’s part of why this website went so quiet for a while. I feel kind of hypocritical starting up a website talking about disabilities, when I’ve never actually said much about mine (other than the fact that they exist). So, this post is to fix that. I’m going to undress a bit, dear reader, and get a little vulnerable for you. I’m going to tell you about my life with a chronic disease. Well, part of it. The part I can put into words, and maybe this journey under my skin and into my head and soul will possibly help you understand why this website is so important to me.

My shoulders were the first to go. I was sixteen, and if I’d known what sort of lifelong battle that would be starting, I would have done something to mark the occasion, a sort of graduation from the land of Used-to-Be into the land of the New Normal (such as it is). As it was, I had surgery (that didn’t work), and moved on. Sixteen years later, and roughly sixteen surgeries later, I finally have figured out that I have a disease that no amount of surgery will ever fix.

Things changed when I got my Ehlers-Danlos Syndrome diagnoses. I had this cathartic moment of, “Oh my God! That actually explains so much of what has happened in these past sixteen years!” Then there was the terror when I had the, “Unfortunately, there is no cure, all we can do is try to manage it” discussion with my doctor. Then I started going about my regular medical visits, and had to figure out how to react when my doctors would google “Ehlers-Danlos Syndrome” in front of me and well-meaning nurses would say, “Huh, I’ve never heard of that..”

But other things changed as well. In these past few years, I’ve grown increasingly nervous about being in crowds, or being around many people, or in an environment I can’t really control. And I try hard to control what I can. If I know I’m going to be walking for a while, or in a crowded space, I take a cane as much to assist with my movements as to let people know that they need to give me some room. If I go to the movie theater, I always choose a seat at the edge of the row that allows for easy exits if I need them, or allows me to stretch out and snap my body around if I need to (I always need to).

I always kind of chalked these habits up to the fact that I was weird, but suddenly the puzzle pieces clicked in place and I realized that I spend a shocking amount of time and energy afraid of what will happen if someone innocently bumps into me wrong, or steps on my toes, or something falls and I can’t stop it before it hits me. Cars and traffic really frighten me. Crowds, areas I can’t control, are almost terrifying. I don’t like them, and while I’ve never been big on being around a ton of people, I can see where a lot more of my isolationist habits have spurned from this physical condition that forces me to be extra vigilant when I’m in an area I’m not familiar with, or around people who don’t know that they need to treat my body like it is made out of something fragile that easily breaks.

I wear two kinds of pants, one is a size too big, and one is tight. The ones that are a size too big are for those days when my hips are radiating pain and anything touching my skin feels like knives. The ones that are tight are for when I feel like I need that tiny bit of extra support to keep all my bits in place. After I wake up in the morning and put all the parts of my body back where they should be, I figure out which pair of pants I need to wear today, and that generally sets the tone for the rest of the day. When I’m home, I never wear anything but pajamas. My choice of pajamas far exceeds my actual clothes, and I have two canes and a walker within easy reach at all times.

I’ve learned some cheats as well. I am always leaning on something – a cart, a stroller, a wall. This is to help my balance and assist me with standing, it’s really hard for me to stand on my own sometimes, and due to the fact I can’t feel my right leg, my balance is pretty bad. But leaning is easy, and it’s something that people don’t even realize I’m doing. My kids know that mommy can’t bend over or reach, so they help me get things that fall into the Zone Mom Cannot Reach. If I drop something at work, it tends to stay there until one of my coworkers picks it up, I can’t walk fast (or well – and the list of movement-related things I can’t do is incredibly long, and I hate thinking about it), and I kissed the days I could actually reach for anything goodbye years ago.

When anything, and I mean anything, changes the status quo of my body, I seem to have flair ups. And when my symptoms flair up, I get really cranky and pretty forgetful. It’s hard to function when my body makes existing so hard, and some days it takes so much energy and brainpower to navigate through the treacherous waters of my symptoms that I can’t really spare any memory or mental powers for anything else. I forget everything. I get really clumsy.

But all of this is surface detail, and just a minute amount of surface detail, just the stuff I’m willing and able to put into words.

It takes me about thirty minutes, sometimes longer, to snap my joints back in place when I wake up in the morning. I look back on the days I didn’t have to spend so much time putting myself together each morning (and numerous times daily) with fondness and a sort of emotional agony that is really incredibly hard for me to talk about. So much of my life is completely dictated by my body’s misfires, trying to anticipate them, and navigating events in such a way that I am in a safe place to fix myself (if possible) when these inevitable dislocations and misfires happen. I used to be an athlete. I used to be able to do anything I wanted to do, and now I feel completely caged by all the things I can’t do – and the list is so damn long.

I look into a very terrifying future with uncertainty, because each year I can feel my body break down just a little bit more. Each year another joint (or two) decides it’s tired of playing by the rules. There is no cure, and managing the symptoms is difficult at best (and not assisted by the fact that most medical personnel look at me like I just flew in from Planet Zoimks when I mention the name of my disease.). When my kids have to help me function each day, a little piece of me dies. My five-year-old has a mental running list of all the things mommy can’t do, and that really hurts. I hate the fact that sometimes my daughter has to compensate for my problems, and she can tell just by looking at me what kind of a day I’m having, or when I’m in whatever position I’m stuck in, what part of me has dislocated.

It’s the pain that really bothers me the most. I’m in agony constantly, and I’ve been on just about every prescription pain medication doctors can throw at me with very little success, so I’ve started trying to manage my pain levels by heating pads/ice packs, braces (of course), walking assistance, and not moving more than absolutely necessary. But the pain grinds a person down and turns them into dust. It makes you a shadow of who you once were. Pain is a demon, and if you let it, it will eat you whole. It’s an emotional kick in the heart. It’s a constant, burning, bone-deep reminder of everything I can’t do, of my terrifying future, and how much my physical condition can weigh down and impact my family. When my pain is high, so is my depression. They are best friends. They hold hands and skip through my heart.

The constant nerve pain, that flair every time part of me snaps and grinds, slips and skids, that ache that feels so deep it seems to be rooted in the depth of my soul every time I move, is absolutely exhausting in every possible sense of the word. I’ve learned not to let it show. I’ve learned to keep a straight face so no one can guess how bad it really is. The truth is, sometimes pain needs to be felt quietly, alone, and kept deep inside. People get nervous when other people hurt and they get nervous when they don’t understand the hurt. People get anxious when you look fine, but you’re anything but. So I’ve learned to keep it to myself. My pain is my secret, and some days it eats me more than others. Some days I’m afraid my pain will swallow me whole. Some days I spent all of my waking hours screaming in my head, and the only thing that gets me out of bed is knowing if I don’t, my kids will lick an electrical outlet or something, and that’s not okay.

There is also guilt. There is a guilt that assaults me with its angry fists when I realize that I’m never going to be okay. My kids will never have a “normal” mom, and everything we plan has to be planned around what I am capable of doing that day. I’m never going to stop having medical bills and umpteen million doctor appointments each year, and when a new symptom starts up and I know that it’s time to get this new thing checked out, I feel bad. I can’t help it, and I know its irrational, but I do.

So maybe when you read all that, and dip your toes a little bit into the soul of my life with a chronic disease, you can understand why the topic of disabilities in the genre is so important to me. I want to see myself in the books I read. I want to read about characters who feel some of the things I do, and I want to relate to someone who feels caged in a body they never asked for – a body that scares them. I want to relate to what I read, and I know if I feel like this, then others probably do, too. Books are good distractions. Happily Ever After is exactly what I need when I’m feeling really trapped and run down, but I also need to read books where people hurt. I need to read books where people have a hard time walking, and look into a scary, unpredictable future. I need to read books full of people who struggle like I do, like you do, like so many of us. I need to read books that realistically portray some of the fear, pain, uncertainty of life.

I want to read a book about someone with debilitating nerve pain climbing to the top of the mountain, because when I’m flat on my back, that’s the sort of story that keeps me going. And realistically portrayed disabled characters are nice, not just for people like me who deal with a lot of these issues on a daily basis (hell, I appreciate representation), but because I know that people who don’t deal with these issues are reading these books too. Maybe while they are living those lives through those characters, they can possibly understand what it’s like to be stuck in my skin, or your skin, for a time.

Books are an escape, but they also help us figure out who we are, and where we fit. They help us live outside of our bodies and heads for a time, and show us what it’s like to live like someone else, with someone else’s limitations and capabilities.

It’s hard to sit here and write these things. I’ve been crying for hours while I typed out these words. I hate this, but I also love it, because maybe these words will resonate with someone else.

And… well, I think I’ve rung myself out… but that… that is why disabilities in the genre is so damn important to me.

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5 thoughts on “On Getting A Little Naked, and Why This Website Matters

  1. Thank you for writing such a personal post. It’s very brave of you. I enjoy reading novels with protagonists who are different from me. There’s no way to fully understand the experiences of others, but literature can help increase knowledge and empathy.

  2. I recommend looking into Tim Kaufman on fatmanrants dot com. Read his about page. He’s thriving with Ehlers-Danlos Syndrome. He writes that he wants to help anyone willing to listen, so maybe he can help you too. I don’t want to spoil his story so please go check it out. It just may change your life. Good luck!

    P.S. I have no personal connection to Tim. I stumbled upon him a while back because I’m severely overweight and I was looking for inspiration. Just wanted to point that out.

  3. As a person disabled by chronic illness, and who writes about the personal and political issues that come with it, I know exactly how hard it is to strip your pain bare in public. Thank you for having the courage to do so, because I promise you it matters. It matters when your story touches someone else, or gives them courage to find their medical answers. It matters when someone not yet touched by illness or disability learns a little bit, and maybe even adjusts their own behavior and attitudes. Your bravery matters, as does this site. Thank you.

  4. I understand about keeping the pain to yourself. If no one else can fix it, then why bring them into it? Trying to reassure the healthy people that you’re really okay (for certain values of ‘okay’) can be so exhausting!

    I think it’s so important that the world hear from the disabled population, the invisibly disabled, and the hidden disabled, shut-in and bedridden, who no one sees at all, but are still there, living our lives within four walls – we still exist! The world needs to understand that the odds are high that they will become disabled in their lifetime, and that it can happen out of the blue in a matter of seconds. And knowing that, how do they want the disabled to be treated?

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