‘Ouch!’

When I was in Baltimore a couple of weeks ago getting my diagnosis, I also gained a new accessory.

It has been described as everything from a dinosaur’s mouth to a regal Egyptian neckpiece, but it is none of those things.

It’s actually quite simple and straightforward. It’s a neckbrace.

But wearing it has once again created a whole new world for me.

When I first used a wheelchair, many things changed. The way friends and family interacted with me changed. The way strangers treated me changed. The way I approached simple activities like taking the bus or going to a cafe changed. The way I felt about myself changed.

The same thing happened when I began using my walking poles and walker.

And now, it’s happening again.

Once more, my ‘invisible’ illness has become visible. And that changes everything.

I’m fairly used to it by now. Some parts are great. Strangers, while often staring excessively and offering pitying smiles, are generally quite kind. Doors get held open for me, paths are made for me on the street, cars will always let me go first, and if I bump into someone, THEY apologize.

Other parts are not so nice. People closer to me can get a bit uncomfortable. It’s a giant plastic reminder that things are not okay which makes it hard to move past my medical situation and laugh about some TV show or talk friend drama.

Often, I get a fair bit of patronization both from strangers and people I know. I once got pat kindly on the head at a restaurant while using my mobility scooter.

But the single most common reaction I receive when sporting any sort of visible aid comes in the form of a question.

Everywhere I go, from strangers to people I know, I hear, “Ouch/Oh no! What happened?”

Honestly, it’s a bit ridiculous.

I mean, I get it. I look perfectly normal, I’m often smiling, talking a mile a minute, am young, dress, well, not unstylishly and do not look like a society’s depiction of a stereotypical ‘disabled’ person.

So when I am seen using a wheelchair, a walker, or a neck brace – the assumption is that it must be an injury. Something temporary.

But as much as I hate the concept that disability and illness come only in a specific package – as frustrated as I am when I’m asked ‘what happened?’ or worse still, ‘what did you do to yourself?’ – I must admit that that part isn’t what bothers me the most.

I understand where the question comes from, and while I wish it came unaccompanied by issues of stereotyping and the ignorance of disability, I would ultimately rather people ask so that I can address the issues and explain that I have a chronic condition – that nothing happened, I’m simply made this way.

No, it’s the part that comes before that has me grinding my teeth. The sucking in of breath, the ‘ouch’, from people that I know. People that know me, that know that I am sick.

Because my brace is not gasp worthy – despite it’s unfashionable construction.

My walker is not deserving of a cringe.

These items are my heroes. They are my superpowers.

My spine struggles to hold itself up, never mind holding up my skull and brain, but now, with my brace, I am able to sit upright and even walk for a while.

Sometimes, my legs just don’t want to support me anymore, but when I start to sway, my walker is there to catch me, to support me and even offer a seat if I’m stuck somewhere without a bench nearby.

Without my wheelchair I couldn’t have seen my brother graduate. I couldn’t have come close to visiting him in Europe.

And without my scooter I couldn’t have lived on my own, in a city that I loved, for almost a year.

Assumptions about people are awful and harmful.

But I think the majority of us are very well aware of that. When I explain that I have a chronic condition I can see people do a double take. I can see them feeling guilty for not considering the possibility. I can see a small part of their perspective shift, now that they’ve met me and had a normal, friendly conversation with me about something viewed as so abnormal.

And while I don’t think that anyone should feel guilty over an innocent and well meaning question, I do appreciate their recognition of the stereotype. Of the assumption.

I think, though, that we tend to forget how those assumptions can be equally harmful in relation to objects.

If my aids are seen negatively, then everywhere I go, I have something negative attached to me.

And I would understand that if they were dirty, or smelt bad, or had any sort of destructive aspect to them.

But they don’t. They’re amazing. They help me reach beyond my ability and accomplish things that I could never do on my own. They’re even kind of pretty, or at least have clean, shiny lines.

So now, I’m going to launch a mini project. I’m going to write a letter to each of my aids. I’m going to publish these letters and try to put into words how I, as someone who has a rather intimate relationship with these objects, see them and feel about them.

Because maybe, when someone sees a physical aid, all that they can think is that something must be wrong in order for it to be used.

And that’s true.

But the thing is, if it’s being used, it means that it’s helping that thing that’s wrong. It’s helping improve someone’s life.

And that’s a beautiful thing.

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Diagnosis

Last week I was officially diagnosed.

Finally.

Over the past couple of years I have picked up a number of diagnoses here and there – nothing that explained everything, but they still helped to identify some of the things going on in my body.

This one, however, was different. This one explained everything.

I have now been officially diagnosed with a hereditary connective tissue disorder called Ehlers Danlos Syndrome.

Actually, it would probably be more accurate to say that I’ve been diagnosed with Ehlers Danlos Syndrome and Friends.

Because it’s not just that my connective tissue is faulty and my joints are sliding around. It’s that it’s wreaking havoc on multiple parts of my body, morphing into problems that are substantial enough to have their own names, their own diagnoses. If I wrote them all out, I believe I’d be up to around seven or eight different associated conditions.

Which sounds like a big deal. And it is.

But for some reason, it’s feeling fairly anticlimactic for me.

I guess part of it is that I already knew I had this condition. It hadn’t been confirmed, but it’s been floating around for almost two years.

And I knew that I was experiencing complications. I felt them. This past year has seen some rapid deterioration in my condition, and I knew that something had to be causing that. Now I just have a name.

But as much as the name hasn’t felt like a big deal to me, it really has been big for the people around me.

I’ve been getting a fair number of supportive messages from friends and family along with a handful of not-so-supportive, but well intentioned offerings of pity.

And I guess that makes sense. After all, these other people haven’t been living in my body. My condition can’t be felt by them, and therefore it’s reality is a little blurry. Having a name for it, having the knowledge that something really is going wrong and being able to explain what exactly that is changes everything for them. It becomes more serious.

But it’s interesting, because while people outside of me are grappling, overwhelmed with the reality of the diagnosis, they also seem hopeful. They seem to feel that now that we know what’s going on, we should be able to fix it, or find better way to treat it.

And to be frank, I’m not feeling all that hopeful. If anything, I’m feeling a little bit let down on that front.

I already knew that something was wrong. My hope was that it would be fairly specific, and that we would be able to identify and fix the problem.

Which, it seems is not the case at all.

Because there are a lot of problems. Way too many.

It’s not fixable. It’s going to be a long-term roller coaster of waiting with bated breath for the drop, levelling out, maybe riding up for a bit, and then dropping again.

And that sucks.

Faced with that knowledge, I’m finding it hard to be hopeful in the way that some family and friends are pushing to be.

I guess I’m just a couple of steps away from them. I felt that way before the diagnosis. Now I am having to adjust to the fact that it won’t be quite as simple as I thought.

But as hard as that adjustment is, as scary as it is to face, it’s also freeing.

While I am in a sense, waiting for the other shoe to drop, I’m not waiting for them to magically tie themselves up anymore. This is my reality. I might get better, and then I might get worse, and then maybe better again – I don’t know. I can’t predict the future.

But the one thing I do know is that I don’t have to hold off anymore. I don’t have to avoid commitments because maybe by next fall I’ll be living on my own and going back to school full-time. I can go ahead with what I am capable of now, because this is my life and I’m planning on living it.

Plenty of people love roller coasters because of the adrenaline and weightlessness they feel.

Now I finally have that freedom.

So maybe my family, friends and I aren’t on such opposite pages after all. Our thoughts might be different, but we actually all seem to be feeling similar emotions.

We are all struggling to adjust to a new reality. We are all scared.

And we are all hopeful.