Life and Steps and Things

Well, that happened. In the span of 6 months I was diagnosed with Ehlers Danlos Syndrome along with a host of co-morbid diseases, syndromes, and complications. I took 5 trips to the States for medical care, moved to a new city, and underwent 2 neurosurgeries. I guess you could say it’s been a bit busy.

I’m now back in my beautiful apartment recovering from my last surgery and I have to say - I feel fantastic.

After spending 4 years with my condition steadily deteriorating, it’s incredible to be on the upswing. This past surgery has made such a huge difference in my symptoms already; it feels as though the sludge that I was wading through has turned to water.

Of course, I’m not cured - not by a long shot. I still have a complex, chronic condition. My body is still composed of faulty material.

But that’s okay. I don’t need to be cured. All I needed was a chance.

And now I have it.

I can walk. I can hold my head up. I can process new things. I can speak without slurring.

Everything is sharp and clear. I haven’t had an incapacitating episode or episode of any kind since this last surgery.

And I can sing.

I’ve stepped into a whole new world. A world filled with possibility.

I’m elated. But I have to admit, I’m also mildly terrified.

Possibility never exists without challenge. When you have no options, you have no decisions, nothing to lose.

I am now faced with choice.

Should I go back to school?

What should I study?

Now that I can sing, should I pursue a professional career again?

Who should I study with?

Should I search for a job?

Should I look for a volunteer position?


How much can I take on without risking my health?

I’ve been working on answers for most of these questions, and many others, but I am constantly second guessing myself.

I am lucky enough to know roughly what I’m interested in pursuing academically and professionally. One major bonus of having years where all you can do is lie on the couch and think, is that you tend to develop a lot of grand ideas.

But when you have a chronic illness, knowing what you want isn’t enough. I have to find out what my new, post-surgical level of ability is, and make decisions that fit within my new parameters.

And I have to do that with the knowledge that everything could come tumbling down at any given moment.

It’s a lot to shift through. But that reality isn’t unique to me. We all have to make choices, not knowing what the future will bring.

That’s part of the excitement, of the adventure.

After all, when I went to my first appointment in the States, I had no idea that I’d be sitting in an apartment in Toronto today, feeling better than I have in years.

All I did was take a step. Which led me to another step, and another. And then a couple more steps taken in quick succession.

Looking back on the past six months, I am overwhelmed by everything that has happened. But my experience wasn’t so overwhelming. It didn’t happen all at once.

It feels like I have so many questions to answer, so many decisions to make, so many plans to follow.

It feels as though, because I am now faced with options, I have to address them all immediately.

But I don’t. I shouldn’t. I can’t

I might be walking through a forrest. I might be climbing a mountain. I might be leaping across a river using lily pads.

But it all has to happen in steps.

And I am beyond excited to see where mine lead me.