Community, Disability, My Story

Certainty, Community, and the Undiagnosable Chronic Illness

So a couple of weeks back I went for another set of tests with my neurologist. I’d had the lumbar punctures and the MRI’s and so many neuro assessments I almost had the pattern memorized – with no explanations so far – and so this time they were going to a peripheral nerve study.

In other words, they were going to put electrodes all over my arms and legs and turn up the electricity and see which ones twitched.

I have good news and bad news.

They all twitched!

(Obviously this is good news because you want your nerves to work, but actually it’s also bad news, because that’s not what I would consider to be a comfortable experience.)

And so then the doctor came in and looked at all of the charts and graphs and muttered something unintelligible under his breath (I think that doctor’s have a class in this at med school) and then he said the words I definitely wasn’t dying to hear:

“For the next part of the test, we’re going to insert a needle into your muscle tissue to test how your muscles respond when we put an electric current through them.”

And I said ‘ok’, because even though I’m pretty sure that this kind of treatment is used in human-rights-violating torture-chambers somewhere in the world, if that’s what it’s going to take to get a diagnosis, then I guess that’s what I’m going to have to do!

Because here’s the thing.

We crave certainty.

As humans of the 21st century we have got it into our heads that we can know all the things. That we can predict all the weather.That we can heal all the diseases. That we can guarantee that we will not only have food to eat, but that we can have exactly the right food to eat at this moment whenever we feel like it.

That since we can put people into space and go to the moon and launch rockets that can destroy cities in moments and have a face-to-face conversation with someone 10,000 km away from us that surely we can be certain about what is wrong with us.

Except that sometimes, even today, we can’t.

The doctor finished up with his needle-in-muscle electrocution therapy, I wiped the tears from my eyes, cheeks and neck, and he told me to get dressed and meet him back in the other room in a few minutes.

So I did.

And he said the words I was dreading and hoping for.

“There is no indication of any neuromuscular disorder.”

We had struck out – again – on the hunt for an answer.

I will be the first to admit that to begin with, I was extremely frustrated. I just wanted answers. But when I calmed down enough to remember that the answers he could have given me were degenerative neuromuscular conditions like ALS and Parkinson’s and MS and things like this that are life sentences to often rapidly-progressing diseases that come with extraordinarily expensive and dangerous drug cocktails, I admit that I started to cheer up a bit.

And then after a bit longer I started to realize that the desire for certainty about what I had had much more to do with my fear of whether I was going to be okay or not and much less to do with whether I could have another diagnostic badge on my badge blanket.

You see, for years I’ve been watching my body fail me in unpredictable and unpleasant and uncomfortable ways, and it worried me because I am a fiercely independent person by nature, and I didn’t know how I would survive if I stopped being able to do the things – to do all of the things – that needed done. Then what?

But what I have learned in the last year is that there is more than one way to create certainty in life.

The kind of certainty I was looking for was words and meanings and explanations and hopefully a few graph charts and projections to follow to help me to be able to control and predict both the present and the future.

That one isn’t happening.

And it’s not just that it isn’t happening for me – but it simply. isn’t. happening.

We don’t get to be 100% certain about the future. Our attempts at control are haphazardly effective at best and often only serve to make the situation worse, not better. We can barely predict whether the weather will be severe enough to cancel the school buses or not, so how can we possibly imagine that we can predict something like life, which is far more chaotic than the weather.

But what I have discovered this past year and a half, is that when we place ourselves in community – when we build interactive, vulnerable, grace-filled patterns of relationship with a group of people who commit to showing up for each other’s good times and bad times – then you can survive an awful lot.

In our community alone in the last three years we’ve weathered a number of births and deaths, the average number of toddler temper-tantrums and teenage angst, marital infidelity, mental health crises, back surgery, unemployment, coming out declarations, moving, hospitalizations and at least a couple really bad hangovers. Oh, and collectively, we’ve managed to keep me fed and my house clean enough to avoid needing to call in the fumigators and my family cared for well enough that they are all thriving and growing and developing more and more into the amazing people they were meant to be.

I think what I’m saying, is the horrible, awful catastrophic thing that you want to nail down all the variables on and buy the right insurance policy against and research the heck out of on Google Scholar may or may not be possible to guard against.

And I’m not saying that you should stop being responsible – stop taking your vitamins or eating your vegetables or doing your yoga or going to your therapy or whatever things you need to do to make progress with the reality you are dealing with.

But it turns out that really – at the end of the day – your only choice is whether you keep on wasting a lot of time and energy worrying about it, or whether you go out and use that time to build good, robust community and watch as everyone’s troubles become a little easier and everyone’s worries a little lighter.

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