Wednesday, October 28, 2009

15 years and counting...

I turned 30 earlier this year, and, in the months leading up to that day, I was getting a whole lot of "Is turning thirty going to bother you?" "Do you think you're going to freak out?" "Does being 30 make you feel OLD?" type questions. I didn't think 30 was anything to freak out over, and told people so, even if I don't think of the number as having any actual relation to my life. (If you're going by how I feel I might as well be 97 right now, physically, and about 12, on a good day, emotionally.) But there is something about turning thirty that I knew was going to really mess me up, and that is that it marks a different sort of milestone for me: I have now been sick longer than I have been ill.

The last day I remember being well was October 20, 1994: Fifteen years ago. I have now been living with chronic illness for exactly 1/2 of my life. And that is a heavy, heavy thing.

It shouldn't be, probably: It's certainly no surprise, at this point, to realize that my illnesses aren't going anywhere. For the first few months, and even the first couple of years, there was the constant thought that "I could wake up better tomorrow" just as suddenly as I had woken up devastatingly ill that first morning. As time went by, and test after test would come back screwed up (but not treatable) and doctor after doctor stopped treating anything except the active infections (rather than the underlying whatever-the-hell-is-causing-this), it got harder and harder to believe that one day I'd just wake up better. One thing snowballed into another, relapse ran into relapse, sleep problems followed pain problems followed breathing problems followed energy problems, and the cycle just seemed inescapable. (It still seems pretty inescapable.)

And to know that there is no end in sight, that these 15 years are probably just the beginning of a really long haul (if I am lucky), that's a hard pill to swallow as well.

But here's another thing I've been thinking about: There were also numerous times where I figured, "I'm just going to die from this... I can't survive this time." (I still have those times, too.) And if I look at it that way, if I look at the past fifteen years and think - "Well, I've survived this for half my life. I've coped as best I could, and survived a lot of things I didn't think it was possible to survive. And I am still here" - then it's not quite as hard to swallow, I think. Seeing myself as a survivor, rather than a sufferer is one of the many distinctions about my identity I have had to make over the years, and it's one of the hardest to hold on to.

Here's the thing, I'm a woman with a disability: I have now been disabled half my life, and I am so proud of the ways in which I have met the challenges of my disability, in the ways I've cobbled together an identity from the bits and pieces of myself that were left over and the new ones I discovered along the way. In that way, I figure that I am no different from anybody else: Everyone - disabled or temporarily able bodied - spends those 15 years of their life (from 15 -30) trying to figure out who they are, who they want to be, and how to live in a way that is best for them.

Life experiences change who we are, and being ill has certainly changed who I am - and not in a completely negative way. But still, when October comes, I remember the part of me that I lost - the part of me died 15 years ago: the dancer who could be touched without crying, who had energy to spare after walking 5 miles, who thought she was going to be a million things, but none of them included this - and so I'm still mourning that person that I could've been, that I maybe should have been, but, at the same time I'm also incredibly proud of the woman I am turning out to be. Does this make sense to anybody but me?

Basically, as I came up to this Sick-a-versary, I was more conflicted than I've been in years past - it feels like both a solemn occasion, because of all that I've lost, and a cause for celebration, because I am Still. Here.

(I've been working on this post for a week, and it still doesn't feel like it explains exactly how I am feeling, but I suppose this is the closest I am going to get, for now. I hope it makes sense to some of you.)


Sue Jackson said...

I think you did a great job of expressing the conflicting feelings of a Sickaversary (love that term!). I know what you mean - I feel the same way about mine every March (March 2, 2002).

One thing I can't fathom, though, is what it must have been like for you (and so many others) to get sick when you were so young. I was 37 when CFS hit me.

Your post was very touching. I agree completely with the idea of thinking of ourselves as survivors rather than sufferers.

Here's hoping that some of the recent research breakthroughs will result in treatments that can bring us all some improvements. I predict that the next 15 years will be your best!


Rachel said...

I totally laughed at your comment about being 97 physically and 12 emotionally. I can also relate to the loss of your former identity - especially dance - as I was also an avid dancer. =( It seems like you are really strong in handling all this.