Who Would I Be Without Illness?

For this week’s Patients For a Moment, founder Duncan Cross asks the question,

Who would you be without your illness?

He goes on to write, There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?

Duncan Cross is one of the best patient bloggers on the Internet, in my humble opinion, and I’m glad he’s probing all of us like this because I too am bothered by the tendency to sugarcoat realities of illness among silver linings or attach maudlin sentiments to what can be demanding, painful circumstances.

I’ve mulled this question over several times the past few days. Indirectly, like in this post on illness and personality, I’ve touched on this question before.

Who would I be without illness?

When you’ve been sick your entire life, that becomes a much harder question to answer. I can’t mourn the “before” I never had, and I don’t spend much time speculating on the person I could have been otherwise because I am busy being and surviving. Illness has always been there, one of the few constants that remained predictable only in its unpredictability despite the many other changes in my life: high school, college, graduate school, career, marriage.

While I am at a point where illness is not the defining characteristic of my life, (and I know this because pushing back against or despite illness is no longer the main motivating force behind most of my decisions) clearly it is still present in nearly all of my choices and compromises.

It is impossible to pull illness out of the many threads that combine to make up the past thirty years, to take it away and see what would remain.

Certainly I can look at the accumulated losses over the years and see what could have been in those moments: all the birthdays, showers, holidays, vacations, weekend plans, family gatherings, and months of school I’ve missed over the years, all the disappointments that had me crying into my pillow as teenager and keep me awake at night as an adult.

There are definitely times when I wish those basic rights of passage that we often associate with living a “normal” life didn’t have to be so hard: What would it have been like to graduate from college with the same good GPA without having to study for tests in the ICU, or graduate from high school without a full year and half of it taken away from me, a blur of missed opportunities and make-up work?

What would it be like to live a life that wasn’t always in a state of catching up?

Or, what would it have been like to marry my husband without the “in sickness and in health” part of the vows already such an obvious and omnipresent part of our relationship? What would it feel like to dream about a future family with him without having to weigh so many competing risks and priorities, to be able to speak confidently in the language of “when” and not “if”?

And yet…

I know, here’s where you’re half-expecting, half-cringing, thinking I am going to say but it’s all been worth it and I’ve learned so much and I am a stronger person for it.

Don’t worry, didn’t I say earlier I don’t like a saccharine gloss applied to illness?

I don’t. Of course it would be nice to not have to fight so hard just to get to the starting line all the time. Of course I’ve had my fair share of anger and frustration and grief over that, and of course I realize that with progressive diseases those frustrations will grow more complicated.

That’s life. That’s the only life I’ve known and it’s the same life I grew up seeing for other family members.

There are some things I do know. For example, I’ve made a lot of negotiations in my career to accommodate illness and I know I might have made different choices if I were healthy, but I also know that no matter what else I might be doing, I would still be a writer. I would still have strong relationships with wonderful people, and who knows what other life obstacles would test our relationships besides illness.

I would still be a stubborn pain in the neck.

The thing is, I do not have regrets. I am proud of what I’ve been able to do and for me, to wish for what might have been, to wish for some hypothetical, abstract notion of “healthy,” chips away at what I have done.

For thirty years I have lived my life in extremes, and in the brief periods where things are stable I catch glimpses of what it would be like to live somewhere closer to the middle. So maybe that would be me minus illness, someone less extreme? But that could also mean someone with less determination or, as my husband says about me when I am exasperating, someone less feisty.

And I don’t know that I would want to make that compromise. My biggest strengths are indeed my biggest weaknesses and while illness may amplify those, I don’t think I’d want to be me without them.