Sunday, March 07, 2010

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.


Rachel said...

I am glad your voice is out there for the chronic community. I wish it didn't HAVE to be, of course. You are who you are because of the experiences you've faced, though. Oh so complicated of a question.

Vladimir Levin said...

That's a fascinating question, one I hope to blog about myself soon. Sometimes when I think on that question though, it's painful to consider all the things I've had to give up. I guess I try to focus on the ways in which my illness has made me a better person rather than dwelling on what I've lost...

Anonymous said...

Hey Laurie!

I am so busy some days that I rarely go through all my emails but im glad I went through this one. It put a smile to my face and I also shared this with a MS support group. I know everyone will like it! Your voice speaks to many, thanks.

Cecilia (from depaul)

Never That Easy said...

I clicked over to the Patients for A Moment link over the weekend, and the question has been bothering me ever since. It's not that it's a bad question, it's just HUGE. I tried writing a post once already, but I think I'm going to give it another go. I do appreciate the question, and think you answered it so well.

Anonymous said...

I really appreciate the level of acceptance you've reached vís-a-vís your illness! I also appreciate your perspective that you can't be what you are not.

Kerry said...

Enjoyed this post a lot Laurie...let the sugar coating melt away...its okay. I know I gain much comfort in the blogging community from reading the "real" of the chronic illness journey...the whole shebang...sad, lost, finding the silver linings, gratefulness, anger, inspired etc...

Liked your answer to "Who would I be without illness?", that you are a writer...before illness and now in the midst of it.

Genevieve said...

I've always loved your blog and your boldness. I'm really exhausted and wish I could find good doctors in our area, it seems impossible. AND now I'm pregnant and of course thanks to Bronchiectasis and Atypical CF~ high risk. I feel like I'm at the end of my rope. :(

At least reading your blog makes me know I'm not the only one who has suffered.

Mary said...

I feel that I would not have slowed down, gotten to know myself as well, appreciated the things of value in life, investigated other talents, learned compassion and met wonderful folks who have taught me how to deal with adversity if I did not have my chronic pain.
In the Buddhist faith it is thought that as a soul, before we are given a body, we chose to accept this journey.This gives me perspective. If I chose to accept this life then it is what I am about. And what I learn from this journey I work to share with others. Be well.

Laurie said...

Thanks for the responses! NTE, I agree, it is such a huge question. I'm curious to hear your response so if you post something, let me know.

I like the point that focusing on the gains is, overall, more productive than looking at the losses. That's definitely something I try to do.

Genevieve, I'm sorry you are struggling to find good doctors. Congratulations on your pregnancy though I imagine it's even more stressful if you don't feel you have the right medical team. I hope you find a great high-risk OB who has experience managing CF pregnancies.

Anonymous said...

This is my first post on my struggle. Good to know there are others out there getting through it every day. Most people do not get what it takes to reach the same goals people without illness strive for. It has shaped me but makes me quite fustrated at times when it feels like such a hard road.Thanks for your blog.

Vladimir Levin said...

Hi Laurie, I am hosting PFAM 20. I hope you'll write something!

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