Wednesday, September 16, 2009

“The Enemy Is Your Body”

This past weekend was a rough one. I did the lupus walk, which I wasn’t really looking forward to, and a few hours later, I found out that a fellow graduate student in the sociology department unexpectedly passed away.

It’s hard to write about both of these topics simultaneously, but they are related…I promise…

First, I will say that I am conflicted about these walks. On the one hand, I am grateful that at the present moment I am healthy enough to take part. However, the whole celebratory atmosphere is a little too much for me to handle.

What exactly is it that we are celebrating?

The woman organizing the walk called me a few weeks ago to introduce herself, see if I needed help fundraising, and to ask if I was “looking forward to the walk.” Now isn’t that an oxymoron? Am I looking forward to a walk that I wouldn’t be doing if it weren’t for having a disease that I don’t want and didn’t ask for?

I’m not asking for pity here. But is this really a serious question? How am I supposed to answer that?

The walk, itself, was good. It was nice to push myself to attain a physical goal – to do the full, three-mile walk. I know for some people that’s nothing, but for me, it’s a lot. We really lucked out, it was a gorgeous day, and the park where the walk was held was absolutely beautiful.

The only problem with the walk was the doctor from U of M who spoke (keep in mind this walk was not sponsored by the University (as far as I know), and was in fact held near where my parents live). The doctor kept digging deeper and deeper into sentiments that I can only describe as anti-patient. One thing said was that if patients are so interested in new drugs specifically to fight lupus, they have to be willing to enroll in clinical trials. Yes, because donating our bodies to science is of course the answer to all of the problems in the world. I think not.

The other thing said, as the title of this post suggests, was that “the enemy is your body.” I have a hard time with this for several reasons. First, if my body is the enemy and the point is to destroy/kill the enemy, well, you know where I’m going with this… Also, environmental factors, among other things, have been implicated in many illnesses. Therefore, the enemy actually lies outside the body.

Honestly, I was really tempted to tell this person to shut the hell up and get back to the lab where they belong. I know, I’m being blunt, but this is the exact sentiment I’ve been trying to get out of my own head for the past two years. I am not to blame for my illnesses. I did not cause them. And I couldn’t have prevented them. And it’s insulting, and a sad reflection on the medical system that this is the way that doctors view their patients.

I actually think that the enemy is a medical system that treats 20, 30, and even 40-something patients as if they are immortal. Serious symptoms are downplayed, diagnoses are made at later stages of illness, that could be dealt with, but are instead found much too late.

The enemy is a medical system that despite its advances, has not advanced far enough. New strains of diseases are found, worse than the last, complex illnesses evade diagnosis, and illnesses that are known but not well understood evade cures.

The enemy is also an insurance industry that is not available to all. HMOs and managed care organizations that require referrals, increase wait times, and create an ambiguous chain of command - that is the enemy. Our bodies are our bodies. Our bodies are not the enemy.

*****

So how does this relate to the devastating events that occurred this past weekend? The person that passed away was an incredibly intelligent, talented, 32-year-old mother of two young children. This is one of those times when all you can say is that life isn’t fair. I was at her dissertation defense at the end of May. And now she’s gone… Apparently, she was diagnosed with inflammatory breast cancer two weeks ago, began chemotherapy on Friday, and died on Saturday.

While I’ve heard stories on primetime news shows about people who are diagnosed with rare, aggressive forms of cancer and die very quickly, I’ve never actually known someone that, that has happened to. And I preferred not knowing anyone.

I think the immortality complex that plagues the medical system is something derived from society-at-large. In grad school, for instance, we are made to push ourselves through an academically rigorous program, sometimes comprising ourselves and our health because we are young, we are supposed to push ourselves to the bone and never look back. So symptoms are attributed to stress and ignored until they reveal themselves to be much more than we bargain for. The main point here is that there is too much needless and senseless death and destruction of life happening. Young people are not supposed to die from horrible diseases.

*****

And as I’ve been reading in the disability literature about “poster children” and “super crips,” I get the sense that the people who are ill who take part in these walks are those who are either exceptionally high functioning, or exceptionally low functioning. I think the majority of people in the middle, who fit the “norms” of the illness, are left out.

The human element, which walks and telethons so much attempt to capture, is, I think, lost in the shuffle. The body is reduced to being seen as the enemy, as a set of symptoms that make up an illness, not as inhabited by a person who has thoughts, feelings, hopes, and dreams.

I don’t want to say that I lost sight of the big picture, but I think we all tend, at times, to crawl into our own little, insulated world, and this person’s passing made me climb out of mine. I don’t know how else to say this, but lupus isn’t looking so bad at the moment. I know that it is impossible to compare suffering, and that’s not what I’m trying to do, but I think the fight is bigger than you and I. I think it transcends illness type. It is about a system that is broken and is in desperate need of fixing.

More than anything, it’s scary to be a chronically ill person, and to see young people die, people too young and too wonderful, taken before their time.

My heart goes out to the family and close friends of this person. This is a great loss to our department, and I have a feeling it is going to take quite some time for the department, as a collective, to overcome this loss.

8 comments:

  1. Leslie - this is a good post, but I think the doctor was right about clinical trials. If we are concerned about the lack of new drugs for our illnesses, we have to be willing to volunteer for clinical trials. Walking and raising money are all well and good, but no drug will ever go to market without being tested on people with the disease first. And that requires people with the disease to step up. Clinical trials don't require you to donate your body to science - just to accept a little more risk in an already risky situation.

    I don't think the main problem with illness and health care is the lack of new drugs. I don't think new drugs can or will solve all our problems as sick people. But I think it's hypocritical of the people who do think new drugs are the answer to expect someone else to do the clinical testing to prove those drugs work. In that senese, I think the doctor was right - even if he was a jerk otherwise.

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  2. Thanks so much for a very thought-provoking post.

    I am in an Arthritis Walk in my city in a few weeks. I AM looking forward to it - I like getting together with others who have RA. But, in my experiences volunteering with the Arthritis Society I have also encountered things that have really bothered me. Specifically, I've noticed a tendency to play up every symptom, medical procedure, medication, etc. that arthritis patients experience or undergo as being absolutely devastating. There seems to be an unwillingness to acknowledge people with arthritis who both suffer with the illness and lead functional, fulfilling lives. You're either feeling fantastic and have no problems, or you're nearly bed-ridden. There's no acknowledgement of people like me, who depend on medication, who feel pain every day, but who also have good days and lead reasonably active lives.

    I can't believe the things that researcher said. I don't know if I feel quite the same way as you do about the state of medical science; I do think people are working hard to learn more about diseases, and that it has to be a process - although yes, I absolutely agree symptoms in younger people are frequently downplayed. With my recent cardiac diagnosis, I'm trying to learn to accept that nobody knows exactly what's going on. It's been difficult, but I'm slowly getting better at it. But you're right; to say that our bodies are our enemies is the ultimate insult from someone who clearly has no understanding of what it's actually like to have a chronic illness.

    My body is not my enemy. The illnesses that have invaded it are enemies, but my body is an amazing thing for having lived with arthritis for 24 years, for having adapted to scoliosis, for undergoing cardiac surgery. That's what I believe (most days).

    That was a lot of rambling, but this post really struck a chord with me. I'm so sorry to hear of your fellow student. I hope writing about it can help you find some peace.

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  3. "The body is reduced to being seen as the enemy, as a set of symptoms that make up an illness, not as inhabited by a person who has thoughts, feelings, hopes, and dreams." you have it right there. that is exactly what is wrong with the medical system and the societal view of disease. this is from my massage text book: "it is the pathogen that is undesirable, not the client, and all clients must be treated with respect, dignity, and kindness." from studying buddhism i have started attempting to think positive thoughts about my own body. so instead of wishing someone would remove my g.i. tract when i ingest gluten, i try to think some happy, calm, appreciative thoughts. it might seem silly but the negative thought cycles definitely don't help me view my body, because of the disease, as a good thing.

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  4. I must say you did luck out with the weather! We are expecting rain for ours this Saturday - imagine that...here in Oregon. Our walks tend to have the same split with few people who fit that space between 'official' disability and "I'm fine...really." It's that no man's land where the majority of us reside. Hearing others tell us that the one place we may feel we do belong (ourselves) isn't a welcoming space either is not only inaccurate - it's just plain cruel.

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  5. Great post....

    I had the head of the disability office here at my University tell me in an email that just because I have a disease, doesn't mean I am disabled. HELLO...if it limits me from getting things done...then there ya go lady! Aka I am disabled then...

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  6. Thanks, all, for your great comments! You've all certainly given me a lot to think about.

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  7. "I think the immortality complex that plagues the medical system is something derived from society-at-large. In grad school, for instance, we are made to push ourselves through an academically rigorous program, sometimes comprising ourselves and our health because we are young, we are supposed to push ourselves to the bone and never look back. So symptoms are attributed to stress and ignored until they reveal themselves to be much more than we bargain for. The main point here is that there is too much needless and senseless death and destruction of life happening. Young people are not supposed to die from horrible diseases."

    AMEN SISTER!!

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