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.