Continuing on from the past two or three posts –
Yesterday I and a few colleagues went to our student’s funeral/memorial service at a local church that he attended for quite a few years. The people there seemed genuinely nice and caring for the most part, and were, for the most part, respectful toward the student’s parents and sisters. I sat with one of my colleagues during the entire 2 hour memorial service. It is good that he was there because I doubt I would have found the patience to sit there that long otherwise.
Again, nobody mentioned anything about Jake’s struggles except to refer to pain, discomfort, his surgery, and suffering from a “chronic disease.” Nobody used the words that go with it. But if he had died from a heart attack, people would have marveled over how “massive” it was; if he had died from a brain tumor, they would have mentioned that in the same breath with how intelligent he was; if he had died from a stroke or aneurysm, people would have mentioned it and said what a shame it was that someone so young would die from something so horrible; if he had been run over by a car, people would have talked about the gory details of the accident. But Jake died from an intestinal disease, and nobody talked about it except in passing or to point out how strong he was after conquering what turned out to be an addiction to dilaudid from the pain from his surgery.
Dilaudid does make a person strange, there is no doubt about that. A minister recounted a story about my student leaving a message on his cell phone in the middle of the night saying that the doctors had locked him in a room with monsters. Dilaudid leads to hallucinations sometimes, and I’m familiar with that, having believed that there was a naked guy in the room with me, that there were bees all over the ceiling, that there was a cat hanging from the fire alarm and sprinkler on the ceiling, and that I was being held hostage for insurance money. So I could identify with that.
But nobody said the words. One of his friends mentioned how much Jake struggled with his disease, and how one time he talked to his friend about it.
After the service was over, I walked outside and several of my students were outside the door. One of them, a young woman, came up to me to say that she appreciated what I had said two days before at the memorial service for Jake on campus at the university. She said she has a friend with Crohn’s who suffers horribly nearly every day, and that it would be good if there was more awareness about conditions like hers. She thanked me for talking about it.
I mentioned to her that the student who organized the memorial service said right at the end that they wouldn’t talk about Jake’s disease or condition because he never did, and she said to me that she was also floored by that statement and mentioned it to the student who said it, pointing out that I talked to them about something very personal and (she thought) very difficult for me, and that it was something he should not have said. She said he told her that it was embarrassing for them, embarrassing for me, and it would have embarrassed Jake.
What? He died from his digestive disease. I am not embarrassed by the fact that I have a colostomy. Sure, it embarrasses me from time to time when it does impolite things in front of other people (noises), but I can get by with that. I am certainly not embarrassed by not being sick or dead, and if there was a student in the room who suffers from some kind of digestive difficulties but doesn’t do anything about it except suffer in silence and avoid going to a doctor out of such embarrassment, and who might change her or his mind because of what I said, even if that person’s mind isn’t changed now but some time later, then it was worth it to have said something. I would do it again some time, but not any time soon. I need to get over the shock of this revelation first. Embarrassing?
And this from students who have, generally, no qualms with the notion that they or their friends may have “friends with benefits” or “hook up” with each other, and who think that oral sex is not really sex at all. These are people from the age group who have no compunctions whatsoever about using some of the most filthy language I have ever heard, who will drink until they barf in front of each other, and who will bare their souls on facebook, but who find talking about digestive diseases and ostomies to be EMBARRASSING? Hello? What?
This reminds me of something. It reminds me of the fact that I am sometimes put off by my friends and colleagues who are gay or lesbian, and wonder often why they are so open about it and always want to talk about it or write books or articles about it, along with the social reactions and the ethics and epistemology or metaphysics or justice-related issues that go along with who they are. I think I get it now.
It reminds me of not too long ago it being considered quite the taboo for people to talk about AIDS. But that’s another point as well. If someone dies of AIDS, it is generally the case that people know that this is the case, and they talk about it, and perhaps even about how the person contracted it, and what people ought to do to avoid contracting it, and so on. And they do this without embarrassment even though for this particular disease, it is still the case that there is much misunderstanding, prejudice, and unfairness directed toward those who suffer from it.
It took famous people admitting that they had or have AIDS or are infected with HIV, and it being out in public on TV ads and radio ads and in quilts made for victims of AIDS for people to come to the realization that this can happen to anyone, that risky sexual behavior, dirty needles, a blood transfusion, for example, can all lead to it. It is a disease that can strike anyone, at any time, and it doesn’t matter who they are or what they do.
The same can be said about digestive diseases. There are people who believe that Crohn’s and Colitis can be “cured” or “avoided” simply by eating better. They can’t. And from what I’ve heard, about 80% of the population over the age of 60 has diverticulosis (which can lead to diverticulitis) and those of us unlucky enough not simply to stay in the “osis” stage (condition) develop, unfortunately, diverticular disease. That’s what led to my first intestinal surgery — it was just the desire not to be in pain and to avoid the high probability that at some point my colon would burst or perforate and lead to peritonitis. So I went for the surgery, it didn’t work out very well, and I ended up with a colostomy. But I am — and I say this often — not sick and not dead. And I surely will not apologize either for being not sick and not dead or for pointing it out.
Other things that were said at the student’s memorial on Saturday were, to me, unsettling. They had nothing to do with his disease, or if they did they were only distantly related. They had to do with his faith and the difference, apparently, between that and the faith (or lack of) of his parents and sisters. I thought that was much more inappropriate than making reference to his “health challenges” in a clear way. But that’s just me, I guess. There’s probably no point in going into detail about what the preacher said to and about his parents and his relationship with them (“butting heads” was a term used, and it seemed to have something to do with his “health challenge” and his religion), especially since my point in all of this is thinking that this is one opportunity to push for a bit of awareness concerning digestive diseases, those apparently “unspeakable” conditions that nobody wants to admit they have or to talk about or know about when someone else has them.
People who have them seem, to me anyway, to suffer in silence the way people with AIDS still sometimes do and did on a grand scale in the fairly recent past. It is the same with breast cancer, I think. There was a time when no one wanted to talk about that, either, but we are now inundated with information about and awareness raising for and 5K runs and so on, to combat that.
The Chrohn’s and Colitis Foundations of America have some activity for raising money, but there are 150 communities in the U.S. that are participating, and that’s not very many when you consider 50 states, so that’s an average of 3 per state, and that’s not much.
But this is the way it goes, I guess. At least for now. Maybe things will change some day, and people with ostomies won’t have to feel as though others think they should be embarrassed by the fact they have one, and people with digestive diseases won’t feel as though they need to act around others as though they don’t have them. Again, it is like the new Crohn’s commercial. The guy has all his attention focussed on not having some digestive activity causing him a problem, and he pays little attention to the business meeting he is attending because even if others don’t know that he has a digestive disease, HE knows with great clarity that he does, and what it does to people who do.
It’s time we got our heads out of our butts (puns all over the place) and paid attention to these issues.
Continued on 1/30/12
Something else has bugged me about the death of my student. Everyone goes on and on about how strong he was, about how we went on despite the “chronic illness” he had, and how he didn’t talk about it, about how he didn’t complain about it. I am wondering whether they ever thought to themselves or (heaven forbid) talked to each other about WHY he didn’t complain or talk about it much. Maybe it has to do with THEIR attitudes toward a disease such as the one he had.
We spend our time, especially in our culture, honoring and blowing sunshine up each other’s butts about pulling yourself up by your bootstraps, being independent, strong, self-reliant — and what they don’t realize, perhaps, is that the expectation that one will do these things might be more hurtful than allowing someone the freedom to talk, to cry, to complain every now and then. But noooooooo, we couldn’t possibly do that. It would be embarrassing.
Nobody celebrates the person who cries or exhibits weakness unless the crying and the weakness are followed by some kind of triumphant overcoming of whatever caused the crying and the weakness. If the weakness remains, if it is not hidden, at least, then people drift away from the person who is in pain. We have to buck up, or “suck it up,” as the students have a tendency to say, or just “get over it” or “take it” and shut your mouth about it. Nobody wants to hear about pain and suffering — again, unless they are overcome with some kind of real or imagined nearly super-human strength.
It disgusts and disappoints me.