A personal odyssey

Happy with it

I haven’t written on here in a very, very long time. Life gets in the way of things like this sometimes, and part of life is work, and work takes up an enormous amount of time. But I got a message today in my e-mail from the UOAA forum and though to write something quickly here to catch up.

I decided not to have the colostomy reversed. I am healthy. Most of all, I am happy. My gut almost never hurts, and when it does it is because I over-ate and I could fix that by not pigging out from time to time.

Did I just say that I am happy? Yes. Yes, I did. So to anyone who is new to this, or to anyone who is not-so-new as an “owner” of an ostomy, it is possible to be happy with it. I hardly notice it most of the time and haven’t for quite a while. And it got even better when I started irrigating this past summer. Now I deal with it once a day for a half hour to an hour or so, and it’s over and done with. No output (except in some rare circumstances) and the cost of supplies has dropped by about 90%. No kidding. NINETY PERCENT. The reason for that is that I need only one wafer a week (usually, not always – sometimes it is 2 a week), a bag a day (and that’s just for insurance against potential leakage; and sometimes 2 bags a day, but rarely), and the irrigation kit. That’s it!!!!!

I’m not sick and I’m not dead. So there. 😉

Long time, no post

I haven’t been on here in a long time. Life and work get in the way of writing blogs, I guess.

Things are pretty good. Work keeps me busy most of the time.

I should write more here. Maybe I’ll do that later today or tomorrow.

Some Realizations

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.

Jake’s Memorial

I just recently returned home from a very long day at work. I stayed late to attend a memorial celebration of my students’ friend, Jake, who died from either Crohn’s or Colitis. At the beginning of the memorial, faculty members (there were three of us there) were asked whether we wanted to say anything in remembrance of Jake. Two of my colleagues got up to speak about him, one recalling Jake’s work and passion for philosophy, another reading some written work that Jake had done on the philosophy of love. It was very touching and beautiful.

I didn’t know Jake as well as the other two faculty members, but like earlier today in my introduction to philosophy course, I decided it would be appropriate to put the issue of digestive diseases in front of people. So I talked briefly (less than 10 minutes) to the students gathered at the memorial about the fact that Jake and I shared something in common – a digestive disease. But what was disheartening to me was that most of the students didn’t know what digestive disease he had. Apparently, Jake had spoken to them at one point about having his colon removed a few years ago, and one student related to me a few days ago that Jake had said once that he did it in order to make what was left of his life more pleasant than it would have been otherwise. The point here, though, is that only a couple of them, at most, in a room of about 40 people who were his friends, knew the NAME of the disease he had. I still don’t know which he had, but it is clear that it was either Crohn’s or ulcerative colitis.

Proceeding with what I considered a way to honor Jake, I pointed out that I understood his will to live his life to the fullest, and perhaps to live every day like it was the last (I do this (try to live every day like it is the last), in fact, as much as humanly possible). I talked to them for a couple of minutes about the fact — and it is a fact — that digestive conditions and diseases are either not talked about in an open fashion at all, or if they are, they are referred to in hushed or embarrassed tones, and conversation dies out pretty quickly when the subject is digestive processes, rectums, anuses, and so on. And I told them that they all know someone with a digestive disease even if they didn’t quite know what it is or what it is called, and they know other people who have them who say nothing at all about them, and they know some people who have colostomies or ileostomies (and I told them I have an ostomy), and that if they know someone who is sick, or if one of them is sick, with a digestive disease not to let it go, not to ignore it, and not to wish it away.

Perhaps some of them caught the drift of my point in telling them that I have a colostomy. The point is that it does not mean that it is the end of one’s personal or public life, that it does not interfere with one’s ability to live a good and active life, and that it’s not the end of the world. I was hoping that it was a kind of sub-text for them of what I was saying to them openly. I noticed that several of them kept looking at my waist, trying to see whether they could see anything there. They can’t. I was very direct with them, relating my view of the new Crohn’s commercial (that it is not clear enough about the severity of the disease), mentioning Shannen Doherty who has Crohn’s and who has pointed out that it is very embarrassing and it puts a damper on a date to point out that she has to go to the bathroom NOW, and I told them that I think it is time people started to talk more freely and openly about diseases and conditions that have such a profound effect on one’s life.

I told them that I thought the best way to honor the memory of their friend would be to talk more freely about things like this, to encourage them to go to a doctor when there is a problem in the digestive tract, to get a colonoscopy if there is a problem, and to encourage others to do the same. And I told them that even though I don’t have the same disease that Jake had, I understand the desire he had to live his life to the fullest, and that even though it is very unlikely that what I have will kill me, it nearly did three years ago from a surgery, and so I understand to some extent what he went through.

Encouraging them to talk about these things the way people talk about breast cancer or diabetes, pap smears and erectile dysfunction, I thought and still think was an appropriate way for me to express my appreciation for an excellent student who suffered very much with a disease and who did so with grace, patience, perseverance, and fortitude. I thought of it as a way to tell them that I care what happens to them just as they cared about their friend, and that I think if Jake thought it would help them, he would tell them these things, too.

At the end of the memorial service, the student who organized it closed it out by pointing out that “we won’t talk about Jake’s disease because he never did.” I felt like everything I had tried to get across to them was for nothing. For absolutely nothing. At least earlier in the day when I talked about the issue of practical knowledge and its relationship to the pragmatic conception of truth, all wrapped up together with information about Jake’s memorial and about digestive disease awareness as a piece of practical knowledge, one of the students at the end of the class, over an hour after that particular part of the course was done, said to me: “Thank you for presenting as you did about digestive diseases.” She said nothing more, but the look on her face told me that she either has one herself or knows someone close to her who does.

On a brighter note, my colleague in attendance said to me that he thought what I said was very well said and important. Perhaps he was listening. I hope so.

But this brings me to something else. I don’t claim to know an exceptional amount of information about Crohn’s and colitis, but I have acquaintance enough with many people who suffer from one or the other of them to know that there is a cure for both diseases. That cure is a proctocolectomy (removal of the colon, which Jake had, as well as removal of the rectum and anus). If Jake was told by some physician or other that he should have an ileostomy and the removal of those other two diseased parts, but he refused to do so, then there is a real possibility that Jake would still be alive today if he had done it. I do not, of course, know what is the case with respect to his condition because he never told me about it. That’s understandable given that I was not close to him the way two of the other faculty members were, and there’s probably no reason that he would have talked to me about it in any case. But I will wonder for a long time, I suspect, whether he might still be alive if a more radical surgery was offered as an option, and he opted not to go with that. It is also the case that I am in no position, nor is anyone else, to judge Jake’s actions or decisions with respect to all of this if he was presented with such an option. He did what he thought was best for himself, and that’s all we can expect from ourselves and from each other. Perhaps his death was unavoidable. I don’t know and probably won’t. Even his family, in the obituary in today’s paper, did not say what disease he had. All the obituary said is that he suffered from a “chronic disease.” Again, it’s not a topic that is discussed in polite, and definitely not in public, company. Why not???? It killed him. The closest one gets to “chronic disease” identification is a note at the end of the obituary that in lieu of flowers, a donation could be made to the Crohn’s and Colitis Foundation.

Perhaps I’m beginning to make a pain in the ass (and the pun here is intended) of myself in talking about this in this blog, to my colleagues, to my students (briefly and related to course content, amazingly enough), and on the discussion group site for people with intestinal diversions (who are already among the converted on this issue), but I suspect that this is one of the ways that the problem of digestive diseases might begin to get the public attention that they deserve. If nobody bothers to roll the wheel to get it to squeak, it won’t be greased. It’s a small start.

Maybe someday there will not be the stigma attached to digestive diseases that now characterizes them. Maybe someday there will be an “I had a colonoscopy” sticker that people will put on their shirts just like the ones that read “I voted” or “I donated blood.” Maybe someday people will react with pleased and approving looks toward other people when they find out that a friend or relative has had a colonoscopy that they do when someone goes for a mammogram or a yearly checkup or quits smoking.

Digestive diseases are hidden, usually. Intestinal diversions like colostomies and ileostomies are not exactly pleasant topics of conversation, and they’re not polite talk at the dinner table. I personally don’t find them any less pleasant or any less polite than talking about the benefits of Activia and other kinds of live culture yogurt or fiber to stimulate bowel movements (even though people generally don’t use that term, either) or Aunt Martha’s latest bout with arthritis or gout.

Maybe someday it will be considered common for people to announce boldly that they went for a colonoscopy just as people sometimes announce that they’ve gone for another kind of checkup or had a heart catheter, or whether they took their insulin or blood pressure medicine. For some reason, this reminds me of the old Milk of Magnesia commercials from about 20+ years ago. A wife buys it for her husband. He is terribly embarrassed that she is talking about the fact that he has trouble with elimination and wants her to be quiet. He says at the end, “We don’t even know these people.” But we all know what Philip’s MOM is for.

In sum, maybe there is one person who was at Jake’s memorial who will go to a doctor now — but avoided it before — to have a digestive condition treated. Even if there’s only one who is experiencing some digestive problem and goes to a doctor because of what I said tonight, and whose life is made better or even saved because of it, I will feel like what I said was not for nothing.

But then, I’ll probably never know.

Remembering Jake

One of my current students wrote an article in the Personalist blog about Jake, my former student who died last week. It is beautifully written, a celebration of a friendship, and an admonition to those who forget that they should say what needs to be said before it is too late. Jake had a digestive disease. He was so young – only 26. See http://www.thepersonalistproject.org/comments/a_grief_observed .

Do Something!

I think it’s about time that there was a nation-wide campaign that is widely advertised and well-known. This is my small contribution. Click on the link for a JPG version of the poster.

Do Something! Poster
Do Something Poster

A letter to my friend

Part I on January 12, 2012

This post is a bit different from most of those here. There’s a sense in which it is related to the general topic of the colostomy, but it has a scope more broad than that while encompassing it. It is a post that I will probably have to edit over time because its contents are, in a way, more personal than even this weird contraption that is stuck to my body.

This is a letter to my friend, someone I trusted, someone to whom I opened up and revealed the self that I am, and a person whose very existence as my friend made my world more perfect and more complete. That friendship is no more, and there is emptiness because of its loss. To explain it, to express it, to feel it more in the hope that the pain of this loss will fade away if I put it front and center and let it rip into me with its full force, this is a letter to my friend who will probably never read it, who will probably never know that it was written, and who, I suspect, wouldn’t care, anyway — because we are friends no more.

To my friend,

Do you remember when we met over 21 years ago? I do. We met with tentative smiles to each other when you were new to the place, when you were asking a secretary how to get to a building on campus. I saw in you that day the friend it turned out that I would have for another 20 years or so.

Do you remember the time we shared a hotel room in NYC at a professional conference and I kept you up all night, talking, telling you something I had never expressed in quite that same way before, and only to one other person? When I told you that part of my life, and you cared — it meant very much to me. It still does. You helped me through something difficult, and for that I will always be grateful to you.

Do you remember the conversations we sometimes had on the phone when I moved to a different part of the state for work and I would call you to tell you how things were going, and you would tell me about things where we both worked prior to that, and where you still were? Those conversations made lonely times in a place I would rather have not been a little less lonely and a whole lot brighter.

I don’t know what you remember, but I hope they are some things I also remember, and that you remember them as valuable. When I came back to the place where we both now work, where our professional lives play themselves out, we used to go to lunch and talk on a regular basis; we’d share at least some of our successes and failures, some of our triumphs and some of our tragedies. I liked to hear about your kids and what interested you and what you and your family were doing on vacations or when you went places on weekends. Your company was pleasant, and I always looked forward to the times, albeit brief, that we spent together.

Your friendship was to me a stable thing in a world in flux; it was proof that my family was wrong when they told me that the only people who really love you and the only ones you can truly count on for the long haul are family members, the people who share your DNA and who see you as a piece of themselves, and so they never really stop caring what happens to you. My family never said that all family members are like that, but that there is always someone, or a small group, and in some cases nearly everyone in a family, who will stand by you for your (or their) entire life. My family was apparently right that no friendships last, or that if they last they change over time into close acquaintances or work relationships or old friends who claim that they’ll stay in touch and never do, and for that I am saddened.

Something happened, and whatever it was, it changed our friendship into something else. I have yet to give a name to the “something else,” but it’s not a friendship any more. Perhaps parts of the rest of this letter to you — the letter you’ll probably never read or know about or care about — will help me to figure out what happened. It will take some time. …

Continued on January 13, 2012, Part II:

My brother told me that when I was in the hospital three years ago, especially when in intensive care, you came to visit several times (I remember two of those times). He said that every time you came to visit, I seemed to do better. I remember a few times looking forward to the possibility that you would come by, but unfortunately I remember very little. It is not surprising that a visit from you made a good difference. And after I got home, you came to visit several times, and all of those visits were important to me, and welcomed, and appreciated. I knew then that you were still my friend.

But something has happened, and things are different. I wanted to show you this, but feel silly about it. And that’s an odd thing, because I used to be able to tell you anything.

I miss you, my friend, as my friend — and not just as my colleague or an acquaintance. It is difficult to watch you walk away and know that I feel we are now only professional acquaintances. It is, to me, so very sad.

Continued on January 26, 2012

I’ve added some things to this blog in the past few days, and one of them is the link to a blog post by one of our students honoring the memory of the other student who recently died. It made me think more about the loss of a friendship. For the student who wrote the blog post about the death of her friend, she says:

“Please, call your friends and family regularly. Keep in touch with the ones you love.

You will never know what you might miss until it’s too late.

I wish I could have said goodbye to Jake, a friend I love deeply

It reminds me of the loss of you as my friend, albeit you are alive and (I hope) well. It reminds me that I should talk to you if you wish to talk to me. Maybe one more time I will ask you whether you would like to go to lunch with me, like we used to do in the past, and I will tell you that I miss you and ask you if you know what happened to our friendship, and how or whether it can be repaired. Perhaps it cannot, and I’d like to know why. If it can’t be repaired, that is simply what it is, and we will continue to be professional acquaintances and I can at least put this awful feeling away. Not knowing why is the worst part of the loss of a friendship. There is a quotation that I think sums of this feeling of loss:

“We call that person who has lost his father, an orphan; and a widower that man who has lost his wife. But that man who has known the immense unhappiness of losing a friend, by what name do we call him? Here every language is silent and holds its peace in impotence.” — Joseph Roux