Further Notes (Not MEN 2b But Cowden’s): The Human Wheel

This is in some ways going to take the form of a confession, and while I most certainly don’t intend the following in any emotionally-charged way, I’m going to say here a couple of things my friends have been suspecting for years, and here goes. You see, for me the medical difficulties are not just physical but, shall we say, psychological; for that reason I take 40 mg. of Citalopram first thing every morning along with a small pharmacy of daily meds. I call this one a “head med,” and unlike many other drugs I’ve taken to ameliorate the situation this tends not to get in the way of writing, which is what I do and essentially the way I see myself. I don’t mind taking pills; they don’t taste good and I certainly notice the BP med as well as the Citalopram, for which I will always be grateful. Off my meds I feel much less control, to be honest, of my emotions and that’s led in life to a number of occurrences I deeply regret. The difference isn’t merely getting older; balance is the real difference. Now, am I still the possessor of certain extreme views? Oh, sure. I do not regret those views, either. Do I still get angry? Well, yes. Hopefully with less in the way of all-out nuclear assault for the equivalent of damn near nothing at all.

I’m telling you this because if you’ve been reading along up until now, you know this category used to be called “Living/Dealing With MEN 2b”; now, according to a second and I think/hope a somewhat more competent diagnosis what I have is called Cowden’s Syndrome (great—a disease with the word Cow in it; and the illness itself isn’t bad enough, eh? I wish somebody in the medical community would’ve thought about the patients when they named the damn thing. Yeah. Thanks a lot, folks. Appreciate it. The fucking thing’s related to the Elephant Man’s disease, for fuck’s sake.). So the “confession” here is simply that there are more factors at work than just the physical; oh, that informs the psychological aspect, to be sure, but at least now that we have this new diagnosis there’s reason for optimism, and maybe even less in the way of mortality pressure. Bear in mind, adults with MEN 2b (and God bless every one) tend not to live out their lives without early, and I mean early diagnosis; Cowden’s, on the other hand, is more of a chronic (sic) than potentially fatal illness although both share a common genetic cause (the PTEN gene).

Maybe now the psychological balance starts feeling better. I’ll need that. Doctors make me crazy. So do many other things. But I digress….I want to say this to everyone who feels/fears that stress, depression, etc., are closing in on you, there are honest-to-God options available. The drugs are not perfect by any stretch, but with a physician’s help it’s possible to find one that works for you. I think of it a little like what racing teams call “the combination” on a race car—how it feels when the driver’s behind the wheel. Likewise, you and I are behind the wheel of these organic and therefore fallible human machines, and while some of ours perform better than others, it’s important to remember the importance of simply taking the wheel and proceeding.  

I said before there’s no giving in to fear. In my case, it’s all played out better than I’d imagined and, believe you me, I was imagining some pretty terrifying things, enough to exacerbate any psychological fault lines one might have. The point is to hang on and keep making laps, day by day while it’s still possible. Recognize fear but don’t let it run you. Easier said than done, of course. For example, I deeply fear a long, slow, agonizing death from bone cancer. So I’m lined up with enough doctors to cast a medical drama, and I’ll make every last damn appointment, too. I’m stubborn that way sometimes. All because I’m not yet ready to let go, no matter what the lesser angels say.

Fuck them. Who cares what they think? Let’s be honest—the self-destructive voices inside us have only one mission. You can choose to listen or ignore, but choice is involved for all of us.

Especially as we head into Christmas, those of us who live every day with illness by whatever name feel certain additional weight. How many more will we have? becomes a question everyone asks, whether or not we should. It’s natural. Of course, so is death. So, I want to suggest that you fill this time with whatever you find meaningful, no matter what other people might think. If they don’t get it, that’s their fault. You have the right to dignity and understanding even if no one else can readily see that you’re ill; depression, for example, can be awfully subtle to the unquestioning stranger, so we should grant a certain slack but your rights are equally true and real. Don’t forget that, especially at this time of year.


About johnwylam1957

I'm a poet and teacher now living in Toronto, Ontario, Canada.
This entry was posted in Notes on Living and Dealing with Illness, Poetry/Fiction, Writing in General. Bookmark the permalink.

2 Responses to Further Notes (Not MEN 2b But Cowden’s): The Human Wheel

  1. carvingoutavoice says:

    Thank you for sharing this. It’s helped lead me to a little self insight of my own. I so admire your courage and determination. I hope this new doctor, and the bevy to come, continue to bring good news and the best of care.

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