Sunday, July 25, 2010

The eyes have it

About six or seven years ago, I was diagnosed with an autoimmune syndrome called Behcet's disease.  I'll spare you the gory details, but it was pretty debilitating the first few times it flared up, and prompted a couple of comments I hope never to hear again at the doctor's office:  "Holy cow, I've never seen anything like that!" followed by "Do we have a camera around here?"  (Thankfully, they did not.)

In the intervening years, I've been incredibly lucky:  lucky, first of all, to have a great doctor in Greeley, Michelle Stoltz, who diagnosed it as Behcet's almost right away, since I've since read horror stories about people who went years before being properly diagnosed.  Lucky, too, when my first rheumatologist left the medical profession altogether and shipped me off to another rheumatologist in Denver.

The doctor I saw there, Kathryn Hobbs, immediately nixed my original rheumatologist's treatment option: basically, a steady diet of prednisone that had caused me to gain a good fifteen pounds and barely kept a lid on the symptoms (and often didn't work at all).  I could have wept for joy, I hated the prednisone so much.

I was also very lucky that Dr. Hobbs was willing to battle my health insurance company to get me on Humira, an anti-TNF drug formulated for people with rheumatoid arthritis...but she said it showed a lot of promise for people with Behcet's, and eventually she convinced the insurer to pony up.  And almost immediately, the symptoms were gone.  Totally under control.  Lucky, indeed.

I was also lucky that when I moved and switched insurance plans, the new insurer agreed to cover the Humira without much of a fight.  The complete lack of symptoms for years on end almost had me thinking that maybe the disease had gone away--maybe it had never been real?

And then, about six weeks ago, my right eye started to feel weird--sore, and achy, and red...and I started having trouble seeing. 

Several students I knew had pink eye during spring semester, so I figured that might be the problem.  But since Behcet's can involve eye inflammation (which--luckily--I'd never had), I figured I'd better get it checked out.   And sure enough, I had uveitis, inflammation of the uvea that's a very typical symptom of Behcet's.

Fortunately, it responded well to the prednisone eye drops prescribed by my oddball opthomologist, who's a dead ringer for Groucho Marx, both in looks and demeanor.  Did the drops for several weeks, tapered off of them, eye felt fine.

Went in last Friday for a follow-up appointment, only to have Groucho tell me that the inflammation is back, and in both eyes this time.  Back to the prednisone eyedrops.

Autoimmune diseases are very strange; I think if I'd ever had the slightest interest in/talent for medicine, it would be a fascinating specialty.  You sort of have to befriend your disease--get to know its rhythms and its perverse sense of humor, its fondness for irony and the long con. My frenemy Behcet's doesn't like to be locked out.  Bar a door, and it finds a cracked window.  Seal the window, and it slides through a crack in the siding.  Deterred on one front, it mounts a campaign from the opposite direction.

I'm not writing this to seek pity or even sympathy; as I've said, I've been incredibly lucky at every turn of this journey.

There's a quote from writer Janet Burroway that I have stuck on a mirror in my bedroom:
Why, I say, should I ever have bitterly blamed [my body] for such trifles as I have blamed it for:  for having too much flesh in this spot, too little muscle in that, for producing this wrinkle, that sag, that gray hair, or this texture?  Dear body!  My dear body!  It has gone about its incessant business with very little thanks.
For me, it's a useful reminder that for every small, visible thing that our bodies do wrong, they're doing countless invisible things right, and continually.  I marvel at both the stability and the capriciousness of the human body.

But the capriciousness--that's the issue.  Of course, autoimmune disease mirrors life in that way:  our sense of control is purely imaginary, a ruse to suppress the unsettling reality that at any moment something could happen to blow everything sky-high.

And occasionally (very occasionally, the older you get, I'm discovering), the body surprises us by doing something extraordinarily good that we didn't know it was capable of doing, too:  in my pathetic case, running a couple of miles on the treadmill.

I'm trying to avoid using the rhetoric of betrayal around the Behcet's, and I hope to avoid using it around aging in general.  But our bodies do fail us in one profound way:  like the portrait of Dorian Gray, they evince all the decrepitude while the selves they contain go on feeling like they're twenty-eight.  At least, that's the age I feel like I still am in my head.  How about you?

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N. B.:  My friend Jane has written far more eloquently about the strange dichotomies of the self and the body here and here.

7 comments:

amoswhite3.com said...

Yes, all of twenty-eight! Thank you for sharing

Jim said...

Same here. Nice to see you were able to work some Irish lit in there too.

Beth Doyle said...

I wouldn't go back to my twenties, maybe 32.

Christy said...

I feel 80 most of the time :-). (Ok, that's a fib. I'm often shocked to realize I'm a married homeowner with a full-time job, and not the moony-eyed 12-year old who wondered what that would be like someday).

Pam said...

Hm, I think I'd choose about 35. Old enough to have learned a few things but to still have the energy to play like a child but not pay for it the next day.

yarmando said...

Please tell me your ophthalmologist said, "Did I ever tell you you have beautiful eyes? Well, you have." That would indeed be a gala day for you.

Jane Kokernak said...

Thanks for the shout-out, R.

I love the Janet Burroway quotation, and these words of yours:

"For me, it's a useful reminder that for every small, visible thing that our bodies do wrong, they're doing countless invisible things right, and continually. I marvel at both the stability and the capriciousness of the human body."

Spooky coincidence, or maybe synchronicity, I just finished and shipped an essay I wrote on my diabetes diagnosis, and how I've come to live with, and I used exactly the same word you used in yours: "marvel." Here are my final few sentences:

"Yet, as [a friend] predicted, the illness and my care and feeding of it have become integrated into who I am... [And] I try to remind myself that the unselfconsciously useful body of my youth is a myth. Surely, my masterful riding of a bicycle, which I could once do no-handed, took practice, trial and error, a few scrapes, and kinetic awareness. My diabetes, in a way, has demanded the same. And although my good health with diabetes does not feel like flying, it does often feel like a marvel."

And to answer your question: 35