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Working My Last Nerve
Organ Donation Opportunities for People with HIV/AIDS

By Fred Gormley

November/December 2001

They say a journey of a thousand miles begins with a single step. Well, my feet and I have been on poor terms ever since 1964 when I snagged a toenail under the door and destroyed any potential they had for becoming high-fashion open-toed shoe models. The nail grew back deformed and talonesque, for which I've never been forgiven. In a fit of pique, my crestfallen arches instantly went huarache-flat (the left in solidarity with the right), leaving me with a distinctive lumbering gait. If I didn't compensate, I'd galumph along all the time -- think Jan Brady in high dudgeon; Gabby Hayes, panic-stricken.1

A couple of years ago, however, my passive/aggressive peds started to demand attention, at first with discontented mutterings (vague numbness), then with the silent treatment (no sensation whatsoever). Since I can't stand being ignored, I decided to look for help. HIV and diabetes -- my constant companions -- are each in their own right good reasons to seek out someone who can really appreciate feet. (Not a fetishist, a doctor. If the doctor is also a fetishist and you find yourself laced into a tasty pair of dominatrix spikes underneath the hospital gown, think of it as a bonus.) But since this problem is really about nerves, my primary care doc steered me to a neurologist at Mount Sinai Medical Center in New York.

My journey took me through the hospital's labyrinthine corridors to the neurology center where, like a rat, I was rewarded with an hour's worth of basic psychological tests, mallet strikes, pin pricks and tuning forks. The diagnosis: peripheral neuropathy. Actually, I'd long taken it for granted that I was neuropathic (is that a word?) and never sought out diagnosis since there isn't much in the way of treatment. Between diabetes and my HIV meds, we decided the latter was the most likely culprit (I'd only been diabetic five years, insulin dependent for three). Evidently, this kind of nerve damage is a common complement to the 'd' drugs: d4T, ddI, and ddC, which were all at one time or another components of my "cocktail." (As with any old-timer at The AIDS Lounge, I've had one too many.) My particular form of neuropathy is the "negative" type; I experience numbness and tightness in my extremities, but rarely the stabbing pains that define "positive" neuropathy. My most immediate worry is that the range of numbness will start to spread beyond my feet. Presently, I have no feeling in either foot up to about mid-calf, and lately, no reflexes in my right leg. (When the rubber mallet struck my right knee the only thing it triggered was a memory of the time the same thing happened to Homer Simpson.2 Tickled by this thought, I reflexively said, "D'oh!" The examiner, apparently not a "Simpsons" fan, gave it another whack.)

If I tread on small objects when I go shoeless across my Cher-white carpets, I only feel pressure -- anything else, sharpness, wetness, hardness, all feel alike. This is dangerous because if I don't realize when I've stepped on something hazardous . . . anything from a tiny glass shard to a carelessly displayed Emmy Award3 . . . I might cause a wound, which could become infected and fester, grow gangrenous and, finally, require amputation. I learned I needed to practice proper foot- and toe-care techniques. Especially important: close, daily inspection of my dogs. Leprosy patients get the same instruction, the neurologist told me. It isn't the disease that causes the loss of body-parts; it's an overlooked injury cascading into irreversible necrosis. Necrosis, I'm thinking. That's like the Borg in "Star Trek." Who needs that? (As you have probably guessed, I frequently make important decisions based on TV shows. This is why I require constant supervision.)

Just as I was about to shuffle out the door, the doc provocatively slipped me an understated green brochure entitled: "The Brain Bank." I thought he was making a snide comment a la "The Weakest Link:" Who's been writing checks they can't cash? But it was actually an invitation to make a deposit: A donor opportunity for people with HIV/AIDS. I just assumed that organ donation as a legacy gambit evaporated with my 1988 diagnosis. Of course I was thinking in terms of reusable parts, say if someone out there needed a set of buffed abs or he'd just die. I'd never thought about leaving a little something to science, and now I was delighted to think that my brain might be just the thing. So I called to set up an assessment interview.

First Assessment

First there was the issue of what to wear. Hmm. Brain Bank. Dark blue suit? Maybe too severe. Anyway, assessment determines a potential donor's history and present status -- physical, mental and emotional. After passing the labyrinth exam by finding my way back to the neurology department's front desk, I was told I needed to find the Brain Bank coordinator. The receptionist wasn't much help: She hadn't even heard of the Brain Bank. After a few circuitous phone calls, the B-Bank coordinator finally appeared and escorted me to a small, windowless room in a completely different part of the hospital. Next time, I swore, I'd bring along a couple slices of Pepperidge Farm. Breadcrumbs may be the only way out of here because . . . Pepperidge Farm remembers!4

Looking over one of the forms I needed to sign, I immediately had a question: What's the difference between restricted and non-restricted organ donation? The Brain Bank, I was told, is primarily interested in central nervous system tissues and, if I want, I can limit what is harvested to these delicacies. However, other specialists around the country are studying AIDS and the impact on cardiac or renal tissues and might be able to use those tissues as well. My assessor was careful to explain that the autopsy (I would get a complete one -- FREE!) would leave my body looking virtually undamaged when turned over to my family for disposal -- even without cosmetic attention. I doubt this: As I said, for me, TV is real life, and I've watched HBO's "Six Feet Under" often enough to know it takes cotton, spackle and two premium cat food cans to make a corpse sparkle with vitality.5 However much Fancy Feast my folks need to get them through their loss it is absolutely fine with me.

Now it was my turn to answer questions. Somewhat more grueling than filling out one of those "new patient" forms at a doctor's office, but maybe not so challenging as the final round of the Miss America pageant ("I have four T-cells and I adore stuffed children and little animals. Wait a minute, I don't think that's right . . ."). I was asked what medications I've ever been on, and for someone who's imbibed, injected or absorbed practically every HIV medicine there is, remembering them all is beyond my current capacities. For occasions like this, I keep a "current drugs" list on my PC, with dosages and times; whenever something changes I update the list, print it out and hand it to whichever new provider I'm seeing. This is less troublesome than writing it out longhand and it gives the impression I'm the 'ideal patient,' when in fact I'm just a caduceus-chasing suck-up -- with computer skills.

The assessment process requires two visits. The first installment probes abstract thought abilities through a battery of psychological and memory exams. My favorite? A steel and black matte version of the "square peg/round hole" game (Oh, Dawson! I just don't fit in!). They can make them as sleek as they like, it's still PlaySchool to me. I also enjoyed a game that featured a set of secretly evolving rules as it progressed. This was supposed to determine how my frontal lobes are functioning and evaluate "executive reasoning." I, who have never been an executive nor particularly reasonable, did very well on this. I was told that it infuriates many people, however. Apparently they don't think it's 'fair' or something.

There are flashcards, word play, connect-the-dots -- total regressive fun, until we got to the stuff with numbers, math being my lifelong enemy. Anyway, after about two hours of this, I felt I could have just faxed in my SATs . . . high verbal, sixth-grade mathematics . . . and gotten the same results.

After some routine specimen taking (blood, urine) as I was getting ready for my milk-and-cookie break, they dropped the big one: Would you be interested in undergoing a lumbar puncture (spinal tap)? If you're imagining my horror, you've got the wrong nutcase, because I wanted an l.p. Despite all the bad stuff, having AIDS (and being fortunate to have excellent insurance) has introduced me to a host of top-ranked specialists who usually happen to be great people as well. And, since in the course of my normal health maintenance I've had to undergo many fascinating procedures, this would add one more to the list (collect them all!). Besides, it was optional; having a spinal tap or not wouldn't affect my participation in the B-Bank. Hey, I had a bone marrow biopsy done last year; it was chock-full of useful information and not at all painful. Since I'd never had a l.p. before I was curious about the resultant health data. It would be performed by a specialist not some earnest medical student, and finally, . . . they would pay me! So we scheduled the tap for two weeks hence. I ate lunch, filled out some paperwork, received my laminated organ donor card6, collected my cabfare and was outta there. Halfway assessed. Two and a half hours, tops (if you don't count the time spent perusing marriage material among the choicer scrubs).

Second Assessment

Friday, 11:00 a.m. and my lucidity surprised me. Most days, perhaps intentionally, I'm vague and dopey till about noon, but here I was, at the hospital on time, negotiating the Mount Sinai maze like a lab rat with a GPS implant, heading for my destiny: Answer a whole lotta questions then take a big needle in my spine. Behold the strong and stately sugar maple, alone in the forest surrendering its sap for the syrup of science (uh, where's my insulin?).

My chief questioner this time was a psychiatrist. As I settled in he produced a cassette recorder, turned it on, and we began. I soon learned two things about this man: He was dedicated to this work and he didn't forget anything. Early in the interview he asked, "When was the worst period of your life?" And I had to think back to a bleak couple of years around 1979 when my partner and I were splitting up, oh so sl-o-o-o-wly. At least an hour later, he rephrased his question in the context of depression and that wasn't hard to pin down . . . 1992: lost job, best friend dying, bankruptcy. But you said 1979. I stopped and thought and went with 1992, but in my mind I appealed: Can't I claim both?

Two-thirds of the way through, I started to become embarrassed. I was coming off like Goody Two-Shoes. I don't drink (prohibited by my medications), don't smoke (I did at one time; 1979, of course), am sexually interested but barely active, and I've got a chest full of gold stars from faithfully sticking to my dosing schedules, doctors' visits, regular workouts, and meditations. This guy must think I'm a total fake. What could he dredge up to reveal me as the fallible human being I am?

Did Someone Say 'Recreational Drugs'?

Aha! Now here's something I can dazzle him with. Granted, my druggy period . . . again, wrapped around 1979 . . . was, in the context of the time, dilettantism. I dabbled in speed, coke, hallucinogens and hash, but abruptly stopped partaking following a bad experience sometime around 1982.7 I was bathed in memories as I listened to him read off the names: 'ludes, black beauties, poppers? He asked about my frequency of use and it all came down to, well, browsing. Except for poppers. I don't think he understood how amyl was used, because his eyes widened when I said, "Maybe ten a week." I, of course, was talking about ten hits. Finally I had revealed, to great satisfaction (his and mine), my dark side. Ooo.

After nearly two hours of talk, the surgeon became available. Now for some action. I happened to know this doctor well enough to trust her (she administered some of the neuropathy tests during my foot visit and performed the physical exam at my first assessment). So we adjourned from the psychiatric barrage and negotiated the hospital's maze to arrive at a room in the neurology department. Standard accommodations -- iron bed, TV and Spartan bathroom -- exactly as I pictured it. The comfy flounce of Laura Ashley was completely absent, thank you God.

I was invited to 'gown-up' . . . told I could keep my underwear on (how they presume!). I assumed the fetal position, curling on my right side, was wiped down with Betadine, primed with anesthetic and within minutes, the plumbing began. Because I didn't feel so much as a pinch, I hadn't a clue as to what was happening back there (were they installing a spigot?8). Oh, I understood the general mechanics. I knew that spinal fluid doesn't normally jet out the way blood does into a test tube . . . it dribbles . . . and that sufficient, properly administered anesthesia is essential. If I had felt pain, it would have signaled I was not adequately doped, but . . . nada. For about fifteen minutes, I hunched there like a comma trying to remember if the umlaut goes over the 'n' or the 'i' in "This is Spinal Tap." Afterwards I was bandaged then advised to lie on my back for a half-hour. The two most serious side effects of the procedure are headache, probably due to the brain missing its full measure of cushiony soft liquid, and, if done under unsterile circumstances, possible infection. Asking around in anticipation, I had heard stories about headaches that ranged from, chop my head off, I beg of you! to ehh! As for me, two days later, if my head pulsed, it was vague and very localized and, handily, a couple of Tylenol did the trick.

With the tap finished, I was shown one of the vials containing my fluid, clear as a mountain spring (why did I assume cerebrospinal fluid would have a yellow tinge?). But judging by its clarity alone would have been a layman's guess . . . it could have been Prell, for all I knew. But the doctor seemed impressed, so I took that as a sign that "I did good," and fantasized about a contest for 'Best Spinal Fluid,' the way municipalities compete for 'Best Tasting Water.' That my crystalline sample probably teemed with microscopic HIV quickly deflated my fantasy. Oh what a polluted creature. Can't give blood, can't donate organs to the needy, can't have unbridled 70's sex . . . I'm suffocating! But just as quickly my innate optimism took over as I recalled that there is at least one person on this planet who has it worse than I do (thanks, Mariah!).

As I was drifting into my reverie, the psychiatrist breezed in. Apparently we hadn't finished the full interview, and now, wordlessly, he set up his recorder. I let my inner monolog spill out for, how long? -- fifteen minutes? -- about -- what? I wasn't sleepy, wasn't spaced-out, just extremely relaxed. I could've stayed there forever, it seemed, drifting in the moment. You know, they actually lose people in hospitals sometimes.9 If no one came back for me, it would suit me fine.

I guess this proves your feet can only take you so far before the brain (pushy organ) has to horn in on the act. But I love an adventure and I can't wait for my next visit in six months. Six months of TV. Twenty new episodes of "E.R."

Just the Facts, Ma'am

The National NeuroAIDS Tissue Consortium (NNTC, or "The Brain Bank") was suggested in 1996 by Diane Rausch of The National Institute of Mental Health as a response to the scarcity of high-quality central nervous system tissue from HIV people. The program, with standardized protocols was initiated in 1998. There are four centers (some with satellite sites) nationwide . . . New York, Los Angeles, San Diego and Galveston . . . and participants are drawn from diverse populations.

For further information, including phone numbers, visit www.nimh.nih.gov/oa/nntnhome.htm.

Footnotes

  1. Jan Brady was the second daughter on "The Brady Bunch" and Gabby Hayes was the perennial sidekick to Roy Rogers. Rumor has it that both these characters were played by comedian Larry Storch.

  2. Father in "The Simpsons" but also a major character in Nathaniel West's "The Day of the Locust" (1933), though never described as having a bright yellow complexion.

  3. Academy of Television Arts and Sciences (A.T.A.S). Never, ever forget the phrase "Emmy Award" is a registered trademark.

  4. Catch-phrase from old commercial, when the P.F. guy was still around and we all believed that there really was some place in New England called "Pepperidge Farm." At least I did. Until I tried to move there.

  5. Episode 5; the pornstar who got electrocuted when her kitty pushed an appliance into her bathwater. Accident . . . or happenstance?

  6. "Judy Garland: Me and My Shadows" (TV Film 2001): One of the women who witnessed my document signing reminded me of Judy Davis doing Judy Garland. Attitude, look, everything. Worth a trip to the hospital. Break a leg.

  7. "The Saint;" classic 60's British spy series starring Roger Moore. In this context, though, "The Saint" was the disco where I had my final acid trip. (I started hallucinating that all the dancers looked like Roger Moore, so there's the tie-in, okay?)

  8. "This Old House," episode 1520. Norm goes nuts from doing the same plumbing show for the 65th time and strangles the homeowner with a tape measure (upcoming show).

  9. "The Golden Girls," episode 130: Sophia gets misplaced in an elevator at the medical center. You can tell the year this aired -- 1990 -- by 1) Blanche's earrings; 2) Dorothy's clothes; 3) Rose's hair.


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