My Brain Has Become a Sieve
Or Am I Just Losing My Mind?
by Hank Trout
f riends and I, all of us long-term HIV survivors, have sometimes talked about the insidious effects of HIV, about all the myriad infections, illnesses, and body changes that carrying this virus in our bodies for twenty-five, thirty, thirty-five years has thrown at us. Between us, we have borne probably every one of those afflictions—neuropathy, lipodystrophy, loss of muscle and bone mass, chronic fatigue, diarrhea from the meds, strange pneumonias… We’ve battled them all, and then some.
From the time I was diagnosed positive in 1989, I’ve said that of all the possible effects of HIV, the two that I dread most are the loss of mobility and the loss of my mental faculties. Well, the mobility ship has sailed already—due to an inoperable compression fracture in my spine and a cracked pelvis from my last major fall, I am forced to use a wheelchair any time I leave the apartment. I’m not completely immobile or shut in, but I cannot leave the apartment alone—you try pushing this wheelchair plus my 118 pounds up the hills in this town! I’m dealing with the loss of mobility as best I can.
That leaves dementia, waiting in the wings.
I sometimes joke with friends that when I turned sixty, both my bladder and my brain turned into sieves—nothing much stays in either organ for very long these days. I know that “brain farts” and a difficult bladder are natural parts of aging, that the loss of short- and long-term memory commonly afflicts us as we age. It doesn’t bother me when I’ve mentally misplaced, say, the name of a college buddy or the date of my sister’s birthday or an old address. We all forget those kinds of things now and then.
What terrifies me is forgetting everything.
More than once lately, I’ve had reason to worry about my mental ability. For instance, as I wrote last month, I have finally admitted the truth of my current situation and asked the Shanti Project to provide me a daytime companion for a day or two each week to help me with chores I simply cannot do alone, e.g., grocery shopping. While I wait for a new crew of companions to be trained, Nick Picciani, the Care Navigator for Shanti’s HIV Programs, has offered to fill in. We met Monday for the first time.
Well, for me it was the first time. Nick swears, and my husband Rick confirms, that Nick was here at our home once before to talk about Shanti’s services. He says he visited me shortly after my month in a physical rehab facility; says we sat in my living room and talked for a couple hours about my writing career, my being HIV-positive, the kinds of services I might need, and more. Rick has confirmed —“Yeah, I met him, he’s cute, seemed really nice.”
I have NO MEMORY of Nick’s visit. None. Zip. Zilch. Nada. I have absolutely NO recollection of ever meeting Nick, let alone sitting and baring my soul to him for hours. Not even meeting him yesterday and listening to him tell me about his visit jarred anything in my memory. In my mind, we met for the first time yesterday. If I didn’t trust both Nick and Rick completely, I might think I’m being gaslighted.
Other incidents have me concerned about what might be coming. Several times lately, when I’ve been speaking with Rick or others, I have found myself in the middle of a sentence—suddenly lost, utterly forgetting what I was saying, instantly forgetting everything about the discussion we were having. I get to the middle of a sentence, and STOP, dumbfounded; not another word will form in my brain. I’ve never experienced anything else so totally disorienting. Or so humiliating. Or so scary.
We can wear adult protective underwear to deal with our lazy bladders. Unfortunately, there’s nothing we can wear to keep our memories from fading into oblivion. UCSF’s HIV InSite web page identifies “AIDS Dementia Complex (ADC) [as] one of the most common and clinically important complications of late HIV-1 infection.” Patients affected “lose track of actions… or of conversations in mid-sentence (‘What was I saying?’). Processing unrelated or complex thoughts becomes slower and less facile” as the virus nibbles away at our gray cells.
Those of you who are recently diagnosed positive might be able to relax. A bit. The opportunistic illnesses and bodily changes that have plagued me and other survivors might not afflict you as you age. With research, there may soon be ways for you to avoid most of these co-morbidities. For us long-term HIV survivors, especially those of us who survived the Plague Years, it might be too late to avoid them, but perhaps we can find together ways to cope with, if not eradicate, these insidious effects.
UCSF’s HIV InSite web page also explains that ADC can lead to diminution of bodily functions; in its most severe iteration, it can lead to—
No! I will not go there! It’s scary enough to think that my mind may turn into useless mush, rendering me a slobbering old coot, propped up in my wheelchair like Norman Bates’s mother. Until then (if it happens), please excuse me if I forget your birthday. Or your name. Or my name.
Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his husband Rick. Follow him on Twitter @HankTroutWriter.