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Being Alive

AIDS Ride 1997: A PWA Journal-March


Being Alive 1997 Apr 5: 2

This is the third in the Newsletter's series of Chris Griffin's journal entries documenting his training and participation in the California aids Ride, taking place the first week of June: 525 miles, from San Francisco to LA, over the course of seven days.

I'm pedaling out toward Highway 64, but the wind is too fierce. I have to lean into the gusts just to avoid being blown off the road. Dark threatening rainclouds envelop the mountains off to the west, and every now and again light pellets of rain spit into my flesh. Going further seems madness, but, not wanting to abort my ride, I turn my back on the storm and head toward the less clouded east. Dillon Road will take me through the arid ramshackle downtown of Desert Hot Springs; beyond that I don't know, but I can see in the far distance that it continues on into the eastern hills and beyond. I figure it will eventually lead me to Sky Valley and Thousand Palms, where I'll be able to find my way home. I decide to adventure it. With the wind and rain now at my back I pedal off into untried territory.

Soon I'm biking up a long slow grade, the storm far behind. I can see that the road keeps climbing a good three or four miles ahead of me. I begin to wonder if I should turn around, go back home the way I came. I stop at a dusty roadside market for water, learn from the Japanese shopkeeper that this road eventually leads to the much-too-distant Indio, but that there is a cutoff about half way which will lead me down to Thousand Palms and Ramon Road, familiar territory. I decide to continue on.

The grade keeps climbing, much farther and higher than I expected. In time I reach the summit, which provides a commanding view of the entire stretch of the Coachella Valley. I can see all the way from the Salton Sea in the southeast to Palm Springs in the west. And then the road starts down again. Down for what seems forever. No traffic, no town, no stop signs or stop lights, no people or enterprise at all, just me and my whizzing bike and the silent, still desert stretching off on all sides as far as I can see. Thirty-five miles per hour, smooth sailing, exhilarating. Laughing right out loud from the fun of it. Then I dip down into the National Wildlife Reserve, still racing downhill, past the old palm-ringed oasis, through mini-canyons of ancient stone. No cars, no people, just me on this old two-lane blacktop and the natural world in all its wonder.

This is what I bike for, this solitary adventure into marvelous terrain. I calculate that by the time I get home I will have done 46 miles, more than ever before.

Two days later I come down with the flu.

Ten days of wheezing coughing sneezing misery. Strep throat. Piercing pain in my lungs when I cough. I fear bacterial infection, in my sinuses, in my lungs. My T-cells may be protease inhibitor enhanced, but nevertheless all my old fears, of bacterial pneumonia, of PCP, of whatever, return.

I am revisiting my aids persona. Being sick again. Being housebound. A shriveling of my experience of the world. A tendency toward isolating. Being unwell.

It's almost exactly a year since I stopped feeling sick. Since the ingestion of Crixivan brought a new vitality to my entire system, felt in the very tissue and sinew of my body. Since the upswing in my T-cells and the suppression of my viral load led me to imagine this future-riding in the desert-that I never thought I would have. It's been so long now that I rarely even think of myself as sick anymore, despite the daily intake of no fewer than 28 pills. How quickly has vanished an entire way of being-person with aids, person with nearly zero T-cells, person with diminished expectations, person out of time, person with surgically-implanted catheter, daily infusions of IV drugs, sporadic bouts with nausea, chronic pain, intermittent colonoscopies, person staring awfully into the dark region of death.

How quickly-and easily-I have forgotten the specific feel of such a life and embraced its very opposite. A year ago I was increasingly feeling the tug of mortality, a gradual yet irreparable diminution toward finality. But over the last half-dozen months, this feeling has been replaced by a magnetic urge toward vigorous living, a physical embrace of even the smallest of daily events-vaccuming the house, taking a shower, brushing my teeth.

I check my temperature hourly, but, mercifully, there is no fever. I realize this is nothing but a nasty, vicious flu bug. I may feel like death warmed over, but I realize that this will pass, that good hearty health will return, that this sickness I am experiencing is, unlike my experience with aids, simply a minor (if debilitating) annoyance. I am "sick" the way normal people (i.e., people without a terminal illness) are "sick": a momentary inconvenience, tempered by Theraflu, cured by time.

This is very odd. The one thing you could never do with aids is hunker down and wait it out. Lie on the couch feeling miserable but know that it was simply a matter of time until you would feel better again and the sickness would be gone. No such assurances were possible with aids. The next day could (and often did) bring something worse than the day before, and time was, if anything, the enemy, each tick of the clock bringing you closer to the inevitable.

For many of us who have made it this far, this is what has changed so dramatically. Time, it seems, may be our friend again.

Don calls me. He tells me that none of the protease inhibitors have worked for him. That regardless of which one he takes, his T-cells keep falling and his viral load stays up in the 200,000 range. We have discussed this before, concluding that his particular strain of the virus must be extraordinarily virulent. He has been trying nevirapine in combination with other antiretrovirals. He will go on nelfinavir now that it has become available.

He is, naturally, rather shaken by the failure of the drugs to suppress his virus.

My own good fortune, which sometimes seems as wide as the world, now feels narrow, withered, tightly constrained. Time goes on ticking, and Don can only dreadfully imagine where it might lead.

I am biking back home along Indian Avenue, a two-lane stretch of flat highway cutting through the barren desert between Palm Springs and I-10.

After twelve days of being knocked flat by the flu I am back out on my bike again. The air is thick and warm. I'm conscious in my breathing of damaged tissue in my lungs and nasal cavities, but otherwise I feel altogether restored.

Suddenly, whhrrrcackkk! Some kind of enormous blast behind me. I turn to see an eighteen-wheeler barreling down upon me, rocking wildly out of control, one of its tires burst and unraveling, whipping bits of rubber and casing as the truck careens ever closer to me. All I have time for is to grip tight, hold my breath, brace myself for collision. The semi hones in on me, I can feel it thundering toward my back, then it speeds past no more than a foot to my left, brakes screeching, road dirt and exploded tire debris whizzing past my face and arms and legs. Something hisses by my left arm; large pieces of tire and steel-radial wire blow across my path and behind me, stinging into the sand to my right. The air becomes choked with dirt and dust as the truck struggles to slow. A hundred yards beyond me it finally manages to come to a stop.

I pedal on. I am miraculously untouched. I pass the stopped eighteen-wheeler, trying to control my shaking hands and legs.

For half a second and with great irony I have seen my new obituary: "PWA Killed While Training for AIDS Ride." I survive years of aids-17 years of hiv infection-only to get annihilated in a split second by the proverbial truck.

In time, my nerves settle. In time, I make my way home.


Information in this article was accurate in April 5, 1997. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.