Back during the winter of 2006-07, I was hospitalized at Cedars-Sinai in West Hollywood. Following brain surgery which yielded a diagnosis of PML, I spent about a week in the ICU and then another week “recovering” in the posh “celebrity wing” I’d finagled my way into (just how is a story for another time). The Progressive Multifocal Leukoencephalopathy diagnosis came with the rather dire “4-6 months to live” talk with my doctor and the seemingly false hope (at the time) that 10% of people diagnosed with PML live beyond that timeframe, with the progression of the disease halted by improved immune system function and sufferers incorporating whatever debilitating effects the disease had already unleashed into their now dramatically and irreversibly altered lives.
They had started me on high doses of Kaletra, an antiretroviral medication that is a combination of two protease inhibitors, lopinavir and ritonavir, which work together to prevent HIV from reproducing. The question put to me was binary. Lie around and wait 4-6 months to see if the Highly Active Antiretroviral Therapy (HAART) I was undergoing would be successful in reviving at least some immune system function to fight the PML, or assume HAART would be successful and get a head start on living the rest of my life as a disabled man. I chose the latter.
So the first thing they did was transfer me from my fancy suite of rooms in the celebrity wing (which had caused my father to say, “who’s paying for all this?”) in the north tower to a rather typical room on the ART unit on the seventh floor of the south tower.
ART stands for “Acute Rehabilitative Therapy,” and patients there come from all over the hospital after their initial medical crisis has left them disabled – usually physically impaired. We had stroke survivors, people who had been in auto accidents, and even a woman recently diagnosed with MS.
The philosophy behind ART was simple: something terrible and life-changing happened to you that left you in a state… we’re going to teach you how to live your life in that state. The principal staff members on the ART unit were “occupational therapists” who focused their attention on seemingly mundane tasks like brushing your teeth or retrieving something from a shelf. They were not “physical therapists” whose focus would be regaining strength in an injured limb or balance when standing, or the like. Although there was some of that, the underlying assumption was the physical disability was a given, accept it and learn how to live with it – learn how to live as a disabled person.
There was another kind of staff member called a “speech therapist.” Like some of the stroke survivors, my speech had been dramatically affected by PML to the point that I sounded like a cross between the Charlie Brown teacher and a cassette player whose batteries were dying. In fact, if we were to have a conversation today and you could understand me, it’s the speech therapists who are to thank. They had me repeat certain phrases out loud for hours – two I remember, designed to strengthen enunciation, were “cake, Coca Cola, candy” and “paw, tar, call, law.” I would have to practice the phrase out loud on my own in my room until I could say each of the words distinctly and clearly. I remember triumphantly calling the ST into my room one afternoon and declaring I’ve got it. The phrase was “paw, tar, call, law.” She said, “go on then, let’s hear it.” And I said, “patakala.” I responded to the look of disappointment on her face by adding, “you’ve never heard of patakala? It’s a puff pastry, very popular in Greece and throughout the eastern Meditaranean.” She remained unconvinced. And disappointed.
And I was frustrated. A big part of my speech problem centered on saliva and breathing. It seems obvious because you do it and have been doing it automatically all your life, but you have to swallow the saliva your mouth produces and remember to breathe when speaking. PML had robbed me of those two automatic (they call them “involuntary”) bodily functions, so by the end of me speaking a sentence that sounded more like an aardvark being interfered with than a human practicing language, I’d be gasping for air and you’d be covered in spit! Along with an extreme sense of frustration and failure, I found the whole thing rather embarrassing.
In walks this woman in a white lab coat. I’m already annoyed because speech therapy was cutting into my Law & Order-watching-on-tv time, so I lashed out – “who the hell are you?” She replied, “ooh a feisty one, now calm down dear, I’m your swallowing coach.”
I’m not sure if she understood that I suffered from PML, the underlying cause of which is HIV infection, transmitted by sharing bodily fluids. But the look of horror and abject terror (more like disgust) that overcame her face when I responded tells me she did and that she had a pretty good sense (if not a mental image) of exactly what I was alluding to. All I said was…
“If you’d been here ten years ago I wouldn’t be in this mess.”