New Car Smell

The day I first tested positive for the HIV virus, I was throwing a cocktail/dinner party that night.  A long-time friend was moving from Los Angeles to Boston the next day, and as I went about preparing canapés and making sure there was enough ice, he pleaded with me to cancel the party.  All I could say was, “why?”  Knowing the source of one’s own mortality is wildly freeing.  It puts things into perspective; a million tiny grievances and worries — things that go to make up a life — just fall away, in the flash of a diagnosis.  As an adult, I’ve never known a world without HIV/AIDS.  I took the necessary precautions to avoid infection, and insisted on the same from my sexual partners (legion though they were not), but the inevitability of one day hearing “your test came back positive” brought me an odd sense of calm.  And peace.  One chapter of my life was closing; it would be another nine years before the next would begin.

Nine years and two months.  October 4, 2006.

Two days earlier, Monday, October 2nd, I played hooky from work.  My weakness for new cars was well known by this time around the office thanks to an “incident” from three years before.  Back in 2003, on a Friday, Vanessa from Accounting had backed into my 2002 Honda Accord, leaving the driver’s-side door looking like a moon crater.  She was mortified; I was bemused.  “Oh please don’t call your insurance company Matt — take it to get repaired and I’ll give you cash on Monday.”  Unbeknownst to Vanessa, the Accord was already a year old and I had tired of it.  So rather than a body shop, I went to a Nissan dealer the next morning; I’d had my eye on the Altima, a sortof mid-range sedan not quite as staid and boring as an Accord.  I’d concocted a sob story to tell the salesman about how some nincompoop had backed into me the night before (which had the benefit of being true — Vanessa was a nincompoop) which was such bad timing because I’d already done my research (I hadn’t, I was just very impulsive) and had planned to trade-in the Accord that weekend, so I hoped he wouldn’t ding me (a pun?) too much on its value.  Ensconced in the new car smell of an Altima, I headed into work the following Monday.

Vanessa seemed nervous as she approached me in the break room getting a coffee, open checkbook in one hand, pen in the other; it amazes me to this day, because I think myself approachable as a basket of puppies, but more than one person told me after I left the employ of Technicolor that they were “intimidated” by me back then.  I guess we never really know how we come across.  So Vanessa sidled on up beside me as I was pouring non-dairy creamer with the taste and consistency of liquid chalk into my cup o’ joe and tentatively muttered “so how much was it?”  I turned to look at her, and said, stone-faced, “$23,000, with tax and license out the door, and they threw in floor mats!”  A coworker, standing nearby, said, “you know Matt, you really are kindof a dick.”

Three years and two cars later, now a vice president at the greatest name in color, I had my eyes on something more top-of-the-line.  So I was back at that Nissan dealership looking at a Maxima like the one above, heart intent on the six cylinder “sports package” with leather seats.  There were plenty to choose from, but none in the color I fancied, which was called “Sandstone” (again, see above).  I had arrived around 11 o’clock that morning, thinking I had plenty of time to negotiate a deal and make my 3 o’clock appointment at my doctor’s office in West Hollywood to discus this limp which had developed in my left leg necessitating walking with a cane which I used to optimum effect to evince an air of cultured sophistication far beyond my 40 years of age.  Going back and forth with the salesman who assured me they could order any color and combination of options I wanted, I weighed the immediate gratification of going home with a new car that day against the satisfaction of getting exactly what I wanted, albeit taking delivery of my prize in about a month’s time.

Avarice (and impulsivity) won the day, and by the time my 3 o’clock doctor’s appointment rolled around, I was still sitting in an unremarkable gray cubicle at Morrie Sage’s Universal City Nissan about a mile from where Herb Kalmus and Daniel Frost Comstock had perfected Technicolor's 3-strip/color process first seen by the American public in films such as The Adventures of Robin Hood (1938), The Wizard of Oz (1939), Gone with the Wind (1939), and Down Argentine Way (1940); pedantic side note of historical importance and accuracy:  most Hollywood film buffs and not a few industry insiders will insist those were the first films in color, but the animated Disney feature Snow White and the Seven Dwarfs was actually first in the United States in 1937, not to mention the fact that Britain's Kinemacolor had been invented long before and was used between 1908 and 1914.

I rang up Dr. Scarsella’s office and made some lame excuse about not being able to get away from work only to be put on hold and made to listen to the most dreadful hold music — something along the lines of Led Zeppelin played by a lounge act at a Howard Johnson's in Des Moines.  I was unaware that my doctor, a veteran in treating HIV/AIDS since it first reared its ugly head in the 80’s, had an idea about what was causing a middle-aged man in otherwise good health to suddenly and without warning have trouble walking and had arranged for a world-renowned neurologist from Cedars-Sinai Medical Center to join him at this appointment for a consultation.  I thought I had a pinched nerve or a pulled muscle; they knew, insofar as they could without a battery of corroborative tests, that this was something much more serious — something they had seen before and something that was almost always fatal.

The receptionist came back on the line and said, with a terse, defensive tone as though she’d just been yelled at, “okay Mr. Wilkinson, the doctor would like to see you at 9 o’clock sharp on Wednesday morning the 4th… have a good day,” and then hung up before I could respond.  I finished the deal for my new car and proudly drove it home past Universal Studios, luxuriating in that new car smell I loved so much .  Life, I thought to myself, is going rather well.

Other than work on Tuesday, the drive to West Hollywood on Wednesday was the first time I got to enjoy my new purchase; it would be the penultimate time I drove it or any other car.  My last trip behind the wheel was on Friday the 6th for a followup with the neurologist, who tapped my knees with tiny little rubber tools and asked me to play “Pat-a-Cake” with him; it seemed silly, but I had to trust he knew what he was doing — so I mustered up all my bravado and said, “you went to school for this?”  October became November, and by then I had moved back home to my parents’ house in Glendale into the bedroom that had been mine as a boy growing up — I could not walk and I could barely talk, sounding something like Mrs. Donovan, Charlie Brown's teacher from Peanuts.

By the time Thanksgiving gave way to Christmas, I was an inpatient at Cedars and being prepped for brain surgery.  MRI imaging had revealed a significant lesion on the brain, and while Dr. Scarsella my HIV specialist and Dr. Young my neurologist were reasonably certain they knew what it was — neural demyelination caused by JC Virus, the proximate cause in those with severely compromised immune systems (like me) of a rare disease called Progressive Multifocal Leukoencephalopathy which gets shortened to “PML” — they still had to go in and scrape some out and so perform a biopsy to confirm their suspicions.

Their suspicions were confirmed.  I would never walk, let alone drive, again.  What’s more, their diagnosis, which was communicated to me on January 18, 2007 in my room in the south tower at Cedars, came with news even more devastating than that:  I had, if I was lucky, four months to live.  You know you’re in trouble when a doctor sits on the edge of your bed, smooths the wrinkles out of the blankets, and says, “Is there anyplace on earth you always wanted to go but haven’t?”   That conversation ended with me asking him to get me an “everything" bagel and a decent cup of coffee from Starbucks.  Which he did.

Whoa there, slow down, you thought it was PML caused by AIDS, now you're talking about something called JC — what the hell is that?  "It stands for Jesus Christ."  Cool your jets there Turbo, not laughing.  What’s with all the acronyms?  "It causes PML.  It is destroying your cerebral cortex, it is inoperable, the best we can hope to do is slow it down with medication, survival rates have improved."  That's just ducky; how many patients you got with this alphabet soup of a disease?  "That lived?”  No Einstein, tell me about the dead ones, that would be really helpful.  

JC virus is an opportunistic infection, and anywhere from 86% to 90% of the general population has antibodies for it but it usually remains latent, causing disease only when the immune system has been severely compromised.  PML is a demyelinating disease caused by the JC virus, in which the myelin sheath covering the axons of nerve cells is gradually destroyed, impairing the transmission of nerve impulses.  Think of a frayed electrical cord...

Progressive Multifocal Leukoencephalopathy

pathy:  progressive damage
leuko:  of the white matter
encephalo:  of the brain at

multifocal:  multiple locations

It targets white brain matter, which is mostly comprised of axons from the outermost part of the brain — the cortex.  My CD4 cells (T-Cells) had dropped below the threshold where HIV infection becomes AIDS; the lack of pathogen-fighting T-Cells in my bloodstream gave the JC virus permission to start destroying the myelin which insulates the axons carrying electrochemical impulses in the brain, effectively blocking the brain’s ability to send instructions to parts of my body, a condition which persists today.  For example, the communication between my brain and the left side of my body has been cut-off resulting in the inability to walk or pick things up with my left hand; unlike paralysis, my left leg and arm, my left foot and hand, “work” — I just can’t tell them what to do.  This is sometimes called left (or right) -sided “weakness,” but that is misleading, because it suggests the affected side does not have the strength to do something; on the contrary, my left side is still every bit as capable of doing everything it could do before 2007, it’s just when my brain sends out the instruction to do it, the message does not get to its intended recipient and is bottlenecked and/or blocked by the damaged axon.  PML is rapidly and mercilessly life-threatening, killing 90% of people diagnosed with it within six months.

The 10% who survive are affected by its ravages for the rest of their lives, leaving us to wonder if the dead weren’t the lucky ones.  There is no cure, so treatment is limited to addressing its symptoms.  I went through months of intensive speech therapy to learn how to speak again (much to the chagrin of those who had wished for years I would just shut up), and equally grueling physical and occupational therapy to regain some smattering of mobility and fine motor skills — I can poke clumsily at the keys on my laptop keyboard to plunk out this page of text and blog posts, but I cannot write my own name with a pen!  In 2013 I got a motorized wheelchair (technically, a “powerchair”) which I navigate using a joystick in my right hand, trading it in recently for a newer model with an ergonomic seat and shock absorbers to cushion my tushy — but no new car smell!  It all started with an odd little limp.  And a Nissan Maxima.

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