Cheating Death - Surviving PML
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Life story of Elfrid Walkingtree, edited by Peter Weeren
Elfrid Walkingtree is a 46-year-old
gay Spaniard living in London with a brain disease facilitated by
HIV known as progressive multifocal leukoencephalelopathy (PML). The disease
has affected his body coordination abilities, necessitating a life of total
dependence on others. Walkingtree continues his brave fight against HIV and PML
and has gained new energy from the fact that he has managed to survive despite
a doctor’s 1998 prognosis of impending death.
“Out of sheer fear of dying I have
found the seeds of my success and because of this I am carrying on living,“ Elfrid says. “Most certainly I’m no hero, but I’m getting
through this, and, I must say, quite well.”
On January 10,
1989
Elfrid’s life changed for the first time: He boarded a 4-and-a-half-hour flight
from Lanzarote in the sunny warm Canary Islands off the coast of Africa and exchanged tropical breezes,
constant warmth and permanent sunshine for the shocking chill of snowy,
brooding London. Deplaning in Heathrow, Elfrid experienced snow and the bitterness of a
typical British winter day with its subzero temperatures and icy winds under
leaden skies. Over the next few months, Elfrid immersed himself into a
hedonistic life lived for total pleasure. As a functioning alcoholic who was
considered to be sexually appealing by other men, Elfrid had little time left
for philosophical thought, but that all changed with shocking suddenness on
June 2, 1989, when he learned that he was HIV positive.
The diagnosis of his HIV status sent
fear rippling throughout his being, and Elfrid reacted the way many do on their
day of diagnosis: He looked for help wherever he could find it. He visited
London Lighthouse, a gay support group for HIV-infected men, and also visited
the drop-in centre at Body Positive, another action center for HIV-infected gay
men. There, Elfrid had his first conscious contact with other HIV-infected men,
from whom he took away two thoughts: First and foremost, it was impressed on
him, it would likely take up to a year until the reality of what the diagnosis
really means would sink in and he would come to terms with his changed life.
Secondly, he was told, he should give up his job as he was going to die soon,
and a job would be an inconvenient and frustrating distraction. Elfrid found
the latter advice quite easy to follow, he says, as he had been living his life
entirely in “the fast lane,” and a job had truly proved a major distraction to
him in his way of life.
Elfrid’s “first year” was full of
confusion and misinformation, but also a time of tremendous acquisition of
knowledge about his new condition. Among the many books Elfrid read was also
the very depressing memoirs of St. Augustine, from which he gleaned that
peoples’ aspirations have not changed much in 16 centuries, despite
technological advances; humans are still seeking seeking fame and fortune now
as then.
Returning to his native Canary Islands over Christmas 1989, Elfrid met
with his best friend in a pub. The two had a long discussion, where Elfrid
reached the conclusion that his HIV-status was something akin to a bad win in a
lottery, having calculated that during all the years of his active sexuality,
he had many thousand sex partners. Elfrid says he knew that the reason for his
activity was not just lust, but a desperate search for love, along with the
realization that sex was also a method to avoid confrontation with his personal
and innermost emotions and fears, some of which stemmed from withdrawal from
alcohol and unsuccessful attempts to change his addictive lifestyle and
personality.
In Shakespeare’s beautiful romance
“Romeo and Juliet,” we witness the struggle of love, and of the panic and shock
Juliet experiences upon seeing the apparently dead body of her young lover,
Romeo. She cannot imagine life without him, and, fearing that prospect, she
faces two dire choices – to commit suicide or seeking a replacement. While Elfrid
acknowledges that he is no Juliet – indeed, he says he regards himself as more
of a Romeo – he understands her tragic choice. Elfrid says that while he, too,
contemplated suicide occasionally during that first year following diagnosis,
he chose the other option – seeking another “true love,” even though in his
case, true loved proved elusive despite those thousands of “attempts” at
finding it...
During that first year, Elfrid says,
he also knew there was one thing that set him apart from many others languishing
in the self-pity and despair that follows diagnosis: He was driven by the idea
of creating some kind of Spanish-speaking support group, based on the
realization that London has many Spanish-speaking residents who also find it
very difficult to see through the immense confusion that follows an
HIV-positive diagnosis.
In June 1990, Madrid played host to an international
conference for people living with HIV and AIDS, which Elfrid attended. There,
he met many others living with the same disease, and realized that he needed to
return to London to turn his notion of a support group for Spanish-speaking
Londoners into reality. No sooner realized than done, Elfrid immediately joined
London’s “Cara Trust,” another helping
organization dealing with the needs of HIV-positive Londoners. Together with
Cara and the Lighthouse, Elfrid assisted in arranging the next international
conference for people living with HIV and AIDS, where he led a workshop on
alternative ways of fighting HIV. After
the conference and workshop, Elfrid continued to work with “Cara” in
establishing a Spanish-speaking gay men’s help group in the Westminster Abbey
area.
On March 20,
1998,
Elfrid was diagnosed with PML. Again he considered Juliet’s “other option,” but
soon rejected the notion. He thought for a minute or two that maybe the
decision that Juliet took was catching up with him and he was going to die.
Instead, he says, he decided to fight back by kicking his addictions once and
for all. By November, Elfrid was “dry” and had kicked his other addictions,
except for tobacco, which proved more of a challenge than he first expected and
was not vanquished until the following May.
Elfrid remains alcohol- and
tobacco-free to the present. In December 1997, however, driven by pain, depression
and distraction, he tried his first joint and now smokes marijuana in a pipe
weekly. Until his diagnosis with PML, Elfrid had been incredibly healthy – so
much so that many speculated that he was one of those rare cases of
HIV-positive men who live without any apparent health problems. Upon being
diagnosed with the new disease, however, doctors, friends, acquaintances and
even Elfrid himself believed he would probably not last through the summer of
1998.
PML is caused by a virus known as
JCV, which resides in the kidney. When the immune system is compromised, as in
the case of HIV-positive patients or as the result of organ transplantation,
for example, JCV travels from the kidneys through the spinal fluid to the brain
where it then rampages and ultimately causes death, usually within six months
after diagnosis. JCV kills
the cells that produce myelin, which the brain uses to form the sheath that
surrounds and protects nerves. PML patients are systematically deprived of motor skills and individual
senses as the brain is destroyed by JCV, which basically traps individuals in
their bodies while shutting down all functions. About 45% of people with PML experience a
blindness affecting half of the visual field of each eye; mental impairment
affects about 38% and about 75% experience extreme weakness, often accompanied
by failing coordination, paralysis
on one side of the body, and problems in speaking or using language.
Depending on the rapidity of
progress, those visiting loved ones with PML are often shocked at how quickly a
patient’s condition will change. Someone with PML who appeared communicative
and able to speak normally one day will frequently be able to do little more
than furrow a brow or wiggle a nose the next. Eventually, the victim is reduced
to a comatose state, which may last quite a while before physical death occurs.
By August 1998, Elfrid realized that
the disease was not progressing as rapidly as is often the case and he vowed to
survive it as long as possible. Late in 1999, he released himself from the
hospice he had checked into in preparation for his death, and by January 2000
he began a rigorous daily regimen of physical and mental exercise that
continues until today.
Results were not immediately
forthcoming, but progress showed itself in that he slowly regained awareness of
his pre-PML self. Living without self-doubt and confidently is the key, he
says, to his apparent success, accompanied by changes to his diet, including food
and vitamin supplements, as well as a physical rehabilitation program.
After first returning home from the
hospice, all he was able to ingest were mainly fortified drinks and very little
solid food, as he was unable to chew because of the PML. His daily intake
included daily multivitamin and multimineral tablets along with his anti-HIV
combination medications. These frequently caused nauseousness, vomiting and
diarrhea, as experienced by many other HIV-positive gay men taking a “cocktail”
of drugs which usually includes AZT, 3TC and Intinavir. All of these drugs have well-documented side effects
which are sometimes so serious that many patients report feeling sicker while
taking them than when they discontinue them.
In Elfrid’s case, the JC virus inexplicably
appears to have stopped its rampage in the brain and thus is not causing any
additional damage; he appears to have stabilized in his present state. Elfrid
remains unable to write, read, walk, or speak well, and is also unable to do
much of anything requiring the use of his hands, all the direct result of PML.
He continues his brave fight from his wheelchair, where he says he feels he has
acquired a rather "camp" image of the semi-god Hercules. While he
says he’s not happy about that, he has learned to look at life differently and
is doing so as best he can, with the determination to continue doing so as long
and well as possible.