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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.