I was diagnosed with Myalgic Encephalomyelitis (ME) in 1987 by a well-respected paediatrician with an interest in alternative forms of therapy. The onset of the condition (the recognition of which remains controversial) followed a, now, well-defined inception and trajectory; it was, in all likelihood, precipitated by a bout of glandular fever a year earlier.
My case presented many of the classic symptoms associated with ME: profound malaise, muscular pain and weakness, headaches, twitching eyelids, problems with temperature control and motor coordination, swollen glands, and persistent flu-like symptoms, as well as a raft of neurological impairments, such as short-term memory loss, confusion, difficulties concentrating and distinguish left from right, impairment of spatial perception, along with episodes of derealisation, hallucinations, and depression. I also developed intolerances to alcohol, coffee, wheat, corn, chili, curry, and citrus fruits. As a result, I was not able to continue learning how to drive (and still cannot, due to the concomitant perceptual impediment), and had to be content with a restricted diet.
When the illness first began to take its grip, I was commuting between Aberystwyth and my parents’ home on a more-or-less weekly basis, during the final stage of my mother’s battle with cancer. Simultaneously, the deadline for completing my PhD Art History thesis pressed upon me, as did the responsibility for part-time tutoring at my university’s art department. Consequently, there was little opportunity for respite. I suspect that a combination of emotional, mental, and physical exhaustion contributed significantly to the transformation of one illness into another, far more malevolent.
During the years that followed, I continued to work as a tutor, subsequently as a lecturer and, finally, as a Professor and Head of School, while also maintaining my practice as an artist and art historian. This was as much an act of defiance as of necessity. Quite possibly, these engagements forestalled the speedy and full recovery that my supporters wished for me. My condition ebbed and flowed with tiresome regularity over the next two decades. During the first year of the illness, I charted its ‘progress’ on a graph using a scale of ‘1’ (utterly wasted) to ‘10’ (good as can be expected). My score rarely rose above ‘5’.
Increasingly, my identity became defined by the deficit; I was an illness with a person, rather than a person with an illness. Neither perspective was particularly helpful. Worse still, I could see the affect that my debilitations was having on loved ones – it’s not only the sick who suffer – and the exasperation of friends as they witnessed the condition’s mocking endurance.
In 1992, I took part in an ‘off-label’ trial of gamma globulin. It’s usually administered to temporarily boost a patient’s immunity against disease. My immune system had been severely compromised by the chronic nature of the problem. The medication got me over a hump, to the extent that when a ‘downer’ inevitably returned, it was not so profound in either severity or duration.
It’s been thirty years since I received my diagnosis. The condition has persisted, albeit more moderately and with longer intervals between relapses. I still experience the physical and neurological symptoms, as well as the secondary effects – including a dippy hypothalamus. The hurricane has passed, but the damage has been done. Likely or not, the aftermath is irreparable.
I’ve known folk who’ve had the illness far more intensely than did I, but for a comparatively short period of time, and with no relapse. There are others who’ve been completely debilitated, permanently. Mercifully, only 3% of sufferers die from ME, due largely to either cardiac or liver failure, brain tumours, and sudden death following over-exertion. This figure doesn’t include all those who find their predicament so utterly intolerable that they take their own life. My experience has been life changing, but it could’ve been far far worse.
Of course, having ME. doesn’t exempt me from falling foul of any other malady that a body can generate: cancers, heart disease, aneurisms, and so forth. And, with neither side of my family being remarkable for their longevity (with a few notable exceptions), I’ve learned, as Thoreau determined, ‘to suck out all the marrow of life’, day-by-day. And, to be thankful.