At the end of November, I lost one of my best friends. I am going to force myself to write about the loss, and him.
Martyn Paul Jackson was an amazing man. One wonders just what he might have achieved if he had not contracted ME as a young man at university. He was a scholar, a rocker, a writer, a cricketer, a journalist, a keen amateur politician. He still managed to do a great deal even afterwards.
As for the disease… he did not let it define him, or stop him. But it was a permanent, unwelcome presence, and one can hardly talk about him without it; he would not want us to, because he was an activist for ME causes as well. You can call it Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelopathy (ME). In the early stages, when he found himself becoming thin, excessively pale and having trouble with bright sunlight, he joked that he might be turning into a vampire (and was planning an article for Fortean Times on that subject).
I was an Occupational Therapist for ten years, and I like to think I got fairly good at telling when someone was genuinely ill and when they weren’t. With Martyn, I never had a doubt. Towards the end he was underweight, bone density dangerously low, teeth rotting, intestines bleeding, heartbeat irregular—and those were just the objectively verifiable things. I suppose that there is no way to prove someone is in severe pain, and I doubt Martyn would have consented to trying more than the very narrow range of foods he could tolerate so that people could see his guts explode, but still… it beggars belief that there are still doctors and scientists out there who claim it is a mental illness.
The most poisonous part of this misapprehension is that it breaks down the trust between doctor and patient. Martyn even once had to consent to surgery to prove that he did not have Crohn’s disease. The only hospital he said actually helped him closed down its programme, the consultant retired and it seemed from that point forward that no one person ever had a handle on his health. The heart person knew something about his heart, but not his guts; the gut person knew about his guts but not his bones, the bones person knew about his bones but not his heart, and so forth. At the time of his death from heart failure, the last thing his GP had said, when asked about it, was that they were just going to have to wait for the consultant to write back. He died before the letter arrived.
Nor was the health service geared up for treating chronic problems; the physiotherapist could work on his shoulders for a few weeks but if there was no miraculous cure in that time then bad luck, you are on your own while they deteriorate. Likewise they seem incapable of dealing with individuals; a valuable anti-fungal drug was removed in a blanket ban for causing liver problems, even though Martyn’s liver was one of the few bits that was functioning properly.
It is hard not to become negative or bitter about such things; I haven’t managed it, and in all honesty, neither did Martyn. He did not get the best out of the health service, but all the same, it failed him. That should not be brushed under the carpet.
Martyn died of Arrythmogenic Right Ventricular Dysplasia, or ARVD. I honestly do not know whether that was related to the ME, but were it not for that, I am sure it would have been detected and treated. In that sense, the disease killed him.
But he lived before he died, and I had the privilege to know him. We met at the film classes of Dr Gail-Nina Anderson, soon realised we had interests in common, and fell in. Martyn had the gift of making new friends, and I think we complemented each other well. I am quite shy and withdrawn, even though I do not always seem it; I tend to isolation and depression. Martyn was a warrior against such things, and did not let them beat him. He was the one with ME, but he dragged me out of the house to go to gigs and films. He spotted events and planned for them. He remembered names and faces, he made more friends when we went out. I provided lifts, company, and help when needed—which was sometimes a bit rarer than was comfortable. Martyn was never shy about using “carer goes free” opportunities, but only rarely allowed me to carry his bag or anything. It could sometimes be a little embarrassing!
He managed his illness very well as far as things under his control went. He knew how much activity he could stand, and planned accordingly. He knew when he would suffer for a larger degree of exertion, such as a convention or a big concert, and accepted the cost afterwards. He knew that he could get down stairs, but not up more than a few. The Tuesday before he died, we were out listening to a reading of MR James Ghost stories. He was tired walking back to the car; on Sunday, he was dead.
The oddest thing about his illness, which so far as I know was completely unique, was his allergy to digital media and lcd/plasma screens. A DVD would give him a splitting headache, but if transferred to a VHS tape and played on the same cathode-ray TV, he was fine. Being a scientist by nature, I spent a lot of effort trying to figure this out. Thanks are due to Remap and the local engineering group, Makerspace. No thanks to the general march of technology. Trying to conduct a life where you cannot use modern telecommunications equipment, and where you are limited to an ancient blackberry for email and web browsing, can become very difficult. It also showed how hard it can be to keep old equipment running; not so much from wear and tear, but because transmissions and technical standards change. I dread getting so old that I cannot keep up with computers.
Martyn was creative; he came up with the idea for my first novel in a long time, Space Expectations, and would no doubt have co-written it had his illness not limited him. One of my regrets will always be whether I could or should have done more or better by way of selling it to agents, or as an ebook.
He was also an incredible fan-boy, sometimes to an almost annoying extent. He collected memorabilia and signatures, was a member of many fan clubs, attended conventions, and it seemed he could tell you the name of the second assistant cameraman on the third episode of Dr Who from 1977 (then produce a signed picture of him he’d collected from a talk on how the production went). What he didn’t know about Clint Eastward or Thin Lizzy probably wasn’t worth knowing. Perhaps this was because some of the other outlets his life might have had were limited, but it would be wrong to dismiss fandom as just being something for ill or frustrated people. But it is unbearably sad when you are sorting through all his memorabilia and collectibles, all of which took effort to acquire and were appreciated, but many of which are now just junk and clutter.
We had a lot of fun—concerts, conventions, a road trip to a writing festival in Oxford, setting the world to rights, watching a reviewing films or laughing over old TV. The notorious worst-ever Dr Who story can be a joy when you are taking the mick out of it with a friend.
Now, he is gone. There were so many people his life had touched at the funeral and who will miss him. I cannot imagine what it was like for his parents. He has left a void. I still see something and think “I must tell Martyn about that!” or “he’s going to be… oh.” It is hardly news to most of us that life is unfair. We all know that people can die young or have lives blighted by illness. But when it happens to people close to you, it all comes home to you over again and when the anger goes, there is just the sadness. Martyn will never see Spiderman appear with the Avengers, or know how Thrones ends.
I am not religious and do not believe in an afterlife, but I take comfort that time is an illusion. Seen from an extra dimension, a life is like a sculpture or a book; all its good moments are still there, forever. Somewhere, a young Martyn is still enjoying a pint at the cricket match. With 1970’s poodle hair. Somewhere, he is still rocking out to Alice Cooper and forgetting the illness.
RIP, Martyn. We who go on are better for having known you.