Multiple sclerosis is a disease of the brain and the central nervous system, so there is an endless range of possible symptoms: loss of co-ordination, fatigue, problems with vision, tremors, pins and needles, loss of mobility… You name it. In my case, it seems to have caused a case of "extreme reaction to irritating baby boomers".
OK, I know that final symptom is not specific to those of us with MS, but in my case it is definitely MS-related. Most baby boomers are only just beginning to confront the issue of the body’s essential fragility. Since I am contemplating the same issue, I can’t tell you how annoying it is to watch baby boomers, as always, behave as though they are the first people on earth ever to consider such a possibility, before charging out to bungee-jump off Mount Kilimanjaro or cross the Gobi desert by yak.
A few weeks ago, a boomer colleague announced that he had signed up for a canoeing expedition down the Amazon river. I know I should just have told him to have a nice trip. But if in the Amazon there is a tiny fish that might swim up the genitals of an unsuspecting baby boomer who ought to be sitting in an easy chair with a nice hot cup of cocoa instead of undertaking adventures that should rightly be the domain of 30-somethings (such as, for example, me), and if the notorious candiru (otherwise known as the "Amazon willy-fish") has expandable spines which will duly expand once inside the genitals of said baby boomer, causing excruciating pain and forcing the baby boomer to spend the rest of his holiday undergoing emergency surgery in the most intimate places, well, that is not a possibility that I feel compelled to keep to myself. ("I thought everyone had heard of the Amazon willy-fish.") And if there is a video on YouTube in which an Amazonian local re-enacts, with much crotch-clutching, the exact moment at which the candiru entered his penis, before his surgeon displays the little fish to the camera (and actually it’s quite a big fish, if you imagine it swimming up your urinary tract) — well, I’m happy to share that, too. I am not quite such a bitch as to hope that my colleague ends up providing shelter to an Amazon willy-fish. But I am easily enough of a bitch to hope that he lies awake at night, every night, sweating about the possibility. Have a nice trip.
At the moment, boomers seem torn between denying the realities of physical decline — large numbers of them still have "Hope I Die Before I Get Old" on a continuous loop on their iPods — and "re-inventing" ageing just as they "invented" youth. And then, of course, they’ll reinvent death.
If I’m feeling in a generous mood, I can look upon this prospect with tranquility. The boomers have been a noisy, demanding generation, after all, and they will be a powerful "greypower" lobby group through sheer weight of numbers. Perhaps we can look forward to better healthcare facilities and five star disability access at all the important rock venues, which will be some compensation for having to listen to Joni Mitchell at a zillion boomer funerals.
But I’m not in a generous mood very often these days. And in my less generous moods, I think that we post-boomer generations had better start thinking about our own inevitable decline. Otherwise, by the time we reach our own final years, we’ll have the gargantuan task of dismantling the edifice of whatever system the boomers set up before we can finally settle back in peace to irritate our grandchildren. If we don’t want the boomers to continue to dominate our lives from beyond the grave, we post-boomers need to work out our own feelings about mortality.
Me, I’ve been thinking a lot about mortality lately. Actually, because I’ve been in a certain amount of pain, I’ve been thinking about the fact that all things being equal, my own mortality is a fair way off. And in the time until then, there will be more pain to come. I’m not good at pain. In fact, I’m a total wuss at pain. I try not to be. I want to be a warrior, or at least a big brave girl. But alas, I am not. Pain renders me deeply existential. When I’m in pain, the mere existence of pain in the universe makes life seem almost unbearable.
Right now, my MS is relapsing-remitting, so I know that the pain will lift — at least for awhile. But when the pain is there, that doesn’t help. I become preoccupied not only with my own pain, but with all the pain in the universe. I feel that even if the pain were to cease, I would not be able to go on, knowing that I would ever have to suffer pain ever again. I become overwhelmed by the thought of all the other people in the world who are suffering pain: pain much worse than mine, pain without access to doctors and painkillers, pain without end. I know that my pain is not particularly extreme, in the grand scheme of things. And yet I cannot bear it — except that I have to bear it.
I also wonder about the moment when I may decide that actually, I don’t have to bear it. I could exit. I could end the pain — my own pain, at least. I know that some people want the state to help them die when they reach that moment.
I know that this is not the way that euthanasia advocates frame their argument. They say that they just want the state to stand out of the way, to let them die. But a legalised euthanasia system would require state oversight and state administration. And I do not trust the state — any state — to oversee such a system.
I am not arguing for the "sanctity of life" here. I can’t say that if my pain became endless, and more intense, I would not seek to end things. But I don’t think it is up to the state to help me — especially not when state failures to provide adequately for the sick do so much to intensify the misery. I do not think that the state should be providing fast-track exit routes when it does not provide adequate resources for battling on.
During my most recent flare, I was referred to a pain management clinic, but told that there was a waiting list of nine months. I imagine that if my situation had been more acute, I might have got an earlier appointment but surely on this issue, early intervention would make all the difference. I would be very suspicious of a state that legalised euthanasia, but did not provide universal and speedy access to pain management and other support. The experience of illness is generally about a lot more than the disease itself: it is about the available health care, about the attitudes of carers, about social attitudes that stigmatise disability and illness. I am very far from convinced that many patients, caught up in a health system that leaves them so disempowered, would be making a "meaningful choice" in deciding that it was time for them to die.
I know that some patients believe that euthanasia would be a way to reclaim the power that they have lost but I do not agree. Very few people would be "choosing" between best-practice palliative care, and the fast route out. Most would be choosing between substandard care and unnecessary pain and helplessness, and "wouldn’t this save everyone so much trouble?". Public euthanasia advocates (including those who are seriously ill) generally come across as strong-willed, relatively well-resourced, and determined. I can well believe that no-one could boss them into dying if they weren’t ready to go. Many of them, of course, cannot be bossed into staying on either. I do not suggest that they should be — only that we do not have to push them out the door.
Most of the people who you meet in the public health system, however, are nothing like that. Those with long-term illnesses are run-down in every sense, financially not least among them. And could they end up choosing euthanasia because of lack of access to other choices, like appropriate care and treatment? I am very sure that they could — not because of active bullying by medical staff and family but because of the failings of a run-down system. I believe that the justice system should treat relatives who assist in the suicide with appropriate compassion — but I do not think that state-regulated euthanasia is appropriate compassion.
So while I won’t be campaigning for legalised euthanasia, I will be campaigning for a decent public health system. Of course, they are not incompatible campaigns. But the euthanasia campaign gets much bigger headlines. Perhaps, weirdly, it’s somehow seen as less depressing.
I don’t know what lies ahead. And as I said, I’m a coward. I don’t want to live with pain. And at the moment, I don’t have to. It has lifted, as I was told that it would. Now I just have to live with the knowledge that it will come back — and I’m finding it hard to live with even the thought of it. I don’t guarantee my ability to live with actual pain.
And yet, and yet. I still want to get old before I die.