Trapped

What it's like to be one of the losers

Over the last few weeks, I have watched the debate over changing the UK’s law on assisted dying with sardonic interest. On the face of it the debate should have nothing to do with me. I, after all, am not terminally ill, and what is being debated is whether people with six months or less to live should be able to commit suicide with medical help. I thus simply don’t meet the criteria. However, those who oppose a change in the law often claim that if the law is loosened, we will be on a slippery slope down to a place where people like me(the disabled) are not only offered assisted suicide, but pressured by wider society into taking that option. And as this would be bad, the law should stay as it is. On the other side, those who favour changing the law vigorously deny (at least in public) that any such slippery slope will be encountered – and thus they implicitly or explicitly agree that assisted suicide should only be for those who, to put it bluntly, are going to die soon anyway. Hence, again, it is not for me.

The effect of which is to compound my overwhelming sense that I am trapped in a living nightmare from which I cannot escape. Allow me to explain.

On paper, I have done everything I’m supposed to do to try and come to terms with my situation, to learn how to live with it. I no longer reside in a medical institution, but have a private apartment. I was lucky enough to get maximum social care funding enabling me to benefit from good, reliable care staff, from a good agency. I resumed doing academic research early in the summer, and for the past month have been back teaching seminars twice a week in the classroom. Friends have stayed in touch, and I get visits at evenings and weekends. As well as attempting disability sailing during the summer, I also spent a week at a specialised rehab centre in Leicestershire, and went on a wheelchair skills and independence course run by a spinal charity in Leeds. I work with a private physio, and at least twice a week force myself to do strengthening exercises despite this being intrinsically unpleasant. I have made progress in terms of being able to transfer independently from wheelchair to bed, and have avoided any serious health complications for several months now (although the bastard spasms have returned). Last month, I even went to a friend’s wedding in Brighton.

In other words, I’m doing about as well as it is possible to imagine a tetraplegic could be doing at this stage. The result? I still hate virtually every waking minute, and not a day goes by when I don’t wish I had just died on the mountain.

Deprived of the outdoors, of exercise, of training, of travel, of long-term projects and the ability to go and see friends (rather than having to rely on them coming to me) or anything remotely spontaneous, my life feels utterly empty. I am the loneliest I have ever been. And yet never alone, because all day, every day, there is a professional carer nearby who I rely on should I need anything that requires more dexterity than a touchscreen. A carer with whom I have nothing in common, nothing to say to, yet who I am entirely dependent on, like the baby I’ve become. Evenings no longer exist as a possibility of sociable activity for me, because I have to be in my apartment at 9pm so that the double up team can put me to bed. Weekends are constrained to whichever pitiful inner city location London public transport allows me laboriously to reach. As a result, I rarely bother to go anywhere; too much hassle just to look at things from the same fucking chair that I’m in all day anyway.

And that’s without even getting into the daily indignities of not being able to wash myself, clothe myself, shit by myself, or clean my own genitals. I’m tortured by visual memories of the places I loved to climb in. As I lie in bed at night, I replay the relationships I had with past girlfriends, and wonder what might have been, now that I know I’ve lost intimacy forever. On the days I teach, I spend much of the time fighting the daze of low blood pressure and pushing down the thought that I used to be a lot better at this, trying to ignore the wider fact that my career will now never be what it once promised.

More generally, I now have a pretty good idea of what life from here on out looks like. And my verdict is that I just don’t want it. I have lost too much. A truly excellent life, in which I was happy, has been replaced with a daily drudgery of misery, humiliation, boredom, loneliness, frustration, and a stupefying dependence that I simply cannot abide. Living this way is incompatible with being who I am. So, it is time for who I am to stop.

Except that it cannot stop, because I am trapped. When medical professionals decided that my ruined body should live, whether I might have wanted it to or not, they also determined that any future choice about whether to continue would forever be taken away from me. My preference right now would be to take a knife and dig around into my left thigh until I hit the femoral artery. With that ruptured, it should only take about five minutes to bleed out. Given that I have no sensation, it wouldn’t even hurt. However, I lack the hand function to grip a knife required to do the job. An alternative might be to wheel myself down to the canal, or one of the overground stations where I can reach the platform without needing to get through a ticket barrier, and then let basic physics take effect. But that is impossible because I can’t even get out of my own front door without a carer, and I can hardly ask them to push me over a suitable edge. Whereas a normal bodied (or even just less disabled) person could take matters into their own hands and decide that enough is enough, I cannot. I need the help of someone else. And the law is pretty clear that nobody is allowed to help me. Hence, trapped.

The potential loophole here is of course to go abroad, to a jurisdiction where medically assisted suicide is legal. It is a loophole, because over the last decade there has become a default understanding that anybody who assists me on compassionate grounds would not be likely to face prosecution (although the risk has not been entirely removed). And so, I’m working on it. The application to Dignitas is active. The trouble is, because I have a history of depression, in order for Swiss authorities to sign off on me going ahead, I need official endorsement from a qualified psychiatrist confirming that I have the mental capacity to make this kind of decision. And this is proving tricky. Partly because medical professionals are under a stricter condition of legal liability than friends or family, and are especially (and justifiably) nervous about writing me a letter that could be used against them in criminal proceedings. But it’s also because of what we might call the depression Catch-22. That if you’re not depressed, then surely you don’t want to die, therefore you don’t need the letter. But if you are depressed, then you must lack the clear cognitive judgement required to make a decision about whether to die… therefore you can’t have the letter! Either way, no dice.

It's worth dwelling on this a little further. I have encountered a widespread assumption that if one is depressed, then one must by definition be thinking irrationally. Hence if depressed and wanting to commit suicide, it follows that this must be an irrational desire – and therefore should be resisted by all involved. And to be sure, this isn’t always wrong. There have been times in my own life where I’ve had depression that very much fits this characterisation; when I did indeed need help to recalibrate my perspective on the world, coming to see that a desire to end it was an irrational response to the facts. The problem is, not all depression is like that. Sometimes, depression is a rational response to the facts. Like, for example, if the facts are that you’ve had your life destroyed, lost everything you loved, and find each day to be another instalment of monotonous, lonely, misery. There is a crucial difference between wanting to die because you’re depressed, and being depressed because you want to die. Having now spent over 16 months in the latter condition, and seeing no realistic prospective of things improving, I don’t think I’m being irrational in the slightest in just wanting it to stop.

Of course, it doesn’t necessarily follow that just because I (rationally) want to stop, that therefore the law ought to be tailored to enable me to make that happen. The most powerful objections against legalisation of assisted dying come from people like Kathleen Stock. She has voiced serious concerns that such a change in the law would lead to a widespread cheapening of the value of human life, and when interacting with the inevitable inadequacy of institutionalised bureaucracies, this will have severe social ramifications that would on balance cause unacceptable harm to the wider population. And she may well be right about this. Personally, I tend to think it wouldn’t work out like that, but then I’m hardly a dispassionate and disinterested observer making a careful evidence-based judgement – so my guess here is worth very little. Nonetheless, what I would want to say is that if she is right, then can we all at least please just acknowledge that complex social policies have winners and losers – and that in cases like this, the losers will be forced to suffer (sometimes severely). Perhaps, on balance, such suffering is the right thing for society to oversee; but that doesn’t stop it being suffering, all the same.

It may well be the case that even people with terminal illnesses in agonising pain should not be entitled to medically assisted suicide (let alone people like me, who are “just” depressed about how shit their lives have become), precisely in order to safeguard those who would otherwise be made unacceptably vulnerable. It may well be right that they (I) must lose, so that others can win. It is often an inherent, unavoidable fact about politics that when making social decisions some can only benefit at the cost of others – and this is a case in point. All I ask, however, is that if those who want help to die ahead of time are told that they cannot have it, then society at least looks them in the eye and admits that they are the political losers, being sacrificed accordingly. Again, that might well be the right thing to do; that some must lose so that others can win. But let’s at least be honest about it. Tragedy may be unavoidable here. But being untruthful is not.