I Was Like a Man Falling off a Ferry – I had MS

6 mn read

Sometimes I think Job has nothing on me. All he had to contend with was a questioning of his faith in god in the face of all the evidence to the contrary. I have been faced with much more existential dilemmas than that.

I took early retirement about seven years ago, at the age of 55, due to various ailments that I couldn’t put my finger on. Ironically, it was my finger that first clued me into what was wrong. Just the very tip of my right index finger was sore and plagued by a painful numbness, if that doesn’t sound like too much of a contradiction. I was beginning to find it difficult to type and my work as a lecturer and researcher was being affected as a result. The pain gradually extended further down my finger and then into my other hand followed by my toes and my feet and it was becoming clear that something was seriously amiss.

The next thing was the tests and the MRI scans, until eventually the GP sat me down and handed me the letter he had received from the hospital and said ‘maybe you had better read this.’

And there it was: a diagnosis of demyelination (myelin is the fatty covering on your nerves) and the strong possibility that it was Multiple Sclerosis. Bit of a hammer blow. I struggled on at work, of course, that’s what we are meant to do, isn’t it? We pretend that everything will be alright. But of course it wasn’t.

I found it more and more difficult to get upstairs and the fatigue was so bad that I made a little bed under my desk. Often students would knock and find me rubbing my eyes and coming back to life to answer their questions about essays and coursework. Within a few months the brilliant HR department at Sheffield was offering me early retirement on a full pension and even though I still did not feel as though I was disabled, I took it. As with all retirement, it is necessary to take a good run up at it and think your way into a new purpose in life. But rather than having several years to get used to the idea, I was pitched into it like a man falling off a ferry.

I had joined the army at 16 with no school qualifications, had left at 21 and become a lorry driver, before studying German as a mature student. If the army gave me nothing else then the ability to speak German and drive lorries turned out to be worth their weight in Bitcoin. After that I got a job as a lecturer in post-45 German history and it was all downhill from there. In that sense my entire adult life was consumed with either physical or intellectual labour and it has proven really difficult to break that habit.

I have largely got there now – as anyone who knows me will be able to tell you – but still I feel as though I should be writing books, if not rushing up and down the highways of Britain delivering concrete or tarmac. The initial anxiety dreams of having lost some important piece of military kit or misplacing my lorry have largely faded now and I sleep a largely untroubled sleep. My ex-wife and I used to talk about how we were both so brilliant that somebody should pay us just to be ourselves. Well, now they are. It’s called a pension. The problem is that I am not myself anymore.

It’s amazing how quickly I dropped any pretence at academic work and when I now read the research I did, I feel as though it was a different person writing it. That’s because it was, and I don’t really understand most of what I wrote or why I wrote it. Not because of any cognitive decline on my part but simply because I was so much older then and I’m younger than that now.

Since that first MS diagnosis, there have been plenty of others as well, so that it becomes difficult to disentangle all the symptoms. I have also had sepsis in my arm from a cat bite, which needed quite a nasty operation (I have pictures if you need proof). When they investigated why I was getting such serious infections they found that my blood was basically empty. It had hardly any of the things in it that it needs to do its job. Pancytopenic, they called it. When they investigated the reasons for that they found in turn that I had a very rare form of leukaemia; hairy cell leukaemia. No, I hadn’t heard of it either.

The doctor said to me ‘Oh well if you are going to have cancer then this is the type that you want. It’s not even proper leukaemia.’ I think that was meant to be reassuring. It kind of was, in a way. Anyway, a series of injections and infusions (the first of which sent me into a spiral of reaction in which I thought I was definitely goner) and a couple of weeks lying down and all was fixed. Full remission. If it comes back in another 15 years – which is possible – they will simply give me the injections and infusions again. Mind you, by then they will have probably invented something else and all will be well. I’m hoping that by then they will have also found a cure for MS.

Because that’s just what one does, isn’t it? It’s the principle of hope. One hangs on for dear life, squeezing every drop you can out of it, trying to have experiences and to fill up the empty hours you have suddenly been gifted. The empty hours are there because of illnesses. But had I not had these things and had I struggled on for a few more years until I was 67 (another 5 years of work – inconceivable – and I do sometimes wake in a cold sweat wondering whether they will make me go back to work if a cure for MS is found) then I would still be doing better than my father, (who died at 62 – the same age as me now – which seems to have some deep significance that I can’t quite explain) or my uncle – his brother – who also died in his 60s. My younger cousin has just died of the dreaded c-word as well and I have reached that age we are all familiar with when all around me people are beginning to drop off the perch. Although at the same time, I feel freer and more in control now than I ever have in my life and I have also become Zen-like in my appreciation of what is around me – to the extent that I can do nothing all day and think it good – there is still a big hole where the whole should be.

I taught German philosophy as well as history at university and I spend a lot of time – probably far too much time – looking out of the window and thinking about Heidegger and Hegel and Being and Nothingness. Although that is all great fun, and something to bore my grandchildren with, it doesn’t butter many parsnips. But life is funny like that. Camus recognised the absurd nature of our existence and the randomness of the things that befall us and I find it difficult to think of it in terms other than that. I even invented a term for it during some extended discussions at a particularly drunken conference; namely, the metaphysics of contingency.

In other words, stuff happens and then we make grand stories up about why it had to happen, how it is all part of some great plan for us both as individuals and as a species. But there is no plan, of course. Heidegger adapted Descartes’ famous cogito ergo sum (I think therefore I am) into sum moribundus (I die therefore I am) to explain our purpose and, as the old army song has it, we’re here because we’re here because we’re here because we’re here, and as retirement shows us, our existence is completely pointless. It’s what I call an unnecessary necessity.

Everything that has happened to me over these years has been necessary to make the person that I am now, but my existence was not necessary per se. If I had not been born the world would have carried on – indeed, my poor, mismatched shotgun parents would have gone their separate ways as they should have done – and the universe would have carried on expanding without even a blink of the eye.

I don’t know what the advantages of age actually are other than a recognition that nothing really matters and that it becomes much easier to accept the banality of life than when one was young and everything mattered so very much. ‘Life is what it is’, as they say today, but you only pass this way once so it is important to make the most of it etc.

The worst thing would be to lie on your deathbed feeling and knowing that it was all for nothing. Despite all the things that have befallen me I am neither desperate or unhappy. Sometimes life feels like the trials of Job crossed with the labours of Sisyphus and Hercules thrown in for good measure. But it has been a hell of a ride  and it’s not over yet.

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