As a child I was told that if I worked hard enough I could do anything. That had its downsides; I grew to believe that not achieving perfection in everything meant I was lazy and I therefore began a pattern of destructively hard working. But it also meant that life was within my control. I didn’t blame anyone else when I faced lack of opportunity; nor did I blame others when things went wrong.
The problem, it turns out, is that even by working myself brutally hard, I am unable to have certain things. Those things currently include my health, the career I wanted and was doing well at, the lifestyle I previously had, and the belief that life is fair.
That’s right. I used to believe that life was basically fair. I had sympathy for people who were in a less good place than me, but I did believe that working hard would bring improvements in people’s lot. I also believed I deserved my success because I had worked for it.
I no longer fully believe that.
Yes, putting in effort is required. Yet hour after hour, day after day, I now put in effort and often reap next to no reward. It has brought me a certain humility. It has brought a sense that I am not a better person than the man sleeping on the street because I have worked hard and he, evidently, has not. (I know nothing about how hard he has worked, and what the impediments have been in his way.) It has removed my pride in having achieved as much as I have.
Illness is a great leveller.
I am fortunate to be able to pay for the best treatment for my condition. (Those enormous medical bills are a cause of my required change in lifestyle; but I am nonetheless fortunate to have the choice to pay them.) Having that treatment gives me the chance to continue to move forwards, to build strength and resilience. But after getting on for six years of this top class intensive treatment, I have many days that are close to unbearable, and some that actually are and I have to give up and place myself in other people’s hands in hospital.
I lost the career path I worked for. My personal relationships have suffered enormously. My body is scarred. Five years of my life have disappeared. Day after day I am furious at my incapacity, my inability to be reliable for my employer and those I love, the sheer unpredictability of it all. I hate the fear I have of doing the most simple things. (For a long time I was afraid to enter my office and yet I had to turn up every day nonetheless; thankfully that has now faded, but plenty of other things have not.)
I hate my need for eleven hours sleep a night, and the fact that many nights I lie in bed, consumed with memories, unable to close my eyes because of what rises to greet me. I hate the rigid routine I need to stick to to give myself a chance of a good week. Even more, I hate that I can do absolutely everything right and be unable sometimes to get through the day.
I hate that I am suffering, and there is nothing that anyone can do. There are no pills that I am able to take. There is no treatment I am not already receiving.
I hate that people around me have suffered enormously, and there was nothing anyone could do about that either. They are still suffering.
None of this is peculiar to me. What I describe are features of illness, or of grief, or of other types of loss. These are the great levellers.
We do not talk enough about this. (In my circles at least; maybe you do in yours.)
I’m lucky. I am building a different career, and was able to do that in the same company I was at before. Many people are supporting me to do that. My doctors tell me that eventually life will become more comfortable – and it is already pretty good through half of an average week where two years ago there were no good days. I am making new friends in my new world. The time I had to take off work (unpaid) gave me the chance to learn how important writing is to me.
Most of all, I am lucky not to dependent on the whims of government policy on benefits, on housing, on medical care. There are also people around me who support me; I am not alone.
Maybe it’s a part of growing up – realising the horror of the fact that life just is not fair, that it can be brutal, even in the modern world, that describing this life as a ‘vale of tears’ is for many people simply the ways things are.
Maybe you all already knew this. I didn’t. I know it now.