Not Being-in-the-World

When you have been ill for a long time; I mean really ill and in pain – not being able to go and visit friends in years kind of ill - it is hard when you do finally see one of those elusive friends.

If they are a good friend, even one you only see every 6 months or every year or not for years on end, it is exciting to hear of their news but it is also hard. It is painful. It reminds you that there is a big and wonderful world out there that you are no longer part of.

Today I spoke on the phone with a good friend of many years and she was full of exciting news about all the marvellous things she is doing and they do sound fabulous! It is not that she has not been through very hard times herself or know what it is like to be caged for a while and that she still doesn’t have a lot of hideous things to deal with but, whilst she has a lot of painful things to deal with, she is also in the world. She has fantastic adventures to pursue.  She isn’t trapped in a crummy rented flat for months and years on end unable to go out and enjoy all of the wonderful and exciting things the world has to offer.

This is not a ‘woe is me’ situation, it is just that there is a vast gulf between our lives now when once there was synchrony and fun and the real connection of shared activities.

I sometimes think that if all of my old friends made a list of what they have managed to achieve over the last 16 years that I have been ill and I did the same the gulf would be startling.  

This is what long-term chronic illness does. This is what being largely housebound does. It robs you of that connection to the everyday world of just being able to do 'stuff'. It prevents you being an free agent in the world and making plans that you can follow. Nobody plans to be ill for most of their adult life. Nobody chooses it and only a fool would stay caged if they had the chance of freedom. 

Over the years peoplevanish. Most entirely but a few turn up once in a while and when they do reappear it is like a splash of colour so bright that it is painful to look at.

When you do see them they tell you tales of the world outside illness and you, in return, say what? What is there to say apart from ‘it is hard’, ’I am still ill’, ‘I am trying to sort out my benefit claim’,’ I have done nothing exciting or interesting at all’, ‘my life is just survival’... and over time this, I imagine, begins to be very tedious to people who once found your friendship interesting and enjoyable. Maybe they wonder where you have gone. Maybe they think that if you only tried harder you could be that person again – that time can somehow be reversed or that there is a way for you to move forward that would give you more stimulating topics of conversation. 

For a long time I didn’t really tell my friends how my illness affected me. When I talked to them I talked about their lives and about the world in general and about politics and music and books but not about my actual life and the difficulties of having such a contentious and difficult to explain illness. While I did that, they seemed to stick around. Once I decided that this was not okay and that I had a right to really tell them what it was like, just as they are able to talk about their lives, something shifted. Maybe it is too uncomfortable to hear the truth. That is often true whether people are ill or not. The truth is often painful and difficult.

This is why people with severe and chronic illness that goes on for years or decades without relief tend to, in my experience, stick together. They tell each other the truth and are willing to hear it however hard it is.

I never expected to make a strong new friendship at 39 but that is what happened when I met someone online who happened to live just down the river. Like with my other friends we see each other very rarely – it is even harder to meet up when you are both largely housebound. I can count on one hand the number of times we have met over the last 5 years. The difference is that she ‘gets it’ because she too lives it. We speak on the phone and swap books and films and ideas in the way I used to with my ‘out-in-the-world’ friends. There are a few others who are also afflicted with the dreaded malaise that I talk to – they are also my new friends. 

(Nb. Never tell an ME shrink that – they think talking to other people who understand is bad for your health – under what other condition would that apply?) 

I am lucky that I can do this. Many people are too ill to have any contact with the outside world at all. One USA M.E. clinician said the severe cases are as ill as end stage AIDS and cancer patients but this goes on for years or decades - and ME like other serious illness does, eventually, kill people. I still remember what that was like - to be in a dark room, vomitting,  too weak to turn over my own pillow, my partner having to help me to piss in a bowl in the bedroom. To misquote Bette Davis ‘being severely ill is not for sissies.’ 

For those who want other more cheerful topics of conversation, this week I have:

• ·         Thought up wild and fantastic art projects and fantasised about being well enough to make them  real
• ·         Read a generic crime novel
• ·         Taken more pictures of corners and walls
• ·         Picked this month’s topic for a photography theme on the only online forum I can cope with
• ·         Tried to learn to use Twitter
• ·         Wiped up a lot of cat sick
• ·         Decided that, given the PACE trial already has a Prof. White, that I should name all of those involved after Cluedo characters – see it’s hard not to mention it at all.

Yours truely,

Gregor Samsa