Friday, 25 January 2013

Half a life?

Musings about the half of my life since I became ill and disabled.

At the end of this week I will turn 34.
Coincidentally it is exactly 17 years to the day that I went into hospital with what was thought to be a "minor head injury" following an accident during a handball match. We now know that it was in fact either the trigger of my lupus or my first real nasty lupus flare, although, because it "pretended" to be MS it baffled doctors for quite a while and I didn't get diagnosed until 4 years later.

Whichever it was it marked the start of my illness and subsequent disability, a completely life changing event. I went from an active sport loving teenager just about to finish school to someone stuck alone at home hardly able to sit up.

A half life biography

Eventually as the illness fluctuated and the doctors did get a grip on things matters improved. I was able to go back to school and get my A levels. I went to university to do a chemistry degree. Unfortunately the illness  worsened dramatically at the end of my first year and I got kicked off the course for "health and safety" reasons. My doctors advised me to abandon university and return home. Knowing that if I did I would probably never leave again, I refused and instead started a maths course from scratch. This was a really good decision as I turned out to be talented and maths is something you can do from your bed!

The next few years were very hard. My illness and disabilities were increasing. I had to give up every single hobby and sport I used to do, even those I had relearned to do from a wheelchair, like archery, and the new hobbies I had started like playing the clarinet and saxophone. I needed care, deteriorated from walking stick to wheelchair, was often so ill I was in hospital and even when not, could rarely attend lectures. Despite all this I finished my degree, graduated top of my year and got a golden hello award with my funded PhD place.

My PhD years were really fun and are among my happiest memories despite being highly difficult physically with many new symptoms developing, such as epilepsy and a rapid deterioration of my muscle condition. I made some very good friends I think I will keep for life. One great memory is trundling down the aisle in my electric wheelchair as bridesmaid at my best friend's wedding! I was terrified I would roll over her veil!

My PhD was also successful. I published a very good paper and on the back of that obtained an all too rare EPSRC funded postdoctoral research fellowship at the end of my PhD. My illness was getting worse and worse so I went 75% part time so that I could manage. I "officially" worked for a further 5 years. However I was off sick for most of the last 2 and eventually went on to long term sick benefits. I held out until I sent off the last paper I was working on for publication. At this stage though my memory and concentration were so shot that often I didn't recognise my own work from one day to the next or remember conversations I'd had with colleagues. When you're trying do do international research, this is a slight issue! I'd also had a couple of serious health scares.

Despite my sadness at having to give up work, I'm very proud of the work I did. We published some excellent papers in our field and as a result the group in which I worked ballooned from just two doctors and two PhD students when I started my PhD to one which now comprises 10 permanent members, 2 research fellows and 7 PhD students.

After giving up work I kept busy looking after my little god daughter and doing various enjoyable hobbies before eventually getting involved in disability activism. This became very successful when I co-authored the Spartacus Report. This and other projects with We Are Sparacus, in particular "Past Caring", took a lot of my time last year before I eventually had to call it a day as my illness had continued to progress and I could no longer manage.

I'm now at a slight crossroads. I'm never bored as I still have many hobbies but am not sure of any long term goal and am unused not having one.

Half a life?

So I have now officially been ill for half my life and my entire adult life. When I first got sick I used to think of my life in two parts: pre and post illness. I felt I only lived properly for the first half. I wanted to get better so I could start "living" again. I've realised that I don't do that any more. I'm not sure when this stopped, although I think it was quite some time ago. I find it is no longer possible to try to imagine my life "if I hadn't got sick".

The illness made me come back to the UK from France where I was finishing school. It made me switch to mathematics in which I had a successful (albeit short) international academic career.  It meant I took a strong active role in some disability activism.  It did make me give up things I loved like sport, but it also meant I tried other things like archery, learning the clarinet and the saxophone and playing in a concert band. In time as the illness continued to progress I also had to give those up too, but those are experiences I might otherwise never had had.  On a personal level it has shaped the person I am. I have some wonderful friends and am godmother to a beautiful 4 year old. These would not be part of my life otherwise. There can be no going back.

That said I do still wish I wasn't ill right now. I don't mind the purely "disability" issues quite so much as there are usually ways round them. Getting round the illness is far harder. Being "healthy and disabled" and being "sick and disabled" are two extremely different things.
When I was less ill and closer to the former, there were still ways of working around my illness and having a job and an active social life outside my home. But at this stage of the illness I can see no way round it and my life has become far more limited in the past 2 years.

But all in all I am usually content and often happy. I have some good friends and supportive family. I am always busy even if I cannot move from the daybed in my lounge 95% of the time. I am always bemused when I hear people bemoan that they are bored!

I have had to radically change my activities and hobbies and my life today would be unrecognisable to that of the young 17 year old who was hurt 17 years ago. She would most probably be horrified. In fact if I remember correctly, before the accident she once blithely said that if she couldn't do sport she would want to die! But then she hasn't had the benefit of 17 years of living and adapting and inexplicably finding that life is incredibly enjoyable under circumstances that most people would outwardly judge are not. Which, incidentally, is why no one should EVER judge someone else's life.

Half a lifetime of being ill? Yes. Half a life? No. Not only have I done a lot while being ill but I have enjoyed life while I have done it. It has been one heck of a rollercoaster ride and I am willing to bet it will continue to be.
Right now I do feel at a bit of a crossroads and am still adapting to having stopped work. I feel I want to find some sort of long term goal and am very unsure of what I can do. But hey! So far things have had a habit of working out in the end. Bring it on. I'm not done yet.

1 comment:

  1. I think it is pretty normal to feel a little directionless when you stop working, I know I did. When I stopped working I spent most of my energy trying to find out what was wrong with me and then campaigning for better awareness and research for endometriosis sufferers. Now, 10 years on, I have found my hobbies have given me a direction. I am a crafter. I have started designing and spending time writing knitting patterns, getting them tested, proof reading and editing them, doing photography and layout design before launching them on the Internet for sale and doing publicity. I do it all on my own schedule. I am answerable to no one. I make pennies on my "work". But that is how I look at it and so do my family and friends. I work hard at it, when I have the energy. I think finding something that you enjoy and challenges you can give you a direction, even when you don't get paid for it, be it becoming a poker champion or a dog trainer. I'm sure you will find the thing that drives you and brings you reward.