Thursday, 27 June 2013

Dear Relapse: a love letter

This post has been the culmination of a few little seeds sown over the last few weeks...
A tweet at the end of May from the extraordinary Dr Kate Granger (@GrangerKate) made me start to think about what is positive about our health situations:
"This week has been properly amazing. And it was all made possible by having cancer. There is definitely a #silverlining to all this..."

This post is also inspired by a few letters I have read recently, from a doctor to a chronically ill patient, from a chronically ill patient to a doctor, and by far the most powerful, a video produced by the wonderfully talented and creative people from Flack in Cambridge, the audio of which we used in our Quality and Recover workshop recently.
It's not often you have to write a letter to something that is so close to you, but I feel that it is a great chance to explore the relationship I have with my relapses.
For references, my relapses are triggered by travelling and sudden neck movements, and consist of loosing movement in my legs (and left arm). It is frequently accompanied by headaches, blurry vision and crippling fatigue for four or five days.

Dear Relapse,

I know you so well, and I know that you know me even better - catching me when you know it's going to hurt the most and making me miss the best events. But it wonder if you know me as a person, as a friend, sister, daughter, colleague and professional, in the precious days when you are not around? 

I hate you and I love you.

I hate that you mean I now 'accessorise' with a neck brace, walking stick, travel bands and orthotics even you are not around - accessories that are not seen on the catwalk. I hate the way you have made me the (not so) proud owner of a Zimmer frame at the age of 23 - middle aged before my time in so many ways. I hate the way you create situations that mean my parents have to cancel their plans to look after me. I hate the way you make them upset. I hate the way you are responsible for the look of despair on my fathers face when he asks on the morning of a new relapse and I reply "my legs aren't working" or the sounds of pain and disappointment in his voice when he rings up from work at lunch times to see how I am and I have no improvements to report. I hate the way you make my octogenraian grandmother feel guilty for having a better bill of health than her granddaughter a quarter of her age. 

But you have given me things which I love you for. When I am finally shaking you off each time, I am reminded quite what a luxury walking is. I have a day or so when every step I take feels like a total luxury. I am reminded once or twice a month just how lucky I am to be able to walk some of the time. I am reminded not to take anything for granted, in a very powerful and real way. That is such an important lesson to learn, and I am privileged to be reminded of it so frequently. 
I love that you have bought me and my grandmother closer, a relationship I know I didn't treasure enough when I was younger. You have taught me that nothing lasts for ever, and so I now treasure every moment I get with my grandmothers and strive to create the best memories for both of us, as one day that's all we will have. I love that you are not terminal or degenerative but have opened my eyes to the fragility and preciousness of human life as well as our mortality. That in itself is a precious gift. 
I love that through you I have found a new career which I am passionate about, and a cause that I believe in. Through university, I was interested in Medicine, but didn't have that burning passion like some of my friends had for their subjects. I was always a little jealous that they had their passion that they read up on and talked about so passionately. I just assumed I would bumble along in life, being a little bit interested in a few things, but never really finding my reason d'ĂȘtre. But through you, I have found that. As I meet more people through work and in life in general, I realise how lucky I am to have something I believe in and feel passionately about, and how I am extraordinarily lucky that I can find some meaningful employment that involves that. 
I love that you give me an excuse every few weeks to watch trashy TV. 
Strangely, I love that you are now familiar - the same symptoms following the predictable triggers, the autopilot of home life when you are around - because it is strangely comforting to know that I am more in control of you that I was that first time when panic ensued. I love that I am not letting you completely take over. I know that one day I will look back fondly of the times you were were around and Mum and Dad and I all ate supper on my bed like a picnic. Believe it or not, you have helped me create a few wonderful memories. 

I hate you but I love some of the memories, insights and passions that you have given me. I can't remember life with out you.

Love (and every other emotion),

Anya 

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