Dear ME,
Its been more or less eight years that I’ve spent with you and honestly I still don’t know how I feel about you. At all.
I want to say you’ve taken my life away, made me live a half life, and doomed me to rot away in bed. But that’s really only partially true. Because there are lots of things you’ve given me no choice but to learn, to reconnect with and to figure out. And I’m not grateful to you for that. Absolutely not, but you have made me who I am, so can I still hate you for that? Yes, I can and I do. Hmmm… see… that’s mixed feelings for you!
What if? There are a lot of what ifs when you become ill. Actually, scratch that! There is predominantly one: very simply, “what if I had never got sick? What would my life look like now?” And, obviously, that’s a really hard question to answer. My answer changes each day.
Some days I feel sure that, by now, I would be a successful athlete, or vlogger, or journalist, or really anything. Or I would be travelling the world like the travelling bum I always dreamed of being. Maybe even a travel blogger… that was a dream for a while! I could work consistently and hard for things if I was healthy, and then I could do anything I put my mind to.
But, realistically, I think there is a high chance I would still be living in Amsterdam and, having done a Master’s degree to delay the inevitably difficult decision about what I wanted to do with my life, I would probably be just as confused about the future as I actually am. The biggest difference would be that I could party a good deal more, go running when I was annoyed and upset, and spend less time being sick and hanging out with doctors, physios and osteopaths (don’t get me wrong, my osteo and I always have a good natter!). But I suspect I would still be a little lost and confused, because who really knows what they want to do at my age (yes I am conveniently ignoring all those people who do know!). So maybe my life isn’t so very different.
And ME has forced me to learn a whole lot, and reconnect with bits of me that were buried under the busy, hyper productive, highly focused, healthy-ish Kat. For instance, reading. As a child I read all the time. But as I got older, I started making less and less time to read anything other than my academic texts. It wasn’t fast paced enough. But now that I can’t walk to the supermarket without it being too far, reading is something I’ve been able to make more time for. And it’s much the same story with writing. My life has slowed down, and as it has, I’ve been able to embrace a part of me that was lost in the humdrum of non-disabled life.
ME has also forced me to stop defining myself through my achievements and forced me to learn to deal with grief. It’s taught me an empathy for my fellow disabled people. I’ve learnt how to live in the now, how to create boundaries, and I’m even beginning to learn the difficult art of saying no – even when I really want to say yes. Everything about the person I am now, and how I interact with other people, comes out of my experience of becoming disabled, because it’s formed the last seven years of my life. So to change that, who would I be? A completely different person.
But this all makes it sound like I’m grateful for you ME. But that’s because I am well enough to write this today, so I can look on the bright side. Which, by the way, is something else I’ve become very good at since ME – it’s what you’ve read so far.
But I am not grateful. I hate you ME!
I hate what you’ve taken away from me. I’m no longer the bubbly, bouncy, energetic person I used to be. I’m not even sure when the last time I jumped was. Spontaneity… long lost. Running to deal with emotions, working out because it’s fun, trying exciting new sports, dancing, earning money, cooking, showering, working hard for goals, hiking, studying. Gone. Taken away by ME. So, yes, I hate you.
And seven years on from the time when my life changed so drastically, I am still not used to the exhaustion, the pain, the fear of my own body, the slow clouding of my brain and the loss of my memory. I look at old photos and my heart breaks for myself and who I could’ve been. Because it never stops hurting that chronic illness limits me so much and that frankly I do have to suffer. And now I feel uncomfortable even typing this because I don’t want to come across as self-pitying. But I am sad about it sometimes, and it does suck. And I don’t want to always feel like I need to sugar coat it, to myself, or to others.
It gets complicated because there is no me without ME. How can I hate you when you are a part of me? Just my body so vehemently trying to stop me being sick, and in the process making me really sick. Because I don’t hate my body, but I do, and I don’t. It’s all so very confusing. And that’s because there is nothing simple about bodies being sick and about navigating sudden changes in your body. I will always feel conflicted and confused about it, so it’s about learning to live with that internal conflict.
I guess what I am saying is, whilst I appreciate that you’ve forced me to learn some hard lessons, I didn’t really want to learn them, even if they might have made me a nicer person. Not that I’m even sure they’ve done that. But anyway, our relationship has gone on quite long enough. I won’t ever forget you, but if you could pack up your things, disentangle yourself from my body and get out now, that’s something I’d definitely appreciate!
I hope to never see you again,
Love Kat
The format of this blog post is shamelessly based on a book compiled by Pippa Stacey (@LifeofPippa) called Dear Chronic Illness where several people with chronic illnesses wrote letters to their illnesses. It is a great book and it is really interesting to see how other people relate to their illness.
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