It’s my birthday on Thursday. I am turning 26. I am a really big fan of birthdays, and love making other people’s birthdays special, but when it comes to mine, I have mixed feelings. Chronically ill birthday’s are a little different. Don’t get me wrong, I’m looking forward to having cake, and having something to celebrate, but at the same time, my birthday serves as a yearly reminder that I am still sick.
My chronically ill body is ‘timey wimey’ (as Dr Who says!) and doesn’t fit into the normal conventions of time. I am almost 26 and yet my body (last time they tested it, several years ago) functions at the level of a 69-year-old. So, while I want to be living a wild lifestyle, acting irresponsibly, and dancing all night… and then straight off to work a full day shift, I can’t. While I dream of living my twenties in the wildest, freest way possible, I can’t. Instead, I have to plan my energy around my weekly medical appointments, taking pills, and getting enough rest. And birthdays feel like a ticking clock, pulling me further away from the crazy, free existence I dreamt of in my twenties – and towards the granny lifestyle that my 69-year-old body actually demands.
I think the best comparison I can make is this: this year, with lockdown, and things being shut for most of the year, a lot of people feel like their lives have just been put on hold; they feel like they have lost a year. Maybe it was their last year at uni, or their gap year, or maybe it was just a normal year and they lost out on a couple of holidays. Whatever it is, it feels as if time has stopped, except time has not stopped; we are still getting older, life is still happening, just not in the way we expected it. In some ways, if you remove all the symptoms and trauma of being sick, that is very similar to my experience of being chronically ill. I have often felt that my life is on hold until I can get better. But the reality is that I may never recover, so I cannot afford to wait. I have to try to live my best life, now.
Of course I don’t feel like this all the time. A lot of the time I really enjoy my life, and I have come to accept that I am unlikely ever to lead the carefree existence I want to. For now, my reckless choices will have to include such things as going to the supermarket without my wheelchair!
But birthdays are a moment where we are forced to stop and reflect on our age, and where we are in life. And honestly, I never thought that, by 26, I would be spending large portions of my life in bed, unable to move. I never thought that parties would be a thing of the past, and I never thought I would still be financially dependent on my family. Nor did I expect to be highly sensitive to tea, coffee, alcohol and even (shhh don’t tell!) chocolate. Birthdays are a time to celebrate your life, but when illness has taken so much from you, there is also a lot of loss and grief to process.
I’ve definitely written about this before, but it is hard not to compare myself to other people of my age. By 26, I expected to have my life a lot more in order than it is. And when I look around me, most of the people I know of a similar age, do seem to have a little more stability. They have jobs they enjoy, they have incomes, and they have a clear direction to their lives. Albeit, coronavirus has taken its toll on many people’s plans, in recent months, in comparison with most of my contemporaries, I feel I am still very much trying to understand the basics. I mean I only just realised I’m gay! And I know much of this is because I have spent so much time being ill, but it is still hard to process.
So back to my birthday. As I get older, I know that there are a lot of things that healthy Kat wanted by now but is having to say goodbye to and grieve for. That said, there are also a lot of things I have learnt, gained and understood by becoming sick. And the more used to being sick I become, the more I realise that my life was never actually put on hold; it just turned down an unexpected path: one that I now have to deal with, and learn to see as living.
And when I look back over my twenties to date, I can also see that I really have lived. I have had some amazing birthdays: a surprise birthday BBQ in Malaysia; a champagne brunch in a squatted bowling alley; even a birthday flash-mob at uni. I have also had some amazing experiences, lived in a few different countries and made some pretty reckless choices – like not taking my flight home because I had decided I wanted to stay away!
Despite its negatives, spending so much time sick in bed, seeing doctor after doctor, taking meds, and having countless migraines is ‘living’ too – and has maybe been even more valuable in that it has made me the empathetic, entertaining, and ever so slightly (?) weird person that I am today. And it is part of me that I am learning to see does not make me boring and does not mean that part of my life is being wasted.
So, this year, I will try not to dwell on how much sicker I am than this time last year, and instead I will try to be proud of the things I have achieved since my last birthday: realised my sexuality, learned to feel some pride in my disability, chosen to use a wheelchair, started this blog, etc. And, most likely, I will eat a lot of cake, read a good book, and skype some friends – because at the end of the day I still love an excuse to treat myself and do nice things!
