Today I am 29 on the 29th! The only time in my life when the age I turn on my birthday is the same number as the date of the month on which my birthday falls. Numerically satisfying, if a tad arbitrary. Anyway, these are my ten greatest wishes on this birthday. I hope a genie in a lamp is listening*…
My first wish is an obvious one: I wish to be completely cured so that I am 100% healthy, fit and strong. All my subsequent wishes are dependent on this wish coming true.
My second wish is to be in an outdoor pool on a warm day with my family and/or friends. We would retrieve all the fun stuff from the cage beside the swimming pool, like we used to do at the end of school swimming lessons when we were allowed to mess around and have fun. We would get out all the large mat floats, log floats (the ones where two people stand at either end and spin it round and round under their feet until someone falls off), the long lightweight bendy foam cylinders that you can swordfight with, inflatable balls and rings, weighted “bricks” and plastic hoops for underwater obstacle courses. There would be a slide going into the pool too. I can’t think of anything that would make me happier than having fun in an outdoor pool on a balmy day. Paradise.
My third wish is for a kiss. Due to becoming so severely ill at a relatively young age, I have never had a kiss. I’m not greedy; just one kiss will do. If I’m only going to have one kiss in my entire life though, I don’t think it would be too shallow to ask if I could have it with a devilishly handsome man 😉 😛
My fourth wish is to go on a swing. I miss swings. I don’t know if anyone makes adventure playgrounds for adults but they should. Why should children get all the fun? So yes, I want a go on some swings. That would give me a lot of pleasure and delight.
My fifth wish is to go to a restaurant. I’ve never been to a proper restaurant before so this would be an amazing treat. I’d love to eat something more delicious than anything I’ve ever tasted in my life.
My sixth wish is to be at the beach on a summer’s day with my parents and brothers. Paddling in the sea, playing catch, buying an ice-cream/lolly and us digging a huge sandcastle with moats and waterways and then, as it gradually gets destroyed by the tide coming in, frantically piling more sand upon the ultimately doomed castle, even as huge chunks of sand slop into the water, trying to keep it alive as long as possible until it is completely swamped by the incoming tide.
My seventh wish is to go rollerblading with friends, these 101 songs playing at the roller rink as we whizz around. There’s nothing quite like rollerblading over a smooth surface.
My eighth wish is to create videos or vlogs where I would discuss TV shows/books/films/poems and all other things that I’m interested in or passionate about. I’d like to do interviews with people too and create fun segments. I think I would love that and get a lot of joy from it.
My ninth wish is to be in a water fight with friends on a hot, sunny day. Glorious chaos. Lots of running around and laughter. With everyone ending up completely drenched.
My tenth wish is to be cosily huddled in a sitting-room on a winter’s evening, fire crackling, with my parents and brothers, playing the card games that we like to play, as well as charades and Consequences. Just being together, the five of us, all healthy and happy and having fun, enjoying each other’s company.
If you were real, I’d probably only keep my first wish the same. The rest of my wishes would be more practical and for the people I love/the rest of the world. But since you’re not real, I can just make selfish wishes in this blog post.
Quick health update: Well, I’m still alive. Just. This year has been rough (major understatement) but I’m doing everything I can to stay alive. Amongst other things, the breathing and swallowing situation has become dire. Then there’s my heart, which is always life-threatening and horrific. As usual, we’ve been battling all year to get treatment. There’s an operation (not related to the M.E.) that I desperately need but the surgeon is reluctant because my heart is too unstable and my condition too fragile for me to be moved from my bed, let alone survive travelling to a hospital in an ambulance, being in the hospital environment and undergoing surgery. Depending on some rather important test results that are due back ~mid-May, they might decide to perform the operation anyway if it’s even more dangerous for me NOT to have the operation than to have it. I really really want this operation to happen, even though it would be risky. For over ten years I’ve been thinking that I would get better “soon” or “any moment now”; I may have been deluding myself with optimism and false hope but it has kept me going. However, I’ve had to make some big decisions this year, which have forced me to be a bit more realistic (realism is not my forte) and to start thinking more long-term. I think this is why the grief (over all that I have lost and over all the unbearable suffering that I have to endure every moment of every day) has been hitting me pretty hard; I’m too ill to cry or communicate my feelings so the grief gets bottled up inside but that can’t be helped given my circumstances. Plus there’s the fear and uncertainty about the future, about what is going to become of me, how all this is going to end. All these feelings are completely natural given the situation that I’m in. It’s best to focus on surviving moment-to-moment than to dwell on the future. If I have the operation, in the short-term after the surgery, I might end up on life-support and tube-fed; it may take years to get back even to where I am now but it’ll be life-saving in the long-run. Eek.
[NB I’m only able to sometimes jab out one or two sentences per day with my thumb on the screen of this iPhone, so this blog post was written over a long period of time.]
Severe M.E. and me – my story: https://www.jkrowbory.co.uk/severe-me-and-me-my-story/
My Favourite Things: https://www.jkrowbory.co.uk/2013/11/my-favourite-things/
When it hasn’t been your day, your week, your month or even your 8 years:
My buzzfeed listicles: http://www.buzzfeed.com/stroopwaffle