My mum used to tell me that I was born fighting. That this little 6lb 12oz bundle of flesh that was literally blue from the waist down due to a coarctation of the aorta was not going to let anything stop them. I could scream with the best of them, and I was going to make that known. It would take an hour and a half to give me my bottle and approximately fifteen minutes for most of it to come back up. In 1982, not a lot was known about allergies to formula and or breast milk apparently. Nowadays I would have been put on some lactose free alternative.
I’ll never forget the pride in her eyes, every time she saw me accomplish a goal that they said was near impossible. My fifth birthday, for example, Mum spent most of the day in tears of joy that I had reached that day. The day that they gave me a twenty percent chance of reaching. And when I reached my sixth birthday, the birthday they said I’d never reach, and each birthday after that, her eyes would always have this teary moment which she would quickly blink away as we cut the cake, or I opened my presents. When I got onto the year 5 netball team, she was so very proud of me, she took me out for ice cream. When I got my scholarship to the secondary school I wanted to attend, she took me for lunch at my favourite cafe despite her own illness. My father may have been horrible (to say the least) to us both, but she never failed to make me know how much she loved me and how proud she was of me.
Mum instilled in me that my disabilities couldn’t stop me. That they shouldn’t stop me. Sure I might have to make my way round things a little differently at time, but she never allowed me to see myself as different in that regard. She always encouraged me to remember that I could do whatever I put my mind to. When I got into university, I think she didn’t stop crying for a week. Although if you hear my friend Steph talk about it, she cried for every time she talked about where I was, always tears of pride. She gave me the building blocks to keep on fighting, even though at times, I may have forgotten that they were in my possession.
I’m not going to tell you that I haven’t wanted to give up at times. That I haven’t wanted to crawl under a rock and just let the world pass me by. That wouldn’t be fair to you and it wouldn’t be fair to myself either. There are times when I’ve literally just wanted to give up. The extent of that giving up has varied from just wanting to hide under the covers to writing out suicide letters and emails and planning to end it all. The last time I did the latter was in 2014. Sometimes life just gets too much. It feels like the pain and the suffering won’t end and that we’re a burden on our loved ones. I truly get it, but in the past three years, my perspective has switched and I’ve taken claim on my life again.
In just over a month, I will turn 35. Thirty years beyond doctor’s expectations. Thirty years of a life that according to medical professionals I shouldn’t have had. In that time, I’ve achieved a lot more than they ever expected of me, and in some circumstances, even surpassed the ‘normal’ kids. That’s pretty damn impressive if you ask me, and not bad for someone with a litany of physical, mental, neurological, and emotional issues. And all because of the fact that I’ve kept on going. I have accepted these things as part of me, but I don’t let them define me, anymore than my eye colour or my hair colour. Because who I am and what I am is more than the sum of my conditions.
On days like today when my fibromyalgia tender spots are acting up, and my arthritic fingers are painful, I could very well just lay down and hide. Instead, I’m sat up and determined that even if I don’t get very far off this bed, I can do something with my day, like write a blog post, work on my latest novel, and maybe do some creative designs for my redbubble account. If I can’t do all of it, that’s okay. It’s not like I’m in a rush, but it means I keep my mind busy. On the days when sitting up isn’t an option, that’s also okay. I keep my mind occupied in other ways. I’m not about to give in because of the pain.
My body and I have known each other for almost 35 years now. We know what our limits our. We’ve been pacing ourselves since birth, and pushing the boundaries set for us. I’m sure that some people must be driven crazy by the latter of the two, but it’s because of the boundary pushing that I’m able to live a life that has meaning to it. I may not be able to do the things that I used to, but I’m still able to live. I can still smile with my friends, I can still love, I can still enjoy the things I’m passionate about. And do you know what I’ve found? A positive attitude, spending time with those I love, finding the good in the day, and the beauty in the world can make a huge difference to how I perceive what’s going on.
I know that I’m human, I know that there will be days when I stumble and fall, I know that I’ll still have PTSD flashbacks, and that I’ll feel like the world is going to crumble at times. I’m aware that suicidal thoughts may pop up when the going gets really tough, but I won’t give in any more. I have love in my life. I have reminders that I’ve put into place that show me each and every day of how lucky I am to still be here, as well as people who do the same. I’m starting to understand that if I reach out, even when the monster is telling me that people don’t want to be bothered by me, I’ll be surprised by just how loved I am, that I can beat that insidious voice that takes on a tone I’m only too familiar with.
Physical pain is not unusual to me. Mental and emotional pain are companions I’ve learnt to co-exist with. Whilst neither situation is ideal, I’m learning to live in a symbiosis with both. I’m choosing to use them to fuel my creative passions, to allow me to learnt to take the time to rest, and to understand that reaching out to loved ones isn’t a bad thing. I’m also learning that as I wait for the next in a long line of medical appointments, I’m doing it all with minimal pain relief, and I’m succeeding. I’m a hell of a lot stronger than I look. And a lot more determined too.
The ever scribbling nubbin 