My Incomplete Story

My story starts the day I was born; I was born at 1:13 AM in the middle of July, and I wasn’t breathing. It took four minutes from when I entered the world for me to take my first breath, and in that time, a scar formed on my brain due to the lack of oxygen. This scar causes something called Cerebral Palsy (we’re going to call this CP from now on) and I suffered from then on.

Of course, I didn’t get an instant diagnosis for my CP, and I had to wait until I started school for things to be put in motion. At 5, I got a diagnosis, but not just for that.

I was also diagnosed with hypermobility (not a bad thing in most cases) and collapsed arches. This means that the bottom of my feet are completely flat and I tended to walk on the insides of my feet. Painful, right?

Not only do I have all of this, I have something that caused my muscles and tendons to rip and tear every time I grew, causing immense growing pains, and rendering me unable to walk if it was severe enough. So, fairly complicated and extremely painful.

As I got older, my muscle pain became more permanent and joint and bone pain was added to that. In 2014, they began investigating me again to find out why everything was getting worse. See, other than hyper-mobility causing me to be high-risk for arthritis, the others aren’t supposed to get worse. In 2016, I was forced to use crutches all winter for the first time ever, and I thought that it couldn’t get any worse.

(Spoilers: I was wrong.)

Other than my pain levels growing ever higher, nothing significant happened until May 25 of this year. I had been collapsing suddenly all week, and on the 25th, I lost all feeling, permanently, in my right leg, and I haven’t been able to stand without the assistance of crutches since.

I was rushed to the hospital, and other than an overnight stay, five different suggestions of what could be wrong and a referral for an MRI, nothing was done. I couldn’t walk alone, and it took me a few days to figure out how to do a lot of things on my own, like going to the toilet or walking up and down the stairs safely without another person being there.

A month later, I had an MRI of my spine to make sure there were no injuries or signs of multiple sclerosis, and yesterday, it came back clear.

Since coming home from the hospital, I’ve lost partial use of my right hand and arm, and nothing is getting any better. Not that I expected it to get better, but I was hoping the issues would stay below the waist because if I lose the use of my right arm, I have to face my biggest fear and get into a wheelchair.

So, you might be wondering why I am telling you an incomplete story. I haven’t had a final diagnosis or even a point in the right direction. I’m telling you this because I want to prove that answers don’t come straight away, or even within a year. This has been going on (intermittently) since 2014, and I’m still nowhere close to getting any answers. I’m telling you this story because I don’t want anyone reading this who is waiting for answers to their problems to give up hope. Just keep holding on and fight for answers until you get them, just like I am.

And if this helps just one person, then this incomplete story has done its job, and I hope that eventually, my story will be complete, along with yours.