I’ve been working on writing a book for two years. It’s taken many forms, but I finally settled on the first one I want to complete to be about the past couple years of being really sick and the lessons I’ve learned from it.
Despite a ton of adversity thrown my direction, I’ve just kept going. A friend likened my final chapter of my book to a “hero’s quest” and something along the lines of people don’t always set out to be heros, but sometimes they become one due to circumstances. It has had me crying all day.
I got meningitis maybe from my stem cell injections. While it’s not a cause, it’s a correlation. I have a very rare inflammatory condition. Stem cells cause an inflammatory reaction in your body. The two combined probably were like an atomic bomb. My condition is rare. Like I’m only one of 30 recognized in the world, so I absolutely say stem cell science is the way to go. If you get the opportunity to try it, I absolutely recommend trying it with the direction of a trusted medical professional.
Meningitis swells the lining of your brain and spinal cord. It’s the worst pain I have ever felt in my entire life that even my best breathing, meditation, yoga, and even pharmaceuticals made worse. I’m still in extreme pain. The worst part was I felt like I lost my mind. You could have thrown any severe psychiatric diagnosis at me every 5 minutes and probably would have fit the criteria for that few minutes.
I knew it wasn’t me, but when I couldn’t figure out simple tasks and found myself crumpling on my kitchen floor in exhaustion from trying to make food and do dishes and crying myself to sleep on the kitchen floor as 25 feet to my bed felt too far.
I knew I had really lost it when I was angry at people who didn’t deserve it (some did!), but I apologized as I could as I wasn’t myself and worked hard to explain why. I think the important people did. I lost hope. That isn’t me.
So I’m sitting getting a steroid drip into my arm for 3 days. I don’t feel confused. My hope came back. It’s also going to kill the stem cells, or some of them, my miracle cure.
With this comes a ton of acceptance that I will never be well. I will work towards wellness and continue to take excellent care of myself. I will look for the best supportive therapies to help me feel my best for my incurable diseases. I will ask for more help. I will enjoy people as they come. If they don’t, I have to accept that too.
Acceptance of the fact that life isn’t always about winning the lottery. It’s the miracle of understanding that life throws us what feels impossible and unfair, but I suppose the miracle is that we accept it and move onto whatever happens or doesn’t next.
And the book isn’t done done. It’s kind of a disorganized mess of many random chapters that feel ready to be focused and put together FINALLY as I was waiting for my Disney ending to happen where I’m skipping perfectly healthy into the sunset. That’s not happening. I may enjoy the sunset, but I will probably only skip in my mind and not in physical health. I accept that with lots of sadness and plenty of relief to know I can stop chasing the impossible.