This blog so far has been primarily about my illness and I guess that makes sense since I’m waiting for a second heart transplant. It’s not all I plan to talk about, but I do have a bit more to say. I’m sharing some insights I’ve gleaned from nearly 24 years of being ill. Some of it might resonate with you, even if you haven’t been in a position like this before.
One thing I dearly miss when i’m having a bad day is stillness.
You see, when you aren’t feeling well, and you know why, there’s this feeling that when you are still, it makes the illness more obvious. It always there, and staying busy is a great way to deal, but when you sit down and breathe and let everything else melt away and you try to find that stillness, you find that you aren’t alone there. You’ve got this illness with you and it never goes away.
With a heart condition like congestive heart failure, you become keenly aware. Your heart gets physically enlarged, and you feel every beat. My original heart, which I’ve now lived longer without than I did with, was extremely enlarged. In fact, my transplant surgeon said it was one of the biggest he had ever seen. I had a home health nurse that would come in 2-3 days a week and draw blood and check my vitals. She could check my pulse my watching my chest move up and down.
So that beating heart, even though it’s closer to stopping with every beat, is a seemingly never-ending reminder that something is wrong. And it keeps you from finding that stillness.
So when I had the transplant, and finally woke and was aware enough to feel my body again, I could feel a strong heart beating, a normal sized heart, and a sense of both physical and mental relief. I could find the stillness again immediately. And it was great for 20 years.
Now I’m again having trouble finding the stillness. It’s the one thing that I’ll be searching for when I awake from surgery, and it will be the solace that tells me I’ll be alright again.
