Six years ago, I accidentally amputated the end of my left-hand thumb. Due to circumstances, I was over an hour from a hospital, and during my journey there, I wondered if they would be able to reattach it or not. What if I lost the last inch of my thumb? I finally decided that it would be OK — I would adapt.
Fortunately, the repair was a success. But, while it was healing there were some things I couldn’t do — the biggest being able to knit. I am an avid knitter, and it was really bugging me to not be able to do that. I eventually managed to, slowly, with the big bandage on my left hand. Once the bandage got smaller, my physical therapist encouraged me to knit even more, saying it would help me get the movement back in my thumb.
Five years earlier, our daughter broke both wrists and detached a tendon in her elbow in an accident. For two weeks, due to her bulky casts, she was unable to do anything — from scratching her nose to turning the pages of a book to feeding herself or getting dressed. She went from a competent, able young adult to a helpless infant — except she, at least, could tell us what she wanted!
After two weeks, she had the use of one hand, and she taught herself how to dress herself, feed herself, and do any number of things that she couldn’t do just a week before. After six weeks, she was pretty much back to where she was before the accident.
These were small losses, even though they felt pretty big at the time. We all face losses, of all kinds — great and small. A relationship doesn't work out. Our loved ones die. In a moment, you can go from being fully able to being disabled. Over a creeping period of time, you can go from being fully able to being permanently disabled. We never know, and we may not be able to control the outcome.
Either way, it sucks. We want to trust our bodies, trust our minds. We want to keep going with the plans we had, with the life we had envisioned.
How does that old saying go? — life is what happens when you’re busy making other plans….
I am feeling loss pretty deeply these days. It’s been a challenging year since Sky’s diagnosis, and we’ve done a lot — renovated a new home, traveled, found new volunteer work, reconnected with old friends, created this blog, and had lots of fun. And lots of tears.
But. I’m done with this now. Time for something new — or old. I’d kinda like to go back to my old life, pre-diagnosis. I want the old Sky back. I want the old me back.
Unfortunately, there is no going back. I can cry, and fume, and fuss, but our old life is not coming back. There is deep grief with this enormous loss. Yes, we’re moving forward on this new path, trying to create something positive and empowering. And, at the same time, we have absolutely no idea the trajectory of this disease for Sky — how long it will take for him to lose different abilities, and which ones, and in what order. And, we have absolutely no idea what it will be like for me, how I will handle things, how it will affect me physically and spiritually, or how it will affect our kids.
Lest any of you are worried about us, we are doing all we can to deal with this — eating well, exercising, talking with professionals and friends about our fear of the unknown and our sense of loss, having fun, and doing what we can while we can. Appreciating every moment.
But, for me right now, this sense of loss hangs over me like a black cloud. Perhaps there will be a wonderful thunderstorm to wash it all away (but, please, no hurricanes!).