I have seen several mental health professionals over the years. In 2011, I was trying to break in a new therapist. The first few appointments always go the same and are always exhausting.
“Have you suffered any life-changing losses?” she asked, voice neutral, note pad on her lap. I listed the people close to me that had died up to that point in my life. She made some notes.
Later on, I mentioned that I was comfortable conversing in both English and ASL. She asked how I learned to sign and I told her that I had lost most of my hearing. “Oh, that is definitely a life-changing loss,” she remarked, flipping back a page to list it in the appropriate section. “You can grieve the loss of health or a sense the same way you can a person.” I had never realized that before, but of course she was right. You can grieve any loss.
Grief is, for me, the hardest part of being sick. It is also the aspect I find people are least likely to understand. Our experience with grief is largely confined to the death of a person. This grief can be huge, all consuming, but in many instances, fades over time. Not always, but often, it is easier to remember a person without pain as time passes. Even this familiar type of grief is uncomfortable for many to watch.
Grief because of illness is completely different. It is a distinct entity. You don’t grieve because you are sick. You grieve because of all the things you have lost, friends, jobs, opportunities. You grieve because the life you wanted, and all the things you wanted to do, became impossibilities as you watched. I talk a good game about my life. I like my life. I really do. But there are things I wanted that I will never have because of my illness. It’s an unpopular thing to say, but it’s the truth. I will never have the life I would have if I hadn’t gotten sick.
The thing about this grief is that it cycles. It’s not always present, and when it will return is not always predictable. You can never deal with it enough that it goes away forever. I go weeks, even months sometimes, without mourning the loss of the life I thought I would have. But something will happen, often something very minor, and this darkness will bloom inside me, spreading further with every beat of my heart.
I have been journaling for most of my life. I reread them every so often, just grab a bunch of them and read them in bed. It used to be soothing. It’s harder now. I was so intensely hopeful, so sure that I could do everything, have everything, be everything, that I sometimes have to stop. Reading these pre-diagnosis passages is like looking directly at a solar eclipse – you know it will be swallowed up in darkness soon, and it hurts too much to watch.
It gets easier as time goes on. It happens less frequently, but still, it is. My grief follows me, a sort of shadow self. Even when the sun is overhead and you can’t see it, it is still there, waiting. The sun can hide it, but it can’t make it a memory.
We all have shadows, after all.