In Toronto’s Chinatown spring is caged to prevent it from hurting anyone. But spring is spring, caged or not. The sun is shining, Marianne’s hot dog cart is open again and the nurses are even friendlier than usual.
I’ve had cause again, recently, to reflect on the time when I was first diagnosed with this weird and wonderful disease. My doctor at the time, sent me down to the Boston Medical Center for a second opinion. While I was there, the director of the program let me look at a photo album that had been put together by another patient, Isabel. Isabel, like me, had been quite young when she was diagnosed.
This photo album tracked Isabel’s path through the dreaded stem cell transplant that I was scheduled to undertake. The pictures of her before the transplant showed a beautiful young woman with long, rich hair and a tired and pale face. She had been misdiagnosed for ten years before she was diagnosed with amyloidosis.
The pictures of her during the transplant showed her looking thin, with eyes too large in the head that was missing its beautiful hair. I stared and stared at those pictures wondering how she was feeling, wondering if I could do what she was doing. Was she braver than I was? Was she stronger than I was? Did she have some special superpower that allowed her get through this or could I do it too?
And then, oh glory, were the ‘after’ pictures: pictures of her hiking in the mountains; pictures of her with her new baby; pictures of her looking strong and healthy.
I communicated with Isabel and asked her numerous questions about the daunting treatment ahead of me. For me, it was as if she had left a trail of bread crumbs in the forest for me to follow. The comfort that spread over me in being able to talk to her was profound.
Recently I’ve had the chance to be on the other side. I’ve discovered I have a liver sister; a wonderful woman who also has amyloidosis with liver involvement (although her liver lacks the magnificence of my own, poor thing). It hit me recently that she has been following my bread crumb trail as she prepares for her own stem cell transplant. And I’m sure that down the road, knowing her, she will do the same for those that follow.
It’s not exactly a support group, which, as I’ve said, is not really my thing. It’s more just reaching forward and backward to connect with those who share the same worrisome experiences. It’s more like a support chain.
I like that idea of being part of a support chain. If I have to be sick with this strange disease, I’m glad I get to be a link.