“Let me not be weak and tell others how bleeding I am internally; how day by day it drips, and gathers, and congeals.”
Sylvia Plath seems to be where I find my voice when I’m feeling a certain strain of depression. It’s usually a sadness entwined with the sting of what I perceive to be injustice. I’ve been watching my daughter lose bits of herself to her own body. This has been happening steadily for the past three weeks. I know what this is like. I have lived this. I watched my son live this. Now it’s my other child, my only other child.
The one thing that helped me the most when I was trying to come to terms with my MS diagnosis was the constant reminding that it was happening to me and not my children. I wrapped myself in that psychological bubble wrap and it helped because I knew it could have been so much worse. A child in distress quickly becomes an involuntary wound carried by mothers and watching my child go through the physical and emotional thievery executed by an autoimmune disease would be an always-throbbing wound that you know would never go away. These mother wounds are always next to your heart so each throb the wound makes inadvertently pushes against your heart with a heaviness that can make it hard to breathe. Just thinking about it made it hard to breathe at times so I wrapped myself up tight in knowing that it was me and not my children. I focused on my lacrosse-playing son and my dancing daughter. I watched and listened as they played their guitars and hearing them sing…..truly healing.
Almost two years ago my son was diagnosed with Rheumatoid Arthritis. Even before the official diagnosis, I knew it was what I had feared and that he was also suffering from an autoimmune disease. My mother wound throbbed and stabbed. It felt so cruel when he wasn’t able to play lacrosse his senior year of high school, especially after playing the three years before. It was heartbreaking watching him struggle to walk throughout his graduation ceremony to receive his diploma. I felt such a darkness when his hands no longer allowed him to play his guitar. I couldn’t see a way for light to reach any part of it because it was all so wrong and so unfair. It still could have been worse and my son was the one to remind me, quite simply in the car, on our way to one of his rheumatology appointments. I was grateful that my youngest was healthy, dancing, singing, playing the guitar and keyboard and doing the social things her age required- mostly shopping with friends. My son quickly found comfort in knowing his sister was okay and I knew that I had to remind myself often, check my pain and allow him to be comforted.
Today is dark and my mother wound is large and throbbing. First it was her hands. She couldn’t hold her pencil to finish writing the assignment in her history class. Her ankles followed quickly and the white braces they required at a choir concert made for a heartbreaking fashion statement on stage with the uniform black dresses and shoes worn by all the girls. The knees and toes have been swollen for days now and she doesn’t have enough function and is in too much pain to make it to school. The first step of trying to manage with pain medication alone is not working and things seem to just be getting worse. I’m here. I’m in that place I had used for comfort because it wasn’t my reality. I will find new bubble wrap and I will wrap extra around the wound next to my heart because I am a mother and both my children need me to help them. First, I need to find a way to breathe when I can’t.