“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.
Christmas this year is proving to be difficult. While Christmas pasts have held some level of mental fatigue in both the years before MS and the years since, I have never been denied any of my Christmas physically…until now. The weekend after Thanksgiving is when we decorate. There are three Christmas decorations that are a part of Christmas that really matter to me and are traditions that I don’t want my family to be without – the tree, the Nativity and the mantle. I know these things are not the important parts of Christmas but, as a mother and a homemaker, they feel important to me. They are my contributions to my family’s Christmas. Unfortunately, my body is having no part of Christmas this year and decided to take it out on the tree first. Whether it was trying to balance on the ladder, keeping a breakable ornament in my hand and off of the tile floor or being able to use my arms and legs long enough to get things done without going numb I failed. After a few days, I naturally began to stress and feel guilty that it wasn’t done which only makes it worse. While it isn’t certain if stress can cause a relapse, it does worsen symptoms and can do so rather extremely. This made for a rather pathetic cycle. It took me almost two weeks to finish our tree! I still have to get the mantle done which isn’t anywhere close to the job the tree is and the Nativity is really just a matter of finding the right storage box but I know that it isn’t going to get done today and most likely tomorrow. As I was feeling pathetic getting the tree completed I kept seeing the Charlie Brown Christmas tree and every time my body failed in someway I saw Lucy pulling the football away just as Charlie Brown was going to kick it.
There’s always something we want to do, have, change or be. It may be buying a new car, shedding unwanted pounds, writing a book or becoming a better version of yourself, whatever that might mean to you. I’ve never been a car person but I’ve wanted to lose weight, be a better wife, mother and friend and bringing myself to start this blog was a huge leap of faith for me! There are pressures that have been there for as long as I can remember that served as motivation for me. I want to look good in a bathing suit, I want my family to be nourished in every sense of the word, I want people to like me and want to be my friend and I want to put my thoughts into the universe in hopes that I might reach another soul who not only understands them but who can maybe even be changed by them. I’ve wanted all these things for a long time but now, while still wanting them the same and wanting the same outcomes, I’m motivated to accomplish all of them by something different-fear. I am scared that the day will come that I won’t be able to write, think clearly, cook, clean, do my daughter’s hair, watch lacrosse games, attend music performances, lift weights, run, walk, see. I am scared so I am now laying my foundation. I’m working out regularly, I’m almost always present at all the things my children do, I host parties for my children and their friends as well as mine and my husbands. I don’t want anyone to forget how I am now and how I have been present. I want my friends to still want to be my friend even if I’m not so much fun to hang around. I especially want my husband to feel like he’s had a good wife and my children to feel like they’ve had a good mother. If I push myself and stay committed to all the things I’m still able to do, I will have a better chance of these things. I also take the phrase “If you don’t use it, you’ll lose it.” to heart and task. I need to read, write and learn to exercise my brain just like I need to strengthen my body to give myself a better chance of beating the odds. I am too scared not to.