Actually just one little bird but how can I pass up an opportunity to include Bob Marley?!
I’m talking about Twitter. Years ago, I decided to join in what everyone seemed to be doing and created my account. I tried but it ran away from me. It seemed to be so much moving so quickly and my exhausted brain and fingers just couldn’t keep up, or so I thought. Almost four years later, I’m on Twitter and more than that, I’m using it and seeing its worth rather quickly. Several months ago, I joined again to be a “follower” of my daughter’s band and I was just and only that. I didn’t look around and I definitely didn’t reach out pass a few celebrities that I think are funny. This was all done in about fifteen minutes and that was all I thought it would ever be…until it wasn’t.
I didn’t even remember my user name and had to have my password sent to me when I decided to sign in a few weeks ago. Needing information and hoping for support with my daughter’s new battle with Rheumatoid Arthritis took me back to Twitter which is ironic because it was her band that brought me back to it last year. Now, I am following some really knowledgable and inspirational people and I am learning! While I am still fueled by an anxious need for knowledge, I hope to one day become help to someone on Twitter as others have been for me. I am still learning all the ins and outs and dos and don’ts but I am going to stay this time and continue to grow. Today, I am feeling Bob’s words….”Don’t worry about a thing,’Cause every little thing gonna be all right.” and I am grateful….for Twitter.
“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.
Truth is always good but how long and what it takes to get there….not always. I knew almost sixteen years before my diagnosis that something was wrong with me and that it was probably MS. One side of my body was numb from just above my belly button down through my toes. Terrified, I went to the emergency room and left with nothing after an MRI of my brain. When the numbness remained constant for another five days, I was sent to a cardiologist to test my heart and still nothing. After a week or so, the numbness went away leaving fatigue as a reminder that something wasn’t right. Still, for about nine years I accepted the fatigue and decided that I didn’t want to know. I also convinced myself that enough had been done and pushing further for answers would make me look crazy. This worked pretty well until I had vertigo for days that had me unable to drive, stand for long, and vomiting around the clock. I called my doctor and, as soon as I could leave my house, I went to see an audiologist to run tests on my ears. Again, nothing was found but he gave me enough information about ear and balance issues to make me feel that seeing him was the right decision. I took that teeny bit of ”this still could be a random ear episode” validation and ran with it. I had messed up ears… even though I knew I didn’t. Almost four and a half years ago, I woke up the day after Thanksgiving and my toes on both feet were numb. When I went to bed that night it was both my feet. Numbness continued moving up both sides of my body for days until it had reached my chest and I had to admit to myself that it wasn’t a pinched nerve or two… or twelve. I was going to know and would be introduced to the scars in my brain and in my spinal cord that mark all those years of not knowing. I had the truth and it broke my heart.
Not having the truth and not knowing have a way of being comfortably harmful both physically and emotionally but we still do it because it’s often easier and we all want things to be different from what they really are at times. I have recently done this with people, which I think is the most common way we all avoid knowing and the truth. We want things to be a certain way or we convince ourselves that we are just being positive, which is mostly a good way to be. Unfortunately, like my MS, knowing the truth about someone who is far from who you’ve known them to be leaves its own kind of scars. Again, I have the truth and my heart is broken.
I’ve decided that this spring I am going to work on letting go. I’m going to let go of the responsibility I’ve carried for the way I feel physically because I didn’t face my MS much sooner. I’ve been angry with myself and that is only making me feel worse. Even harder, I am going to let go of hurtful people who I now know are not who I thought they were or who I tried to make them out to be. Letting go will help me focus on fighting any harm coming into my life, whether it be a determined, misguided, damaging immune system, self-imposed guilt, or a manipulating, self-serving person misrepresenting themselves in my life. Spring is a time for new growth and beginnings and I am ready!
I have been thinking a lot about all that I’ve left behind. Time has nudged, well actually forced me through my life much too quickly, so I get lost in my memories and find myself saying goodbye to yesterdays all over again. Like everyone else, I have so many memories all of different caliber so my reminiscing brings smiles and laughter as well as frustration and tears. Some are sweet memories like snuggles with my babies in the middle of the night and the ceramic “Blondie” pin a boy gave me at the beginning of the school year that I wore pretty much everyday for the rest of 5th grade, while others are somber and weighted. I also look back and remember yesterdays that feel so unique to me with their abandonment because they are not part of life’s natural progression yet I know I am not unique and that many have had to leave the same things behind. Knowing this doesn’t bring me comfort and it often makes me angry because these memories shouldn’t be memories and they shouldn’t have had to be left behind for at least another forty years from now.
MS forces us to leave things behind, most of which are things no one really thinks about losing because they are basic mechanics of living. Sometimes, it is quick and sudden while other times it is very slow, fluctuating and tricky. Both can be easier than the other as well as equally cruel. We deal with loss of function that may or may not return and most likely never returns to where it was. While the things I have had to leave behind are the smaller things that MS takes, the fact that an internal rebellion inside me is to blame make each goodbye very cruel. My misguided immune system attacks my central nervous system leaving scar tissue that can’t be touched because of where it is (trust me, I asked!) and so the damage is permanent. The location and size of a lesion determine where and how much we lose. There can be loss of function anywhere in our body as well as pain, numbness, weakness, itching, burning, tingling and muscle spasticity. Our bodies also become controlled in new and sometimes scary ways by outside influences, illness, stress and lack of sleep. When I think about the consequential loss that inevitably comes it makes it all so much bigger. The meanest lesion I have is in my neck at C3 which gives it an unwelcome presence in just about all of my body and makes it the one I blame for most of what I have lost. So, in the midst of recalling what use to be, I am holding on to one thing I don’t have to leave behind, until my body decides otherwise, which is to remember all the good. Losing the happy memories of what once was is something I hope to never leave behind and while I can, I will give them enough room to quiet the sadness. While waiting for cure, my hope for everyone with any damage to their CNS is that we will one day have the ability to repair the damage and take back the things we have lost.
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.