Music Therapy

“One good thing about music, when it hits you, you feel no pain.”

Bob Marley

We had a reprieve this week and it was powerful, beautiful, exciting and soothing. Sitting in a seat with not enough leg room, surrounded by people sitting and standing wherever they could to see the stage, isn’t an ideal spot for a body like mine. The auditorium is, what I would consider, still new and it bothers me that it wasn’t built big enough to accommodate its purpose and its purpose is growing, wonderfully growing. Luckily, for all those who did not get an actual seat or a spot with a view, their ears were the ones in for a treat and a good line of vision wasn’t necessary. My experience included much more than what was rehearsed and scheduled for the night and a good line of vision was, however, necessary for me and so I am grateful for the seat with not enough leg room. It was the first choir concert of my daughter’s junior year in high school, the music was amazing and I felt no pain.

There are so many things I love about choir music. I love how it can be complex and layered yet clear and focused at the same time. Different cultures and histories are often represented as well as new technique and styling, while the arrangements can express everything from melancholy and infatuation to just plain silliness. What I love the most, however, is that it truly “takes a village” to be what it is. Even if the arrangement includes a soloist, every part needs the others to be what it is meant to be. Each voice and voice part is equally important in choirs of every size because, without each other, none can reach their full potential. It is this fundamental part of choir that gives my daughter a sense of belonging and being needed when I know it’s been hard for her to feel these things really anywhere else outside of our home. Her body has been controlled by the pain, fatigue and muscle weakness of Rheumatoid Arthritis since March of this year. The last seven months have been amongst the hardest months of my life and I can only imagine how hard they’ve been for her. There are many things she hasn’t been able to do and watching those things either go on without her or simply go away has been almost unbearable at times. Luckily, RA hasn’t taken away music. While piano has been a more successful accomplishment and was even included as part of her physical therapy, she has had only a few triumphant occasions where her hands have been able to play the guitar, but her voice has remained what it has always been….beautiful!

Before this night, a choice presented itself that, to many, wouldn’t seem as significant as it was for us. My daughter had decided years ago that she was going to finish high school early and so she took academically heavy course loads both her freshman and sophomore year and took both summer and online classes at the local community college to earn duel high school and college credit. Unfortunately, her disease has been extremely stubborn to treat and its continuing progression has meant more time at doctor appointments and home in bed. Not wanting to start college simply because she could, she decided to take the year back and graduate with her class. She now has time to gain strength physically as well as time to enjoy her last two years of high school. When having to decided classes, she had always chosen academic electives to get ahead and to appeal to university admission counselors which is why she had chosen an advanced language course, offered only the same class period as one of the two choirs her auditions had awarded her last spring. This was a painful sacrifice. After several weeks watching how hard everything was for her at school and seeing how sad and depressed she had become, I reminded her that she now had another year and the academic elective could now wait until next year. She wanted to be in the choir and we both knew it was something she really needed for herself emotionally but she really struggled making the decision. Dropping an academic class so she could sing with two choirs instead of just one felt academically foolish to her. I talked with her about what it means to take care of our emotional selves and that it was not only okay to make a choice simply because it is what you enjoy, it is sometime imperative to do so for your health….and so she did. From the moment I got off of the phone with her counselor and told her it was official there was a light in her eyes I hadn’t seen in several months and that light only grew bigger until this night, the night I sat in the seat without enough leg room and without any pain. I not only heard the beautiful music, I saw my daughter joyful on stage. There she was, lending her beautiful voice to creating such wonderful music and she was smiling.

It wasn’t until recently that I had heard the term “music therapy”. I knew that music helped with memorization and I had often made up jingles to help remember things for tests when I was in school. I also knew that music could arouse different emotions, either by its connection to a memory, the lyrics or even just its beat. I knew it had influential power but I never thought much about whether or not it had actual healing capabilities. I now know that it does because I have seen it, heard it and felt it. The music did hit me that night and I didn’t feel any pain, which isn’t the expected outcome of someone with Multiple Sclerosis sitting for a while in a seat that doesn’t allow you to stretch. I don’t know whether my daughter had several moments without physical pain or none at all that night on stage, but I do know that her emotional pain had been soothed and it showed, physically. The power music has on my daughter and her Rheumatoid Arthritis can’t be denied or ignored. Music is therapy for her and it is an important tool in her fight that should always be remembered.

Mother Wound

“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.

Finding The Good Part

My son left for college this morning and through the constant ache in my heart I’m finding the good part to help me through this very long, slow-moving day. My mind has been reliving the moments that are a part of me forever. I can smell his sweet baby scent from the back of his neck that I inhaled daily from rocking him even when the books said I should be putting him down. I still feel the pit in my stomach watching him learn how to crash onto the front lawn riding his BigWheel. I can hear his raspy little voice telling me that I was a princess as he watched me put on my makeup and jewelry. I could fill pages with moments like these. I could also fill pages telling how life plays a cruel trick letting our children jump from one milestone to the next in the blink of an eye. Instead, I am going to tell you the good part. My son and I are very close and have a wonderful relationship. He’s also going to college! Thinking about him going to college and what he has chosen to study brings me to the good part of having MS. My son wrote a paper in high school about seeing me in the hospital and watching me recover from relapse and flares. He wrote that seeing these things helped him to know what he wants to do with his life. He changed focus in school and started classes in health science and became very active in HOSA, a club that prepares students for careers in the healthcare industry. My son is now a BioChemistry major and is planning on continuing on to med school to become a doctor. While my MS took so much away from me, it gave my son invaluable direction. This is the good part of MS for me. What are the good parts of your trials and are you willing to see them? I will painfully miss my son and MS will take pieces of me that will hurt emotionally as well as physically but finding the good parts and holding on to them have and will continue to make it all easier.

Being A Mother

Yesterday was Mother’s Day. I’ve been asking myself what it was like being a mother before I had Multiple Sclerosis. I’ve been a mother for eighteen years and only the last four have been years with MS. I know one day I will have had more Mother’s Days with MS than without so why am I feeling like I need to remember now? Maybe it’s because my oldest is getting ready to go away to college in a few months? Maybe it’s because my youngest seems to be growing up even faster? Maybe it’s because as my children grow, I feel like they don’t need me as much? I obviously remember but I want more clarity. I think my wanting to remember it all so clearly is because I want to feel like I was present enough both physically and mentally in the years before MS to balance out the years after MS and whatever it holds for me in the future. Did I do enough? More than enough? How will my children remember me as their mother? The one thing I’ve always known for sure is that my life’s biggest success will be in motherhood. This is my truth and I cherish it.

I’m sure that most, if not all, mothers with MS have the same worry. How can I control this disease enough to not hurt my children? I know I can’t control their feelings of worry and uncertainty and I know that I can’t control my physical shortcomings. It was hard for me to allow myself to say no to friends and family but it was a whole different kind of hard saying it to my children. It’s always hardest just after Mother’s Day until the long summer finally surrenders to fall. I hate saying no to afternoon errands in the 90+ degree heat but I have to. Falling asleep out of nowhere and waking up after dinner is the most pathetic one. What kind of mother does that?! Oh yeah…..me. Will my children remember this most or the years of dinner always by 6:30 and taking friends with us to parks and museums? The MS years will always be the most recent so that gives them extra weight. I just hope that I did enough before MS to balance it out.