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.

Farewell My Sweet Frienemy!

I think it’s safe to say that people with MS are always looking for ways to feel better. Pain, numbness, memory problems and especially fatigue can be debilitating at times and always annoying. There are several medications to help with MS symptoms and they can be quite effective but, before I take that leap, I’m going to try the hard way first…..I’m saying goodbye to sugar. This is going to be extremely difficult for me because sugar is highly addicting and I am a self-proclaimed, hard-core sugar junkie. I not only love the stuff and all the pretty, fluffy, decadent ways it whores itself out to me, I crave it daily. I’ve been told and have read several times that sugar can increase MS symptoms, especially fatigue. I want to feel better than I do now so I’ve decided to take the plunge. I’ve started with only a little sweet creamer in my morning coffee and a little agave in my oatmeal. I’m sure to a lot of people this is still a lot of sugar, especially to someone who has taken “the plunge”. Well, for me, this is a huge change! Next week, I’m going to be completely sugar-free with my coffee. Harder, will be eating my oatmeal plain. I don’t like the taste of artificial sweeteners and don’t think they’re very healthy so that’s not an option for me. My hope is to get to the point where sugar is a rare indulgence. So, here I am, saying/writing it out loud, putting myself in the spotlight and hoping that this will help me to stay the course. Wish me luck and I’ll share this part of my journey in case it’s something someone else is either considering, doing or has already done.

Becoming A Pill Popper

When I think of my aunt I always think of the small suitcase she always travels with to carry all her pills. She seriously has a suitcase there are so many! It’s something that’s always bugged the crap out of my mom and has kept her from taking medication. She isn’t going to be as ridiculous as her sister even when her refusal to take certain medications is even more ridiculous. I can now see that her attitude has influenced my own. I feel like taking anything other than my Copaxone is excessive and would put me on the teetering edge of becoming a hypochondriac. I’ve already succumbed to the daily ritual of Dexilant because without it I can’t eat without the food either feeling like it’s trying to kill me with knives and fire or the food literally deciding to make its way out the way it came in. This has proven to not only be quite embarrassing at times, but totally sucking all the time. Dexilant is a little blue pill that makes me just as happy as that other blue pill makes many middle-aged to you’re-really-not-too-old-to-still-want-to-do-that-so-often? aged men. I’ve even given in to a daily fix of Lexapro because I was sure both my children were going to get MS too, my son wasn’t going to want to go to college and I didn’t feel like leaving my bed was all that important. Soon after, I had to add some Wellbutrin to the cocktail because even though I had anxiety and was clearly depressed, I was having side effects from the Lexapro that were not acceptable My fatigue had gotten worse and I was also hoping the Wellbutrin would help with my lack of energy. So, here I am without my food escaping or trying to kill me and my anxiety and depression have moved on. Still, fatigue is a common problem for people with MS and mine has become incapacitating at times. I also deal with “Restless Body Syndrome”. Restless Leg Syndrome…pshh, that’s nothing! When my body isn’t going all ADHD on me it often feels like there’s a knife at the base of my skull being twisted back and forth or a vice trying to break my head open. I know I sound overly dramatic but I’m writing this while in a lot of pain. I’ve picked the phone up so many times to make an appointment to see my doctor about these problems but the image of my aunt with her pill suitcase and the sound of my mother’s heavy sigh at seeing her makes me hang the phone up every time. I go back and forth between telling myself that I can manage these symptoms with lifestyle changes to screw your mother and your hypochondriac aunt, you can help yourself with as many pills as you’d like. Right now, I take one shot three prescription pills and eight vitamins a day. I’m feeling like that’s too much already but I have MS and MS has its own suitcase full of problems. Isn’t it okay for me to have my own suitcase and not be seen as a hypochondriac? I already feel like my MS and it’s symptoms are misunderstood to the people around me so I try to hide it as much as possible. It’s getting harder to do that and adding more pills to take throughout the day will only be harder to hide as well. It’s too late to call the doctor today and I’d like to say that tomorrow I’ll blow all the crap in my head off and help myself but I’m pretty sure I’ll hang the phone up again. I feel like I should apologize to anyone who reads this. I’m whining and for that I am sorry……again.