I don’t remember what complete “independence” is anymore. I used to know how it felt, before my illness. I remember quickly dashing through crowded city streets, staying out late, going to the Village after a movie before I headed home via taxi to cross the Brooklyn Bridge. I was young, admittedly, but there was little fear and so much to do.
FIbromyalglia and Chronic Pain took away my spontaneity and instant fun and robbed me of joy. While I can still do many things, I need to wait until the same day to see how I feel. That hurts, not only physically, but emotionally. I can drive my car, if I have enough energy. I can go shopping for food, when I feel I am up to it. Last week my husband and I went to the first movie we have seen outside our home in years. I felt free, we had a bite to eat, and we went to see the new Woody Allen movie and I was happy. It was one day, one joyful day out of many.
I plan on going to my son’s college orientation this summer; I do not want him to be the only student without a parent there but still I worry. How much will I be able to do? Can I get a taxi from the hotel to the campus? Will I be able to walk a few blocks? I know there’s a tour but I will have to sit it out. I am the sick mom. I will smile sweetly and tell my son to report back every single detail while I sit on some bench, shaking my head back and forth, holding back the tears.
I am not that old but I feel old. Even the new medication I was on to give me energy has failed me. I was happy for a few weeks and I told my chronic pain friends that “Yes, There Was Hope for Fibromyalgia” and now I don’t know anymore. I feel bad for the people who thought I had found relief; I feel more sorry for myself wondering what happened and why this medication failed me, like so many others.
I rely on my husband, I am dependent on him; he knows the look in my eyes when I feel tired and depleted and when I hurt. He supports me, takes my arm. Part of me wants to pull away and say “I’m not a grandmother” yet part of me holds on and appreciates his love and help. My teenagers’ friends have seen me more in my pajamas than not. They have seen me lying in bed, with a book or the computer and even though I shout out a happy and cheerful “hello” I am embarrassed and I feel like I have let my children down.
Thankfully, my mind is still independent, I can think and emote and write and my imagination is not limited by my body. At the same time, I weigh myself down because the joy of spontaneity is lost forever. If I make a plan, even at the last-minute, I always have to think steps ahead, the amount of walking, sitting, standing, driving. If I decide I will push myself to go to the city and do something fun, I worry about if I will find a taxi because my ability to walk is limited. It usually keeps me home.
Independence Day is tomorrow, I would love to see fireworks, they make me so happy. I love the excitement and the blasts of color and the screaming and the thrill. But, I won’t be going, because there are too many variables that stand in my way. So, on Independence Day, I will not be celebrating with throngs of other people. I know that I can’t walk miles to see the show, I know that if I had to go to the bathroom there are none in suitable walking distance, I cannot sit on the hard grass for the hours it takes for the show and I will miss that dearly. On Independence Day, and many other days, I am dependent.