By Claudia Costa-Jacobson
Thursday, March 5, was a sunny day on the edge of spring. Bright sunlight made me feel good as my wheelchair headed for the pavement at the edge of our driveway. My ‘pit crew,” Jimmy and John helped me into the car easily. I’m getting stronger and am less fearful on chemotherapy days. As our car leaves town, though, I’m confident that coming home to Andes will be the best part of the day.
There is a lot on my mind as my strength comes slowly back. Memories come like snapshots. Some are hard, rock bottom fear. I can’t stop those memories anymore than I can force good thoughts. The price I pay for the peace I’ve been given is to allow both good and bad to exist. Neurological pain is with me from morning until late night every day. John and I work on it and with it every day.
Pain is what I have, its not who I am. Joy, love, laughter are a part of me. For instance, my head hurts me enough to make me want to stop writing this right now, but John is playing his fiddle in another room, the sun is out, the temperature is getting warmer and I’m ten days past chemotherapy.
In Albany my “pit crew” always sticks by me like glue. There were the doctors, a quick needle then the medication itself. When we left, John and Jimmy worked with practiced quickness to get me into my wheelchair and loaded into the car. It was well after dark when we got back to Andes. While my body shivered, my head rejoiced at seeing our windows, our cat, then my bed. Jimmy parked our car and carried our stuff inside. He left as quickly as he could. His jumping, joyful dog “Lovie” was waiting for him at home.
John peeled my clothes off and got me ready for bed. There were clean sheets thanks to my aide, Sandy. The night and next couple of days after chemo were hard. Sometimes I want to scream, “Pain medicine please!” “Sandy, can you find my nausea medicine?” “I gotta get up in this bed!” “Gotta turn on my side!” “Can you change this chux–it’s wet with sweat!” “How can I shiver one minute then sweat the next!”
The next morning, I asked Sandy to pull the op-site off my Power Port. It hurts only for a second. The Power Port is a tiny cup imbedded under my skin. It is a place I can find with my fingers and where the nurses can insert a needle to draw blood and administer the chemotherapy.
I have had this treatment now for almost two years. The more usual forms of treatment for MS didn’t work. Most doctors don’t know how chemotherapy works. Can I live with this dichotomy? You bet. When I was working as a nurse I came to understand that medicine and nursing are both scientifically based and are also an art. The art comes into play when you accept that you don’t know why something works but it does.
John and my team of doctors in Albany were with me when I was completely paralyzed and couldn’t move or even breathe on my own. Yesterday, once again I was able to stand for a few seconds, long enough to take a couple of steps with John holding my arm and prompting me where to put my feet so I could turn and sit in my wheelchair. It was the shortest, most intense dance we’ve ever done, but each step teased me toward freedom. I rely on John’s physical strength and the words he uses to remind my leg muscles what to do again. He relies on my will to push through pain and trusts me to know when I can do it. Some days the form of MS I have, Devic’s Syndrome, grabs and some days it lets go. We both trust in prayer. Though it may sound corny, we don’t care. The humility of illness bent our knees. The outpouring of love, help and caring from our community saved us from broken backs.
One constant in our lives is that we have music–homemade and electronic-free. The musicians came last Tuesday along with Sally, our dog friend. (As you may recall, Sally is our cat Sassy’s nemesis, just for being a dog and for eating her food that Sally did because Sassy didn’t.) It was swell music. There was Ben Murdock with his button accordion, a sound heard in Irish and Cajun music, Ed McGee with his rhythmic clawhammer banjo, Ginny Scheer with her flute, John VanBenschoten with his guitar and bluegrass banjo and my husband John with his fiddle. They sat in a circle in our dining room while I lay in my bed in the living room listening. My mind looks for the melody, so I listen for the fiddle or flute. They played as fast as fire, “Soldier’s Joy”, “Devil’s Dream”, “Deep Ellum Blues” and slowed down on waltzes-“The Lover’s Waltz” and “South Wind”.
“Well it’s late in the evening and I blew that room away.” That’s Paul Simon and its close to what I felt right then. The music lifted me up. The rhythm enveloped me without my conscious agreement. I was moving my feet. My brain anticipated the next sound. I no longer struggle to recall the tune names. The more compelling the sounds the more I’m drawn in. Listening to the blues pulled me into another room–dark, smoky and with small tables. “Deep Ellum Blues” filled every sense. I felt well again. The music is a warm blanket and tonight I was going home with the sweetest guy in the band.