A veteran of two bouts with acute leukemia, Gail Miller, 34, believes that for chronically ill people the illness mentality–feelings of weakness and helplessness–can be as debilitating as disease itself. Miller turned to weight lifting to combat the side effects of chemotherapy. Her leukemia now in remission, Miller has used her experience to establish a not-for-profit organization to help people with physical limitations. Miller`s Rehabilitation for Emotional and Physical Support (REPS) program consists of individually tailored warm-up, weight-training and other exercises. Miller, who lives with a goat, ducks, geese and other animals, described her struggle to regain a healthy sense of self with writer Teresa Barker.
What we do is a holistic approach to strength for all people who are ill with any degenerative condition–multiple scerlosis, cerebral palsy, mental illness or alcohol or narcotics addiction and especially the chemotherapy cancer patient and heart patients. We teach them how to use body building techniques to get in control of their muscles and their bodies. Most people who are ill are not feeling good about themselves and lose that self-control and confidence. It`s especially true of chemotherapy patients–chemotherapy makes you lose track of your existence.
I was diagnosed with acute leukemia the first time just before my 18th birthday. At that time it was something little known, and it was the dark ages of chemotherapy. Now leukemia is considered ”the luxury disease” because it doesn`t show the atrocities in the latter stages as other cancers do. At the time, though, I was ostracized by anyone who found out. It took me a while, but I learned to be very quiet as to who and what I was.
My mother was told I had three months to live and not to consider any alternatives. Nobody told me that. They decided it`d be better for me not to know and let me live what I had left without the scare. But it was evident to me that something terrible was wrong. Finally I did some investigating on my own, and one day I came down from my bedroom with this medical book in hand and said, ”Is this what I have?” and my mom had to s yes.
It was a tough thing to handle. My mom was a widow, and we were living on Social Security. There were daily visits to the hospital and messing around with every kind of drug under the sun for the chemotherapy. It was devastating –a confused scare, like being put in a big bag you couldn`t get out of. You could feel the walls, but you couldn`t climb out. There was no way out and there was no hope.
The disease itself caused no pain–left alone you simply waste away. But the drugs are very, very toxic and dangerous. They never warned me about the side effects; maybe they didn`t know for sure, but the drugs take over everything. I call chemotherapy the deadly saviour; it either cures you or kills you. It`s hard to imagine. Your hair falls out. Your face fills with water and actually gets round. One drug can build a hump of fat tissue on your back. Your whole body gets puffy, and you can gain tons of weight without eating that much.
I was always a moderate sports enthusiast, active but not a superachiever. The first time I got sick I started walking and bicycling to feel better. I did that daily. And I tried tennis. I was working at the time and going to college, but I had so many physical problems with the drugs that it was hard for me to concentrate and I was fired from a job as a telephone operator. Eye-hand coordination was a problem–your hands lose their feeling
–but I didn`t tell anybody, so they thought I was stupid. I got other jobs.
When I was 25, I graduated from the University of Illinois with a degree in fine arts. I`d started out painting but ended up sculpting. I loved wood and stone. I also came to the end of the four-year chemotherapy treatment, which was concluded with radiation to the spine and skull and injections. That was another 2-3 month schedule of extraordinarily volatile side effects. All my hair fell out, and I was constantly nauseous.
I still exercised daily. I believe the exercise always helped me.
I went on to start my own business, and pretty soon my exercise routine declined under the pressures of work and some emotional involvements. Finally it all popped. It`s a mystery why the leukemia came back, but it did, two years ago. It was about November, and I had to check into the hospital for chemotherapy again, only this time it was a real shock. I was very afraid that I wasn`t going to come out again. I went off to the University of Illinois for month-long treatment.
While I was there I exercised in my room–sit-ups, leg lifts and running in place. I went home right before Christmas. Then there were two months of extraordinary side effects: The drugs dull your senses in some ways and speed you up in others. It`s incredibly confusing. It creates a kind of feeling of anxiety that make you want to jump off a bridge and end it all. You know it`s the drugs, but you hang on every minute. A day lasts for days and it`s torture.
I started to ride my exercycle, and I`d ride and ride and ride. Then I started to go to the Y to swim, and one day I went down to the weight room. I had this hump of fat on my back from the drugs–they call it a buffalo hump
–and it hurts.
I was fascinated by the weight room and started exercising there. I could switch the weights around and keep from getting bored. And it was great because nobody made me feel like there was anything wrong with me. They treated me like just another person, which came at a time when I felt so bad about myself. I felt this was the one place I could go and feel ”normal.”
I drove myself. I swore I wasn`t going to let the drugs take over. The weights gave me a lot of control and unexpected pleasure in myself because I challenged myself every time I went in. Even though my body wouldn`t show progress the way a normal body would, I could feel the strengthening.
I did a lot of reading on the subject. I learned how to build muscle through exercise and proper diet. Then one day a nice thing happened. I was teaching some people who`d asked me for help, and the Y asked me to teach a class. I`ve been doing that for about a year now.
It`s a simple thing, how the exercise helps. It`s getting back to primal stuff, becoming aware of those motions you automatically do. When you go to open a door, you don`t think about what muscles it takes. It seems to be involuntary. But you`re sending that message through your nerves.
Control makes you aware of your strength. If you have degenerative disease, especially for a woman, even some silly thing like struggling with a door becomes a hassle.
It`s a very basic good feeling to know you`re not dependent, that you can be in control and you can help other people. The information in my program is not unique, but it`s never been applied in a way average people can use. We want to take it to the schools and park districts and other community centers. We`re saying that the same principles and intricacies of movement are what allow you to get in touch with your body, no matter who you are or what shape you`re in.
