In 1957, Joanne Fleming developed severe rheumatoid arthritis that soon confined her to a wheelchair. A novitiate at the Sisters of Mercy in Chicago, she decided to become a speech therapist to help others cope with their disabilities. In the mid-`70s, her arthritis began to respond to new drug therapy and joint replacement surgery that enabled her to walk again. After more than 30 years as a Sister of Mercy, she decided to leave the order last June to pursue life outside the religious community. Fleming, 51, is speech department chairwoman at St. Xavier College, director of its Ludden Speech and Language Clinic and managing director of its theater company, Theatre II. In this interview with writer Darlene Gavron, Fleming talks about her struggle to live with her physical limitations, her desire to serve others and her new-found independence.
When I was 21 or 22, I woke up one morning and I couldn`t walk. My feet and ankles were so painful. Because I was so young, the last thing you think of is arthritis. I thought, ”What did I do to my feet, or am I wearing the wrong shoes?” I began to realize I was feeling it in my knees; I was feeling it in my hips, hands, everywhere.
It moved through my body very quickly, several weeks to a few months, which is what rheumatoid arthritis does.
I was at St. Xavier College at the time, studying and preparing to take final vows. I was still walking for a couple of years after it started, but with extreme difficulty and pain.
I had decided to enter the convent my senior year in high school. It was at a time when it wasn`t nearly as unusual as it is now for large numbers of young women to go into the religious life. It was at a peak time, actually, in 1954.
Senior year is a decision-making time for everybody. I was in an all-girls Catholic high school run by the Sisters of Mercy, and I had a strong desire to make a commitment with my life.
I didn`t come out of a family where there was a strong desire on the part of my family for there to be a priest or sister. My family was rather surprised by my decision. My own natural temperament and involvement in so many things didn`t fit the mold (of becoming a nun).
I grew up on the southeast side of Milwaukee, in the Bay View community, where my father was a pharmacist. We were the only pharmacy within several miles, so I grew up seeing my dad take calls in the middle of the night, filling prescriptions and going out to deliver them. I`m sure that`s how I developed the idea of serving people in my own life.
I left Milwaukee when I was 18. My novitiate was in Des Plaines and we were educated at St. Xavier College. I finished an undergraduate degree in speech and drama in `61, but it became clear that I wouldn`t be able to use it very functionally.
My rheumatoid arthritis was quickly diagnosed. At that time, there was limited medical knowledge about the best way to manage the disease. I was given medication for the pain and physical therapy and told to stay in a wheelchair. I was in my mid 20s.
The horrible part of it for me, and I think this is why I understand so clearly what happens to people with physical handicaps, was that I lost my whole sense of myself. I didn`t know who I was as a person. All I knew was I was immobile and that I was handicapped. And I didn`t have any sense of the
”me” of me. The only sense I had was of the incapacity of me.
I was teaching religion and speech part-time at Mother McAuley High School; I did that for about two years, between 1961 and 1963. Then I was sent to the community infirmary on the North Side, where all the older sisters and sick sisters were, to do bookkeeping, which was physically less demanding. I was 26 or 27.
Those years were all difficult for me. It was at a time, too, when I wasn`t aware enough to realize that you don`t go through something like this wihout counseling, without help. It wasn`t at a time when we were conscious, as a society or as a religious community, that these are real, critical life adjustments and that you should go through it with professional help.
There is no question for me that those times were learning experiences that have given me something that I don`t think I would have gotten in any other way.
I gradually came to a point where I was able to live effectively even though confined to the wheelchair and I stopped going to doctors for a while. No medical treatment seemed to help.
I was assigned back to St. Xavier to edit a community newsletter in 1964. I was taking classes in communications disorders and preparing for a master`s degree in speech pathology, which I eventually received in 1970 from Marquette University. I knew the wheelchair was not going to keep me from being able to interact effectively with people with communication problems.
A handicap in communication has got to be the worst. With a physical disability you have a body that doesn`t work, but if you`re fortunate, you have a mind that works, an ability to communicate.
A strong focus of my life is helping children with speech disorders. When I get into a clinic with a child, that`s my world. Anything else that might be happening to me, good or bad, I can block out. They are so real, so open.
When I first entered the convent, there was an idealism about it. There was the sense that I would love to be married, I would love to have my own children but that this is a greater good, this is a greater thing for me to do. That was the whole focus at that time, for me and in the church and in the religious community. The idea of a religious vocation was something that you chose if you wanted to do the more perfect thing.
Today, women are choosing careers at a younger age and having families later; so you must come to grips with the idea that you really will not ever have children a little bit later in your life.
When that became a reality I struggled with it, much more than I did when I entered the convent.
In 1973, I woke up in a lot of pain again. It was a systemic attack of the arthritis. I was referred to a rheumatologist, Dr. Harvey Golden, of Rush Presbyterian St. Luke`s Hospital. I responded so well to the medication, I was ready to think about joint replacement, so he referred me to Dr. Jorge Galante, an orthopedic surgeon at Rush. Within about three years, he did two hip replacements and a knee replacement.
Before, I had no reason to think that I ever would be able to be out of the wheelchair. Probably the most frustrating thing about being confined to the wheelchair was fighting the view that you`re only as valuable as what you`re capable of producing.
It`s the kind of thing that I think everyone has to work against. We are valuable because of who we are, not because of what we do. But our culture puts such a value on productivity.
As a young person, I had prepared myself for a life of service in a religious community as a teacher. Suddenly that was cut off by the arthritis. I knew that there would be other ways for me to offer service, but that was very difficult for me to see, work through and believe.
The whole transformation process ended at the point at which I really did become an effective person, even in the wheelchair. I had made up my mind I was going to find ways of doing what I thought was important whether I was in a wheelchair or not.
So when the doctor suggested I see the orthopedic surgeon in 1975, at first I was extremely negative. What held me back was never having experienced any (medical) treatment that really made a difference. I decided to try surgery (hip joint replacement) because (with the new drug therapy) the pain was finally under control. It gave me a whole new outlook. Becoming relatively pain-free, I was willing to try anything.
I didn`t begin to walk immediately. I had been in the chair about 15 years, so you can imagine what my muscle tone was. I don`t know if I was even willing to let myself believe that that was going to happen. When I was in physical therapy after the surgeries, I was up, I was moving, but the weakness made it an incredible effort just to make a step.
Being able to walk again wasn`t a miracle. It was very good medical management. I was fortunate. My arthritis was very severe. The fact that I have come this far is very unusual.
It wasn`t a miracle, but it was a gift of life. We`re talking about 10 years that I`ve been walking, and it`s probably in the last three or four years that I`ve felt wonderfully mobile.
There is little or no pain now. The disease has been in remission for eight years, and I`m taking practically no medicine. There are no guarantees, and I`m sure it could flare up again at any minute.
In 1975, as part of my physical independence, I moved out of the convent and into an apartment. It was about the same time I was having my two hip replacement surgeries.
I didn`t move out of the convent with the intention of leaving the
(Sisters of Mercy) community. But I think that as I was living in a much more independent style, I was able to get in touch with a lot of things about myself that I hadn`t been able to before. I became more aware of who I was as a person.
It was a very difficult decision. I went through a period of several years when I continued to try to deal with it in other ways, to be very sure that I was doing the right thing. The Sisters of Mercy will always be my family, and the spirit of Mercy will always be part of me, that I know.
I had come to a point where living in a community and living a community lifestyle was not really the best thing for me. I could have continued the way I was.
I`m still very much associated with the college and faculty. They have been a very important support group to me in so many ways.
I don`t think there`s a morning that I get up and I can get out of the bed and on my feet and walk that I don`t think this is just tremendous that I am able to do this.
There certainly are times when I realize, as I project forward in my life, that at any time I could lose all this. I don`t know what I would do if that happened again.
But I just have to believe that I would deal with it. Somehow I would have to.
