STAND UP STRAIGHT

Ross T. Bender

"Stand up straight, Ross." That was my wife Ruth, expressing her concern about my posture. Recently I had had a tendency to lean forward as I stood or walked. While Ruth was keenly aware that something was different about the way I presented myself to the world, I was too busy pursuing "important" matters to notice that something had changed.

It was about this time as well that a professor colleague at Associated Mennonite Biblical Seminary asked me if I had contracted Parkinson Disease. My immediate response was "No, but thanks for asking."

Why would he ask me a question like that? He told me he had noticed a change in my gait, that I tended to shuffle as I walked down the seminary corridors.

In the meantime, I became aware that my handwriting had changed; it had shrunk to a tight scrawl, and I found it hard to move the pen across the page. It was hard to write, even to sign my name. Strangely, my ability to type was not affected. Even today, over a decade later, I still find it easier to type than to write.

My education about Parkinson Disease (PD) was about to begin. My wife, my colleague, and my fingers had finally succeeded in drawing my attention to the fact that something was the matter with my body. I needed to see my doctor to find out for certain what it was. I obviously didn’t know much about PD, and I didn’t know anyone who had it.

My family doctor referred me to a neurologist who put me through some tests, including an MRI, to see whether my carotid arteries were blocked. They weren’t. None of the other tests revealed much information either. The only unpleasantness I can recall from that visit to the neurologist was the hour-long stay (it seemed much longer!) in the MRI tube where I couldn’t see anything and wasn’t permitted to move my body. I imagined it must be something like being deposited in a drawer at the morgue with the drawer being closed, head first, feet last.

Since the tests were inconclusive, no clear diagnosis emerged. I learned that PD is hard to diagnose and that the only sure way to make a diagnosis is to perform an autopsy. I decided I didn’t need to know that badly.

Some time later, however, I made an appointment with a doctor in the Neurology Department of the Mayo Clinic in Rochester, Minnesota, with the counsel and the help of my cousin, Dr. Arthur Kennel, now a retired Mayo Clinic cardiologist. The neurologist at Mayo, Dr. Joseph Matsumoto, examined me and stated unequivocally that PD was causing these changes in my body.

He assured me that my personal physician had put me on the correct medication but recommended that the dosage be increased. He further stated that he was optimistic about the new therapies even now on the near horizon and that there is guarded hope in the medical community that PD can be slowed down and perhaps soon even stopped in its tracks.

The symptoms with which I learned to cope included rigidity of movement, lack of balance, weakened voice, cramped handwriting, difficulty in dressing (especially in doing the buttons), getting in and out of my car, and getting out of a sofa or easy chair. I began walking with a cane and later bought a walker. This made it much easier to get around and to carry small objects such as my mail.

I recently reread the letter sent by Dr. Matsumoto to my family doctor, reporting on his findings and diagnosis. There are heavy medical terms in his letter I will not mention here mainly because I don’t know what they mean. In any case he stated with respect to most of them that there was no sign of them in my body.

Two recommendations were (1) that I reduce the amount of protein for breakfast or lunch, since it has the effect of nullifying the effectiveness of my medications; and (2) that I begin a regular exercise program. One observation I am eager to share, for obvious reasons, was this: "The patient has had no change in memory or thinking." I must admit that assessment is several years old and the evaluation may have to be updated. I did notice that the "loss of memory jokes" weren’t as funny as they used to be.

I had noticed that the effectiveness of the original medication prescribed by my physician and increased by Dr. Matsumoto was less than when first prescribed. Six months after reporting this change, I was given a second prescription which together with the original dosage had the desired effect.

I had good days and not-so-good days. On the good days (when I remembered to take meds on time), I could move around well. On other days I remembered keenly the meaning of the term movement disorder.

Before her death in December 1997, Ruth had encouraged me to move to Greencroft Retirement Community as soon as an apartment became available and it was possible to sell our home on Hampton Circle in Goshen, Indiana. We had earlier signed up on the waiting list—a list that stretched out for several years. Then word reached us that the retirement center was planning to erect Juniper Place, a three-story apartment building that would be ready for occupancy within the near future. There would be no waiting list; it was first-come, first-served.

My children came to help me prepare for the move. I was deeply gratified as I observed the way they transformed themselves from a collection of individuals into a smoothly functioning operation. They each brought their own distinctive personalities and skills to the task and wove them together so the result reminded me not so much of a machine as of a ballet.

The move from Hampton Circle to Juniper Place (the first of several to follow) involved considerable downsizing and disposal of the worldly goods we had accumulated over the years. Some things traveled home with my children or were shipped; some were donated to the Mennonite Central Committee (MCC) thrift shop or Goodwill Industries; some were sold at auction; and some were buried in the county landfill.

Some were hastily deposited in the Archives of the Mennonite Church. During my first foray to the Archives to assess what should remain there and what should go elsewhere, I found some odd items. Among these were a book of cat cartoons published by the New Yorker magazine, a tourist guide to the state of Idaho, many birthday cards from over the years, and a Ph.D. dissertation submitted by my son, Michael, to the science faculty of Indiana University.

Greencroft is a Continuing Care Retirement Community (CCRC). CCRC refers to the fact that Greencroft has facilities ranging from independent living through assisted living to several types of long-term health care.

Juniper Place is one example of independent living. I did not actually own the apartment assigned to me. What I bought was called a "life lease." When the time came for me to vacate the apartment, a dollar amount agreed upon at the time of the original contract was returned to me.

There were several types and sizes of apartment layouts. Mine, for example, had one bedroom plus a study, a living/dining room, and a full kitchen. A stacked washer/dryer unit was included in the large bathroom. There was a heated basement garage accessed via an elevator. Residents were free to design our own versions of independent living through a contract with the management to provide, for example, housekeeping and laundry services.

Juniper Place residents are not only Mennonites but also Brethren, Baptists, Methodists, Presbyterians, Catholics, and more. Despite the diversity in personalities, vocational backgrounds, religious persuasions, education, and life experiences, there is a spirit of friendship and camaraderie among the residents. This stimulating group of people enjoys dining together, sharing information about their families, and talking about health concerns along with other issues of the day.

The three years I lived there went by quickly, and I adjusted to my new life reasonably well. That is, my creature comforts were provided for. I did what I could to manage on my own and what I couldn’t do I was able to arrange for in other ways.

I continued many aspects of my previously busy and well-scheduled life. For example, I was appointed to the Ethics Committee of our residents’ organization. I spent time at my computer and even had several articles published. I drove my car until it became clear to me and my family that the time was coming for me to turn in my keys. Our discussion in the Ethics Committee of this traumatic (for many) issue had prepared me for this decision.

I was able, with the help of friends, to attend worship services at College Mennonite Church, although my schedule of outside activities was greatly reduced. I taught a few Sunday school classes, but again I found myself cutting back significantly on what had been an enjoyable part of my life. I began declining invitations from friends to join them for a meal in their homes or in restaurants.

All these changes were so gradual that I was able to keep going and to hold out quiet hope that I could keep on keeping on for a long time. I tried to keep active to the fullest extent of my waning energies. Some of my friends continued to encourage and compliment me for maintaining a positive attitude; others, though they did not say this in so many words, might well have been thinking that I was living in denial.

And then I fell and broke my shoulder.

My time of relative independence ended on the spot where I fell. The ambulance transported me to the hospital, where for several days I lay on my back and waited for whatever it is that people in such a predicament wait for. I was treated with care by the hospital staff, but I have little clear memory of the sequence of events during the time I spent there or of the complications I endured.

One memory, however, stands out: a visit from my daughter, Anne, and her children, Melanie, age six, and Eric, age four. Melanie had expressed her concern for me, especially whether I would be given a needle, whether it would hurt, and whether I would cry. When the nurse came to my room, guess what she had in her hand? Like a shot (pun intended), Melanie came to my bedside and held my hand, ready to protect me from the pain of the needle or even from the nurse, if need be.

It was a fine example of TLC, and I have no doubt whatsoever that it made a vital contribution to my recovery. In addition, Melanie left her watchdog (actually her watchmoose) to watch over me. There it still sits, high over my bed several years later. Its little assistant, Eric’s teddy bear, sits quietly beside it. I am well protected by these faithful little guardians of my body, soul, and spirit.

From Goshen General Hospital, I was transferred to Greencroft Healthcare. The main agenda here was to participate in therapy—physical, occupational, and speech. This is hard work.

My new routine began with a bang before I had barely settled in. A healthcare center is not the place to sleep in the morning. I started out the day with the speech therapist, for whom I developed a high degree of respect as I became better acquainted with my diaphragm. I also learned that I could sing when I was barely able to speak.

Then I played some interesting games with the physical therapist, which initially involved some physical pain. I was convinced that my feet weighed one hundred pounds each and would never carry me across the floor. But eventually they walked and taught me to walk. I was truly impressed by what skills these therapists have and how they can heal.

This way of life continued for several months. I still recall the day when a committee of five or six of the Healthcare staff met to share their evaluations of my progress. I was allowed to sit in the circle and at the end to make my comments, which I did with feelings of trepidation. With great relief I heard them say that I was qualified to "graduate" from Healthcare.

This decision was only the first step of a three-step process. Step two was an interview with the administrator from Evergreen West, one of the assisted living buildings at Greencroft. I may have been qualified to leave Healthcare, but did I qualify to move into assisted living? Step three was to hope that an apartment would be available when I needed it.

Meanwhile, we were trying to make decisions about that next move. It was hard to plan for the move to assisted living when we were uncertain when I would be released from Healthcare, whether I would be admitted to assisted living, and if an apartment would be available. One thing was certain: returning to Juniper Place was no longer an option.

It seemed a monumental task to get me moved out of my apartment at Juniper Place and into my smaller apartment at Evergreen West when it was all I could do to keep up with my therapies. Each of my children came and went, sometimes with overlapping visits, with Juniper Place serving as the command center by day and motel by night. But I realized that it was time to say good-bye to my apartment, and absorb the reality that my world was again shrinking, little by little.

PD is no respecter of persons. Whenever I ask, "Why me?" back comes the question, "Why not me?" Why has PD visited Muhammed Ali? Michael J. Fox? Janet Reno? Pope John XXIII? Or Billy Graham? Each is representative of a large and diverse population. Not that it is a great honor to be a member of such an exclusive club, but it helps to know that you have not been singled out for such a dubious distinction.

As I struggled with this twofold question (Why me? Why not me?) I became increasingly aware that a host of sufferers asks it with me. I must enlarge my perspective if I am to gain any insight and to experience some measure of healing. My vantage point has been largely egocentric. It has to do with my problem, with what is happening to me, how I am coping in my world, and what I must do to be healed.

If God does not intervene in these events, why not? Does God not care enough to get involved in their pain, in our pain, or in my pain? Or is God too busy? Or too weak? Or too far away? And where does that leave us? There is a big difference between discussing these questions in a seminary classroom and wrestling with them by yourself when you are lying on your back in the dark in the middle of the night.

One Sunday morning I was asked by the worship service planners at College Mennonite Church to read a short line as part of the call to worship. The line was as follows: "I am healed."

Afterward on reflection I felt uneasy about having said it and wished I had declined the worship committee’s request. It would perhaps have been closer to the truth if I had spoken the words "I am being healed."

My body has let me down here and there. But when I complain about this it turns to me and asks, "What have you done for me lately?"

My efforts at improving my health must be carried out with the realism that PD is a progressive disease. But I believe I have a choice to think of myself not as an invalid but as a whole human being who has medical problems with which I must learn to cope. I am still a person created in the image of God. I have much to learn and even to offer others.

—Ross T. Bender, Ph.D., is Dean Emeritus of Associated Mennonite Biblical Seminaries; www.rossbender.org/sermons.html