Last night when sharing our history with our hosts at dinner, the look back opened a process that has continued today. I asked Mary Ann if she was comfortable or uncomfortable with the conversation last evening. The questions of her were direct and personal. She said that she did feel comfortable.
As I mentioned in last night’s post, Mary Ann was candid about her feelings. She was clear that she was not resentful toward God for her situation, but she was resentful toward me for moving the family from what had been home for fifteen years.
When we moved from Kansas City to Oklahoma City, I moved five months sooner than Mary Ann and the kids. They needed to finish school (Lisa, her Senior Year in high School and Micah, his Eighth Grade year at a Kindergarten through 8th Grade school).
It was shortly after I moved to OKC that Mary Ann phoned from Kansas City with the news that she had been diagnosed with Parkinson’s. Her memory of the move is colored by the pain of that diagnosis, having to deal with her feelings without my presence for support. She had the whole load of the family while trying to process that news.
What, in my estimation, made it more painful was that Mary Ann was adamant about keeping the diagnosis a secret. That secret was kept through the move and on into our new life in OKC for a full five years.
With little stamina for involvement with others since she also worked part time at first and then close to full time for the last six of our nine years there, it was hard for her to develop close friendships from which she could draw support.
It was during that time that we experienced very poor medical care from Neurologists who had little knowledge of Parkinson’s other than the very basic medication addressing only the motor symptoms. Since she has the early onset variety, there are more complexities than presented when it is diagnosed later in life.
We managed to get to the annual Parkinson’s Symposium at the University of Kansas Medical Center most years while we were in OKC. As a result, we had access to the latest and best information on Parkonson’s Disease and its treatment. We seemed to have more information than any of the Neurologists to whom Mary Ann went during those nine years in OKC. One Neurologist had little to say in each appointment (ten minutes, sitting across from us at his desk). He seemed mostly to be asking us how often we thought we should be taking the one basic medicine. The next Neurologist questioned whether or not Mary Ann had Parkinson’s and concluded that the fact that the medication for Parkinson’s seemed to be working was all in her head. He made the gesture folks use to indicate that someone is crazy. Then at the end of the nine years, Mary Ann was hospitalized in Tulsa in a new Parkinson’s program. The point of the stay was to work out the medicine regimen. The staff administering the medication missed the timing of doses, the Neurologist dismissed a basic concern for timing the medicine away from meals high in protein (regularly reaffirmed in the literature and the presentations at the Parkinson’s Symposia). Mary Ann ended up with a complex combination of regular and timed release versions of the one basic medicine. The new regimen simply did not work. She became very debilitated quickly.
It was at that time that the move to the parish here in Kansas came. Mary Ann commented last evening that the move back to Kansas, even though not back to Kansas City itself felt good to her. She liked being close again to our friends in Kansas City. Mary Ann is not the sentimental sort. For her to say that was a very significant affirmation of that friendship.
When we moved to here, Mary Ann went to KU Med Center and some of her best years followed. She was willing to be open about the diagnosis. The latest of the medications that help the basic one work more effectively worked well at controlling her symptoms. She did not work any longer and had time to get to know people here. When finally the Volunteers were needed and began coming, friendships grew at a rapid rate, many of them.
As I look back, I suspect that Mary Ann’s resentment of me for taking her from KC was more a function of the struggle with Parkinson’s than anything else. The people in OKC were as warm and loving and accepting as anyone could have hoped for. Through my ministry, I developed some of the most meaningful relationships I have ever had and still cherish them. Busyness while doing full time ministry here did not allow for much contact, but the feelings remain. Mary Ann and I did spend some time together with other couples in the OKC congregation whose friendship we valued very much. We remember them fondly even though circumstances have not allowed interactions since then.
It continues to seem that since retiring, past relationships, those that have a long history are coming into focus to a greater extent than while I was busy with the day to day challenges of ministry. I suppose it is mostly the obvious, that there is more time to think about the past. I am sure it is also a way of filling the validation gap created by having days empty of the multiple tasks with potential for external affirmation, measureable successes and failures. It is a time to process the impact of relationships, as well as look through the layers of meaning to be found in past experiences.
It is clear that Mary Ann’s assessment of the journey and my assessment are much different. Mary Ann has the Parkinson’s, I see it and live in close proximity to it. She more than I, but we are both impacted by the consequences of the Disease. However our experiences of it differ, we are living through it together, one day at a time.
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The Caregiver Calling 