Happy Anniversary
Feb. 27, 2:35 AM -- Greg

Either aj or I has a bad memory -- no, both of us have bad memories. But speaking now of hers, she wrote tonight in her PLWP journal that this was the day she was diagnosed. Is she confusing the date of her diagnoses with the date, today’s date, that she first wrote me? It was about two posts I made to MGH PD that caught her attention one February afternoon as she sat immobilized with a cast on her leg, depressed and bored.

She's sleeping in the other room, having gotten to bed at a decent hour for a change. Uncharacteristically, although she is a generous and sweet woman to a fault, she rarely asks me to come in and say goodnight to her if I end up staying up later than she does. Perhaps it is because we spend so much time together as it is, both in physical proximity, and in the common experience of life. But tonight she wanted to be tucked in.

She said something very interesting on our way home from dinner with friends tonight. She said “I wonder
about the time when we will no longer be able to drive.” That, of course, means that we will have to move into San Francisco or an East Bay town like Oakland or Berkeley where there is dependable public transportation. For the first time I heard her express the sense of otherness that I have myself been feeling for the last several months as drop by drop by drop we slowly come into the awareness of what it is like to have had Parkinson's disease for seven years. “I'm not sure I want to move back into the city,” she said. “Why, because of the crowding and the difficulty maneuvering around on the streets?” “Well, that’s part of it, but it's more than that. It's the fact that we are becoming so different from them.”  “From whom?” “From all of our friends who are healthy. They lead different lives than we do. They experience life differently, and the difference is becoming greater and greater. I'm not sure I want to be around them quite so much.”

I thought about that. She was thinking about a dinner party we went to that included two couples whom we
like very much. Although I didn't it feel that night, I have felt it more and more myself. I observe the people have known for 20 years and more. Men and women who are my age, wandering into their 50s, some anticipating it as an opportunity, some feeling a dread that creeps over them as they really start to feel, to know, that life is short – no longer simply a concept in their minds, but a reality in their lives. But what they have in common, fearful or not about the future, is an energy and quickness of step and thought – overall good health. And that good health gives them more often than not a feeling of relative physical comfort, even when they are tired. It is nothing like the fatigue that people at our stage of Parkinson’s disease experience most of the day. We have all but forgotten what it must feel like to be them.

Those of our friends who look forward to growing older are basically looking forward to slowing down, to taking life easier and more simply. And that is okay, because "slowing down" for them is all tied up with an increasing unconcern about how they appear, less concern about the opinions of others about them, and a greater capacity for concern and empathy for others. They have lived to be 50, and most of them have learned something about what is important in life and what is not. They are generally becoming less materialistic and more philosophical. And watching their gentle dissent into their own middle age does, I must say, at times fill me with a sense of the contrast between them and us which interferes with my enjoyment their company. Because although we too are experiencing all those good things that come with middle age, we also feel sick most of the time. Seven years of chronic progressive illness. It separates us from our healthy friends a fundamental way.

The people who will stand for us at our wedding this summer, commonly known as the best man and the matron of honor, will be two of our of our closest friends, as will our flower “girl.” And they will not only
share the same gender, female -- the thought of having a woman as my best man fills me with a rather devilish glee -- they will share PD with us. Our friends at the wedding will be predominantly Parkinson's
patients, because we like all of them, we love a lot of them, but also undeniably we seek them out as one seeks out someone who a common passion or interest.

So I think I can understand this woman who will become my wife. As always, she sleeps deeply but without much rest. The increasing problems of dyskinesia and tremor plague her sleep and momentarily wake her, troubling her dreams and leaving her groggy in the morning. Mercifully she is largely unaware of the way her body jerks and trembles throughout the night. This unusual sleep is simply one of hundreds of odd Parkinsonian experiences that separate us from the herd of the healthy. And so her community, and mine, is increasingly independent of location. Her community is in Maryland, Wisconsin, D.C., Philadelphia, New York, Tennessee, Kentucky, Illinois, and various cities within California where PD patients have bumped into us and become friends.

It is indeed an odd time. Our relationship has grown stronger these past three years. We work together, we
play together, and we share a disease, a serious illness. And looking back on those days when I first spent time with aj in New York nearly a year after we had started writing to one another, I think of how relatively untouched we were by the disease. We were sick, and we knew it and we felt it, but we didn't know, except by the dim and opaque window of our imaginations, how we would feel in the future. We could not know then how much more sick we would feel in 2 1/2 years. Just as we cannot know, again mercifully, what is like to be one of the many friends we now have who have gone through what we are going through and must think, just as we think now about those newly diagnosed, "if you only new how much worse it is probably going to feel."

At the same time, given the fact of our PD, we wouldn't have it differently. We both know how lucky we are to have each other, in sickness or in health. That we both have Parkinson's has made our lives physically more difficult, but it has made our emotional lives so much richer, consonant, knowing what each really goes through as we slog our way ever deeper into the Big Muddy, holding hands and trusting that the other understands and will help when help is needed.

I like to believe that I have given her hope, an emotion that I don’t think she allowed herself for many years for fear that she could not survive the disappointment if her hope was shattered. It has given her a strength and resilience to fight back against the disease with remarkable fortitude.

I know what she has given me -- through the example of her own life, and by allowing me to care for her so much without conditions: the capacity, though not without lapses and all too frequent exceptions, to put the feelings of another human being above my own. Those who have known me since I was much younger know that that is no small gift.

And one other thing we have both found remarkable considering the people we thought ourselves to be. We generally are largely unafraid of what lies ahead. We were both certain that we were the kind of people that could not face a disease like this one, but so far we have proven ourselves to be wrong. I suspect many, many people with Parkinson's and other diseases have found the same thing and been just as surprised as we have.

So, three years ago today a tall woman in a Brooklyn apartment with not much to do wrote an EMAIL to a man whose writing she liked, being a writer herself. And being the kind of guy who enjoyed being told what a swell guy he was, and he wrote right back and never stopped. And, one way or another, we will live happily ever after.

Happy anniversary aj.

Greg.