There was a time, when I was younger and more spirited, that my
relationships bounced from one woman to another. The sense of youth, of
new-found masculinity during the late teens and early twentys, seemed
endless. Some people might say that I was out to prove my masculinity, but I
would argue against that. Doubts didn't exist, just the desire to experience.
Twenty-three years ago, I meant someone in whom I found all the qualities
that I could ever want in a relationship. Within days of our meeting, it
seems, the semi-insane drive to wander from one relationship to another came
to a halt. I suddenly became at ease with myself, and the raging fires of
youth became the gentle flame that kept warm the desires of our marriage.
There has never been a great urgency in our love-making. We were secure in
our love for one another, gentle and caring in our desires. Frequency reports
from psychologists, who had little else to do other than ask intimate
questions, had no affect on us. When we wanted, we did. If we missed two
weeks, it didn't matter. Raising two daughters while both of us worked, the
stress and strains of day to day life sometimes made the quiet moments
between lights out and sleep the only time that we had to ourselves, moments
that we spent in soft whispers or in a gently hug.
As the seasons change so do our lives. As much as we try to hold on to a
lifestyle that we find enjoyable, so to do outside forces place before us the
obstacles that we know as challanges. For some it might be the loss of a job,
the death of a child, the pain of cancer. In my case it was a diagnosis of
Parkinson's. I've gone through the anger, the guilt and the depression. I
fought and yelled and screamed and kicked and finally came to realize that
nothing I could say or do would make the monster go away. It's here to stay.
Like an unwanted live-in guest, it's here every waking moment, wanting
attention, demanding recognition, insisting on being a major factor in my
life.
There is no doubt that the physical problems associated with PD affect
virtually every facet of our lives. We lose our jobs, we stop driving cars,
former friends drift away and, if we are lucky, new friends come. It would be
unreasonable to expect it not to have a major influence on our marriage. The
balance of shared responsibility, of equality in duties, becomes a thing of
the past as we enter into the phase of caregiver/patient. Slowly the duties
of marriage, of day-to-day living, become more the responsibility of the
caregiver, as the patient becomes unable to do the things once done with
ease.
Being a male, I can only relate this from a masculine point of view. I
would think that females feel a parallel sense of loss, a deep change in the
sense of sexuality. The essence of manhood, the self-assured acceptance in
the world of football and cars and Saturday afternoon lawn mowing, of having
a few beers with the guys, of hunting and fishing and hanging around the
hardware store fade into history as the new world of medications, stumbling
walks and shaking hands moves in as a replacement.
Within the relationship of marriage, the essence of sexuality also
changes. The questions arise within ourselves of our mates' desire within the
scope of our physical appearance. Of course we are the same person, but love
and desire sometimes take separate paths. The concept we hold of ourselves
becomes different, feelings of self-worth, of acceptance, become clouded by
our disability.
This is when love must change. It must become wider than before, more
willing to accept the faults, the failures and the physical appearences.
Either accept or fade away, to become just another memory. Love-making either
comes from the desires of closeness, caring and deep bound love or a
desperate attempt to regain a lost past.
As often as we try to rise above the physical, we are reminded that we
are physical. We cannot deny our existence - physically, spiritually or
sexually. To do so is to admit defeat to our disability, to give up a part of
our lives, to let part of ourselves die.
I am blessed to have a caregiver which shares with me the strength of
love that allows us to see sexuality beyond the physical. On the porch at
sunset, watching the pastels of the day give way to the stars of night, or at
three in the morning when I scream out in pain from a combination of leg
cramps and twisted muscles and tremors, she is there, holding and caring,
willing to accept me for what I am. When our desires lead to caresses and
nowhere else, I know our love is deep enough to find satisfaction in a gentle
touch.
But still, somewhere in my mind, are the doubts. Why? What if? Knowing
it's going to get worse, I try to see into the future. Five, ten years from
now, what will we be like? What if the situation were reversed, if she had
the disability and I became the caregiver?
Sexuality and PD is a very sensitivity subject for each one of us. It
hurts to know what the future holds, to see others far more advanced in the
progression than I. That isn't what I had in mind when we married, when we
had our first child. It isn't what I pictured for retirement, for our "Golden
Pond."
When it comes to surveys and statistics, I think it really doesn't matter.
That I don't have 2.3 orgasm per week, or 3.4 attempts, is not what my life
is all about. At this point in my life sex and love are the same, they are
held together in the eyes of my wife, in a smile, in a soft and warm kiss.
How many times have we made love? Once. It began the moment we met, and will
not end until both of us take our last breath.
