From One Perspective
by Christine Hall
“You can observe a lot by watching.”... Yogi Berra
"Where are you headed?" asked the customs officer at the border. "Northern Kentucky," we responded.
"Why?" He questioned in a way that implied that anyone who went to Kentucky in January might not be mentally fit enough to enter the country. Doubting that he had the time or inclination to listen to a long story, we said that we were going to visit friends and were quickly on our way.
We could have kept him busy for an hour or so with the background for our visit. What would possess two middle-aged women, who are not particularly adventurous to leave their husbands and the lovely warm climate of Canada in January and drive ten hours to visit the almost equally warm state of Kentucky? To get the answer to that question, you'd need to go back in time a few years.
Back to a time when, newly diagnosed with Parkinson's disease, I went on the internet searching for answers and found not what I was looking for, but instead something that would change my direction in life - friendship with other like-minded and like-bodied souls. My Internet research took me to the MGH forums and chat rooms, and there I met people who felt the same way that I did and were willing to talk about it. It was comforting to find that other ordinary people were coping with the very issues that were
driving me crazy, and it helped to hear how they dealt with it. Several of us got in the habit of visiting the Parkinson's chat room on Friday nights around the supper hour and it became a favourite part of my week to anticipate these chats, which usually quickly developed into a laugh fest or "lol" fest, as I came to learn the jargon. Sometime we would say how great it would be to meet some time but, since we all lived in different areas, it seemed like idle chat that would never develop into anything more. But unexpectedly,
during spring break that year I had the chance to meet a couple of my newly acquired "net" friends. Seeing them in person brought a reality to those "user names" that I had become familiar with. Almost from the beginning I felt at ease with a few of these people. It seemed that we dispensed with the pleasantries of early friendship and moved right into the serious stuff.
Two of these people became special friends to me and we were anxious to see more of each other. People advised caution, warning that the Internet was a dangerous place to find friends, but I sensed that this gang contained no axe murderers or pretenders, so I jumped in. Visits back and forth were very rewarding and we began to meet even more of our Internet friends.
Meanwhile, parallel to all of this, back in my non-Internet life, I was also learning to cope with having a progressive neurological condition. My husband and I joined a support group, which initially was of little
help at all. But, on the advice of a friend, we persisted and slowly we found a niche for ourselves within this group also. We began to make friends with some of the group and found that we had lots in common with many in this group also. We began to socialize and become more involved. Again we found an acceptance that made us feel supported and, here too, I found a couple of special friends who I knew would become important to me. People advised caution, warning that I should not become too immersed in Parkinson's disease but, since non-immersion was not an option, I again went with my instincts and jumped in. I have never regretted either of these decisions. Immersion in Parkinson's disease has proven to be non terminal and Internet friends have never made any threats on my life.
I now had three groups of friends: my online friends, my support group gang and the BPD (before Parkinson's Disease) group. At first they were all quite separate in my mind and in my life, but over time the three groups have begun to blend together. During visits back and forth, many have been introduced to each other and become friendly. Some met each other online. Now all these people form a network of friends. I often forget which friends came from where. We are spread out all over the continent.
A special friend from my support group finished work last year and, since then we have been going to physiotherapy classes together. We went to Nassau for a few days together last year and had a good time. Our husbands survived for a few days without us, so this year we decided to go visit other friends in Kentucky while their husbands were away skiing. At first we were going to take the bus down, but I had a notion to prove to myself that I could still tackle a drive like this so we decided to go in the car. We
spent two weeks fussing, packing and planning for our trip and left our husbands to their own devices. We set out with some trepidation and that is how we came to arrive at the border one Friday afternoon.
We made it to Kentucky safely, taking it slowly and stopping along the way. We had a wonderful "girls" week full of talk, laughter, self-indulgence, and of course, shopping. Our Kentucky friends had arranged all these treats for us and we took full advantage of a chance to do what we wanted without pressure of time and housework. The full details of our trip there are difficult to give because they fall into the realm of intangible experiences - you had to be there. We did discover however, that Northern Kentucky is a great place to visit in the winter despite what customs may think. We also learned that oatmeal must be uncooked to work well as a facial scrub and that it takes a more than a little peroxide to make dark hair blonde.
No one would willingly assume the burden of having Parkinson's disease. However because of this disease, my life has been expanded and enriched in many different ways. I will never be glad that I have this disease but I am grateful for what it has brought to me in the way of friendships.