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David Boots .... whoever you really are (rather than a few lines of type across my monitor periodically) and wherever you are, after reading your "Open Letter to God (Revisited)," I felt an immense sense of kinship to you. In it's way, your message probably has encompassed much of what many of us here on the PD list go thru and feel each day. After reading your comments and knowing so intimately our respective and collective suffering, I swear, it's a wonder we don't all just pick up and check out!! I guess it speaks volumes for that indomitable human spirit (hey... maybe it's just we're afraid that the cure for the "thang" will be discovered the day after we 'do the deed?") <rueful smile> Whatever the reason, it seems most of us stick around for the long haul. David - I'm rootin' for ya! Get that pallidotomy... and I pray you'll have at least the same (or better, 'cause the results on the side that was done are great) good fortune as I did nearly two years ago. For whatever it's worth, I'm sending you a warm and loving virtual hug, 'cause I feel close to you at this moment. Hang in there, m'friend! Barb Mallut, [log in to unmask] ---------- From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf of David Boots Sent: Saturday, July 27, 1996 9:31 PM To: Multiple recipients of list PARKINSN Subject: Open Letter to God (Revisited) Open Letter to God (Revisited) A year ago today, I sat in front of my computer (sore, hot, and depressed) typing an "open letter to God". I was frustrated at the dyskinesia I was experiencing more regularly and embarassed because of wetting myself a short time before when I couldn't work the key to open the door to my apartment and/or manipulate my zipper. I talked of "not wanting to go on living" and the possibility of getting a pallidotomy at Kaiser Hospital here in California. It was a great release for me putting my feelings in writing to a whole group of strangers and "telling PD secrets" that were making my world seem like some sort of twisted dream. I'm still planning on having a pallidotomy done at Kaiser (Sacramento); my surgery will probably be in September (the original date was mid-May). I've completed the preliminary videotaping of "on and off performances" that will serve as a "before surgery" marker (and a reminder of how tough things were). I'm hoping that the benefits of the surgery will be great and that any complications (slurring speech, etc.) will be minimal or nonexistent. While grocery shopping recently, I had trouble getting my wallet out of my pocket and returning it to my pocket once the clerk had taken out the purchase amount. A woman behind me in line saw that I was struggling and helped me with my struggles. As I was leaving the store, she came up to me and said "I just want you to know how brave I think you are" (I didn't know how to respond since I often buy groceries when I'm hungry and/or in need of supplies and never considered this an act of bravery). So I asked her "What do you mean?". She said "You know, to continue to go out in public like this". I realized that I must look pretty bad at times to draw remarks like this from total strangers. The symptoms and side-effects just go along with the rest of PD; trying to hide this part from others seems more difficult now ..... but I still try sometimes. I think I've become more reclusive since a year ago. I was invited to a 4th-of-July dinner party next door and declined at the very last minute. The thought of answering questions about "what I do with my time" or "tell me more about PD" gave me much apprehension (and dyskinesia"). The fact that I did not share the same dreams with this 40-something crowd also bothered me (I'd overheard some of the people talking about their careers, families, homes, and vacations). It's very difficult to explain to people not informed about PD that a good day for me is "being able to shave in the morning, go shopping OR do laundry, eat a meal out with semi-confidence, and write or call friends later in the evening". For some reason, I was reluctant to give up pants and shorts with zippers and shirts with buttons ...... no more. My summer attire is shorts and a nice T-shirt (period). The winter usually finds me in shorts or sweatpants and T-shirt and/or sweatshirt (have any of you with PD found your metabolism running just a little hotter than others?..it takes quite a chill for me to be bothered). Making this "YOP fashion statement" has made all the difference in the world (public restrooms no longer fluster me). I try to utilize "on" times to reduce the number of "accidents". This is really hard to take sometimes since I find myself identifying more with people's parents or grandparents in discussing things like "I lose my balance sometimes during the day and I fall or bump into things"..."Yeah, I do that too". I look at the bruises that appear from time to time on my arms and legs and wonder "what is my rate of progression?". I talked to someone in this group who is in their early 50's recently. This person told me that their PD had advanced so quickly that they were thinking of checking into a nursing home. I asked "You're really going to ride this thing through to the end?". They said "I've thought about suicide; how about you, David?" I replied "Who hasn't?. I told them that the odd thing about thoughts of suicide is that when I'm "on" and my meds are working, I rarely think about it...life is do-able. But when I'm "off", the thoughts creep in and I realize that I don't have the dexterity or initiative to follow through on anything (ironically, this is a type of built-in safety mechanism for folks with PD). I've come to recognize these periods as "the PD-blues" .... when life seems bleak but I do know that it will eventually pass. I heard someone explain it in this way: "I am NOT responsible for the first thought that enters my head. I am responsible, however, for entertaining that thought". I still don't like living with PD;just getting through each day often seems like one of the "great labors of Hercules". I continue to do what I still can while patiently awaiting surgery that will give me back some of the time that I thought was lost forever. I hope they fund/find a cure soon for everyone's sake. Thanks for listening. -David Boots