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Joan, I've just been catching up on postings - yours has be fighting' mad. Not at you, but at knowing that what you say is true, that I will have to "come to terms with my disease" time and time again. On Friday last week, several people came to me at work commenting on how I finally "sound much like my regular self again". My boss said I'd "been testy", a co-worker said she "was afraid to approach me because she thought I'd bite"! Well, I had been "coming to terms" as you so aptly put it with not receiving a new position at work that I have been working for since I began working there. Actually I have been doing it as "additional duties", but now they recognized it was becoming too much for me and created the position I've been advocating for so long and asked me if "so-n-so" was capable of doing the job. Their intention was to help, not hurt, but that's not the point. The point is that my anger was so visible to everyone else and transparent to me until they called it to my attention. I HAD been "testy". At home too, not just at work and couldn't name what it was that was making me feel that way. It wasn't the job so much, it was the "terms". I am pretty new to this disease, and have never been very good at "naming" emotions. So, thank you for helping me see the truth. As angry as I am right now that it is not fair, I know eventually I will accept. I am going to keep your e-mail to remind me. I am sorry you are in a chair, but you seem to have a spirit that will let your new seated position lead you to a new "view" on life. God Bless, Melanie -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]]On Behalf Of Bob & Joy Graham Sent: Monday, December 17, 2001 9:41 PM To: [log in to unmask] Subject: Re: Middle of the night... Joan, A belated thank you for posting these middle of the night thoughts. The use of a wheelchair for Bob has also just recently been foreshadowed, so your post was well timed. Sincere good wishes JOY Graham >This is a requiem. > >It is a pity-party for my old life that I need to get out of my system >and to get over. > >It hurts so badly….but I shall survive and life will go on as it always >has; I will feel strong again and the sun will come out tomorrow….but it >is late at night and I feel this awful pain of letting go. > >Today, my life took a turn and I can never have it the way it used to be >or even make believe anymore that it will ever be the same again. > >I am hurting and sad and so very angry. > >You see, today, after months of talking about it and putting it off and >denying that it was even ever real, all the pieces came together: my >neuro wrote me a script, a letter saying that it was a real necessity, >my insurance company oked the entire thing and a very nice man came to >my house this afternoon with 3 wheelchairs for me to test drive. > >Now it’s all over but the shouting and the delivery of my new >jazzy-cobalt blue, 28 inches wide, turns on a dime, power wheelchair. >She’s a beauty all right and I am determined to make my peace with >her-just as I did with my blue 28 inch high Schwin back when I was >growing up. But that was then and this is now. Back in my youth, my >bike was my declaration of freedom; I was the oldest of 6 kids and my >mom didn’t drive and my dad traveled 5 days out of the week. My bike was >my get out of jail free card and my get out of the house full of >brothers and sisters and my letting my pony tail free so that I could >think straight. That was then…I don’t even think that getting my >driver’s license ever gave me the thrill of waving good-bye and heading >out to face life on my bike. > >But this is now…Now because of this stupid disease that I have come to >terms with over and over again has me down for the count once again. > >It is the thought that once I begin to use the chair, it will become >easy for me to get around in and it will become a habit. For so many >years, I prided myself on my independence: before marriage, during >marriage when Stan was sent to Dessert Storm and after he came home-I >tried and succeeded in maintaining my independence. Even since the >diagnosis of my PD 11 years ago, I have managed to go my own way, never >looking backwards or allowing any time for regrets. > >That all changed today. It is another milestone in my life that I cannot >hide from or pretend that it isn’t there. It will be there all right, in >all of its shiny glory. It is a rite of passage like when the head neuro >at Mayo said, “Yes it is really Parkinson’s Disease” or when a judge >finally said, “Your Social Security Disability which you have requested >is granted” and one of the daily concessions that People Living With >Parkinson’s make just to accommodate this damn disease. > >I was so proud of the way that I had handled this, I likened it to the >oyster of life: when you get a piece of shit in your shell it irritates >and bothers you until slowly your mind wraps itself around this irritant >shaping it and polishing it until one day, it becomes a pearl. > >This was my pearl…I had shaped it with the thoughts of how much more I >will be able to accomplish once I no longer have to spend all of my >energy on staying vertical and how much more time I will have when I no >longer must spend so much of my day hauling my fat ass up off the floor. >And won’t it be a relief not to fall 25 times a day- cause, boy, this >ole bod sure don’t heal like it used to. > >I know in my head that all of this is true and in the daylight, sanity >will return to me but it is the middle of the night and all I can think >of is how, at 50 years of age, my life will be lived out seeing the >world from a seated position. > >La chiam!! > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn Bob & Joy Graham 37 D Fremantle Village Lot 1, Cockburn Rd South Fremantle WA 6162 Australia Ph & Fax (08) 9430 4730 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn