to pick me up at the halfway point (Centralia, WA). We drove to ten miles outside the Portland City limits and then he joined me on the ride across the finish line. I had to finish, somehow, yet my body was all over the place. I was one of two top fundraisers, and someone had promised a picture at the finish line, so I completed it.
You could say this is evidence that I am successfully fighting off Parkinson's Disease. I've had this sonofab*tch disease for over ten years now. Some days are tolerable. Some days I feel like gravity has been turned up and it takes all of my stamina to make it upstairs to find my meds at med time. And some days it doesnt feel good to move my body. I noticed this last week, during a modern jazz/ballet dance class. It's difficult to explain, just that the slowness and the stiffness combine so that I'm just uncomfortable, moving.
After a lifetime being a jock, this is disheartening. When I finished that long bike ride, I threw the big heavy clunker in my garage and havent taken it out since. I hate the bike. Its an upright "cross over" and made for short city commutes, not long rides where weight matters. The gears have been adjusted, but still chatter and after the ride was over, it was as though the 76 dollar tuneup was worthless.
But the fundraising I accomplished for our local NWPF will help continue the programs developed to allow PWPD a more "normal" quality of life. When I was first diagnosed, money and focus was on a cure for PD, which was of course what we all wanted. But now~with a person being diagnosed with PD every 90 seconds, world wide, it has become obvious that the cure is not coming anytime soon. We are still trying to understand the human brain at the molecular level, which is like a baseball player being sent back to the development league to work on his "basic skills." I was duly awarded a plaque with my bib number on it from the NWPD and it is hanging on my bedroom wall. I look at it every morning.
I see it as not an accomplishment, but an acknowledgement of the fact that I still have a progressive neurological disease. People who love me think it has cured me, but it hasn't. I attended my brother's second wedding in KC, MO, several weeks ago, with my daughters. I charged the trip on my CC and my mom helped by paying the hotel bill. Otherwise, I'm too poor to travel. This hurts a lot. More than hurts, but it is what it is...
I met a nice man who moved up here to pursue a relationship with me. He found a room share which will work for a few months, and is already looking for a position. He happened to interview with the NWPF as their executive director, but still has not heard back. I have been struggling with getting used to his ideosynchrocies and I find myself secretly afraid that I will no longer be able to fall in love because my dopamine is so low. I find myself repelled by him at this point, but it could well be because I'm reacting to his living here for a week. He has been abused in his past life and this may come up again. I pray its not me who does the hurting. My girls have both met him but won't give me their opinions; my therapist likes him and I'm just trying to accept him, warts and all. We have both discussed our mutual goal of creating a solid friendship, yet it has been much work. I find him difficult to assess, and he tends to withdraw quickly if there is any tension at all. He doesnt want me to feel tense or irritable or grumpy and yet this is how I feel at times. We are still working it out.
I am not in love, and this is troubling. But maybe, as I said before, it's a matter of not having enough dopamine to experience feelings of joy, reveling in the intimacy, attaching and bonding. I promised him I would wait until mid January and will do all I can to improve and build on what we have started. I realized sometime this past year that it has been a long long time since I have been monogamous. I know he is puzzled by my lack of affect, but it will be a rather long time before I will learn to trust him completely. He, in turn, doesnt like to feel as though he has to compete or have anything to do with the Ghost of Steve. I cannot blame him. Although I finally have admitted to myself that I did love Steve, bonded together through nights of my pain and his energy. He was an excellent care giver. He came along at the hardest time of my life, and we never had much fun. And I broke his heart when I came home from Peoria, telling him I had met someone who felt so much like me that we were two sides of the same coin. I still have that coin, hanging in my closet. I have had to forgive myself for mistreating/disrespecting Steve, but also allowing him to live a dishonest life with me. And for the dishonest life I myself led. I was taking it one day at a time, going though surgeries and recoveries and personality changes, and ...and...trying to get back to my work,still in denial about my PD.
In any case, I'm still alive, partially kicking, and settling in for a long winter. I have decided to begin my book again.
