Leg Cramps and other ramblings

May 23, 2004

Candy, For the night leg cramps, drink a bottle of tonic(not diet)

before bed, it works for me most of the time, it is the quinine.

This was suggested to me by my doctor.

Tonights' mail touched me, its hard to know what might happen to

us all, hard to live knowing that things most likely will get worse,

and the activites that we love and need may be at any minute

curtailed or ended. It hard to watch my mom lose her ability to

walk, her freedom to drive, and it becomes harder( and makes me feel

selfish) knowing that it will be me in twenty years or sooner.

Then on the other hand when I found out that I had CMT I started

to live my life differently, to leave a twenty year unhappy

marriage, with no money and two kids, at the chance of being happy.

To climb some pryamids in Mexico even though I was afraid of

heights, and my balance. To walk across a swinging rope bridge over

an incredibly deep gorge during a thunderstorm because there was no

other way to get back . To start to admit to my disease to others

and hope for their understanding. To spend more time with my kids,

to laugh aliitle bit more often, to put my life's problems into a

proper perspective. So, it sounds corny but, maybe I wouldn't have

been so brave, gone alone and climbed hills in SanFrancisco( Ever

so slowly and while I still could), get married and buy a house with

a second story( I am going to climb these damn stairs every day that

I still can) unless I hadn't known that every day was precious, and

that time was so very short. In some ways its been a gift, a

horrifying reality stopping gift, but one that forces me to make

choices and decisions...do it today. Enjoy today. Feel good or bad

today, but be thankful to feel.

" Rage, rage against the dying of the light " , I quess that has been

my decision. No, I am not an eternal optimist and there are days

where I don't function well emotionally or physically, and that the

tears don't stop. Then there are days when I know that if I can't

paint or sculpted, I still can still teach, direct a movie, write a

book, encourage somebody else, take on politics, care for others,

and just look at the wonders around me. So I quess that is how we

all get through a day , a week or a life time.

Thanks for listening, I say this sincerely tonight and yet I am

still frightened, it is nice to know that there are you to talk to,

and that you understand.

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