TheBanyanTree: CMT journal

[LLDeMerlè]

What really baffles me is that when I give someone the news, often, about
half the time, they say nothing.  Not a word.  I find this sort of
bewildering, but have now decided that I like this response better than the
alternative.   Actually, the response I like best is the rational and
logical one, where people tell me that it’s not a surprise, it doesn’t
change anything, these are only words.  That’s what I told myself the first
week, until I had to tell my father.  I got a little shaky after that, and
later, talked to my aunt, who was very distressed.    My aunt and I
discussed it the same day, and she was very distressed, which upset me
because I don’t want people to be upset.  If they get upset, I might get
upset and if I get upset, I might never recover and I don’t want to be a
wimp.  It’s so unbecoming.  It’s not like me to fall apart, in fact, I
usually operate at peak efficiency during crisis, so, who knows? The
challenge may spur me on to magnificent things.

So, the confusion over Charcot-Marie-Tooth Disease renders some speechless
and myself
well.  I want to sleep a lot, but when I try to sleep, I’m not
sleeping so well.  I lie awake.  I feel the comfort of my husband, his warm
body steady and reliable, comforting me as if he were awake.  He’s here.
He’s not going anywhere.  He’s calm.

When we talk about wheelchairs, he is perfectly calm.  When I stress over
losing my hearing, he says, “We can take care of your hearing and get it
fixed.”  Vertigo is a continual adversary, but I seem to have won the battle
with my feet tipping me over in their rigidity by wearing thick-soled Keds
sneaker-type clogs.  They fit well and keep me from stepping only on one
side of my foot and not noticing that I’ve done so due to the inability to
feel what my feet and legs are doing.

I bike and bike and bike, mostly through European countries, through the
indulgence of travel shows in my living room.  I practice yoga to fight the
rigidity in my muscles.  I exercise my ankles.  I massage my feet and legs
with lotion to loosen them up, and although I have all of these things that
I do, still, sometimes fear toys with me, circles around me ‘til it finds a
weakness, a crevice to enter by and then it runs ice cold through me and I
just can’t get warm.  I hope this will pass.  


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"There are only two ways to live your life. 
One is as though nothing is a miracle. 
The other is as though everything is a miracle."

Albert Einstein