Hello Fellow Travelers!
I don’t know when I’ll write again. I have undergone the first shunt
surgery, the temporary one and it left me with negligible results. I am still
as impaired. I have no ability to walk, talk or see. I have lost 90% use of
both hands. I still believe whatever is wrong is at a fundamental level: there
is no medicinal cure or therapeutic remedy that will be effective. So I’m going
ahead with the permanent shunt surgery.
My problem is this: If I can’t repair
my sense of balance and rediscover my “Place In Space” I will never walk again.
I have a very difficult time accepting that, in fact, I don’t accept it. I
thought the brain surgery I toughed out would stop the pain and the ceaseless
ringing in my ears. Nope. The only change that was noticeable I could print
legibly which probably has nothing to do with brain surgery. I researched and
researched for years and now I’m stymied about what to do next. I can’t take
much longer to figure this out. What can be done to regain my “place in
space”?
If I haven’t been direct enough let me correct that right here. If anyone
has any suggestions or knowledge of any means or method by which a person can
regain any neuro-abilities at all I’d love to hear about them! I currently
workout 120 minutes a day and spend 120 more minutes on neuroplasticity and fine
motor skills. I've seen no significant improvement following administering of
any medication or surgery. I’m very motivated and with these circumstances
excepted, I’m ridiculously healthy. I’m aging at the speed of a lot of this
country: I’m too old to be young and still too young to be old. I don’t
currently fit into either group.
Apart from a lot of thinking I've done, I am
usually pretty chipper. Every day is full of possibility again and I see that
everyone is doing the best they know how to. Nobody is disappointing to me and
I’m grateful as hell anyone cares about me at all. Is this what they mean when
they talk about “staying relevant”? Is this how Madonna feels? I am a lot
younger than Madge but there are zillions of people in my age group not being
marketed to. I feel like there is a big media gap for athletic females over the
age of 42. And morbid obesity is not a problem for me. (Yet)
Not being properly marketed to is vaguely irritating but is among the least
of my concerns right now (although if you’re female and in your mid-forties it
seems as though you’re supposed to slink away and die or something until you’re
55 an And then they have an entirely different demographic for you not to fit
into). Other people have made full recoveries in a year! What
is my problem? Can anyone tell me what to do?
Seriously... I feel as though something simple but dramatic is required here and I'm just missing it.
I don't have an alternate or "Plan B" to fall back on. Who does? David Bowie probably did. If the "Ziggy Stardust" thing didn't pan out as he hoped. Maybe he had "Yodish Twinkletoes" on the back burner all ready to roll out! Just in case. You know, Break Glass In Case Of Emergency, and that's glass to be broken so you can get to a big hatchet! What type of "emergency" necessitates a really big, hatchet? A really dire "emergency" I'm guessing, a huge one I can't even imagine. Any situation where a large hatchet might help is a bad situation I want no part of.
But I digress. I am not afraid of hard work. What I am afraid of is the vague and the indefinite. I am very afraid of what doesn't happen after the first 24 months (regaining your abilities comes to a standstill). I'm now afraid of what does happen (your abilities decline at an accelerated pace), and with every doctor trying to help and with every procedure, it takes a little more out of you and makes you a little weaker. I need answers damnit! Just the facts, Ma'am! I don't care how bad the facts are I just need them! Dates would be good too. If you do exercise A for X amount Y times a day= Z results can be expected in B weeks.
I will not live my "golden years" like a poorly played Scrabble game. (You know tiny words, only a corner of the board is used). I hope I figure out how to recover so I can do all the stuff I should have been doing for the last 10+ years. And do it really fast! Pray for me, those who do because I'm going back in!
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