"Ground Control To Major Tom", David Bowie (he's a man with a plan B and possibly plan C)

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!

As My Brain Empties of Some Things, Others Come into Focus

Hello Fellow Travelers!

I have a lot of time at the gym to ponder the "big" questions, life and death - and shoes and sugar.  When you spend hours riding and walking to nowhere you can consider a lot.  Legacies, for example.  Who leaves them and who doesn't - and why.

I've considered my paternal grandmother at length lately.  I saw her in her  final years declining in health and independence.  She was a strong woman who lived by her own rules.  She had an alcoholic husband so she divorced him when being divorced was frowned upon.  She was a single mom before it was normal.  She was stylish and appearances were everything to her.  I was visiting right before she passed away.  Technically she died of cancer but she was 90 something.  When she went it was fast.  The cancer had spread all over she didn't know me anymore and my parents were in the process of moving my grandmother out of an assisted living space to a hospice care house.  I helped my father remove her possessions again from the assisted living facility to a storage locker.  I recall glancing at my dad as we passed each other coming or going and thinking he looked like he was in hell.

We threw away most of her things because every piece of fabric had a nasty perfumey odor that permeated everything.  My grandmother neatly and obsessively saved everything and I mean everything.  She was a neat and tidy hoarder.  My grandmother was a fastidious woman so I really felt bad for her losing all her senses and abilities, she would have hated people seeing her like that. I hated seeing her like that.  She was a good person who lived a good life.  That's all there is?  Nursing homes and depending on strangers to take care of you?  We're supposed to look forward to that?  Hopefully you have a child someplace that takes care of you, even then you have to be on decent terms with your child's spouse.  Unfortunately, if you live long enough that spouse might have a lot of influence on the end of your life.  Is that the best we can hope for?  Some photo albums and more cancer?  It's not right.  Was Tony Soprano's mother right?  "You are alone when you die".  Even with the best intentions the aged get a raw deal.  My grandmother left Washington State and moved to Phoenix in the hottest month (July) of the hottest year on record.  Did anyone even ask her if she wanted to move?  Probably not.  Did my grandmother even like Arizona?  Probably not.  She raised my father in a house full of women.  When he had a family of his own he had a house full of women.  Maybe one prepared him for the next.  Who knows?  My father is a man of few words.  Now that I'm a woman of no words I appreciate people who pick their words carefully.

I have had this experience lately when seemingly difficult answers to really difficult questions come to me with complete clarity.  It seems to coincide with a certain level of activity I'm reaching at the gym.  So I'm riding 30 or 40 miles to noplace the other day when I pondered the "Grandma Question" again.  The answer came to me like I'd always had it:  The legacy my grandmother left, was my father, the only thing 3 generations of women all agree on.  My dad is widely regarded as a stand up guy, a nice Grandpa and liked by all who meet him.  Because of how and who raised him my father is a tremendous husband and father.  He has always been a rock for all of us.  My grandmother never took credit for my dad neither did he.  As I've traveled along this very scary and pitiless road, alone, it's good to know that he'll be on the other end.

PS - I know I've ranted before about fashion trends that looked so ridiculous I was not sorry to miss them.  One thing my mother does really well is keep us stocked in periodic reading materials and one magazine I like is In Style.  It's big and smells good what's not to like?  The magazine is full of fashion, specific instructions on what to wear and when to wear it and trends and the celebrities wearing the trends.  Some trends look great and make sense.  Straight, retro hair that enhances pale faces makes sense. I get it.  Pops of color on lips and on eyelids look good too.  What doesn't look great any way you wear it?  Gladiator Platforms!  With a dress!  C'mon!  These "shoes" might work with pants (and I say, "might" because I think a Gladiator peep toe is so silly for so many reasons)  these "sandals" when worn with a dress of any length cuts the leg off visually at the ankle.  The eye is predictably drawn to where the leg ends and the shoe begins and it makes the leg appear shorter and the feet appear bigger. And who wants to look like a gladiator But the trend that really chaps my hide, and comes around every thirty years or so is black/brown/gold lame'/green nail polish.  Do we have The Twilight Saga to thank for this particular old-is-new-again nail trend?  Because I don't care how many celebs wear these colors or how hard the Revlons and Chanels pimp these colors out to us, at first glance it looks like the wearer has had her hands in something filthy and brown/black/green.  My best friend has been wearing wine colored polish since we were in High School.  You know why she could and can still rock that dark color palette after 30 years?  Better application?  Accessories that enhance her color choice?  Probably, but that's not the reason that she can wear the dark colors better than most.  The reason she could successfully wear dark colors on her fingernails is simple:  She's a small person with tiny hands and small fingers.  Like a doll. A pale doll from the creepy cover of an Anne Rice novel.  You know a porcelain doll with eyes that follow you everywhere.  My friend is not at all creepy but she is small framed.  She had the foresight to stay out of the desert sun and kept her hands pale and diminutive.  In sharp contrast I have huge paws at the end of long arms.  Dark nail colors (if I wore them) would make me (and reasonably, I might add) a "person of interest" in local stabbings because dark nail polish on my long, veiney hands looks like I caught and field dressed a deer with my bare hands.  The only thing I appreciated about Sarah Jessica Parker in Sex & the City was how her large, veiney paws never had polish on them.  Sometimes she wore silly outfits but her hands were off-limits to the Fashion Police and the trends.  You go celebrity icon!