"
I was by this point quite familiar with men, the way they glance at you and the
thoughts behind it. I knew I was looking at my next lover." - Ariel, In Defense of Tom
Today is Wednesday. Wednesday is one of those few days the
past months I had allowed myself to “play … somewhat. I play along in the
sharing game many writers have on Twitter called “#1linewed” – in which we share a
line of our writing, based on the week’s theme. Last week was “Opening lines”
from "WIPs" (Work-In-Progress novels), either from the novel itself or just
chapters.
Asian Plum Tree Against Sky c. CCWillow |
Today is the “hooks” at the end of chapters, as exampled by
the one I posted above. Hadn’t made it on to Twitter yet … I need to finish
this morning reflection first. But I will intersperse my tasks today with
posting #1linewed and reading those others posted. It has been replacement for
me of the open mic readings I used to go to.
I do get “hooked” on reading. And there is that exploratory discovery of
finding something new, not yet offered to the world. It is delicious!
But it does have me reflecting on my hooks – both real and
otherwise.
One of my disabilities is MHE – Multiple
Heriditary Exotosis. Yes – it’s a mouthful – but shorter than it’s previously
common name “multiple osteochrondromatosis”. Essentially they both mean being
born with your body making “extra” bone.
And while it is true it does make “bonus shapes” on your bones (i.e.
bumps or hook-shaped protrubances), it often does so at the expense of the
length of your bone, resulting in shorter limbs. Hence – it is the most visible
of my disabilities, it is why I am only 4’9 … annnnnnd 9/16ths. It may cause
uneven growth or even irregular growth such as a bowing of the bones - as some
of my “Bone Brothers/Sisters” in the MHE
Coalition have. In point of fact,my “Tiger” who I
consider to be the “great love” of my life, coincidently also has MHE.
I inherited it from my father, as did two of my brothers..
My son inherited it from me – in fact he had an MHE specialist four months
before he was even born, Ultrasounds already revealed bone spurs on his
frame. I have been relatively lucky with
MHE; I haven’t had the profound issues with MHE bumbs catching muscle and
tendon to the extent that my siblings and son have had. If the MHE causes pain,
I modified what I am did to lessen the pain. If that didn’t work, a steroid
shot to cushion th bone. If that didn’t succeed in making movement manageable -
a quick surgery to excise the extra bone & then “back to work”. I had my first MHE surgery at age eight, a
bone spur on my thigh that was large enough to stretch the skin. Over the years
I have had only half the surgeries my brothers have had.
Note – I refer to my luck in the past sense; good medical
care allowed me to keep pain manageable. I lost health care & maintenance
in January. Also recent research (and yes, I am one of the “subjects”) have
shown, despite past assumptions) that MHE bones continue growing bumps
throughout adulthood. So I have new bone bumps developing all the time. Now
that I am off my pain management, I am finding I have much more than I
realized, and many of them are hook-shaped. By “catching” (hooking) my tendons
and muscles, they are greatly impacting my walking and writing now. This
reduces my exercise and my stretching, resulting in tighter muscles and tight
muscles catch more often.
My financial downturn has increased my latent depression –
making it no longer latent. Incidences beyond my control had further added
stress … which resulted in my first heart attack the Spring of 2013. I already
knew I had the genetic predispossion – my dad suffered from heart issues twenty
years before he died, my mother seven years before her, & my older brothers
(all three) were getting heart bypasses. That, along with MHE, was why I was
such a proponent for exercise. Immediately after my heart attack I made some
changes – and was able to reverse most of the damage and get my heart back up
to snuff. But the stress I was not able to relieve – it has in fact
multiplied. The health maintence I had
benefited from on my job (BTW a job which played a big part in the onset of
that heart attack) is gone. My heart-healthy diet isn’t feasible right now with
no income and strangers providing my food. My chest pains and tightness in my
chest are now back. … And the brother just four years older than me? Had a
heart attack on March 6, he will have his second bypass next week.
I need to handle my heart’s vulnerability right now with kid
gloves. This means distancing myself proactively from additional stress. Not
putting undue strain on my body’s capabilities right now. And yes, - exercising
and eating better.
Stress is also really doing a number on my eyesight. And my
reading. I am experiencing a type of dyslexia on writing and reading the pst
three weeks that my doctor at the free Clinic is due to being over-whelmed. My
brain is doing strange things to cope; increasing or diminishing my eyesight,
swapping the order of letters & words. (I thought, until yesterday) that
this was a side effect of the meds). Names, faces and words that are familiar
to me are now becoming unaccessible from memory. Two days ago I literally did
not know how to spell my own name for five minutes; this was the second time in
a week that it happened. I am finding
these lapses harder to conceal.
Last year’s back injury, often has me immobile until
noonish.
The disability I have not publically shared is a brain
chemistry one - inherited from my maternal grandmother and acerbated by my
childhood, - is again making a re-appearance. There is much stigma and
misunderstanding attached to it. Hollywood especially likes using it as an ex
machina to rationalize characters doing bizarre and self-destructive actions.
I’m not sure people will give me a chance to explain that it is a benefit to
the multi-tasking I excel at or the accelerated trouble-shooting I perform on
tech and crisises. Also - it is the reason I think "in poem" ...
Not disclosing the name, the disorder is caused by the brain
lacking the chemical needed to regulates the speed of the cranial neurons; my
mind can literally “race”. Too much speed on those neurons and they literally
split apart, like asexual reproduction, especially under traumatic
events. I now no longer have access to the medication that artificially
replaced that regulating chemical. This means I am frequently having multiple
thoughts at a time and they are clambering to spawn more thoughts. (When they
say “more is going on under the hood than it appears” – yes, that is SO me
right now). My mind does “wire” itself much differently than most people; I’m
not saying it is “wrongly ordered”, just that it is a differently-abled order” While
this can be advantageous to working out technical glitches (I excel at tech
hardware & software); too many is like trying to think+ in the mddle of a
metal rock band, comprehension gets drowned out by the “distractive noise”. Hopefully
– when I get a full time job – I will get decent health insurance and can get on
mediaction to regulate it again . But for now – I am unsuccessfully trying to
rein in my neurons and failing. Addressing my depression can slow this process
down.
I’m so grateful my son did Not inherit this one! While I
have learned to be functional, even successful, with
it, it is truly my most disabling of my disabiliites, that hook that pulls me
out of the water and into the frying pan. Naming it ... gives it power; but I have had a reader notice it underpins most of my personal poems. It is a big reason, why I have repeatedly
lost
my “Tiger”from my life.
Well – it seems I need to call it an end to today’s
blogging. Something unseen is touching my touch screens more and more often; closing
documents on me and opening random applications making any progress slow going. I need to take a break anyways
and get my emotions and thoughts stabilized again before doing my days e-selling – maybe I'll head outside and pull weeds. ...
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