Emotional rollercoaster

I tried to write about my mother but it is impossible to type with your eyes when they brim with tears, so I will abandon the effort for now. Let me move on to subjects more palatable.
My wife, Amy, is like no other. She cares for me every day and every night. She supports me physically and emotionally, nurturer and lover she is, my life coach and hope rolled up in one petite bundle of empathy swaddled in angelic tresses of otherworldly fabric. She is why I live. She is why I try. Though I find many reasons to carry on, it is Amy who shines light upon the depressions of my darkest hours, their numbers dimming to inconsequential, fading to insignificance, backing away into the shadows of obscurity.
Did I mention she scratches my itches, even lowers me on to and lifts me off of the stool, rolls me in, out and over in bed and cuddles at all the right times. Wow! 

Brief, brief, brief

This morning my mom died. I will elaborate on her greatness at a later date. My new grandson, Asa Dale Evans, came into this world in time to say goodbye to her.

A very short assessment

Today is a good day for me. Lately I have been eating like a horse and putting on the weight that will keep me from that invasively pesky feeding tube. My leg jitters are diminishing under my control. The Heat won it all last night.
Also, my third grandson, Asa Dale Evans, was born Tuesday and comes home today. Nick and Paige visit over the fourth of July weekend.
My mom, while urgently ill, has shown signs of coherence. Good things happen when good thoughts prevail.

Of concern and sorrow

Today I remain serious. Today I find myself teetering between sorrow and anxiety as my legs are malfunctioning and my mom lies dying in Phoenix. It still perplexes me how easily I can descend from happiness to despair with such despicable aplomb.
It is indeed no small concern that mom is battling for her life. I am a coward for not racing to Arizona, but interlaced throughout the cowardice lurks the legitimate concern that my presence would pose an unwanted distraction due to my unstable condition, possibly worsened by circumstances at hand. My selfish desire is to remember mom from her last visit, and if she recovers from her present battle, I will smother her with jubilant apology. I must rely on the healthier members of my family to support her and Salim in my regrettable absence.
My legs have been acting up evenings for the last several days, locking out and shaking without fail. So far, we cannot figure out why. I fear the worst but continue to believe in lesser evil. I am really sick of being sick.

Another interesting change

For over a year now I have had regular home visits from Spirit Home Health Care. Every week I am looked over by a nurse who takes my temperature and my blood pressure, checks my heart rate and my blood oxygen level and monthly, my blood INR. She asks a variety of questions about my health. This past year I have worked with an OT, a PT, respiratory specialists, mobility experts, speech therapists and social workers. In order to continue in the program I must be evaluated every two months. Apparently, I am close to being booted off the program because I am not declining, not static, but improved since last year. My vitals are more stable and normal, my medication is minimal and my pain is nearly gone.
I wonder how many Gehrig's sufferers have been afforded such rejection? I hope that many have found a path to recovery and that none have descended to hospice or worse.
In the end there are only two paths: toward sanctuary or sanatorium. (life or death is altogether too plausible).

An assessment today

A thought crossed my mind yesterday at the mall while I was learning how to navigate using my newly acquired head array multifunction technology. Everything I seek and everything I now own is a device designed to accommodate infirmity, enable transportation or aid communication. Everything I had prior to my illness is gone. My career, my tools of the trade, my home in Peoria, my garden and back yard, the front porch where I had coffee and read the paper, the kitchen where I loved to cook, my Taekwondo students and friends, my work friends, my musician friends, my Land Rover, Jaguar, my treadmill, my lunches at the Dollar, my family, my everything.
     All of my former life is a memory of wanting. I need to better grasp the reality that the material comforts of my past are gone forever and that the friends and family will always be there, whether in memory or in the flesh.
      When I visit Peoria in August I will be stepping back in time for the real tangibles- friends and family- not a bunch of "stuff". I should take like assessment of my current life.

A brief update of me

With Amy's help I took 22 steps yesterday. I can carefully stand for several minutes untouched. I was told by a neurologist in April 2011 that I would be confined to a wheelchair by Christmas 2011. While I cannot walk freely, I have gained enough communication between my motor neuron cells and my leg muscle cells to allow me to direct their function. According to the medical community this reversal is impossible. Any evidence to the contrary is written off as a fluke or anomaly.
      I am still deeply afflicted but the ALS is having to work harder than ever to maintain it's grasp on my body and has lost it has altogether lost it's grip on my mind.

You know I wonder

All I have to work with is what I have. That ain't much. Occasionally I wonder what I could accomplish if I could sustain even twenty words a minute when writing. I'm at a loss when considering how little production is realized from those who can pump out sixty. Oh what a break it would be to allow relief from the pent up expression that literally clogs my arteries.
      I have every reason to be frustrated but no excuse upon which to stack the load of dismay that bleeds from my limitations. It astounds me that self pity had taken such a toll on me these last two years as to render me blind to its destructive nature. I'm sure glad that shit's behind me.
      I love jumping around. Reality TV and shows similar have gotten out of hand. There isn't an unemployed dimwit on the Big Brain Theory with an IQ as high as mine, making me king of the unemployed dimwits, I guess. Reality Manipulation TV is more accurate. Brett Michaels is pimping RV's and Dolph is punching the camera, the Rock must need money and next we'll see Carrottop sponsoring steroid competition called "Roid Rage Riot".
      I've said enough.

Damn!

I have discovered the holy grail of disadvantage. Due to the fact that I have been self employed since January of 1985 I am hamstrung and hogtied, flailing away, largely ineligible to obtain funding for a device that would enable me to not only write more efficiently and practically, but also give me access to and operation of my Chief Architect CAD program.
      If I had slung burgers at Mcdonald's prior to being diagnosed with ALS, I would have been eligible for more funding or training through the DARS program here. As it stands, my expertise works against me. The requirements for funding include the need to provide a service that is in demand, which categorically excludes writing or publishing, apparently because there is no demand for literature.
      So, we are investigating other options for funding. Meanwhile, I continue to write. The irony here is that I must write for profit in order to afford to buy the device that would allow me to write for profit.
      I need to cool down.

A new day and Katie bar the door!

Today is Sunday, one of the best days I've had all year and you wanna know why? Because Friday night I spent 4 hours in the hospital getting poked and probed and monitored and stripped and x-rayed and questioned and I experienced exactly no anxiety or stress. It has come to me that a large part of illness is purely mental, self inflicted. The last time I visited the hospital my anxiety kept me there 4 days.
      Yesterday I stood on my own feet for 5 minutes. Don't expect more because its too boring. I guess the next step (haha) is to walk. I think I'll glug some water and jog to the bathroom.
      I can't wait to roll into Tower Park and show off my gadgets and my spirit.

Writing and the Emergency Room

I worry, though not too much, that writing with forethought will expose the demented core of my thought process, stripped of convincing perjury forcing exoneration of guilt through denial of premeditation. In other words, more economical and less confusing, I need to take responsibility for what I write, whether off the cuff or well considered.
      So I do. I have been accused of finding comfort in macabre content, true, but my wheelhouse contains more than gore. You just see.
     Last night I visited the Emergency Room with a higher than usual heart rate and shaky legs that wouldn't bend. I had eaten a salad and developed a gut ache that caused me to wretch, which spiked my blood sugar and stressed my entire body. Sucked. I'm home now but my resolve is a bit shaken, if not stirred.