Great family visit

I felt compelled to share that last weekend was great. Next weekend, Nick and Paige will be in Dallas to play at White Rock Sports Bar on Friday the 6th; in our back yard Saturday. Can't wait. 8 weeks for eyegaze. tired

Fewer, I'm sorry

I can hardly type. I'm hoping that any day now I will get word of my eye gaze computer. I also hope I can shorten the learning curve and begin communicating better. I still have much to say.

What's right with me

I spend an inordinate amount of time- even for an ALSer- assembling, organizing and categorizing, recalling  and sharing all that is wrong with me, what I can't do, what hurts, what's embarrassing, my fears, the loathing, the guilt, the angst, my depression, my.............................. darkness. It is long past due that I open my eyes to what is outside rather than close my eyes and dwell on the rot inside, drawing so many into my psychological dungeon of despair. 


This weekend, we are hosting our family reunion. Many are already in town and have come by for a dip in the pool. By Saturday, everyone will be here in Dallas for the big backyard shindig. My contribution- outside of my presence- will be, with massive amounts of help from Rachel, a  big pot of jambalaya. I  am already feeling my family's relief that I still look like Tracy, I still act like Tracy, I still AM Tracy. I'm pretty sure I never said ALS  deforms me or renders me incoherent, but some of my metaphoric terminology might have given the impression. Sorry. To those not here, I have not melted and my head lolls just a bit to the right. To date, I have not grown a hump.

Is it really darkest before the light????

If I see a light, should I go into it? Should I recall and listen to that little lady in Poltergeist? Am I sure to make the right decision?

It most certainly isn't quite as dark as it can be. I have not finished my journey. The wheels of my cart are loose and wobbly but have yet to come off.  

I am road weary and my body will not cooperate as the days wear on and I wear out. I have never used a form of the word "wear" three times in one sentence without it sounding redundant- until now.

I am reading a book called The Healing Codes. Jury is still out, but for the first time in my life, I am going on faith. Don't try baptizing me yet. I'm reluctant to say when all else fails, but when all else has seemed to come up short, I need to release my judgments, my prejudice and my own beliefs so that I may embrace others. I'm beginning to understand that knowing it all falls flat when I fail to solve my own problems and is stomped upon when applied to the world at large. I cannot be released from ALS until I release the ever-insinuating  self destructive load of stress and responsibility I have burdened myself with for 40 years. Blame is useless. I may die soon, but given a few weeks I hope to come to terms with my disease. If this ALS holds me within it's grip and drags my otherwise healthy- albeit chubby- body along for the ride for years, maybe I'll have time to come to grips with my life. That, or the healing codes will cure my ass. I'm hoping for the latter.

On a slope, looking for traction

I feel that I'm on a unique roller-coaster, one that provides a miniscule lift only to descend, always too rapidly, too obviously, too predictably, me without recourse  but to hang on, as my only option is to bail out, an option that I find helpless to execute. Descent seems naturally unnatural, close to inevitable while a climb provides only obfuscated footholds, intangible solutions and cloudy reality.

My speech continues to ride the last car of my roller-coaster, also descending. Nowadays, especially as I tire, intelligent conversation only exists when my counterpart is smart. My voice is thick, my articulation is  inarticulate and my tongue stumbles constantly. Referencing Flowers for Algernon- I talk like Marty at the beginning of the story. Before the ALS, I should have learned French, then nobody but Sarah would understand me. Come to think of it, neither would Sarah understand me since I would certainly cob up French as badly as English.

I find it increasingly difficult to present myself to others. Outside my obvious physical disabilities, I am now showing a bluff of mental deterioration. Most have no idea that ALS leaves the mind intact, in my opinion similar to stapling one's eyelids open in order to guarantee to see what's coming. Strangers feel sorry for me when I boast about the functions of my power chair. Another level of pity emerges when they perceive that ALS is taking my mind.

Communication is the key. I just can't provide the dexterity to place it in  the lock.

I remember all

I found an arrowhead on the trail over a  hill to the Boy Scout Reservation, where early in my Diamond Bar residency I yanked a rattlesnake out of the brush, unawares. It was at this reservation  I learned that no matter how many times I tried, I could not shoot an arrow straight up in the air.


Did I tell you that Mike Thatcher had lost an eye to a Red Rider- or Daisy, or Crossman or Sherman? Help me, Mcfadin, isn't that what you had?- his iris was a spilt jigsaw puzzle.


A construction worker fell behind an off road dump truck and was buried under gravel. We heard that his  head popped. 


If a fire raged even 50 miles away, we had to hose down our roof because sparks could carry  over the hills. 


While two sides of our back yard were fenced in wood, the third was concrete block topped with broken glass set in mortar. Tough for the meter reader.


Kelly and I organized a water drinking contest which I won. Peed 300 times that day.


I dressed up as a woman at Halloween, all too convincingly. 


Waiting for a bus to take kids like me to Suzanne Junior High School and teenagers to Walnut High, I encountered an older kid as he bunny-hopped our sack lunches, placed as markers on the sidewalk. My lunch was transformed into boloney puree. I yelled at him, he stood close and glared challengingly down at me, I hit him in the face with a right hook and a left cross. He lifted a knee, which lifted me, temporarily, before  I crumpled in a heap, reminded instantly of the Italian kid and the football a few years earlier. Some agony is so easy to identify. Somehow a bike and a parked car comes to mind. 


The bus came but I was already half home.

more old

It is beginning to occur to me that my youth was anything but normal. I believe my independence, though embraced, was thrust upon me as a result of our Nomadic lifestyle. Every time we moved I needed to establish new friendships and abandon old. Scouting neighborhoods became second nature. If my mother had limited my explorations, I would not be who I am today. 

Until I get my eye controlled computer, I will have to resort to Cliff's Notes versions of story. I hope to soon flesh over the skeletal structures, providing written sinew and muscled content once I can exceed my present rate of a herky/jerky five words a minute.

In Diamond Bar..........

I caught a tarantula in the hills, tied a thread around its body/thorax? and walked around   the neighborhood with it leashed to a button on my shirt- until it bit a kid and made him sick. I fed it beetles and provided water. Forgot the water once?, it dried out, kept its carcass in my underwear drawer, its legs  fell off, my mom found the remains, it met  the Tidy Bowl Man.

I fashioned a non motorized go cart by reversing a tricycle, removing the big wheel, reversing the handle bars, bending a nail around the rear axle and attaching it to a piece of plywood and attaching bicycle wheels to the other end of the plywood. I could sit and steer with my hands or lie down and steer with my feet. Fast and deadly. Fred Flintstone brakes.

I had just bought a chocolate shake and was one handing my bike down a residential hill when some kid tossed a broom through the front spokes. I went up, over and down, turning myself into an abrasion poster child. Through it all, I didn't lose a drop of the shake.

Me and Kelly found several large fish fossils unearthed as a freeway was cut through the hills nearby. His parents had one mounted as art in their living room.    

I placed second in the Castle Rock Grade School Junior Olympics qualifier  as a high jumper, competed in the Junior Olympics at Mt. Baldy, finishing in first place since the other kid was jumping off both feet- illegal.

Had a birthday party in my garage, 12th? where I got two CCR- Down on the Corner albums and two Three Dog Night- Live at the Forum albums, we played "Spin the Bottle" and I got to kiss my new girlfriend, Becky Ogle. Hi, Becky!

Unknowingly made Molotov cocktails by mixing gas and other fluids in glass bottles to simulate lava lamps. I kept  one in my bedroom.

Played with Tom's toys- a 50cal shell- chromed, and a 30 cal shell, live. 

More later

The "eyes" have it

Yesterday I had two appointments.  The first was at 10am, with an orthopedic doctor specializing in shoulder and hand issues. He shot cortisone into my right shoulder to reduce  pain that has been developing for some months. While the shot I got in February had great effect on my left, this one shows minimal improvement.


At 1:15pm I had an appointment to see three eye controlled computer venders and a speech therapist. The first guy was very knowledgeable and explained in detail the workings of his device. To him, his product was superior because he worked for an engineering firm that represented the cutting edge of technology. The downside for me, to begin with, was that his device, a tablet, was manufactured by another party, an eye camera was attached to the  bottom and the engineering company's name was affixed to the unit. I know an engineering firm could gather parts and build a camera, but I'd still rather own a Nikon.


The second vender represented a company called Tobii. An all-in-one device was presented. Better graphics, easier eye control- I did try the eye gaze on the first unit- user friendly and impressive. Later I discovered  that Tobii is a Swedish company, just like my Permobil M300 power chair- I should have known. Sweden Rocks!


The third vender had only pictures of the eye function attachment and an antiquated operating system.


The speech therapist was very familiar with speech issues in ALS patients and offered valuable information pertaining to voice   quality and speech management- slow down and enunciate. Having been a "low talker" all my life, I'd heard this before. The difference is, now I'm listening.


We are ordering the Tobii. A month or two before we get it. I may get a loaner much sooner.


What does this mean? It means that I will be able to continue this blog more efficiently, for longer. It means that I will be able to write more, more often and more bizarre yet insightful posts. Don't hold your breath for the insight.

I will have my new friend, Tobii, mounted to my power chair, enabling me to post from the back yard, the lake, the grocery store, JC Penney, at a hockey game.....................................

Imagine what I come up with as the breeze blows through my hair, the ducks quack and the mockingbirds mock! There will be no guessing the absurdities I'll concoct.

A sip of the past

Keep in mind I am using real names of real people, be damned the ethics; these are my friends, my mentors, maybe my tormentors, and they all deserve recognition.

We rented a house in a middle class subdivision within Diamond Bar, a relatively new development nestled amongst the foothills of either Orange or Los Angeles county. I'm too lazy to research  which. As I remember, the single story ranch had 3 bedrooms, a 2 car garage to the left creating an "L" shape and a fenced in back yard incapable of containing our terrier mutt Chibisan.  The back yard, over a year and a half, was home to Chibi, for a brief time a German shepherd proficient at planting land mines, a box turtle that scratched at the patio door when he wanted to come in  and a nest or two of black widow spiders. 6th grade, it was, me,  my 2 sisters Tammy and Trudy- Tammy in 4th, Trudy in 1st- my mom and a guy, Tom Dowling, a Vietnam vet and aeronautical engineer, maybe only a draftsman, certainly a stone alcoholic who had a lot of cool knives, canteens and such, a camo jacket with his name on it that he gifted to me, a dog, maybe a turtle, livin' the life.

I cut the grass with a non motorized push mower. The job was a  lot easier before I forgot and left the thing outside to rust in a rainstorm. I assembled model cars with wheels that turned! only to soak them with lighter  fluid, set them afire and see how far they would roll before melting. A  guy gave me a 4 ft. bull snake. I talked Tammy into smuggling it under her shirt to my bedroom, where I fashioned a cardboard box into a terrarium, dropped the snake inside and closed the lid. The next  day, while      we  were at school, my mom met the snake in the hallway. As a consequence, the snake had to go, I caught hell and I got the snot knocked out of me as I slept when Tom came in late from a binge. I think he preferred beer during the day and whiskey at night, but likely any variety  would do, none would sate.

My finger is tired. Tomorrow I get to visit a place where I can try out eye control systems.  I can't wait.

During our time in the rental house my mom read HELTER SKELTER. I found it and read it at night under my covers,  with a flashlight. Highly recommended.

California Dreamin'

Long ago, over 40 years back, before I had even heard of ALS and prior to all of the recent developments regarding  treatment of the disease, exciting researchers and doctors yet providing no effective treatment, certainly no cure, not even a cause, I spent 6th grade and half of seventh accumulating the best youthful memories of my life.


Southern California: Diamond Bar, then a budding community, now, I think, a city. 
Castle Rock Grade school. My teacher? Mr. Sirota. My close friends? Kelly Bolen, who lived across the street and had a pool, Mike Thatcher, who raced 250cc class motorcycles with a 125cc American Eagle and built solid fuel rockets, including a 3 stage Saturn 5, Mark Boguski, a young scientist who found a horse skeleton  in the foothills that we assembled in Sirota's classroom and who joined me as the best flag football rushers in the history of Castle Rock, Sammy Baugh, who rode a 125cc Penton and taught me how to snag rattlesnakes with a stick, a loop and a burlap sack.


Our escapades were legendary. I'll share them  a sip at a time, to savor.

California Dreamin'

Long before I knew anything about ALS, over 40 years back, prior to most of the groundbreaking research that has, to date, provided nothing close to a cure, let alone a cause, I spent enough time in southern California to emblazon the experience onto the walls of my memory, easy to read, easy to enjoy.

A cupful at a time, to be savored.

I refuse to look back to earlier posts to confirm that I haven't already told this story.

In 6th  grade I grew up. I have more fond memories from 6th than from any other. In a perfect world I would have grown up in the environment of Diamond Bar, California, at Castle Rock grade school, on to Suzanne junior high, then Walnut high school. Maybe UCLA. As it turned out, I made it through a half semester at Suzanne- seventh grade

Better day, better post

With the realities attached to my version of ALS, I  could plunge the depths of my imagination and dredge up every detail pertaining to my condition, my fear, my continuous sense of foreboding, but that would become a perpetual diatribe, damaging and depressing for me and endlessly foul for all those unfortunate enough or obsessive enough  to continuing to read my blog.

I'm not doing that.

Life is too short, (especially for me), so I plan to put forth posts more diverse- always about me- including a plethora of untold truth, hopefully to contain the secrets of  the origin of my disease, certainly as entertaining as the last few have been depressing.

Don't imagine

Please resist putting yourself in my shoes. They're ill fitting and smell rank. I'll swish, scrunch and squish around in them and offer up my first person perspective as a plate of ghoulish h'ordeuvres festooned with fasciculations and spasms, cramps and approaching paralysis and suffocations, chokes and aspirations.

You need not imagine, mine is enough for all of us.

A continuation, with updates

Let's pick up as I left off, where, if you recall, I described that my mornings are the worst time of day. True still, though as my right hand dive bombs toward uselessness I terrorize myself as lessening mobility precludes me from any usable or comforting manipulations at night. Last night was predictably and progressively pathetically sleep bare. I took a nap in my chair at 9am. I wish I could simply suffer through this and all other calamity alone; such is impossible. Amy is my constant companion; she feels what I feel, her hope is necessary to counter my woe. If not for her, I would be dead already. I have tremendous support from family and friends, but Amy is the one who now keeps me from overt, clinical depression. ALS doesn't kill, it merely eats functionality like a flesh eating virus, though saving me from infection that could abbreviate my suffering.

I am not one to easily accept limitations. A transformation from overachiever to non-achiever is simply unpalatable. I have no interest in surviving by way of machine. If  I cannot live without being plugged in then I  will not live. My own version and expectation of quality of life surely differs from sufferers     and caregivers alike. I know myself. If I'm to die, I'd rather travel via  jet aircraft than a slow boat. 

When I move my tongue around my mouth, a sluggishness occurs and foreign sensation prevails, surely a precursor to other malfunctions to come, some already manifesting as slow speech, swallowing difficulties and sensory anomaly. Chewing is more difficult; I lose food inside my left cheek, at the gum line, impossible to retrieve. Larger bites are unmanageable, food stops at the back of my throat when I attempt to swallow. Every swallow of liquid has an equal chance of entering my lungs if I'm not careful. A test last week  revealed  my lung function to be at 81 percent.

Months ago, I perceived myself as an arms and legs guy relating to my ALS. Today I realize that the disease must have been dealt a good hand, evidenced now as it appears it is "All In".