Check this out:

While rummaging through some old crap I'd written, it appears, around tax time 1997- which explains the content- I found this curiosity: 


Emily, my poet scholar niece, how would you categorize this snippety little thing?


Self

I breathe, I walk, I talk

I exist within my world

It is finite

I have set my boundaries

They are constant

My existence is never pondered

It is only accepted

I never look past my walls

Fear binds me

I don't question that which I cannot understand

I will never understand that which I don't question

I have strength in faith

Inside these walls

I am fearful of nothing

Within them

The arms of my God protect me from curiosity

He creates my world

He shelters me from infinity

My boundaries are his boundaries

I am his creation

He is my creation

He breathes, he walks, he talks

He is me

Now I know I'm my own worst enemy

Another late night

We must stop meeting like this! I'm prone to think more when I'm prone. I guess. So now I'm awake and relieved that the meltdown I just had lasted only long enough to upset Amy for a short time. Actually, that is not true. Whereas I can be totally destroyed for an hour and find it cathartic thirty minutes later, she remains strong and holds it all in, similar to eating a hand grenade and turning her back so I can't see her face, her spine protecting me from the explosion. Boy, is she going to hate me for that one. She's dropping me supportive e-mails as I post (instead of getting much needed sleep).

Support can be measured in layers, none valued more or less than another. Awkward term, but accurate. We appreciate any and all support. We have the silent support group, most likely our largest club, those who are praying for me or thinking of me and channelling their empathy without a word. We have the more charismatic bunch, those who call or write or share they're devotion to prayer through various  groups. We have the cure clubs, those who want to help me with their heartfelt advice ranging far past the reaches of practicality and propriety (I really like this group- willing to throw it all out there without a second thought). We have the visitor's gaggle, mostly closer friends, brave enough or curious enough to drop by, always a pleasure and never a burden. We have the pushy ones, those who can be challenging to us as they insist we do this, insist we do that, whether it be accepting Jesus or receiving daily colon cleansing, who may be looking for results for self aggrandizement. For their own fulfillment, for whatever. Bring it on. I don't care the motives. Whatever the flavor of my support, I love it.

What I believe is immaterial to my friends and family. What they believe holds the real power. My job is not to adhere to their reasoning but to accept their devotion to my health in whatever form it is transported.

Continuation

Today (or yesterday, depending on how you look at it), I had a reasonably bad day. I say "reasonably" because my bad days must be defined with a broad stroke, ranging from slightly bad to disastrous. Reasonably bad lies somewhere between slightly and moderately so. I didn't fall down, I didn't fail to make it to the toilet and I didn't leave the house so I didn't embarrass myself. Problem is, I spent too much time thinking. Just so it is clear: There is no such thing as an idle mind. If I could put my thoughts in neutral  every so often, I'd never have a bad day. I could flip the mental gearshift and my brain drive would settle down to a crawl, coast a bit and roll to a stop. I will admit to having the ability, mentioned more than once, to be able to self- hypnotize or meditate, enabling me to rise above my stresses and sleep. Problem is, this method only works when a desired result is well defined. 

Idle time is my enemy, though I lack the energy or ability to fill my days with activity that can combat on every front. Sometimes- not always, not every day- my imagination, loaded with a macabre sense  of humor- demented, I know- gets the better of my common sense and challenges my  self preservation instinct. In a nutshell, I smell doom when my brain enters this mode. I cannot block it out because somewhere deep within my psyche I want it to manifest itself. My sense of  well being is buried in the rubble of gloom. I'm at the mercy of my overactive pendulum, caught in it's arc toward the dark side. No manic depressive am I. That would be too simple. My pendulum sweeps with a varied gravity- more so to the extreme of black imagination and less, though fairly so, to the sunlight. If my mind worked on an even keel, do you really believe I could think this shit up? It is a blessing and a curse, magnified by my predicament. 

I must put this occasional "reasonably bad" in the proper perspective.. I could have had a disastrous day, characterized by a tumble down the stairs, a broken neck and paralysis as dessert, I could  have received bad news unimaginable, I could have slipped and drowned, face in the toilet (you see how easily this stuff flows for me?), but nothing like that happened. I simply thought about it. I failed to nourish my mind with the bright swing of my pendulum and allowed myself to get carried down a dark path of imagination, mine which is over active, mine that fights daily to see the good in all this. Most days, the good wins out- today I conceded a small defeat. Hopefully they will remain few and far between.

Time to expect more

OUCH!!!!!!!!!!!!!!!!!!!!!!!!!! Every morning I wake up and my left shoulder blazes, my left arm is bent and won't straighten, my fingers are bent and my wrist won't rotate. Every morning I use my right to fling my left onto my chest, all the while forcing the joints to move. Essentially, I bring my arm from it's rigor as a start to each day before I slowly lower my feet to the floor, propping my body with my weakened yet still functional right; even more slowly, I lean forward and backward, increasing in speed and arc until I feel I can cross the line of balance which will put my weight directly over my feet so as to be able to push straight up and rise from the bed. Once standing, I stiffen all my muscles in an immobile stretch and literally quake and vibrate, sometimes involuntarily bouncing my right leg in a spasmodic "thumper" like dance. I then venture a 3' walk to the dresser and hang on until my bearings slip into place. From here, things get interesting. While stumbling through my morning ritual, I have wasted valuable time and have revved up my urgent need to get to the bathroom. Accelerated, whacked out motor neuron activity must permeate all of my physiology because the need to pee comes on like a freight train. I grab for the bedroom door, as much for purchase and balance as for exiting, swing it wide and right arm monkey swinging myself from door  frame to door frame to bathroom to toilet, always barely in time, always in a panic, always massively relieved when successful.

Mornings are always tough, having spent the night a restless corpse in waiting, flopping and repositioning myself constantly to relieve the stiffening of my arm, always waking to find it a dying branch attached to my aching shoulder. Once up and around, my waking movement gives me some relief. I resist taking any pain medicine for the nights for fear of sleeping through signals prompting me to move to stave off the stiffening of my joints enough to delay my paralysis. I prefer to resist the pain meds, the anti depressants, anything that might mask the problem, not helping me at all. I need to be aware of everything going on with me.

A strange sensation has developed, connected to a phenomenon involving muscle activity I never would have been aware of had I not contracted ALS. I guess I picked up this disease to further my education. I sure wish I'd skipped the class. The deal is this: I cannot maintain purchase. What I mean by this is that I can't dig in and hang on. My feet slip off of everything. A bar stool . A footstool. Each other. I can't keep my arms crossed, they slip apart. I guess that my muscle memory has been compromised and that my hands and feet acquire muscle amnesia and  just plain forget to do their jobs. Another weirdness is the difference  in the sensation of my left and right hands. If I run my right hand down my left arm my skin feels normal under my palm, but if I reverse, using my left hand, the feel is totally different. Rougher. Coarse. Almost scaly. I guess this sensation must be my first encounter with motor neuron death. Scary.

On a good day, I can get out of my chair in the living room on the first try. On a good day I can swallow my warm coconut oil without gagging. On a good day I can navigate my way to the kitchen without my power wheel chair. On a good day I enjoy the fact that I am loved. On a bad day........... forget that thought.

Little bits of reality

As I close in on whatever fate awaits me, as my physical degradation continues, I can't help but long for the guy I once was. I do console myself at the fact I'd over the years scratched off most of a bucket list log before I even knew what one was. I've bungee jumped, rock climbed, survived class five rapids, skydived, visited England, Hawaii, seen the Grand Canyon, jumped 46 ' into a small pool of water without breaking my legs as I impacted the bottom, climbed a 240' radio tower- at night- when I was 14, successfully executed a jumping reverse sidekick- breaking 3 boards- blindfolded, cut down a 48" diameter tree with a 21" chainsaw, drank Tecate and munched fresh salsa with my son in Cozumel, rode a helicopter over a glacier in New Zealand with Rachel, survived a tubing nightmare with Sarah in Arkansas................... and much, much more.

Memories are great- to a point. After the mental groundswell of emotions, I'm faced with an ever increasing realization that any bucket list I might want to tackle literally involves a bucket- a big one- with me in it. I hate the term "I can't", but it has permeated my common vocabulary and has invaded my everyday life. I refuse to reveal all that I "can't" do on the grounds that once I start, the list will become eternal.

Leave it at this: I'm trying. Every waking moment. I am the only one who really knows what's going on with me. ALS is a highly individualistic disease. No two people suffer the same way. We who have it are distinguished by our ALS fingerprints. What may work for one may not help another. Meanwhile, I am experimenting with more than my mind. I am ingesting and digesting and electrifying and quantifying (not so much) and such. All the time battling the elements. I'm going to watch football now. Goodbye    

The Day After

Thanksgiving has come and gone. Only remnants remain of the 24 friends and relatives who chowed out here at my home yesterday, washing down turkey with beer, Sangria and conversation. We'd hosted the holiday for many years and I wasn't going to let a little disease keep us from continuing the tradition. In the past, I cooked the bird and generally ran the kitchen, but this year Rachel took over, in part because I can't manhandle a Cornish game hen let alone a 27lb gobbler. She has officially earned my chef's jacket.

On the other side of things, I must reveal that a subtle change has come about that is both undeniable and reasonably expected. I have been outed. I have, until recently, been theoretically inflicted with ALS to those who don't see me on a daily basis. Now, my condition is factual and evident. There can be no denying that something is wrong with me. My symptoms are now on display whenever I move. A power wheel chair in my living room speaks a thousand words. Interesting is the fact that all of this isn't really my problem. I don't have to see myself teetering and quaking and struggling- everybody else does. Those around me need to digest my digression without emotionally gagging, without grimacing, while guessing what is an overreaction or an under reaction, whether to move forward to try and help me or back up and pray I don't face plant. In a nutshell, I feel bad for everyone who comes in contact with me. 

The concern I've had all along is magnifying. I rarely feel sorry for myself, though I do see the pathetic Tracy in the mirror from time to time, but always feel sorrow for friends and family. I tear up at the thought of others' discomfort whether they're around me or not. I feel bad for those who feel bad. My imagination, no doubt, feeds my emotions, carrying me through scenarios only I could create, bringing me down enough to dip my toes in depression. My defense mechanisms include all the smarm, sarcasm and triviality I can muster. I often load it on through these pages in order to sidestep the real emotion and its debilitating effects. I wish I really believed all the crap I throw out to minimize my condition, but at the end of the day I'm still sad for those who are sad for me. I can help myself but I can't help them. I can control my emotions even if I hate them. I can't fool others into believing that this is all a charade any more. I've lost my clothes and exposed the reality and I can't shelter my friends and family from my frailties. I can't protect them from me any longer. I can't relieve their sadness with a clever quip or a joke while Amy feeds me dinner. I can't minimize their despair. While the stress and worry loaded upon my back is a burden I can bear, the thought of those I care about being affected by my disease carries a toll much heavier. 

If I'm going to get through this thing, I'd better learn to deal with these issues lying outside of myself. This is my job of the day. Please help me by not being sad. Help my by looking at your own lives and worrying less about mine. I'll be just fine.

I'm helming a juggernaut

Whatever you've been told about ALS by me, on line, from friends, doctors, shamans, God (certainly indirectly), neighbors, know it alls, sufferers or even zealots of any zeal you can use to fill a can and store away for sorting through at a later date. You might have the time- I don't. These several months I have scanned a million opinions, a million remedies, a million steadfast believers in a cure. I get so many testimonials to so many treatments that it is a wonder ALS kills anybody. If I were spontaneously healed of ALS today, I would be asked by a million curious as to what I did to cure myself. Just so you know, if I chronicled my efforts, I would have to expose the truth- I haven't any idea why the disease stopped. Was it divine intervention? Was I worthy of such a consideration? Did I change my diet? Maybe a little as of late. Edgar Cayce method? Too early to think that did it. Did I correct my sub conscious? Not without the answer to the problem. 


I know that if I singled out ANYTHING I did, a million messages would hit the Internet with my testimonial in tow and a million ALS sufferers would have another revelatory method of cure to stack on the pile they'd already acquired. Don't get me wrong, I  believe there is an elusive combination of something or other that can beat this problem; the dangerous part is sorting what may work from that which won't, from that which is harmful, from the million or billion combinations that may kill me. If I followed even a fraction of the remedies I've encountered, I'd spend the remainder of my life either on the toilet, in bed or so fatigued as to never get dressed again. Others proclaim that heavy exercise will bring me back. Let me tell you- early on I thought working hard physically would help me maintain my muscle mass and strength. The advice was for shit. I believed a guy who testified he lifted weights to stay ahead of ALS. I felt, after working a full day, that my ALS got a shot of adrenaline. My fasciculations went as crazy as "girls gone wild". I lost control that day...... some of this stuff is propagandized through ignorant minds, desperate to find a cure to their woes. The Internet is full of ALS sufferers who haven't any idea what's going wrong within themselves. I try to understand the physics of my problem and choose what may help me to cope, to have reasonable energy and to endure. I have to  be careful not to be deluded or convinced in fake philosophies that would encourage a pound of sugar a day for a diabetic. 


All of this is important. I must make good choices. Choices based on scientific support and logic. Educated choices. Considering these parameters, I'm now going downstairs to chug a bottle of coconut oil- I heard somewhere it helped a guy with ALS to walk better..........

I just read this, and.....................................

I'm sure any of you who peruse Facebook, as I do, must agree that too many people post sayings and witticisms, many which are funny, more are lame and a few are impacting, only rarely crediting the author. I would prefer new stuff, lame or not, written by the person posting. Too much crap, not enough intelligent content. I rarely weigh in on anything I read on FB, especially here, on my blog, but I recently caught sight of the following cyberpost and felt it necessary to dissect it and give my take on its message. Here is what I read: 

There comes a point in life when fun no longer means clubbing, drinking, being out til 4am, or thinking about yourself first. Fun means Disney movies, family dinners, bedtime stories, long cuddles, a messy house, sleeping by 10pm and hearing little voices say "I love you". Becoming a parent doesn't change you, it makes you realize that the little people you created deserve the very best of  your time.

When I first read this, I failed to grasp the real message contained within the sweet, syrupy delivery. Before I explain my view, those of you who only know me through my blog must know I've been married, madly in love every day going on 34 years. I have three grown children, ages almost 28, 30 and 32. All of them are creative and successful. They are compassionate and intelligent. We love them. They love us. This is a fact. We had kids early. Amy was 21, same as me, when our first was born. We were young, naive and innocent parents. We raised our kids on instinct and with youthful exuberance. Thirty two years ago, if our child had a fever, we ran cool water in the bath and brought it down. We didn't call the doctor unless the problem was more serious- the first call would be to our moms. 


Back to the verse (of sorts) above. Let's look at it in parts. We cavorted until all hours when we were dating and when we married. True, I drank socially, at times too much- Amy was always conservative, but she partied with the rest of us. We had a social life, in 1976, 1977, 1978. When Sarah was born, of course, life changed. We had a new responsibility. We obviously got out less. We did not, however, cross our social life off our lists and while it was more difficult to go out together, we managed to do so when grandma would babysit. There is no magical transformation when kids come into your lives. Anybody who has little kids knows that while you may not be out "clubbing" (a term obviously chosen by someone who never resorted to such sordid behaviour) til 4am, you never found yourself sleeping by 10pm unless you were napping between stints of feeding, rocking and diaper duty. I guarantee Amy and I saw many more 4ams after our kids were born than while hanging out in late night bars as newlyweds. 


Fun does not transform out of necessity. It is, in my opinion, foolish to replace one happiness with another. Anybody who tells me that they love the movie "Aladdin" as much as they loved "The Usual Suspects" is deluding himself and insulting my intelligence. Our kids are an addition to the family. They rely on their parents for everything, but they do not dictate every action in our lives. When Sarah was very young, she was our mobile child. She was toted to friends' gatherings on a regular basis. It was never too hot or too cold to strip her down or bundle her up and head outdoors. While Disney and family dinners and cuddles and  tuck ins occurred with all of our kids, we never eliminated much in our lives. We always kept our perspectives in place. You see, my love for Amy, and hers for me had to be obvious to our kids. Our dedication to friends, family, to each other, our need to be alone together, to do adult things, to have connections unrelated to our children all played a part in their mental health and development. After all, our kids would (and did) leave the nest, but it would not be empty because we had invited them into our lives and helped them grow up, never their servants, allowing them to enrich our lives, not take them over.  Don't give up adult things and dumb down to a child's world, allow time and experiences for yourselves, otherwise, when the kids are gone, so is the life you once had.


I am really sorry to post this-  or am I? Kids live with their parents less than half of their married life- I figure they are little joyful backpacks we carry around for a while, cutting them loose when they grow up. A burden, yes, but one (or 2, or 3, or 4), well worth  carrying.

Back to business

I returned from a great respite in Dallas on Friday, hooked up to my Edgar Cayce "Baar" wet cell and began to move toward hopeful improvement, or at least stasis, on my road pockmarked with ALS. I'm altering my diet, having enjoyed baked salmon, raspberries and apple juice rather than my beloved potato chips, Prairie Farms French Onion Dip and Pepsi. I don't  plan to explore the fringe zone of dietary plans, but finding a happy medium is within my reach. Everything in moderation, I say.

I promised, back in July, that I would present myself, warts and all, with truth and transparency. Until recently, those truths were palatable for me and sharing them seemed adventurous and relatively easy. Now, things become more complicated. Now, the implications of ALS are staring me in the face, are more personal, are more difficult to deal with publicly. That being said, I also promised, last week, to lay you out on a slab with cornball ironies and obtuse sarcasm, warped humor and gag inducing garlic in the toothpaste revelations. This is where we are today. Not at a crossroads- I passed that intersection a long time ago- but at the precipice of a long, winding hill, bumpy and dangerous, laden with ALS bombs and tripwire. I can navigate this highway to hell better if I allow myself to laugh at the perils rather than succumb to them. Amy says, and with good logic, that I must shed my angst and worry at all costs, to find joy in everything I experience, to eliminate the mindset of negativity. This is really nothing new, she's been telling me this my whole life. I just never listened.

While I have a hard time following the "don't worry, be happy" mantra of Bob Marley (maybe I need to score some peyote), I can find myself amused, which is a form of happy, by eliciting gapes and cringes by way of "over the line of propriety" exposure of my day to day peculiarities involving my ALS. Let me present a couple teasers. This post does not require a "reader beware" warning- you'll know when you find yourself witnessing the dark side of my humor - just you wait......

Briefly- If you have ALS, as you may have concluded is my dilemma, and if your left arm and hand is a half paralysed, weak, barely functioning twitch ridden spaz machine, and your right hand and arm still function at about 80% but are heading down a similar path, and your legs are running on brain activity run amok, never, ever, while wearing a robe, buck naked underneath, tied rather loosely because it's the best you can do one handed, sneeze while holding the water canister for the coffee maker, filled. I did. I sneezed, and when you sneeze having ALS coursing through your body, EVERYTHING SNEEZES! Legs buckle, arms flail- literally flail-; any excessive head movement can throw you to the ground in a heartbeat. Balance is a myth and anything you're holding becomes a lethal weapon of mass destruction- upon yourself. I caught it on my face, I caught it on my chest, water sloughing beneath my loose robe, toward and past my boy parts, down my legs, my spastic legs, flung afar as I recoiled. Water was EVERYWHERE! I lost my grip on the canister but somehow, miraculously, snatched it out of the air, preventing more woe had it hit the floor and broken. I'm sure, had anyone been around, that my Chevy Chase shtick would have included a flashing of all my glory. As it was, Amy only heard the calamity. Lucky for her.

This concludes my teaser, promising many more sordid tales to follow, and I again promise- I don't make this shit up.

Back to the 4th grade

Catching up with 4th grade, I must rewind a bit. I left off saying we were headed to California but I missed a couple of details that help explain how and why we were leaving the beautiful projects behind, along with my super ball, my boomerang, my  new bike and practically everything else we owned. I can't say I was upset about leaving school- by the way, I now remember the school name: Martin Van Buren-, hoping (and expecting) a better experience out west in the land of wonder. Leave it to a 4th grader to look for adventure where only stress and upheaval exist.  


Why move? Dad was tired of Chicago and wanted a change, I guess. I hadn't a clue whether other reasons were in play. I was well aware, though, that our house in Wonder Lake had sold, and we got over ten thousand dollars and it all got spent on things like Mediterranean furniture, a matador print, Mediterranean wall sconces and bunches of other stuff, only to have dad want to box everything up for mom's parents to sell, including my bike, so we could travel to California. Apparently, he had a line on a management job at a McDonald's in, I think, Anaheim, but our first weeks more likely resembled the reality that he was looking for a job. I need say, to accommodate the trip, my parents bought a brand new car, probably their first, a 1968 Buick Skylark Convertible, maroon with white top, white interior, equipped with an 8 track player and a demo tape. I don't remember them playing anything other than the demo- soft jazz and seagulls and turf- but that's not to say mom didn't buy a Tom Jones or Engelbert Humperdinck tape that I blocked out. Anyway, we rented a little U-haul trailer and rigged it up to the new bumper on our new car, filled it with what I know not and we headed west, leaving the bulk of our lives, including everything Mediterranean, for my grandparents to sell- including my new bike, which they sold, whatever money collected destined to disappear into the family abyss.


The actual trip was more anticipation than vacation. I was convinced, with help, that California was as close to heaven as was humanly possible- beautiful weather, palm trees, the mountains, the ocean- where life would begin for all of us, where all marital problems (and my parents had plenty) would be solved and the future was bright. I had it in my head I would be able to run out the front door and climb a mountain, chase coconuts from palm trees and skip through the back yard right into the Pacific. Reality trumps imagination.


We arrived in the Los Angeles area with no place to live. After driving around for an undetermined amount of time, we found a motel, 2 levels, the kind of motor lodge where you drive into a center court and find yourself surrounded with rooms. I don't remember how dad managed to park the car and U-haul, but I do recall the 5 of us crammed into one room for at least two weeks while better accommodations could be found. Meanwhile, we had to enroll in the local school.


Tweedy Elementary School- 9724 Pinehurst Avenue South Gate California is still in existence! I Googled it. State testing rate it a 4 of 10 compared to schools statewide, and I'm not surprised. What does surprise me is that the school I attended, with a horrific experience, for two weeks in 1968 has not been bulldozed for decades. Maybe the state of education was universally poor that year. After exiting Tweedy, my school experience in California was better than subsequent years after leaving, three years or so later.


What experience could be so bad that a mere two weeks in 4th grade remains indelibly etched on the inside of my skull as I approach 54 years old? Let me tell ya......... I had just left a Chicagoland elementary school whose teachers proved to find themselves no match for their students. I even spent time with  a frustrated principal who confided in me, nine years old, that quality teachers were scarce. I was always good in school until the later years when I found it more fun to excel in subjects I liked, blowing off those that didn't interest me (Steve Jobs felt the same way and look where it got him). I was reading at four, doing math at five, knew my geography and could spell most anything. I credit Greenwood School in Wonder Lake, IL. for it's "ahead of its time" progressive approach to education, specifically, my kindergarten teacher, who's name escapes me (Miss Holmes?). My history and self confidence carried me as I entered the strange world of Tweedy. 


My mom checked me in to the school on a day toward the end of March, 1968. Due to the registration process, I was late for my first class. The teacher ushered me to an open desk, not bothering to welcome me or to announce me to the other kids. I learned that, unlike back in Illinois, I would be changing classrooms for a couple of subjects. Too bad I didn't know which ones. I also found out that in this school district kids started kindergarten at four years old, which put me at a year older, and by definition, a dummy who must have been held back. While kids at that age didn't care much, my teachers found my age reason enough to pre-judge my intelligence. I managed, as a result of protocol ignorance, to confirm their judgments. A brief example: On some days, unknown to me, spelling tests were conducted covering words learned the previous week- before I arrived. Sheets of lined paper-you know, the stuff that looks and feels like newspaper- were handed out by the teacher, who soon started dictating spelling words. I was given no specific instructions so I wrote my name at the top and spelled the words down the sheet. I can state unequivocally that I spelled every word correctly. Easy as pie (pie might have been one of the words). Since I was at the back of the room, I handed my sheet to the girl in front of me who frowned and said "you didn't do yours right". I don't remember replying, but I do remember seeing others' papers folded in half vertically. Not until the next day, when we got our tests back, graded, did I understand the significance of a vertically folded paper. I learned that I not only needed to fold the test properly, but that I had incorrectly titled the page. Apparently I needed to provide more than my name at the top in order to avoid any confusion over which Tracy Boettcher was responsible for this particular assignment. I was happy to comply with the teachers wishes as long as I knew what they were. I was less than happy to find that I received a zero on the spelling test due to improper structure. Having overruled a teacher some months earlier, I strode to the front of class and asked why I had a zero when I knew that every word was spelled correctly. The answer I got was astounding. She gave me a zero because I hadn't folded my paper and added class or teacher or something else, all inconsequential to me. She actually told me she didn't know if I had spelled my words correctly because she never looked at them. I was then shown how to properly title and fold a spelling test. End of discussion.


Recess: The learning curve at Tweedy was short at best. Learn how they want things done (don't expect help here) and follow their procedure. The content of their education was well below any challenge I might have been looking for. Recess was a different animal. I found out the first day that their recess time was rigidly structured. Group A reported to the four square area, Group B to the tether balls, Group C to dodge ball and so on. Every kid had a place.....except me. I was never assigned to a group. I didn't even know they had groups until I got in line for tether ball and was admonished for even thinking of invading their party. So I wandered around until a recess monitor- likely a teacher based on her demeanor- snagged me and told me to get back with my group, to which I replied that I had no group to which she reminded me that I was assigned a group at the beginning of the year to which I replied that I was going to school in Illinois until recently to which she huffed and grabbed my arm and injected me into the four square group, who hated me because I sucked because I had never played four square in my life.

The final week and the last straw: FYI- On April 4th, 1968, a Thursday, Martin Luther King was assassinated in Memphis. Since my mom and I had discussed MLK in the past, I probably knew more about him than most fourth graders; my instincts told me most students at Tweedy had never heard of him, possibly a few teachers shared in their ignorance. Well, the news of his death seemed to me to be of significant importance, so when mom pulled up to the school to drop me off the next day (I remember she had the top down) the first thing I noticed (really, truly) was that the school flag was not at half mast. I asked mom why and she thought maybe they just forgot. At the time I didn't know that "half mast" was generally reserved for military observances. Mom said I should simply ask the principal- so I did. I entered his office for the first time. He, of course, had no idea who I was, but politely asked what he could do for me, a 47 inch tall scrawny fourth grader. I wasted no time with small talk. I asked him why the flag was not at half mast. He looked at me blankly and asked "why should it be?". I told him Martin Luther King was killed, something I'm sure he already knew. He looked surprised, maybe even amazed, but soon gained his composure and said "well, I'll look into that". He never asked my name but he did say thank you as I left. I  was late for class. I got into some kind of trouble. The flag was at half mast when mom picked me up that afternoon. I attended Tweedy for only a few more days the following week. We moved again----- but that's another story.

I'm trolling for a segue

This post has a few faces, the first of which relates directly to my latest experiences with my disease, disturbing at best. I am, frankly, sick and tired of being sick and tired. I've had it with changes, not so subtle, that make my life more complicated every day. I am, at least temporarily, through with the gloom and doom of the telling. For the next several posts, maybe more, I will be relating events laden with sarcasm, self deprecation, "crossing the line" humor and indiscreet revelations. I plan to "shock and awe" as best as I can, filleting my innermost secrets, my innermost fears, serving them up layer by layer, discarding the bones of respectability with each meal. As I travel away from pride and privacy, I travel away from civility, from political correctness, from propriety. If you've found yourself on the verge of being offended having read prior posts, place the paper Kroger sack over your head now. No kid gloves. No rice paper (Kung Fu reference)- I plan to dirty my fists with the flotsam of unbridled irony, to destroy the rice paper with the dance  of the decadent. I plan to excise the demons of negative with a rusty scalpel of difficult humor. I am going to embarrass the ALS to the back burner of my life for as long as I can. How? An example: life with ALS is like wiping your ass with a hoop- there's just no end to it. The good side? At least I won't have to wield the hoop. Stuff all of you are wondering but would never ask. There will be no delicate cycle for this dirty laundry. Expect a content warning to precede each post of such nature.

Moving on, I have not abandoned my life's history while wallowing in 4th grade. Look for a continuation soon.

Moving ahead, I am considering a couple of projects- the first would be to print my blog here from beginning to end. Problem is, I see no end in sight so I may never be able to present a complete compilation. This, for me, is a problem I'd like to consider perpetual. I'm over 50,000 words now and still have a lot to talk about- I might consider a Part 1. Another project I am considering just for grins, is writing a book of short stories. Not your typical book, mind you, but an atypical, one of a kind script to include stories I've written over the years, mostly forgotten, along with many I've yet to pen. Largely a collection of made up junk, perfumed with semi literate acts of clever, probably disturbing on EVERY level, hopefully entertaining. Whether I can get it published or not, it is soon to exist, not as a Blog, but found as a lengthy Word document on my computer. If the Gods approve, and people clamor even a little, I'll be forced to release it upon the poor, unsuspecting public. Let me hear your outcry!

 

Growing limitations

As I thoroughly enjoy being with my daughter and her family here in Dallas, I learn more each day how ALS creeps up on me and steals bits and pieces of my functionality. My right hand and arm are going the way of my left more quickly than I had anticipated, leading me to believe that ALS develops a stronghold within my body and accelerates as time passes. I can't say I've read anything definitive related to any systematic consistency in other sufferers; I can only tell you my own experience.  


If I sit still and put no demands upon my body, if I don't attempt to read a book, a newspaper, to sip a coffee, to rise from my seat, I feel pretty good. If I walk to the front door and down a few steps, all bets are off on whether I stumble, trip, even fall down. I'm near the point where I need help to regain my feet if I hit the ground. While I can walk, with assistance, the act is exhausting; a wheelchair nearby is a necessity. When I get home I am going to relieve my entire family by giving up driving. It's not that I can't drive, it's my lack of mobility once I arrive at my destination. If Amy is along for the ride, I can manage the wheel; I just won't drive alone.  


When I get home Friday I start on my Edgar Cayce Adventure. I can't wait. 


I will be slightly more home bound as I dial in on these experimental processes so I won't have much opportunity to party. If you want to visit, call first to avoid finding me in a compromising position. Ya just never know what weird activities may occur within the Boettcher household as we escape from the box into the world of alternative remedies.

Short and sweet

I'm writing, so to speak, or, more appropriately, to post, on an unfamiliar laptop, on a dining room table, which puts the keyboard chest high, making it difficult for me to type, so don't look for high volume posts this week. I'm in Dallas until Friday. 


I have a request. As I post on this site, I seem to collect interest from new countries every so often. I would like to know who out there may have ALS, or know someone with ALS. Maybe general curiosity plays a part in reading my posts, might be a referral from someone. I'm just looking to learn something about my audience. I'm read now in 30 countries. I sincerely appreciate anyone who finds interest in my blog. Always remember that what I post is real. I really do have ALS, I really do hate it and I really do write the truth. I do not have a ghost writer. I doubt any ghost writer worth his salt would agree to put to screen my thoughts, as warped as they are.


Please contact me and tell me your stories, even if  you're just reading for fun (in which case I REALLY want to hear from you). E-mail me at tracyboettcher@gmail.com  Maybe we can get together for coffee. I promise not to respond to your e-mail unless asked.

Last night, today and Dallas

It occurred to me that I might tell the happenings of the last couple days in reverse fashion, retracing my steps from now to then, but I realized my intention was to tell the future as well as the past, putting myself in the position of needing to move forward, then reverse course to tell you what already happened, and the thought is just too confusing and exhausting (the last thing I need is more confusion and exhaustion) so I'll keep my narrative chronological in order to tell you what was, is, and may be.


You have just suffered through the longest sentence, at 95 words, I have ever posted on this blog. While I have a long way to go to catch up with Cormac McCarthy, I'm quite proud of myself. It might well be a run on sentence, but it meshes quite well with my run on style of writing. Why write several sentences when the job can be handled with just one? Why take several breaths if you can achieve the same result with one long winded gulp? It is, by golly, an exercise in economy of punctuation.


Starting with last night, Friday  night. A place in town, a little bar, charming in barspeak, where Nick, my son, and Paige (both pictured) played a duo (duet?) for the first time in Peoria.It goes without saying that they played great. It bears saying and repeating that I was elated at the turnout. I couldn't have been happier with the show of support for Nick, and I know many were there to support me. I played my hand at invites loaded with four ALS cards, and everybody went "all in" for me. I thank you. I also thank all of you who let me know you read this blog. Let it be known that by setting aside time in your lives to actually read me, you help me. My cure may not be via computer, but my will to battle is directly connected to my ability to excise my demons and spill my guts through these posts. Cathartic. The more who read, the more gasoline is provided to fuel my printed exodus. Keep reading and I'll keep writing. Tank hue.


Oh, yeah, so that was last night. Today I slept in til 11:17, got up, ate some breakfast at noon, took a nap at 2:30, woke up at 6pm, ate chili, watched some TV, and here  I sit, writing.
Tomorrow I board an American Airlines puddle jumper and fly to Dallas, to Sarah, to Tim, to Alex, to Isaac, to paradise. I'll be home Friday. Don't fret, I'll continue to post. Love y'all

What have we here?

The advantage of writing a blog over writing a book is that with a book, you can skim ahead to see if the story remains interesting, and if not, you can discard it and find something else, while when reading a blog you're at the mercy of the writer- in this case, me- continually hopeful that the next post will hold your interest. Oh, by the way, the aforementioned advantage is mine. I see things from my perspective, I have no idea what yours is.

Look on the bright side; the mystery remains so. Given my penchant for conversational schizophrenia, you don't know what you're going to get each day. Sometimes I'm depressing, others clinical, often clever (mostly feeble attempts), sarcastic, reflective, on occasion I'm radically metaphorical (likely loosing a bunch of you), combative, determined, pissed, thankful, sad, scared,  but mostly and generally you will find, threaded through my posts a dash of latent insanity, keeping me from going crazy. This concoction, well structured, might make for good reading. I wouldn't know. Generally I just wing it. I jot down whatever infests my brain at the time. Imagine what you'd find on these pages if I had Alzheimer's? If that were the case, you'd probably read the same post over, and over, and over.......I'd be interested to see how many page views would show up before readers figured it out. Don't worry, if I get Alzheimer's I'll let you know, again and again and again.

Do you realize I've spent a couple hundred words and several minutes of your time writing about absolutely nothing but writing? Can you see how I reel you in with a bare hook, only to leave you dangling and spinning, gasping for content while I drone on about ................about what? You chased the line, found no bait yet swallowed anyway, reading on to at least this point, where there is no point, really. If you're now concluding this to be a waste of your time, it's too late for you. You've been unceremoniously dumped into the fish bucket of lost minutes, along with all the other "hook, line and sinker" tuna, unable to escape the dregs of a post that reeks of literature masturbation. I mean this in the most whimsical of ways. Really.

See how easy it is for me to draw a lasso and pull in the unsuspecting, tightening the noose to force cloister, to drag the bunch through my self aggrandizing drivel, holding on to all, even as far in descention as we find ourselves. Me, running the show of "show you nothing" the class of "teach you nothing", the art of writing without writing. This circus of diatribe without content is brought to you without commercial interruption and completely devoid of any common sense. It has been an exercise in fun and silliness.

If you're still reading, I thank you for your perseverance against all odds of ridiculousness. Sometimes I need to get off of the subject of ALS, of my  life, of anything material, and play word games that often head downhill into mumbo jumbo. This post proves my earlier assertion that as in Forrest Gump, paraphrased- posts are like a box of chocolates, you never know what you're going to get. Such is the mystery.

Ya know what I miss?

Building houses. I miss climbing around jobs like this and feeling indestructible, cutting virtually every rafter. I miss working with my guys, always looking for a better lunch site, the camaraderie, the challenges, the fun. I miss the sweltering summers and the blistering blizzards of winter. I miss bitching when it rains and shoveling snow off the decks. I miss blowing off a beautiful afternoon to go with the guys to a movie, my treat. I miss ending the day and feeling a real sense of accomplishment. I  miss eating lunch at Monicals. I miss the smell of cut wood. I even miss the smell of urine in the corner where everybody pisses.
In case you didn't know, I used to build houses. Amazing how life can throw you a curve......................................

Saving me from myself

I cannot escape me. I can, in fleeting form, escape ALS. I can tuck it away as I lounge in my living room watching TV. Then I pick up my coffee, or milk, or Carnation Instant Breakfast (rarely), with my right hand. You know. The good  one. I can lift the cup, I can drink from the cup, but it shakes slightly and feels heavy. I've experienced this before- last spring- in my left hand. Here we go.

I may be able to escape my ALS in times of sedentary inaction (redundant), but there's no escaping the reality of the progression of the disease. I'm having more difficulty walking each day. I imagine I'll need help eating as I lose dexterity in my right hand. I can't use a walker because my arm strength is too diminished. I can't roll a wheel chair for the same reason. (and that's a fact, Jack).

Enough with the gloom and doom. I'm tired of self assessment. I run the assessment program every morning. I'm sick of it. That old saying "a watch pot never boils" is inapplicable in my case- I watch and that pot boils right away. It's almost as if I cause it to boil. I wish it were so easy as to ignore my problems, sending them away, or to see them as at least partially psychosomatic so they would be partially non existent, but the truth is, every morning I'm reminded that they are real, and that one day I might face plant right out of my bed. Did I start this paragraph with "enough with the gloom and doom"? I was supposed to turn myself around and climb up the slippery slope. I'll turn around now.

Bulbar onset ALS affects the ability to speak, swallow, breathe, to drink thin fluids, to ingest solid foods. I don't have Bulbar onset ALS. I can eat, swallow (my pride is a tough mouthful, though), breathe and digest normally. My speech is as slurred as its always been, no worse. Eventually, even my form of ALS, which has concentrated on my limbs (all of them) will present me with these other problems. To what extent depends on the sometimes fickle nature of ALS. I consider myself lucky to be able to function as well as I do. As my arms and legs may cease to function, I might have to change my name to Matt (as in door mat), but at least Matt can eat a cheeseburger and thank the cook.

Preparing while blindfolded

I am constantly reminded, and for all practical reasons rightfully so, that I must prepare myself for my decline. I might have included the adjective "inevitable", but I can't get myself to believe in the term on any level. The minuscule "Pollyanna" buried deep within my skeptical soul refuses to allow certainty of any negative connotation to exist. I think this is a good thing. I've talked about hope before, but have avoided hopelessness because the term provides nothing useful to me. I don't adhere to it therefore it does not apply to me or my situation.

All that aside, I have discovered a new attitude amongst those who know of my debacle. I am receiving more advice and possibly less sympathy. This is not to say some people have become less sympathetic. As my symptoms become more obvious and restrictive, many people panic at the thought that I am not prepared to take the proper steps (that in itself is a bold, yet irrational term I find to be very funny) to function well. This means: Have I done the paperwork required to procure all the mechanical means necessary to function in the future? Do I know the likely progress of the disease- if I need a feeding tube, do I know how to get one installed (sounds like a stop at the brake shop to me), do I know the process required for placement of a breathing tube? Do I know how to get Medicare to pay for a Stephen Hawking wheelchair? Do I have a plan for transportation of such? Do I know how I will be able to transfer (that is, from chair to vehicle, vehicle to chair, chair to toilet, to shower, to dinner table, etc.), Do I have a caregiver big enough to carry my sorry ass when required? Have I set up supplemental health insurance? Am I poor enough to be eligible for Medicaid? Will I ever be?

Do I have all the answers? No. Am I working on all of this? Yes. The last thing I want is for my family to suffer any more than they already are by denying the necessity of these preparations. Feel safe with the fact that all of these concerns have been addressed and that, while all the answers are not yet available, all the questions have been asked.

I live in a 3 story house-

Whoever or whatever gave me ALS certainly has a morbid sense of humor! I live in a three story house (four, if you include the basement, where our laundry is located). Our 100 plus year old four square design house is also elevated enough to require six or seven steps of climb in order to enter from the front, back or side. Until recently, our bedroom was located on the third floor. We now sleep on the second floor adjacent to a bathroom. My office is also on the second floor. My typical morning routine was to head downstairs to the kitchen, start coffee, retrieve the newspaper, retrieve my coffee and plop into my chair in the living room to read, followed by a trip back upstairs with what remained of my coffee, enter my office, plop down and catch up on all the news not found in the Journal Star, check my e-mails, Facebook, LinkedIn, maybe Twitter on occasion, make some phone calls- things of that nature.

I've since been required to throw that morning ritual by the wayside. Let me project how a morning of that sort would play out today:

If I were still sleeping on the third floor,  making the journey to the second would require me to use the roof line- parallel to the stairs- as a handrail- since there is no handrail-in order to help me balance myself as I descend. After time, the oil in my fingers would create an identifiable streak in the plaster, and given enough time, a groove would develop, guiding me even more efficiently. Problem is, I don't have time to etch out such an aid and I'd likely tumble into the landing long before it appeared. On any given morning, having survived the treacherous terrain of the third floor stairwell, I would have reached from wall to wall, gaining purchase here and there to regain my balance as I stumbled into the bathroom, ecstatic and relieved at having made it to my beautiful toilet, unscathed and without embarrassing incident. After a brief respite, I would tackle the main stairs to my first floor, careful to curb my anxiousness to get this journey over with, making the entry foyer with, again, no incident. I would grope my way, grabbing wall and door frame and, upon entering the kitchen, grasping the stove top to my left, the refrigerator doors to my right and finally bumping up to the counter top where my coffee maker lay dormant. I would start the coffee, turn around and head out the front door, again fingerprinting everything in sight while seeking balance, exit the house, ease down a few outside steps, carefully bend down and retrieve the newspaper. I would re-trace my steps back into the house, drop the paper onto the table next to my chair in the living room, head into the kitchen again and retrieve my coffee. Then would come the hard part- getting a full cup of hot coffee into my living room. On a good day, I could make it  over time. I would use both hands to hold cup, hot as hell, and move very slowly, ever aware that  I cannot guide myself by grabbing a wall, a doorway or a stove. On a good day, I wouldn't spill. On a bad day, someone would have to clean up after me and I would have needed to change clothes. Anyway, I finally (on a good day), would sit down and one handedly (not really a word, but apropos) read through the newspaper. It would make no sense to describe climbing the stairs to my office with a coffee in hand because that never happened. Suffice it to say I would remain in the chair for quite a while.

Now, let me tell you, my wife and daughter are geniuses. This very morning I have been home alone. I still value my privacy, holding on to it as long as I can, and I do enjoy solitude from time to time. Starting my day as before provided less of each. This morning, I entered my office to a startling discovery: my Keurig coffee maker is now located on my desk, to the left of my computer, at the ready. I can prepare a cup whenever I want without traversing my version of the Himalayas. This day, my newspaper lies across my key board and life is good. While not an office hermit, I will say I can head down (and up) my stairs unencumbered, without anxiety, when I want, as slowly as I need and on my terms. What more could a guy ask for? I love my family.

Am I really that interesting?

Or, am I becoming a curiosity? I might see my site hit once through Stumbleupon, but these page views are not singular................. Anyway, I am extremely flattered that some of my readers hail from such diverse geography. I welcome any of you to e-mail me- in English or any other language. If I can't read it, I'll figure a way. I would also welcome e-mail from throughout the US- please let me know what state, what city, what ever. I promise to write better so as to keep everyone interested. My e-mail is tracyboettcher@gmail.com

Following is a list of countries where good folks have read my blog- more than once.............


USA
GERMANY
UNITED KINGDOM
SWEDEN
NAMIBIA
FRANCE
NEW ZEALAND --CONGRATS ALL BLACKS (see recent pic)
ITALY
MALAYSIA
RUSSIA
MEXICO
UKRAINE
SWITZERLAND
CANADA
DENMARK
SINGAPORE
NETHERLANDS
LATVIA
JAPAN
MOLDOVA
CHINA
CYPRUS
ISRAEL
SAUDI ARABIA
QATAR


I thank you for your interest and I hope you understand that ALS does not cause dementia- I provide that all on my own, as my posts can attest.

I need to continue

Fourth grade. I left off after having been hit by a car in Glendale Heights near Chicago, getting a new 5-speed and learning of a teacher shortage. I feel like throwing in a little experience that apparently left a lasting impression since I can remember it as if it were yesterday. My dad must have received a bonus or a raise at some time because he came home one day and declared that he was taking me and my two sisters to Toys R' Us. You must know, we thought Toys R' Us was some whimsical pretend location, a place we would never see. A place where everything was outside our grasp. When dad told us we each got five dollars to spend, we nearly went apoplectic! The mood in the car was insane. We all three jumped, bumped and squirmed so much the car shook. As dad hit the highway, our excitement boiled over into pushing and shoving, overreacting, taking on an ugly tone as calamity filled the back seat. Shouting turned to yelling and my dad blew his top at the height of our cacophony. I learned then that I was a born idiot. The girls clammed up immediately, but I had to defend my position. Dad just wanted us to shut up. I argued with the back of his head not knowing he was about to turn the car around. He said he didn't want to hear my whining, I complained that it wasn't my fault, he yelled at me to knock it off. I kept yapping, defending myself, arguing really. He said "That does it". Somehow I knew I was screwed and I closed my mouth. Too late. Always too late. I later learned that this tendency would become an integral part of  my personality, and that I would pass it on to my children. Anyway, dad dropped the bomb on me: Instead of getting to spend five dollars at the toy store, I would only get two dollars. My sisters got five, I got two. I pleaded, I begged, I apologized, I cried, I began to throw a fit but stopped abruptly when my dad said he could make it zero. All this time, my mom was silent. She let dad handle it, which he did, with aplomb.


So, what did I buy with two bucks? This was 1967 or 1968. I'm pretty sure it was a Toys R' Us (that's what I seem to remember) and in those days you could get some neat stuff for two dollars- not as neat as the stuff you could get for five, but I only had two, so................ I bought a Superball and a boomerang. For two dollars, yes, hard to believe, but true. All I can remember my sisters buying was one of those stupid pot holder weaving kits. Probably mom's idea.


We went back home and tore in to our toys. I ran outside with the Superball- the really hard black rubber kind that bounced literally a mile in the air (or so it seemed). The problem with  winging a Superball to the pavement is that often you hit a stone and the ball rockets askew and you have to chase it forever. I discovered this within ten minutes. I flung my Superball as hard as I could at the ground, it hit a pebble, it flew sideways and plopped itself into a  fenced in sewer treatment lake across the street. Unless they tore the housing project down, I could take you there. That lake was the resting place for anything flung over the fence. I imagine it still is. So I ran back home, hesitated a couple seconds and then tore the cardboard off my boomerang and raced outside again. I ran into a couple kids I knew; they were older than me and usually ignored me (except for the time one of them threw a football at me, which I caught, in my crotch), but when they saw my boomerang, they became my best friends. We soon found out that there is a skill required in getting a boomerang to return, one none of us had, so we treated it more like a Frisbee and played catch, backing up with each rotation. For some reason, possibly at the suggestion of one of the kids (I really don't remember), I was convinced that in order to get the boomerang to come back you had to throw it really hard. So I did, probably hoping to impress my new friends. I made sure to throw it no where near the sewer lake, winging it as hard as I could in the opposite direction. It was a fine throw, elevating and curving in a long arc, looking to swing around and back to me, only to sweep high and fast directly into the stupid lake. It never had a chance. I never had a chance. Either Karma or my dad or fate or Karma (did I say Karma?) dictated my day. Not knowing who to hate, I think I hated Toys R' Us. My two friends laughed really hard and went on their way.


Next time I post history, you'll learn of  my short but ridiculous experience at Tweedy School in California. Lucky you.

What I look like now

I know I write a lot, and often I forget to put a face to a post, so today I give you so very little written dialogue (I know this must be the wrong use of dialogue). Certainly!? So...... I give you me. Longingly observing a good friend's Tae Kwon Do class. Makes me want to post some pics from the old days.

As blog posts, this is cheating, but even I need to cheat on occasion. It helps me to prepare myself to cheat death!

Long odds, I know

I write seemingly endless posts extolling the virtues of a positive attitude, lamenting the time lost agonizing over the finite diagnosis and its effects on my mind and describing the various game plans designed to deal with my disease- fight, sidestep, walk away, pray, eat better, focus, meditate, deny, ignore, study, communicate, exercise. 




Meanwhile, ALS continues forward with its game plan. It continues to consume me. I really have no way to determine whether all I have tried has produced any effect at all. Whether the sickness has been hampered or accelerated is anybody's guess. I just hope that I never get to the point where it comes down to "Woulda, Coulda, Shoulda". Sometimes I feel like I'm throwing water on an electrical fire.

I continue to hold on to all the positive aspects of life- even mine- and look forward to Dallas, Thanksgiving, Florida, Christmas, Dallas and beyond, doing so without drugs to carry me through each day and night. I must deal with each setback as it comes, but I cannot avoid looking toward a future infiltrated with dysfunction. Case in point: Last January/February, before my diagnosis, my left hand and arm began showing signs of a problem. I saw the fasciculations and thought they were related to a pinched nerve or something of that sort. My ability to swing a hammer had already been hampered, and I began to drop things. A pencil, a piece of wood, a cereal bowl................on occasion, I had episodes of what I would call "muscle lock down"- a cramping or tightening    of my tendons or muscles in my forearm, tricep or bicep, my thumb, my wrist. Of course, after March 15, I discovered the real culprit. Throughout the ensuing months, my left has lost most of its strength, dexterity and flexibility. My shoulder, already painful due to years of stress, now makes it difficult to sleep as the disease digests my muscle mass, putting forward and downward pressure on my shoulder as my arm weakens. Meanwhile, my right arm has taken over as the Alpha (oh, yeah, I used to be left handed) and I use it for everything. Unfortunately, the ALS has discovered my right arm. I've been aware of this for some time, always trying to will it to be "not so", to no avail. I'm dropping things with my right now, my strength is waning some and the cramping and quaking (did I tell you my left hand quaked? I didn't think so. It quaked) occurs on occasion. If I  repeat the time line of my left, I can project that both arms will be significantly weakened by spring. I need it to be known that my left, even in its diminished capacity, is not a useless limb of meat. I can swing it, move it, hold light weight items and pet a dog. The peculiar aspects of this growing paralysis are many: I can't straighten my fingers without pain. I can't wave to you. I can't retrieve my wallet or slip my left hand into a front pocket. My sense of touch is strange. Smooth surfaces feel rough. My left arm and hand are slow moving. I can't eat, write, hold a glass (even if I could, I am not able to turn my wrist to bring the glass to my mouth) or page through a book or newspaper. Thank God for Kindle.

I'm beginning a new phase these days, focusing primarily on active, physical remedies, having exhausted myself exhausting the use of mind/body techniques. This in no way means I'm done with mind/body. I continue to meditate, self hypnotise and study the methodology of continuing mental health. Otherwise, I couldn't function with any degree of sanity. I just need to support my negotiations with ALS by bringing in the heavy artillery.

I'd be dead if not for friends and family

There is no way in this world I would be alive today if I had to deal with ALS all on my own. I don't let a moment go by without reminding myself that the world at large, with those whose love and empathy, through active means, as well as through passive concern, support my passion for life. I can only draw energy when there is input; alone, I'd be starved, emotionally emaciated and filled with dread and despair. By now, I'd be dead even if I were alive. Hope and life are intertwined  as they mingle in my brain, enabling me to look at everything with new realization. A while back I said that everything was slightly dull, slightly gray, less important. It is increasingly apparent that ALS has made every effort to darken my senses. I feel I am past that now, able to embrace that which is important, that which is simple. Of course I need to reinforce this sense of well being every day, knowing the bleak probability of my digression. I am constantly reminded of my disability as I attempt even menial tasks. What keeps me going is the continuous flow of support and concern that gives me the motivation to impress. If I am to remain strong, brave, I must remain aware of my contingency. I must make them proud. Happy. I need to lead an army of supporters even if into darkness. I can't give up the ship. I cannot disappoint. 

I wonder if I can go the distance. Hell, I don't know how long the race is! So far, the disease has allowed me to peck on my keyboard, even though I can't hold a tissue in my left hand. There appears to be new meaning to a stiff middle finger.

I also wonder how I might continue to write as the sun descends on me. Maybe my posts will become charitably shorter. Maybe when times are darker I will fill these pages with my pre-ALS life. I have not begun to exhaust that line of conversation. I'd guess that I would continue to lay my flesh open and reveal my inside no matter where I find myself. I might as well finish what I started back in July. Hopefully, it will take me a number of years.

Lately, I've been perusing some of my earlier posts. I find it interesting that my basic, fundamental concepts have changed only on the periphery. I have spent my whole life investigating what I believed about nearly everything, and throughout all those years my core intuition has remained mostly unchanged. About people, politics, science, God, about evolution, practical sense, about relationships, love, family, capital punishment, war, religion, ghosts, prejudice, wealth, poverty, spiritualism- about most everything- my views are largely static, only tweaked on occasion. I do admit, freely, that I have learned how to apply these beliefs and considerations to help me cope with ALS. I find myself studying more the effect of belief than the source of such. I know now that faith has nothing to do with religion no matter the semantic confusion. Faith is simply the application of hope. Faith is embedded in positive attitude. Faith can be a powerful, tangible tool for the mind.

If I were to follow the saying "It's always darkest just before dawn" I would fall into a trap. Now, things are brighter for me. Not everyday life, but every day realizations, often blotted out by life. I look at the fall colors differently now, separating the leaves from the trees, seeing the capillaries rather than the branches. Maybe I just have more time to look. Really, I probably have less time, but since my priorities have changed these observations are more relevant. I breathe differently. Possibly the creeping degeneration of my sense of touch has heightened my others. I've heard of that before........ so........... I might be trapped into believing "It's always brighter before the dark", but I consider this to be nonsense just as it's nonsense to think it's darker near dawn, as the sun nears rising. Everybody knows it darkest in the middle of the night- with the light off, with the shades drawn, with your eyes closed.

I know my situation. It sucks. I know it could be worse. I know I'm not alone. I also know that given the opportunity, I would never trade my ALS with anyone. Not even Charlie Manson. You see, this is my disease. It's my fight, my destiny. I lead my army of supporters to whatever awaits me, even if I'm rolling forward at 4 miles per hour. Just don't try to get in front of me.

Complications drive me nuts

Nothing is ever simple. When applying this fact to the reality of normal life, the ensuing frustrations can drive you mad, but in the end, things get done. Inject ALS into the mix and all those automatic functions cease to be automatic, adding new frustrations heaped upon those of every day life. Examples are seemingly endless. 

One of many:

For some reason, when I call information on my Sprint phone, they can no longer text me the number or dial it. I can actually hear (though this has to be impossible) the operator thumbing through a phone book to locate the number. For Avanti's on Main St. I am recited the number. Problem is, I can no longer write. I inform her of this fact and she says she is sorry. I ask for a supervisor who also apologizes. I get her supervisor who again apologizes, adding to my woes by admitting to having no idea why I'm upset, that she can, however, log my complaint. I have a dozen text messages providing phone numbers proving the service was once provided, and when I inform her of this, I can actually sense her "deer in the headlights" expression. This whole scenario encapsulates the extent of idiocy found everywhere, which brings to mind driving up to an ADM and finding a Braille message provided for blind drivers! I have enough trouble getting dressed in the morning and making it to the bathroom without doing a header down the stairs and peeing my pants. I have diabolical visions of finding myself in compromising positions without the ability to correct them. I feel like I'm walking on Jupiter during a massive earthquake. I can only touch my toes if you cut them off and hand them to me. I can't open a Pepsi can without help. I might even look forward to existing as a brain in a jar, as long as a couple eyes can be attached. Life for me, aside from the rest of the world, is complicated enough. I fear that the lunatic fringe is no longer on the fringe- it is now mainstream.