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!