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.