Not a good start

Dec. 31. On I pad. Last night I had a heart attack caused by many blood clots in both lungs. 1 large clot found behind my left knee. I am in icu at Methodist im stable or I ouldnt write this I'll get back don't fret

Back to the present

All canoeing adventures aside, Dillon said it best, 'and now the times they are a changin', faster than I would like. Despite my months of focus on a healing state of mind, I am beginning to understand that, regardless of my resistance to do so, I must now focus on the bleak future I may face. I cannot deny that I am apprehensive, however I can deny that I believe that the worst case scenario is in the cards for me. My curiosity always wins out, so I've watched many a video, read many an article and listened to many a person detail the horror and complications of advanced ALS.


I wouldn't call myself an optimist. Neither would I see myself as the opposite. My philosophy tends to lean towards the concept that my future is what I make of it. I am, given my situation, definitely, a proponent of quality over quantity. Any considerations pertaining to the level of treatment, the dynamics of such treatment and the extent of its application will be mine. Soon I must choose the road I will travel if I continue toward this worst case scenario, also plotting when and where I exit. There are financial considerations, there are familial considerations and there are emotional considerations to be applied that require me to decide sooner rather than later. My choice, however, will be made based upon how I feel I can cope with whatever decision I make. Once I reveal, I will not waver from my plan, and everyone will be able to relax and enjoy my company.

Yes, we are moving to Dallas in the spring, to join my daughter, Sarah, and her family, including her hubby, Tim, and my grand sons, Alex and Isaac.  Rachel, already establishing her photography business here, will also be taking her talents to Dallas. Nick, now living in Chicago, will soon be touring around the country in some fashion and we will likely see him in Texas as often as in Peoria. Keep in mind that our transition south in no way impedes our efforts to visit our many friends and relatives here. It's not like I'll need to take time off work.






Besides the obvious reason for us to choose Dallas, there are several considerations, including the fact that I'm probably a couple of months from not being able to navigate stairs safely. I can't expect anyone to catch me if I pirouette out of control. Winter snow and ice will be a major problem when transitioning to and from the car. Again, I don't want to put anyone in the position of having to catch me. Add to my winter woes here is the potential for the inevitable scenario whereby I step gingerly into the cold, hob down a few steps and realize I really, really have to pee. In my condition, there is no way on God's green earth I'm going to make it inside and to the toilet in time.

What is all the fuss?

Me, I have to live with the cards I've been dealt. My only chance at a positive resolution is to bluff my way past ALS. I've written many a post identifying my concepts regarding mental and physical activity designed to help thwart the progress of my disease. To date, I have no idea as to whether I've had any success at all. Back in the spring a cold blooded fish of a neurologist in Chicago told me I wouldn't be walking by Christmas. My plan was to set up an appointment in December, stroll into her office and (figuratively, of course) kick her in the ass. Well, while I can slowly rise from my chair and slowly, awkwardly, with trepidation, hobble a handful of steps, the only way I could (not figuratively) kick her ass would be if she were to lay on the floor, face down, while I laid beside her, on my back, Amy lifting my right leg, positioning it over her backside, letting it loose, burying my heel in her rump. Somehow, I can't see this scenario playing out with the effect I had desired. As a consequence to the feared play by play, I never made an appointment. Her loss is that she will never know what it is like to share an office floor with a stud like me. I suspect on her best day she drops the bomb on a patient and on her worst day she does the same. I win my battle with her by simply failing to add diversity to her life. Small victories- they all add up. In this case, my victory was obtained through inaction, the best kind these days as action is so difficult.

I am all about experimenting. My only concerns include my disinterest in throwing up, my abhorrence of acute pain and my fear of incontinence. I receive almost daily e-mails from the St. Louis chapter of the  ALS Association. Nowadays, I simply open them, skim the content and discard them. Not one communication offers a single suggestion for remedy. Fundraising positively trumps treatment and imagination. I understand the need to raise money, the need to raise awareness, but, to me, a handful of researchers scouring the world for alternative treatments might be more productive than a car wash designed to raise a few thousand dollars to fund research on the effects of certain chemicals on rats  infected with ALS. We've been running the same game since Lou Gehrig.

Think about this------ consider the last 100 years. We have gone from the Wright brothers to interplanetary travel. We have gone from Einstein to quantum mechanics. We have gone from Henry Ford to, well, Ford. We have gone from Alexander Graham Bell to Verizon. We have gone from a mechanical adding machine to the ipad. Technology, physics, engineering, aeronautics, transportation, communications and the like have transformed the planet while Western medicine, which views alternative and holistic measures to be archaic, has failed to advance at a rate comparable to other technologies. While the focus and design of Western medicine, for the last century, has been chemically based symptom treatment, the rest of the medical community, a larger family, has the resources of centuries of approach to healthy living, natural remedy solutions and philosophies and wealths of alternatives not considered by its counterpart. I'm not saying that either concept for health holds the key to unlocking the mystery of ALS, more so the Western medical researchers are looking under the pharmaceutical tree while the rest of the world is searching the entire forest. Meanwhile, I drink my herbs and continue to keep my feet in front of me, digging into the soil while clawing for anything that may increase my drag.

I'd better get busy

The longest stretch between posts has just passed. Family is still here and I want them to stay forever. So much having been taken for granted over the years has been supplanted with a realization of what is really important that I have trouble absorbing the impact. I see much in a different light, maybe not so bright, but clear as day. 

I could detail our holiday here but I feel Amy would be the better choice to weigh in, what with her syrupy, down home verbiage, her honest and happy approach and her heartfelt ruminations. I might be inclined to skewer the experience with macabre sarcasm, normally clever, here maybe inappropriate.

  

As for my health- the general subject of this string- I wish I were in stasis, but I can't seem to get my hands on a flux capacitor. I am tired of and generally disappointed in daily assessments. This complicated week I have lost the consistency required for an effective battle against ALS. Today I plan to get back into a practical rotation- Wet cell, meditation, Chinese herbal treatment, hypnosis, honey water, garlic, pine nuts........... each possibly a part of the solution, together, hopefully, a big enough piece to produce a positive effect. I'd cross my fingers if it were currently possible. 

Last week, I hinted at the prospect of our moving. Today I am letting the cat out of the proverbial bag. We are moving to Dallas in the next few months. My assignment throughout this winter is to avoid slipping on ice, cracking my skull open and spilling my brains over the snow, creating an artwork of red and gray, simultaneously relieving me of the only vestige likely to remain of myself if and when ALS takes over all that is left. I joke, in poor taste I know. With my nearly extreme lack of balance and diminishing strength, falling badly looms large. I, however, believe that EVERYTHING is a laughing matter when the opposite is negative or depressing. It is ALWAYS funny until someone loses an eye, so.......... until I actually fall and bash my brains out, everybody has my permission to laugh their asses off. 

Little sleep, too anxious

Soon the sun will be up and I'll have been awake for an hour or so. Family from Dallas arrives noonish and I can't wait. This Christmas is special. I'm excited and fruit dog (this term was coined by me some 20 years ago and means melancholy). A reveal: this may be our last Christmas in Peoria. 

I missed my calling this year. I should have kept the beard and bleached it white. Since picking up ALS, I have picked  up weight. All in my belly. I was told I'd lose weight. I was told to eat a lot. Add fat to my diet. Put mayo on everything. Leave it to the medical profession to get it wrong on nutrition. Never did they ask what I did for a living. Had they posed the question, they would have found out I burned more calories in an hour than the average middle aged man burned in a day. Once I quit working, as I followed their directions, my pant size had only one way to go- up. Now that the gut is staring me in the face, it's tough to get rid of it when I cannot exercise as I should. One consolation- It doesn't matter much that I can't see my shoes, I'm unable to tie them anyway. It's all good- I have a lot of big shirts. If you see me, feel free to call me a slacker. I'll recognize the sarcasm.

If you read my last post, you can see I don't give a darn about diet. Truthfully, most days  I do. Christmas time calls for exception. I'll set the Jazzy at a higher speed to burn more calories.

This week we received a month's supply of special herbs from China. We found a handful of clinics in China that have had some success in treating ALS patients- or maybe not. Rather than jump a plane to experience TCM, we bought herbs used in their treatment plan. If I show any measurable improvement that can be attributed to the tea, I plan to start learning Mandarin. I started the tea yesterday. Worst tasting crap ever ingested. Smells like chicken soup. Tastes like chicken shit, only worse. I guess Kids will be here in 4 hours. Can't wait. Whoa! I need a shower! Amy? whatever doesn't kill you makes you stronger.

Enough with ALS

Tomorrow, Sarah, Tim, Alex and Isaac arrive in Peoria and the Christmas season officially begins. I want to set aside all unnecessary conversation about my predicament and revel in the holiday. If I had a vote, I would change the name from Christmas to Family Day because I find the medicinal effect of my kids, their kids, my friends and my extended family to carry the day- Somehow, I think God would have it no other way.

This year all my kids are home. This year, more than others, will be about the kids. My niece is providing us with her beautiful new daughter to fawn over, Alex is old enough to remember this year and Isaac is no longer the baby he was last year, but a little man. The change in him, to me, is extraordinary. I expect nothing less than happy mayhem .

I cannot commandeer the kitchen as I once did, but my influence will be visible. On tap this weekend shall be- as an appetizer at Suza's- a crock pot of my personal best chili, toppings to include cheddar cheese and sour cream, adorned with Frito's Scoops for, well, scooping. At home, Christmas day, the opening bell will announce my Egg Breakfast Extravaganza. The later rounds shall offer a bone in spiral cut ham with my secret pineapple/orange attached glaze weep, cooked in and later slathered on. The championship rounds shall consist of- leftovers.

I expect to offer rides on my wonderful Jazzy both days. The only requirement is that you think I'M COOL. I promise not to bite. I will do my best not to break any ankles.

Let's lighten the load

I can only philosophize for so long while trudging through the muck of my situation. Lately, the muck has been running deep and stinky, filling my nostrils with caustic attitude, my neck sore from holding my face above it all. I gotta get out of this place.................


Let's go back 21 years. Sarah is eleven, Rachel is nine and Nick is seven. Summertime. I decided to take the kids canoeing. In Missouri. On the Current River. By myself. Nick can't swim a lick. In hindsight, Amy was nuts to let us go. The kids are still alive so you know this story has a happy ending.


I'd canoed the Current before, with a bunch of guys, a bunch of beer and with a bunch of inappropriate intentions. Our usual was to pick up canoes at Aker's Ferry, ride a bus up river, put in at Baptist Point and float back to Aker's the first day, put in at Aker's the second day and float, slowly, to, I think, Pulltide. I don't know how many miles exactly, but a healthy trip for two days. I figured me and the kids could move faster than a bunch of gravel bar loitering boat drunks (and I mean that in a good way- some of those guys are still alive and might stumble upon this post), so I planned to set up camp at Pulltide and run the river from Baptist in one day. Despite me in a canoe with a seven year old potential anchor and the girls in another canoe for the very first time, we actually managed to hit camp before sundown. Surviving the trip was fortunate for everyone- surviving unscathed did not prove to be an option.


If my recollection proves faulty or if I forget something, expect my kids to weigh in and set the record straight.


In the interest of expediency, I will jump to the insanities and heights of irresponsibility fair to heap upon myself. We can all laugh now, remember, because nobody's dead. I am going to limit this narrative to 3 episodes:


Episode one- Sarah and Rachel hit a half submerged fallen tree while navigating a long fast curve in the waterway, over turning and overturning, allowing the river to fill their canoe with all of the force of the flow, jamming their ride against the tree and engaging all their hair within the branches- a fortunate development as the canoe left from under them and abandoned them hanging. I somehow remember a heroic rescue by me. I almost crapped my drawers.


Episode two- We pulled over to an area where we could jump into deep water from about 20 feet above. Nick had no interest in even looking over the edge so he stayed with our boats. Sarah and Rachel followed me up to the launch pad. Sarah has no fear, so I jump first and she followed. Rachel couldn't even get herself to look down. We climbed back up and tried to coax Rachel to jump. There was no convincing her. After some more cajoling, challenging and teasing by Sarah, we both realized Rachel would never jump. She remained at least 30 feet back. Sarah plunged for the second time. I looked back at Rachel, shivering with  fear and turned toward the river to see that Sarah was safe when Rachel screamed bloody daylights and flew full speed past me and off the cliff. She hit the water mid-river, swam across, stood and waved. I almost crapped my drawers.


Episode three- Another cliff, this one higher at 26' (you ask how I know how high? I brought a tape measure) with faster water underneath and a harder climb to the top. Rachel and Nick stayed back cross river. Sarah and I crossed and climbed. I wanted Sarah to go first. She never hesitated and leaped out. I watched her hit the water and go under. I waited but she did not surface. I panicked and jumped  wide of where she submerged, came up fast and scoured the surface. No Sarah. I was afraid I'd miss her if I ducked under to look. Thoughts spun out of control. I might even have looked for blood. After what seemed like an hour had passed, she popped out of the water about 50 feet down stream. I barreled over  and yelled at her; she looked up at me, unperturbed, and simply stated "One of mom's flip flops fell off and she would kill me if I lost it, dad. Sorry." I almost crapped my drawers.


We all made it to the camp alive, I grilled hot dogs and we discovered the biggest danger of the weekend: the campsite toilets. And, again, I almost crapped my drawers.

Maybe a clarification.....

maybe vast confusion, maybe neither.

Every morning I unfold like a pair of rusty pliers, my muscles and tendons feeling like death clenches. When I finally summon enough strength to swing to a sitting position, usually with a friendly push from Amy, I rock back an forth to find my center of gravity lined up vertically over my knees and I push straight up. Once standing, I stretch again, careful not to strain too much and blow out a calf or thigh, my right leg performing a perfect thumper impression. I step cautiously toward the dresser, gain purchase, step to my left and grab my robe from a hook on the inside of the open closet door. As I slip my  left arm into the sleeve, my body reminds me  why I got up in the first place. A mad dash to the bathroom looks more like a blind man being chased by dogs. Once relieved, my day really begins, such as it is, such as they are.

Yesterday I wrote about fear and I touched on death, on dying. I probably elicited a cringe or two when I  broached the subject of afterlife using terms like judgment and halos and pitchforks. My intent was unintended. I have no interest in questioning anyone's faith, belief or religion. I have my own faith, and while it would seem unconventional to many, I'm of the belief that all faiths are unconventional. I prefer to strip faith down to it's essence, discarding any rules of engagement, all distracting proclamations and directives. Whatever I believe is my property. I'm not looking to sell it to anybody. I feel that everyone on earth is seeking the understanding of what is truth, each on a different path, all  paths leading to the same end. No matter your faith, the real conclusion and discovery will be the identical. To quote, I think, Yogi Berra: "Wherever you go, there you are!", or, if you prefer, Jim Morrison: "Slip on through to the other side".

Fear

I've rarely mentioned fear. Put yourself in my shoes and ask yourself if fear would be an emotion to deal with, and if so, what would you be afraid of? Pain? Increasing disability? Creeping paralysis? The loss of privacy, of dignity? Frequent muscle cramping, spasms? Losing the ability to swallow without aspirating food or liquid into the lungs? Requiring access through your gut into your stomach (something like the gas tank filler on your car), a shorter route food depository? A one inch tube sewn into your trachea to enable you to breathe? Losing the ability to speak due to an afflicted tongue, a paralyzed palate? Core weakness requiring a back and neck brace to remain upright in a specialized wheeled device? Massive loss of musculature, hyper metabolic digestion? Lowered auto  immune system? Complete quadriplegia? Infection? Blood clots? Pneumonia? Death? Judgement day? Eternal nonexistence? 

You can hypothesise, but you cannot know. I couldn't tell you how you might consider fear any more than you can understand mine. 

My fears? To my core, none of the above. I consider it seriously peculiar that fear is not one of the emotions I must deal with and rail against. Don't get me wrong, I am cautious when I stumble near the edge- after all, I don't want to crack my skull, I don't want to complicate my already complicated life- so I remain wary. 

I follow no process to ward off fear, I am simply not afraid. I figure if this stuff creeps up and grabs me, even day by day, I will be able to adjust to it all, day by day, essentially fielding the volleys as they come. As horrendous as ALS is, the disease gives me time to deal with its symptoms. If everything were thrust upon me at once, my coping methods would be overrun and I'd likely panic. 

Most interestingly, I do not fear death. I do not believe I will be judged and placed based upon the kind of life I have led. I'm not looking to discover a gold ring over my head or feathery wings behind me, or for that matter, horns or pitch fork (how did a farm implement become a tool of hell?). For me, I don't know what happens when I die, and furthermore, I don't care. With the life I've had, I don't need to think I'll be going to a better place simply because I can't imagine being away from my friends and family would be more fun. So dying is a downer, I don't expect to do so, and living will be the option I take as long as it's presented to me. Living is a sure thing. Dying, I know, is also a sure thing, but one that needs to be put on top of the procrastination basket. After I'm dead, nothing is a sure thing. I  suppose, lacking the fear of the unknown, seeing death as an unknown gives me no basis to be afraid.

From all I've read, ALS simply constricts people like me, hoping to squeeze the life out. I can play it a couple of ways- I can tighten my gut and fight or I can exhale and slip from its grasp. I'm beginning to lean toward the latter.

Another day, another story

I have a morbid fascination with the goings on within my body. It is difficult to define the particulars without a control with which to compare. I'm really not interested in discovering the extent of symptoms of other ALS sufferers simply because I would rather learn mine through my own experience without external influence. My journey must be virgin. I would rather be blind to the possibilities, my brain uncluttered with the angst of the paths of others. I've had enough negative imprints to shrug off, those informing me of my mortality and my fate without a visual imprint of where I might end up. Mystery is much more inviting than probability or statistics. For those not afflicted, likely also many of those who are, knowing what's coming would be the preferable track. Problem is, nobody can guarantee the progress and those who claim to know are charlatans, damaging anyone they delude, afflicted or not. If I'm told I'm going to get punched in the face, I brace for the shot and take it on the chin; If I'm told I might suffer an assault, I can devise my defense knowing getting hit is not a forgone conclusion.

Breathing, swallowing and talking

I am, I am and I do. Breathe. Swallow. Talk. A lot. All the time. Hopefully not borrowed time. So far, ALS has been sated with the consumption of my arm and leg muscles. It has reveled in attempting to trip me up and eat into my stability and confidence. I am determined to continue to skirt the abyss and push myself beyond any expected capability,  all the while knowing I'll likely hurt those around me more than myself if I crash and burn. I need to push myself both mentally and physically lest I fall into a chasm of resignation. I will walk with risk, always ready to "trip the light fantastic" whatever that means, likely not stumbling over a Tiffany lamp. If my fingers continue to curl, I will continue to force them straight. If my knees buckle, I'll pretend I'm dancing. If all else fails, I'll flail around seeking to grasp anything stable and pirouette one handed to the floor. Funny it is that if I lean even slightly in any direction I run the risk of becoming a human juggernaut, propelling and accelerating until I either dive bomb to the ground or halt at an obstruction. If I eliminate the potential for pain and injury, the visual imagery is hilarious. I might have to label myself the "bumbling ALSer".


A tough realization is that now, with my condition, I cannot be a protector, relegated to the ranks of those needing to be protected. I have spent my whole life protecting: physically standing up to any kind of aggression, handling any financial dangers, foisting my verbiage upon those who intended to insult or upset my family, bucking the cheaters and con men. While I can still deliver a potent tongue lashing, I am helpless if things become physical. Adding to my dismay is that I've been involved in Taekwondo for 24 years as a student, teacher (15 years), 5th degree blackbelt master (7 years) and would now loose a battle with a Ziplock. If the house is burning, figure on roast Tracy for dinner, because I'm not going anywhere fast. I have to accept that two years ago, I could outrun my entire family, whereas now my 18 month old grandson can dust me (unless I fell on him and got back up quickly to finish the race before he recovered and whipped my ass). All is not lost, though, as I am apparently still adept at hurling sarcasms and demands, crossing every line of civility and reason, often as a result of my frustrations with my limitations. Don't for a minute believe I see this as a positive development. All is not lost only because I still have the fight in me to be cantankerous. My wife, inundated with a million new duties and responsibilities, takes the brunt of my ass holeness (crude, sorry). I have designated her protector general manager, while Rachel is bodyguard emeritus. I am a king on a Jazzy, demanding everything of my minions. I intend to make myself a fair king, a just king- one who rules from his roost with a kind gesture and soothing words for those who care for me. All I need now is to find the source for a personality transplant.


All kidding aside, I've come to a point where I must weigh my words better, careful not to alienate myself from others. While I will never accept fate, I must accept reality. Meantime, look for me at many public functions, either hobbling, rolling or stretched out on a borrowed gurney. In the next few weeks, Nick will be performing in Peoria and I don't want to miss feeling the pride that temporarily drowns out my ALS.

I hope you've prepared........

I am home from Florida and back at it, although not at the Cyberpower super computer designed to withstand the most graphic heavy gamer use available. That PC piece of crap is presently fried green tomatoes. I switched my Logitech keyboard to my always functional, always reliable 8 year old Apple G5, knowing deep in my heart that my PC experience is not a rare event, but the price you pay for the price you pay. I erroneously thought that my PC would have been too embarrassed to crap out when residing right next to a fully functioning Mac that is old enough to be its grandfather. I am convinced, now experienced with both platforms, owning a Samsung net book slow junker as well as my PC desktop, that any criticisms of Apple are borne out of jealousy, inexperience or ignorance. My guess is that those hard liners would rather suffer through ownership of three $800 trashcan worthy HP's than one $2,400 long lasting, faster Mac. I could do without the aggravation.

Enough about the nonsense. OH, maybe not- my loving Kindle is apparently out to a permanent lunch. It might be caused by my reading selection, now lost- Steve Jobs. Don't it figure.

It's time to explain why we found ourselves basking in the sunshine of Naples, Florida this past week. We have friends (I am ever thankful for them all), in this case, friends who have a beautiful 3,800 square foot home on a canal in Naples, a vacation home replete with a pool, outdoor spa, indoor Jacuzzi and myriad amenities. They simply handed us the keys and said "have fun", which is what we did. I plan to put Amy at my desk to describe an amazing week. Look for it.

About my condition:

It still sucks to be me. Of course, it would suck a lot more if not for all the love and support I receive, but it still sucks. I feel it necessary to update my condition at least each week because I read changes in my physiology nearly every day. Sadly, these changes are not for the better.  My capacity to function physically is partially measured by my capacity to cope. I am much less steady than a month ago. My fingerprints can be found on every surface within reach. So far, no prints can be found on any floors, nor can be found any clear footprints since my walking mimics what you do to mix up a deck of cards. When fingerprints are found on the floor, you will know I've splatted. Likely, only right hand prints will be visible since my left refuses to cooperate. Nose prints may also be available, sorry for the blood. I have a hell of a time lifting my left foot high enough to enter a car. Usually, Amy guides it over and shoves my butt into the seat. She is very good at levering me- into a car, a bed, a chair, a couch, the pool, the bathtub, the shower; I lever myself onto the toilet, just in case you were wondering- and I know you were wondering.  Drying myself off after a shower is highly ineffective, posing a definite problem when dressing- try pulling tidy whiteys up wet legs with one hand. Hell, I have enough problem finding the leg holes without snagging a toe. Socks can stay in the drawer. A shirt? As long as one is close by, the pits don't stink too bad (especially the right one, usually a near miss with the deodorant), and very large, I'll slip it on. By this time I am so exhausted that the idea of walking melts down to riding in the chair. I need two hands to drink coffee, one weak, one worthless, both burned. My left shoulder screams for steroids as the weakening continues to wreak havoc with my tendinitis. My feet are beginning to swell as I approach a more sedentary life. If I could walk more I would, but I know those around me see me as an accident waiting to happen. In my case, a big one. Other than that, I continue on as jovial as ever as I prepare for Christmas, even donning a big belly and exhaling a hearty "oh! oh! oh! You want more? I'll give you more. Tomorrow.

Still in Florida

It's not cold, it's not raining and it's not snowing, it's not windy (though a breeze flows), it's not hot, it's not overcast and the pool feels splendid. I have a lot to tell, however the positioning of my laptop keyboard will not allow me to type for very long. When we get home, expect a tsunami of posts- until then, please enjoy a break from my drivel.

I'm still around

This is the longest span between posts since the inception of my blog, and is to be the shortest. I failed to explain that we are in Naples, Florida for a week. I'll get back soon.

Emotional sources

Before I get involved in the emotional roller coasters attached to traumatic events, illnesses and calamity, let me explain to you my position and belief when it comes to the association between my psychological issues and those physical, in this case ALS.

I have determined, and conclude that there are no experts in the world when it comes to ALS. Neither modern Western medicine nor ancient Eastern medicine really have much of a clue as to the origins of the disease or how to treat it. My need to visit my neurologist is fairly non-existent. I know what's going on, I'm dealing with it as best as I can, and until I get a phone call from him expressing a new, effective treatment course, I will manage my own method, thank you very much. I am not deluded into thinking I can do this by myself; the support I need is already in place, and it does not include doomsayers and warners. I believe I'm smart enough to ready myself for the worst case scenario, all the while ignoring it as I deal with the steps I take day by day. I am my best expert. ALS is a disease that can be identified only through an individual, case by case study. A scientist or doctor can study it, log his observations, make his report and come to his conclusions, but unless he has the disease, he will never really understand it. Even if he's afflicted, he will only have the information pertaining to his own version. Also, keep in mind that a clinical scientist hasn't a clue how to analyze the emotional trauma, which leads me to...............................................

Schools of thought vary in their analyses of heightened emotional activity related to ALS. Some feel ALS is the culprit responsible for emotional distress. I say yes, though indirectly. If I had terminal cancer, the cancer would be the culprit. If I broke my neck and ended up a quadriplegic, the accident and it's result would be the cause. Lesser trauma, coupled with pre-existing issues might well produce even more emotional dysfunction. The only way to analyse emotional issues is through the patient, in this case me, and his ability to set into motion mechanisms helping him to cope. Identifying and compartmentalizing emotional causes has nothing to do with any specific disease. Labeling and generalizing outbursts as ALS symptoms is simply inaccurate. It is easy for me to blame everything on the ALS. It is also wrong.

As personal testimony and experience tell me, I can easily tell you that my escalated emotional discomfiture can be divided into two groups.

Group #1: Casually, I'll explain- an example- I may be watching television and during a scene involving angst, sorrow or reconciliation, joy, or most other scenes emoting any kind of human interaction, a phrase or visual cue will cause me to tear up. These are trigger moments. I instantly take the bullet that forces me to envision a familiar comparison to my  own life, my own situation. These incidents are not long lasting. I see them as little releases. I see them as good for me.

Group #2: Expressed emotional release based on realization- I might struggle at something, become frustrated and break down as a result. The trigger here is usually related to my incapacitation, my diminishing abilities. I might forge foolishly into the dark, "worst case scenario" of my future and feel sorry for myself. In any case, I feel this is not particularly medicinal for me, possibly necessary.

I find myself easy to read. I can assess my condition  better than anyone equipped with all the standardized information printed. I don't care if a doctor or a care giver or a shaman or a priest or anybody else out there has dealt intimately with a thousand ALS sufferers, they do not have the ability to understand my version of the disease, they can all only work to  help me cope. A human cannot tell a centipede how he feels until he walks a mile in its hundred moccasins. I am the centipede.

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.