Food for thought

For the last few years, before ALS, I found great pleasure in the kitchen. Cooking pleasure. I started inviting family over for Wednesday night "Boettcher Feast". I concocted a different recipe each week, experimenting with variations of recipes I found, tweaking them and trying them out, using the local relatives as guinea pigs. I never killed anyone and if they got sick, they had the courtesy to stifle any bodily rejections until they exited the premises. I have printed up nearly a hundred of these concoctions. Since I have developed disabilities restricting my actions in the kitchen, I have been required to skip some Wednesdays as of late. Pre- ALS, I usually held the kitchen captive and demanded I did everything myself. Now I need help, and if I have to share in the preparation, I can't be so demanding.

I want to share. I already share my ALS experiences. I'm beginning to share my history. Now I want to share my recipes.Today I would like to post a recipe that gets my "top five" rating. I cannot claim it to be an original because I found it on line and I can't remember if or how I adjusted ingredients. Whether I did and how are irrelevant. This recipe cannot, in my opinion, be improved upon. 

Crazy Cajun Shrimp Etouffee Cream over Garlic Noodles

Feeds 8-

Ingredients:

3-1/2 tablespoons butter
3-1/2 tablespoons flour
1 chopped red onion
1 chopped green bell pepper
1 chopped red bell pepper
2 stalks chopped celery
6 cloves fresh garlic- minced
1/2 cup fresh basil- chopped
1/2 cup fresh parsley- chopped
1/4 cup tomato paste
1 10oz. can clam juice
1 tablespoon Cajun seasoning
1/4 teaspoon cayenne pepper
1-1/2 lb 26-30 count raw shrimp (e-z peel deveined)
1 cup heavy cream
1  tablespoon Perod
1/2 teaspoon sea salt  

Noodles-

1 lb Fettuccine noodles
3 tablespoons butter
5 cloves fresh garlic- minced
1/2 tablespoon brown sugar
2 tablespoons fish sauce
1/2 cup Parmesan cheese
green onion garnish

How to:

Make etouffee by melting butter in big (big!) skillet, stir in flour,  add onion, peppers, celery, high heat it while turning, lower heat to medium, stir in garlic, basil, parsley, tomato paste, clam juice, Cajun seasoning, cayenne pepper, ground pepper sea salt. Get it simmering, add Pernod, drop in shrimp. Cook for 5 minutes. Stir in heavy cream, thicken. Lower heat and cover.


Boil water, cook noodles. During this time, melt butter in second skillet (regular size is OK), add garlic for 2 minutes on med/high. Stir in brown sugar, fish sauce, stir for 2 minutes. 
Drain, shock noodles, toss in bowl, dump garlic mix from skillet on to noodles, burn heck out of your hands by mixing noodles and sauce, dump Parmesan on noodles, toss together to coat noodles. 


Noodle up individual plates, serve big skillet cream over noodles. Drop a green onion on each plate. Eat.

An end note- shrimp can be replaced with chicken- pre cook chicken. Chicken won't taste as good unless you hate shrimp. Pernod can be replaced with any licorice liqueur. Leave out or alter ingredients at your own risk.

I forgot about the chicken

In my haste to hop a train in Minnesota, I forgot to tell my chicken story. I cannot spend time writing about every little episode from my past, so I exhume only those experiences destined to have an impact later on in life. Amy pointed out that my second grade chicken incident qualifies. 

I am guessing this thing happened in the summer between second and third grade.

Background: We lived on 5 acres in Wonder Lake, a hay field with one old oak tree by the gravel road. A farmer cut and baled hay each year. (Not related to chickens, but)........................one summer, after the farmer had baled the hay, me and my friends dragged all the bales together to build a fort- that's nearly 5 acres of bales- only to discover the farmer loading all the bales on his flatbed the next morning. I think he actually waved to me. If I'd known what an expletive was back then I would have used one.

Did I say background? Oh, yeah- Our next door neighbor, about 100 yards away, was a man named Brennan, a retired cop. He had the idea of raising chickens for profit. He bought a hundred chicks and let them run amok in his basement until they were mature enough to be let out in his barnyard. They could then run amok outside and he could clean six months worth of chicken crap off his basement floor.

I often hung out at Brennan's, and one day he offered me a chance to take home dinner- if I could catch it. I ran home to ask mom if I could bring a chicken for dinner, she looked to my dad, who laughed and said if I could catch one, dinner would be chicken, as long as I helped in the process. I was thrilled, ignorant of the "process" of which he spoke. I headed across the field to fetch dinner. I remember running a lot, isolating the bird I wanted and finally catching a hen, flapping and squawking. It took a while, but I managed to hold the wings down and the bird calmed and I passed through the gate toward home. As I approached my back yard, I saw my dad behind the garage and held up my prize. He laughed and motioned me to where he had a board lying across saw horses (It's vague here, all I remember is an old board). He had a hatchet. A dull one (I soon found out). He took my chicken and plopped it on the board, holding it down. He handed me the hatchet. He placed my right hand on the bird and told me to press hard. He then backed up and said " Give it a whack, Trace!" By it, I figured out he meant the neck, stretched out in front of me, attached, if temporarily, to a little dinosaur like head, which twitched and jerked like all chicken heads do. I don't remember hesitating, but I do remember that when I swung down, awkwardly, and the hatchet met the bird, I didn't come close to severing anything. The dull edge managed to crush something; the chicken, I think, had a stroke. I managed to hold it down and my dad said to hit it again. I did. And again. And another. Finally, after several strokes, none accurate, I hit wood instead of sinew and bone. Blood was everywhere. The neck was now two and the bird was now headless. And alive! My dad said to let it go. The live, headless chicken flopped off the board, hit the ground and took off through the yard, strangely, though appropriately silent. It listed to one side and, after about 50 feet, flopped over and was still. I will never forget my first "dinner kill", but for the life of me, I can't remember eating that chicken.

A bit more history

As I have made clear, I will be jumping, on occasion, from ALS to the days of old, weaving through a number of experiences that have made me who I was before the disease. I'm still the same guy, I  just don't want ALS to think it's the result of ANY lifestyle, especially mine. I would give credit where due- in this case, none has been found, none shall be awarded.
Third grade, spring time, I think Minneapolis. My dad running McDonald's there with a guy named Pat Bauden. I doubt he reads my blog, I haven't seen him or his family for 44 years. I do remember he had several kids and an above ground pool teeming with reptiles and amphibians. Anyway, the job was short lived. Why do I bring this up? Because while there, while living near railroad tracks and near a five and dime where you could get wax lips, and where the kids played on and around the tracks and where kids, me included, put all kinds of stuff on the tracks to get squished, I actually climbed a ladder to a boxcar on a moving train- a slow moving train- sat in the open car with my friends and jumped off in a nearby freight yard. Yes, this is true. I also learned how to produce and project the perfect spit wad. For a while, evidence of my prowess could be found on the ceiling over my desk at school. Other than the spit wads, I have no recollection of my classroom other than the memory that it was on the second floor and had big windows.

Take a close look at your third graders and try to imagine them hopping a freight, even a very slow moving freight. I have raised three kids who were all third graders at one time and I can't fathom it. I must have been an idiot child. I never told my mother. Mom, if you're reading this, you must remember your elevated, bleached, teased beehive hair do. I remember it well. Focus on the memory you have and try not to imagine those you don't. I didn't die and you didn't have to worry. Oh, mom, do you remember the rail car, converted into a small cabin, along with a half dozen others set in a little park? Remember that we lived there a short time? Where I found a salamander? Where we talked about Martin Luther King? I do. It was swell.


Push forward to fourth grade, Glendale Heights, IL. We moved from Minnesota to the Chicago area where my dad picked up a McDonald's job in Maywood. The sixties. Shoulda been named Mayhood. Anyway, we moved into a housing project dominated by Italian Americans (or so I was told), backing up to the back of a small strip shopping center (yes, they had those way back then) dominated by an Alpha Beta (I think) grocery store, a barber (from hell), a coin laundry, a bar and  Ben Franklinish store (candy central to us).

I'm going to be brief here- We lived in a townhouse, I owned a 26" 3-speed bike, I got hit by a car on a nearby highway while waiting on the shoulder as my friend delivered newspapers. I didn't get hurt despite flying over the lady's Mustang, bouncing on her hood, the top, off the trunk lid and into the gravel. My bike, however, was bent in half. The lady asked if I was OK, I said yes as I picked up my pathetic bike,......................and she drove away. I carried my sad bike home where my mom read me the riot act. I later spotted the Mustang in the parking lot near the bar and the barber shop, still wearing my scuff marks stem to stern. My mom led me into the bar (she was not the barber) where I identified my hit and run driver. She and my mom negotiated a settlement and we walked home $55 richer. I bought a cool 5-speed. 


I'm going to be brief here as well so we can get out of Illinois.....................I attended school,wearing a hat to cover my new crew cut, emblazoned (get used to it, a crew cut can be emblazoned upon a 10 year old) upon me by my evil dad (while the rest of the world had hair), envied a kid named Joey Cambell, who sported a curly black mop on his head and pointy Beatles shoes. I also learned that my knowledge of geography exceeded that of my teacher, Mrs. Wright, which put me in the dog house for arguing that the Mississippi river was NOT the world's longest, even when I offered to accept either the Nile or the Amazon. She would have none of that, so she sent me to the principal for a swat, where I learned there was a teacher shortage and  was told to be patient and let things slide. Remember? I was in fourth grade! Little did I know that this would be the least of the peculiarities I would have to endure before the year ended. Soon we all got in the car and headed to California.........to be continued...............................

A lot of things.......goin' on.

I need to be perfectly clear in addressing something, a subject, more a question, that has come up recently, apparently gnawing at some readers. I can understand the difficulty brought forth when considering whether to even ask...................................do I embellish, do I exercise my right to creative license, do I parable (yes, I know, nobody "parables", but I liked the way it sounded, it is my blog, and I rule this particular world), do I add fictional details to juice the story? What you really want to know is if I make shit up. Do. I. Make. Shit. Up. -Nope. I don't. Real life situations, in hindsight, have all the richness I need. Do I remember whether it was sunny or cloudy that Saturday in 1966 when I helped my mom drag my dad out the back door of the garage? No. Did I include a weather report for that day? No. I didn't even think of it because I have no recollection................. If I can recall, you'll eventually hear of it. If I can't, you will find a hole in the story some screen writer can fill in when they make the movie version. I never spent any time considering my life's history contained so much craziness until I started putting it to screen (as apposed to paper). I have not even scratched the surface of my ocean of experiences, ranging from ironic to tragic to funny to really funny to hilarious to embarrassing to sad, to literally unbelievable to painful to exhilarating to confusing (many of these) to dangerous to really dangerous to insanely dangerous to romantic to happy (worth repeating) to happy (again) to happy to.... well, you fill in the blank____________________. All with one thing in common: All fact. Not Based on fact, not inspired by fact (you know, those movies that finished off with all the involved characters dead- such as The Perfect Storm and the one where the couple eventually got eaten by sharks). Real life holds the most interest because it is real. Anything made up is only as good as the telling. 

I do need to remind you of the first half of a post a while back culminating in a guy discovering he'd lost his arms and legs in an explosion. That was not me. I still have all my limbs- they just don't work so well. THAT story was made up. By me. I can make shit up when I want to. I simply threw that in as a metaphorical comparison to my situation. The main difference, very important, is that his change was instant. Mine draws on and on and on. Two different kinds of horror.

Today I had to have my wheelchair loaded as I ventured outside the house on an adventure. Later, my father in law brought up a reality I hadn't thought of before. You must understand, I don't ever want to be seen in a wheel chair. For that matter, I don't ever want anybody to see me walk funny. The former is inevitable, the latter is history. I have an aversion to appearing needy. I am terrified to actually be needy. With ALS, the choice is not  mine. I need to learn to accept my situation and use the tools  that help me and those who have to haul my sorry ass around. Gus (that's my surrogate dad, actual father in law) pointed out that I wouldn't feel embarrassed using a cane, crutches or a wheel chair if I had a broken leg, knee problems, a  back issue or any other injury. He's right. I must embrace that which helps me, those who help me. Makes sense. 

I need to conclude this post and get back to bed, but before I do, I must let it be known that I plan to continue writing my autobiographical history, chopped up into short narrative, totally free of continuity, free of pace, free of fiction and full of fun. I can only write so much about ALS before it becomes too dark and depressing for me. I'll always relate my thoughts and post any updates- this shall remain an ALS- whaticantellyou blog, but if I fail to stray from   it's path on occasion, the story may end badly. So I interject and I segue and I sidestep away from Lou Gehrig on occasion so as to maintain my sanity, presenting to all of you glimpses of my life- a gag gift if you will- in the hopes that the good times trump the bad as I relate my journey. 

If you put my life on a scale, my life pre-ALS on one side and life with ALS on the other, I posit the pre-ALS side would hit the table so hard that the latter would be catapulted so far as to be gone forever. Maybe if I write enough about the good times I can tip the scales in my favor. Only good thoughts. Thanks. T.

Good days, bad days

I'm struggling with what to post these days. I feel the need to lighten the mood with sarcasm, humor, offbeat commentary or  anecdotal witticisms. I look for the upside of all this while struggling with the annoying realities as they become apparent. I know my messages become exercises in redundancy but I continue to come back to the same issues with a slightly skewed viewpoint begging to be composed on these pages. ALS is creepy and relentless. It doesn't affect cognitive reasoning, yet it does. It causes a million blunders in reason purely by destroying voluntary muscle function. As an example, when I sit, my legs feel normal. They remain strong (though this may be a relative term), they lay properly, they look normal and I can move them to my will. My cognitive process functions normally when I am seated, when the ever present ALS is less obvious, but when I stand up and start walking, the disease shows its teeth and my cognitive brain is thrown off base. I SHOULD BE ABLE TO WALK NORMALLY! But I can't. I don't. My mind cannot come to grips with the transformation. As a result, when I'm required to walk any distance, the farther I travel, bumbling, the more distressed I become. This distress is mostly mental and can last far beyond the action that triggered it. I can not seem to be able to deal with this these days. I also try to speed up, not so much due to embarrassment (though this does play a part), as to my desire to get done with it. I need to get to  point B quickly so as to lessen the imprint on my brain that the struggle is monumental and growing. A broken leg heals, you see.............

I am anxious for November 13 to get here so that I can prove to my family that I am still able to travel without help. I simply need to navigate puny (though upscale by Peoria standards) Downing International (are you kidding?) Airport, sit for a couple of hours (this I am good at), arrive in Dallas, ride a wheelchair out of the gate, step out and transfer to the world of my daughter, her family and heaven (for me), hug 'em all and slip off into la la land for a week. I will be bringing along some of my favorite recipes, my Kindle and a backpack of clean underwear. Life, if you don't consider my ALS, just can't get any better.

I must return to my dilemma. My newest blockade of desperation is tangible, if not effective. For the last several months, I have worked on the mind/body concepts, I have learned how to relax myself, both physically and mentally, I have developed ever changing coping mechanisms, tweaking their application to my immediate needs. I am not, and do not, intend to take any drugs  to help me get through this mess. I understand that anti-depressants help a great many people, ALS suffers for sure, but I would rather learn to cope on my own. So far, I've managed. I can't say if that will be the case in the future. I may discover a breaking point down the line. I may welcome a drug induced euphoria, or catatonia, or coma. I have never been normal, add ALS and the end result may require drugs I never knew existed.  So, before that time comes, if it ever does, I will be exploring the documents of Edgar Casey, the stories of Traditional Medicine, Mexican stem cells- whatever has a whisper of an effect. Even if nothing works, (I've said it before), I will enjoy the ride, the adventure, the hope.  

I look forward to posting while under the influence, ala Timothy Leary, though I doubt LSD will be the mind changer of choice.

A slow news day, so..............

I have an itch, so I need to scratch it. My catharsis is to straighten my crooked left middle finger in order for it to join my right at my Logitech keyboard, conveniently lighted (the keyboard, not the finger), enabling me to see the letters as I pluck at them. On an equipment run, I will divulge that, while still a Mac guy, I write this blog using, as I said, a lighted Logitech slim keyboard, black, which I love, a custom equipped radically fast gamer computer loaded with a multiple gigabyte video card, terra byte hard drive, i7 super dooper fast processor, liquid and air cooling, transparent sided housing for any computer geek's viewing pleasure, on board temperature and humidity gauges, coupled with two 24" Asus HDMI connected LED monitors only one half inch thick, sound provided by a pair of Klipsch speakers and a killer Klipsch sub woofer. I need all this in order to facilitate my blazing speed of probably 20 words a minute when I post. Truth is, I jumped ship from my always reliable Mac G5, 8 years old and repair free, for a PC because I needed to have a PC platform in order to run an auto cad program, Chief Architect X3. Too bad Apple can't run their program- I blew the PC video card one month after purchase, a keyboard later, and need to continue to stave off virus attacks. I cannot say enough about proprietary hardware. Also, RIP Steve Jobs. Whatever your fancy, ask yourself how many times you've had a problem with your PC. This concludes my critical rant.

• Some days, nothing significant flows from my head. Today is one of those days. This is not to say today was insignificant. It was. This in itself is significant. Today, I felt the same as yesterday. No better, no worse. I am still infused with optimism and excitement at my new plans involving Cayce and TCM. I feel like starting today, but it will take time to find a Baar wet cell for a reasonable price and herbs from China don't exactly grow on trees (some must). 
• Are these bullet points? How should I know? I was trying to get spell check to re-activate and I hit something that fired a bullet, so. there you are. I think bullet points are designed to be brief and to the point, so I'll have some fun with the brevity. 
• This post is, largely and briefly, pointless.
• ALS may be the cause of my problems within this blog, but I can assure you I have numerous others, mostly ignored and abandoned here- until now. Let me point out that..............
• Most of my life I have been something of a control freak, a boss. ALS put an end- kicking and screaming from a mental bucket- to that.
• I rarely used all the steps when ascending or descending stairs, now I grab for support as I move step by step, both feet meeting each tread.
• My balance point is now 5 degrees from top dead center, anything more and I hit the ground in the direction of the lean. 
• I clap by placing my left in front of my chest and hitting it with my right.
• My smile remains symmetrical.
• I need to invest in slip on shoes. Not the corduroy slippers you're thinking about.
• I need to find out if I can still operate a fishing pole.
• Amy asked me if I wanted to join her at open volleyball and I found it to be very, very funny.
• I also get a laugh out of the invite from the ALS Foundation to join in a march.
• I can still drive nearly as poorly as I did before.
• So far, I can count my fall downs, post ALS, on one hand. The same cannot be said for my pre- ALS years.
• For some strange reason I now wonder how long it would take me to milk a cow one handed. Twice as long, or would I get tired?
• Does my dad read my blog? (extremely unlikely) If he had access, would he? I know he's a reader, but.......................
• Claire, I want to stop by soon.
• I don't have a best friend- all my friends are the best.

• It is disconcerting that I could cry at the end of Transformers- Dark of the Moon.

Ok, so you read this far, and as this is true, you have been sucked in by a vortex of drivel. Musings without depth. This is the kind of stuff (with the exception of the Claire line) that flows from the vacuous space between my ears when the status quo is present, when no movement, forward or backward, can be detected, when I think without thinking. Don't take it personally that I laugh inwardly when I think of those who have come to this paragraph and outwardly at those who admit it. I find it difficult to look at things on the bright side when my future is overcast, but your foolish loyalty is like a ray of sunshine on a cloudy day. I thank you few.

Good news, three weeks ahead

I am going to Dallas in a few weeks for a very much needed visit with my daughter and her family. I haven't seen my grandsons since Orlando, and with my condition compressing time, it has been much too long since I hugged them. I need to put my mind in the right place and leave it there. The best medicine for me is to continue to be a part of their lives. I can take any amount of pressure and anxiety, whether it be ALS or our financial chaos or a cloudy future or a mouse loose in our house (true), provided I can witness my grand boys cheer me up by acting like a couple of knuckleheads.

Let me break stride with the moment to explain my last post. It must be made clear that my mind is whole. I retain my senses. I don't come close to expressing the myriad thoughts coursing through my brain. I  must continuously sort and chose those thoughts that make for logical conversation, written or spoken. Put yourselves in my shoes. Follow my path and try imagining all the internal outbursts, censoring them for expression and hoping you're not too depressing or sarcastic, too hopeful or optimistic (yes I can be too optimistic; falling down from too high can be problematic), too analytical or sad or happy or mad, too cheerful or glad (rhyming with no reason, I know, but I can occasionally be too silly). I can't hold resolve for more than short bursts. I will continue to wallow in a sea of guesses until I crack the code or not.

I am going to begin researching outside the realm of practical solutions because there are, simply, no practical solutions. I can't afford to drive this car until it quits, I need it serviced so it lasts longer. If I had a bad heart, I could replace it. Bad kidneys? I have two, if they both go bad, I sign up for a transplant. Bad liver? Bad hip? But I have a neurological problem and nobody does brain transplants. So, I am planning to get out of Dodge and grab at elusive, obscure and less researched possibilities. One such possibility is a complicated procedure concocted by Edgar Cacye. I can build my own wet cell and my cost is small. I am aware that many of you are now Googling him, and if you read for ten minutes you'll know more about him than I, but that's OK. I will know more than you by tomorrow morning unless you view this as a competition and are planning to also stay up all night. The bottom line here is that I have found documentation showing some success. I'm tired of trying to think ALS out of me. At least, with Cayce's treatment I will be changing my diet, eating gold, electrocuting myself, etc. (well, not exactly, but close). I will be taking action, and if that doesn't work, I'll find another action to take. In addition to all this I am ordering herbs from China, increasing my acupuncture sessions and am enlisting Amy for massage in order to simulate Traditional Chinese Medicine. If I'm going to get picked and poked at, I want to have a say in how and who. If nothing ever works, I will at least know that on October 23, 2011 I decided to become proactive with my  own health. If  you shudder at the possibility of success in the world of mysticism, clairvoyance, Eastern culture, electricity, spiritualism, needles and herbs, consider that if I don't try this stuff, I have already exhausted the meager offerings of my doctors. They are very kind and sympathetic, but as I already know, kindness and sympathy don't cure ALS.

I look at it as an adventure.

I'm tired of due diligence

Stiff upper lip. Positive attitude. Look on the bright side. Avoid negative energy. Pray, God will help. Have faith. Everything happens for a reason. Cherish each day. It could be worse. Live life.


Forewarning: This post contains material unsuitable for those who subscribe to the notion that I am a pillar of strength, a fortress of power and will, that I am any more than a man who was dealt a shit hand and am finding that "all in" isn't going to win me the pot. I don't always sugar coat my thoughts, but I write after reflexion and self analysis. My conclusions may be dark on occasion but they don't represent the gut emotions as they manifest themselves. Today I spit out how I feel AS I feel it. Every morning I get up and bang off the walls on my way to the toilet. Each day I discover a new challenge in the form of diminished balance, increased dysfunction. EVERY DAY. A little reminder that I am on a downhill ride, and so far I can't get off. Dressing is a bitch. I huff and I puff and moan and groan and it does no good. I have trouble holding the newspaper with two hands. I spill my coffee on the way to the living room unless I pour it into a quart container. My teeth are scared because the tooth brush enters from the wrong side. I need steroids injected into my left shoulder to calm an old injury come to life thanks to ALS. I'm beginning to understand that the joys in life need to come to me because I cannot search them out. Entering and exiting a car is beginning to pose a greater problem. 
I seem to be best at sitting. Once I sit down, I don't feel much ALS effect. My legs look normal but they don't function properly. Sitting down asks them to do nothing, and I'm alright with that. So, with all this in mind, pardon me if I don't get up- I mean no disrespect.

Home alone and still ok

Today is one of those rare times when I find myself alone, expecting my solitude to last all day. Amy is nervous at the thought I might fall or otherwise injure myself, unable to recover to a phone. I carry my cell with  me, so unless I render myself unconscious, in which case I can get some rest, I can call 911 or the morgue or whatever. I jest because I'm not worried. I don't have any plans to crack a tibia, and if I had, I don't do a very good job of following through with my schedule anyway.

A current event: Last night Amy took me to the new Golden Corral. First, I apologise to anyone offended by my critique. Maybe your experience was more pleasant.  We arrived around 5:30, the place was hoppin', folks lined up slightly out the door. Once we got inside, customers were rounded up and guided through a short maze not unlike a ride at six flags. I looked ahead for a ramp leading into a cattle confinement station. At the counter, we picked up our cafeteria tray, loaded two drinks, moved along, paid almost 28 bucks (exorbitant) and waited a short time for a table, navigating ourselves through the hustle and bustle of patrons hauling food from various stations. We were seated at a table possibly large enough for four, crammed in with a dozen other tables, mostly occupied, chairs bumping, medium level chaos all around us. Now, I wasn't expecting Texas De Brazil, but this was much too reminiscent of my high school cafeteria to be enjoyable. The construction of the place screams CHEAP,  light fixtures hanging from the ceiling, blindingly bright, might have been picked up at Unclaimed Freight or Walmart. The ambiance would have improved with a couple dozen 8 foot florescent tubes- you know, shop lights. Looking across to an East wall you can see the fluid filling station for the waitresses, in all its glory: soda machines, coffee dispensers, large trash cans, wash tub, supplies, all in plain view, undisguised by partition or curtain.. Now, sometimes I like to catch a glimpse of an open kitchen, but I never, ever want to eat in full view of the scullery. I have something of an eye for design, and it is obvious that nobody spent too long on the spacial relations desk with this place. Small front foyer plus large dining  area equals lines out the door. Wait. I'm wrong. Once the word gets out, the foyer will become huge and vacant and half the dining area will be converted to volley ball, accessible through a side entrance. For now, the tables are too close together, the staff uses your table, while you're eating, as a staging area for dirty plates. I actually had to pull in my largely worthless left arm to allow space for a bus tub while the waitress (loose term in this case) took plates from the adjacent table. I was almost claustrophobic; I swear I could smell the arm pits of everyone who passed by. I couldn't help but be reminded of the original Blues Brothers move when they sang "Rawhide", whips crackin' and references to round' em' up. I now understand the name "Corral", I dare not even ask about the "Golden". Possibly I'm not qualified- I never visited the restroom. (sorry, overshare). 

Oh, yeah, the food. Salty, but not bad. I'll have a proxy check it out in a year, providing the place hasn't been converted into a Weight Watchers Center.

Bring on the entitlements!

It is true, I will soon have help from a care giver. For now, my helper comes in the form of my daughter, Rachel, who has been acting as such since she returned from the Baltic. I'm relieved that the whole process of qualification is behind me. Any re-evaluation is months away and by then I'll welcome the  upgrade. Macho Tracy would refute any need of help with everyday maneuvers and tasks, but macho Tracy is getting his ass kicked. I try not to dwell on what I can't do, which helps, but my current problem lies within that which I do with great (and increasing) difficulty. Dressing is so time consuming I ask myself "why bother?" My left arm is no more than a meat glove and my right is taking notes. I walk like a walrus on stilts and will face plant if I try to hurry myself. I bring this all up because it is real, but I must reiterate that my attitude has changed recently. Instead of dread, I carry defiance. I just read an inspirational post written by an ALS sufferer. She, who has had ALS for 17 years (11 on a ventilator) , stated, sensibly, that ALS can kill you but it cannot take your life. She is my new hero.


Probably my worst anxiety strikes at the heart when I recall that barring some miraculous event I will get sicker each day. Only a little, mind you, but it remains an evil constant I can no longer deny. I deal with it lest it deals upon me. A constant reminder revolves around preparedness. Help and equipment is available, it simply takes forever to complete the acquisition process. I like to think Amy is on top of it, and she  is. Thank some unnamed supreme entity for Amy. Most times, a worst case scenario is one that rarely comes into play. In my case, it is the more likely end game. My arm will not heal, it hurts at night and it serves no real purpose. Shoulder roast, anyone? All kidding aside, each day I must count my digressions, count my blessings and thank my Lucky Charms the latter still out numbers the former. Meanwhile, there's a wheel chair in the car and a Jazzy motorized high tech scooter in the garage. Guess I'll keep on chooglin'

History 2- just the good stuff

Starting at birth leaves a long, long history to relate, and I don't want to digress into a history book, boring most of the populace, so I will serve up only the juicy meals of time gone by. Expect little snacks, lunches of variety and occasional full course meals. My life, along with family, is chock full of oddities, excitements, foolishness and adventure. We shall go where every man has gone before. Be prepared, it's a bumpy ride........... I promise to offer up snippets so as to prevent overload.

In a previous post I offered up a couple of scenes related to barnyard antics involving cracking my skull and clotheslining myself on electrified barbed wire, so I need not mention them. I was maybe 8 when that stuff happened. I could talk about fabricating a spear using a broom handle and a knife, bridling our pony, "Peanuts" and mounting him with the spear, at 8 or 9 years old with the idea of riding the mile or two to my cousins house, carrying his birthday present crosswise as I traveled, taking a short cut through the woods, across a stream and between closely growing trees- too close-, snapping his gift across my lap, but I find this escapade too typical of my youth so I won't mention it.

Sometime in 1965 or 1966, after my dad had built a playhouse for my sisters, replete with window treatments, wood siding and a shingle roof, we watched from our laundry room as a tornado snatched it from its slab like Dorothy's house in The Wizard of Oz, after which it was decided by mom that we pull the wood landing inside our garage and dive into the crawlspace. Did I tell you tornadoes are LOUD? Well, they are.

From a dark place in my memory, I reluctantly bring back a Saturday in 1966 when I stepped into the garage (I might have been beckoned by my mom, hysterical), to find the car running, my dad lying underneath. My mom asked me to open the overhead door, but it was nailed shut. She had turned off the car and was pulling my dad from beneath. He was unconscious. I recall a bottle of booze on the floor. I helped mom drag him outside through the back service door. She called an ambulance and he recovered from the incident, but my mom probably lost a little of her mind that day. I was young enough to be unsure of the true nature of the event. This is my story, so I tell it, and at the outside chance (and that is very outside), that he reads this, I say truth is truth, there's no denying it. An impact is an impact. I'm just glad he didn't succeed.

So, life rolls on, bumps all over the place.

To be continued.............

Aftermath

Good and bad, I qualified for a part time care giver of my choice- except that my first choice, Amy, is ineligible in the state of Illinois. I have been granted 4.75 hours per day, 6 days a week. Now I can ask for and receive help performing all the mundane tasks formerly taken for granted. I won't go into details. I expect Rachel to temporarily fulfill these duties. She helped me in New Zealand and knows my limitations. If my condition worsens as I've been told, I will fire Rachel and hire a big German woman named Gretchen, experienced and distant, obedient and strong, who speaks no English. She can tote me around like a rag doll.

A brief interjection

This morning I prepare to face an unwanted reality. Sometime between 9 and 10:30am, a representative from a care giving company called Doors will interview me in order to determine my state of need. I assume questions such as: can you put on your own pants, socks, shoes, can you prepare your own food, can you feed yourself, are stairs difficult, have you altered your bathroom routine, etc. all of which I can manage only with difficulty. This interview will establish the amount of time I might be allotted a care giver to help  me. My first concern is that they ask me to demonstrate my deficiencies and my secondary concern is that the state of Illinois has any money to pay for the care. I hate to qualify for any need based program. Sucks.

How 'bout some history?

I have written and written and written about my current status, my post diagnosis past, my thoughts, my fears, my expectations (few well defined), my self prognosis, my yada yada..................................... Only once, a while ago, did I divulge some self history, namely my several conks on the head. I begin to realize that those who know me only know one of my past lives. I apparently have many. Until recently, through my connection with friends, I considered my life as one entity, divided into sub entities and experiences. From my perspective, this concept holds true, but through the eyes of friends and family, perspectives identify individual versions of me (ha ha, more than one of me, you poor souls). My family, outside of immediate, have no connection to my taekwondo life and friends, as they also have no connection to my involvement with the blues society, with my six years as a grade school basketball coach, with my playing history and coaching history in the Junior Football League, my history as a builder in Peoria for 26 years, or with my escapades as a maniac. Likewise, the friends who have connected with me in these endeavours know little of each other. I think it's high time I give a little outline of my life. You can determine if any of this history supports the nonsense that ALS is my penance for such a life. I will try to stay chronological, no guarantees.

Warning: This may get long winded, as is my verbal affliction.

Born January 30, 1958- Woodstock, Illinois- 7lbs. 11 ounces, 21 inches long, big feet, lumpy head.  

From my birth until I was two, I can't remember much more than hunger, a wet butt and hunger. My first memory of any distinction had to put me at around two and a half. My sister is almost exactly two years younger than me, and she had to be three to six months old when I recall I was in our family car, some Chevy or Plymouth (don't expect me to have known the model of car we owned in 1960), standing on the hump in the back seat, leaning on the front; we are driving along, my dad at the wheel, my mom seated in front with my little sister on her lap. Try to put yourself into this picture- I'm sure the lap belts are all stuffed within the cracks of the seats, never seen, never acknowledged. Well, as I said, we are driving along, not likely on our way to church, when, for reasons unknown, my dad stomped on the brakes and we all lunged forward. I was blocked by the bench seat in front of me, my big , lumpy head and my skinny neck whipping fore and aft like a ball on a string. Mom wasn't ready for the abrupt action and bopped forward, I might guess bouncing her head on the metal (in those days) dash, launching my bundled sister to the floor. I remember thinking this was fun until my mom cried out and my sister began to wail. I don't remember crying, but I probably followed up at my sister's cue. After that all I can recall is that my dad took stock and determined nobody was really hurt and continued on. Here I must insert a similar story that occurred in 1979 involving me, Amy and Sarah (all of whom survived). In 1979, My work vehicle was a 1973 Ford window van that produced no heat and was generally a piece of junk; its only convenience was that it held my tools inside, out of the elements. It had a couple of bucket seats in front and a bench directly behind. At the time, our only other car was a first generation RX-7 with no back seat. In 1979, there were few child seat regulations and no seat belt laws. When we drove the RX-7, we wedged Sara's little, now entirely illegal car seat between our front buckets, behind the console. No tie downs, no straps, just old fashioned friction. In the van, we had seat belts all around. On the herewith described day, I set Sarah's front facing (nobody had yet invented a rear facing unit) carrier on the passenger side, behind Amy. We must have been in a hurry because I failed to run the seat belt through the holes in the car seat. Either Amy or I plopped Sarah into her seat, strapped her to it (no 3 point  harness in those days), got into the van unaware Sarah was nestled into a free flying ejector seat, and took off on down the road, heading into Peoria from Bartonville. The trip was eventless right up to the event, occurring as I neared the intersection where you could turn north toward the airport or continue straight into town. As I approached the light, it turned from green to yellow to orange to red, and after an instant of indecision, I slammed on the brakes just like my dad had 19 years earlier. I braced for the stop, as did Amy, ever aware, neither of us giving a thought for Sarah's safety, as she was strapped in and bolted down. NOT! As we deduced later, her seat flipped forward, driving her little, soft (not so soft) head, face down, into the back of Amy's seat. She instantly began to scream. I was torn as to what to do- keep my foot down and risk crushing Sarah's  head or letting up and coasting into a collision. I chanced the latter and rolled through the red light, through a deserted intersection and off the road. I jumped out and spun around the van to meet Amy as she uprighted the seat and checked Sarah for any bulged disks or flaccidity. I could be imagining this, but though she wasn't injured, the look on her face was a classic we would come to recognize and fear- she was pissed! I'm sure we eventually went on our way, but I couldn't ignore the proof that history repeats itself, at least in this case...........................

To be continued, intersected from time to time with relevant information on my present condition.

Late night entry

I am learning to deal with my limitations. Every day I look for any perks related to the infliction of ALS, and surprisingly, every day I find them, in increasing fashion. I've received occasional correspondence, unanswered, from weaker minds, that has suggested that part of me brought on ALS in order to reap its rewards. Ya' know? I might be inspired at the notion I had the mental prowess to shape my future, replete with a terminal illness except for the confusion incurred within me that I can't seem to shake it. 
Bad vibes come in all shapes and sizes. I find often that an acid delivery of a potentially curing concept proves detrimental to my health. There is no need to define any subjective culprit, only a need to produce an objective solution. I've recently come to some rather startling conclusions. They relate to state of mind and how to process thoughts that do more than pay lip service to  the problem. As is my nature, I fight to survive. My aggressive efforts until recently have proven to aggravate most situations and produce aggravating results. I now feel compelled to pull an about face and direct all my fury upon the negative signals I've encountered. Whether these bad vibes are real or perceived, perception is reality and they all must be  pushed away, pushed down, trod upon and vanquished. Only then can I spin 180 and deal with that which matters.
Second, just the other night, at 2am before the first day of Amy's huge garage sale, I woke her up, we digressed our conversation into a distress filled battle, full of frustration and angst (I'm an expert at being a pain in the ass these days), deploring (not a word, thanks I don't care) and depressing, when she made a point that had never occurred to me. I meditate every day. To relax, to sleep, to relieve stress. I visit abstract concepts all the time. Raising enlightenment isn't one of them. Escaping time isn't one of them. I like to use the term meditate because it feels all encompassing. More probably, I am self hypnotising. I create morphed reality to escape my multitude anxieties and visit the land of ................................Nod. I can then sleep, or rest or collect myself. A byproduct to all of this is the perception (and ya' know, perception is reality), that I am slowing down the progress of ALS. I believe this to be true. In my minds eye I hope to figure out how to beat the disease, and slowing things down gives me more time. Amy made a ridiculously valid point: If I can slow ALS down, why not stop it by the same means? Why not dig  in, slow things down, dig in some more and halt it  cold? Even if the results aren't definitive, the process is already in place. I see that I am chasing the disease. ,I have it by the tail and I'm pulling. I just need to pull a little harder. 
Now, to those perks: It must be clearly understood that I did not give myself ALS for the benefits. Any positives I've discovered are just that- discovered. I had no notion of any advantages to becoming  crippled, paralyzed and dead. Only an idiot would wish this upon himself and only an idiot would suggest that he had. That being said, there ARE some good sides. Some people like this blog. They tell me so. I am putting out a little entertainment and since I have more time on my hands I can muddle  and befuddle  ad nauseum, something like a rotten, though addicting sit-com. I'm closer to my friends and family than ever before and each day is brighter, crisper and more important. This may sound crazy, but by and large, life is good.

Simplification

OK, I admit that my last two posts might have crossed some kind of referential line between narrative and docu-fantasy. Problem is, I often expand my thoughts and experiences through metaphorical story, and it might get confusing when I parallel terminologies when they have specific meaning to me. I could simply say.....yadayadayada if I were a man of few words, but I am not. No words can explain what I'm going through, so if I kept my mouth shut, it is certain that nobody would have a clue as to my situation. So, as a converse,  I blab and I parallel and I simile and I blab hoping some understanding bleeds forth. Some of my concepts are oblique, but rest assured nothing I write is parable. All I write is a direct extension of factual material. Nothing about ALS needs to be expanded upon. There is enough material borne of the disease to fill pages forever. I just have my own way.

After all that, my basic message, and my most recent post identifies a culprit not limited to ALS ailment. It references the entanglement of a negative, or terminal diagnosis and how it steers the emotions. Many  sufferers never get the bad vibes out of their heads. No cure, as a statement, is inaccurate. Terminal disease follows suit. These disastrous words implant fatalistic thoughts that never dissolve. They must be overcome. If a soldier KNOWS he will die in battle, his fight, seen to him as a lost cause, has been lost. Tell him there is hope, however little, and he will have reason to give his all. All we need is to be given a fighting chance.

Chain of Events- Ha!

Everyone has heard of the term "Chain of Events", assuming its use as a connection of evidences leading to an unalterable conclusion. A paper trail to the truth. A road to the answer. I posit an alternative variation. For me, a chain of events is  a loosely worn noose of rough links, heavy, infecting and painful, skidding to and fro over my collar bones. Each link represents the nasty presentation of a negative thought or an assumption or a supposed foregone conclusion. None of the chain is interconnected with truth, held together with a composite of fate mixed with nary a wisp of hope. I wear this device. I received it last March and have been puppeted these long months as its embrace has tortured my being. It is a constant, unyielding reminder of my weakness. I haven't the strength to remove the albatross. My mind has been subjugated by the power of false conclusions. My future has been foretold by statistics and my life is forever changed. The noose will never grow tight because its design is to stifle, to control progress, allowing time to prepare for the inevitable. This psychological harness bleeds into my mind to remind me that all progress is forward, entropy rules the universe and that my direction has been dictated. I hate it. The chain tells me everything. I am its whipping boy. Each day I deal with a small discovery borne of its message and each day the chain proves a fraction of its accuracy.

I have a plan. My new plan is to practice ducking. Soon I hope to duck out of this slack prison. I imagine a quick spin to accompany my move. I expect to turn as the weight drops, to stare it to the ground, to untether myself of the negative apparitions surrounding its disjointed links, to watch it lite, entangled as the conviction of its duty blows from sight, as the symbolism of loss and despair gutters out in ashes. I will then turn, free from its death embrace into a lighter future- a future always there for me, no matter my end.

I am ready for this transition. It is unconnected to spirit, to faith or to energy, yet I draw from all, purposely undefined, as I take a wobbly step forward. I am ready.

These last few days have been particularly rough for me. I am finding things going on and have difficulty mentally adjusting to them. I don't want to sit, but soon I may have to. My strength is waning. I have some pain. Soon I will work through this phase. Each coming day I will be implementing a better course for me, one that will help my family, my friends. My new view and belief is that I must deal with each symptom rather than try to overcome its effect upon my body. I must stay proud and strong while my body weakens. I must embrace my new problems, squeeze hell out of them and see how little effect they have on the real Tracy. I don't need to beat ALS, I don't need to fight every day, I need to stay the same inside, in my mind. ALS is a disabling killer. It is also a mental killer. I can see how the mind could go first. I can see myself going loony long before the end. I can also see that I shed that thought when I shed my noose. I'm done with the past that contains the foolishness of diagnosis and depression. The term "They can kill me but they can't eat me" used to make little sense, but now I find it a perfect match for my situation. ALS may eventually take my life but as of today, the thought of my end will no longer gnaw at my brain.

So, I have not yet begun to fight (did Rocky say that?), and  my battle is no longer a problem for me. You are reading the first post in this series that has been written to include, mid sentence somewhere here, an epiphany. I have concluded that ALS can not and will not cannibalize me.

Don't expect an end to this series just because I might finally have a handle on my problem. All the realization and optimism in the world can't keep me from writing about my experiences. I still have ALS, I still need to tell of my experiences, I still need to pick and poke at the chain noose lying behind me, prodding its forlorn,despicable parts in order to expose the bad things which have throttled my mind these long months. Everyone can learn from my planned dissection of bad karma. Everybody knows of someone who was told they would die from cancer in 6 months  only to learn the better truth. Stories of gloom and doom abound, many with happy endings. My story is already happy, if not yet ended. See ya.

Creative License

I never heard a thing. I never had a chance. I planted my boot in the soggy ground and drove forward with an energy new to me, pushing to escape, but through my hope coursed a river of despair as the razor rice, thrown by an enemy to a wedding, ripped through my sleeves, my trousers, not stopping at flesh, not stopping at bone. My flak jacket, though shredded, held back the onslaught, my head, bowed low with my thrust to escape, was spared the fatal rain. There was no pain, only intrusion. Arms, legs quivering, my balance compromised, my once seemingly limitless energy seeping from my limbs as the blood flowed from a million tattered wounds. Though I couldn't see it, I pictured my green fatigues gone crimson, gone to rags, gone to scraps and remnants of their former selves. I knew in that instant, the fraction of a second from realization to reality that my life was changed forever. I went down, boneless, to the wet ground, to darkness.

They told me it had been weeks. To me, time had no relevance. I looked out on a hospital room, sterile and unimportant. I remembered everything, nothing. I felt everything, nothing. I sensed that things were bad but I couldn't place the problem. I couldn't turn my head. I felt pain, dull, throbbing aches at my shoulders and at my hips. I'm in a chair, I guess. Someone behind me, talking to the back of my head. I caught few words, more a tone than a statement, more a sympathetic gesture. Something about preparing myself, about how lucky I was, about the others, the not so lucky ones. Then he wheeled me toward a wall. I could see a large mirror, dirty yet serviceable, mounted near a hallway. Some guy was checking out his hair, quickly backing away when he saw us. I never laid eyes on that guy again.
I don't know what I expected, but I got more (and less) than I bargained for. It wasn't me, and then again it was. Same face, same..............................face. All the rest was gone.
That damned flak jacket. It did it's job. Too bad.
All in an instant. All in an instant.

Sometimes I feel like this guy. Sometimes I envy him. ALS plays out as a timeless disease. Any trauma renders its victim instantly. One day you have the use of your limbs, the next day you don't. ALS draws from its victims minutely for days, weeks, months, hopefully (crazy thought) for years. A little takeaway every day. Time enough to assess your situation, adjust to your limitations and wait for the next adjustment, and the next, and the next...........
As impossibly difficult as this is for me, I do believe it's worse for my family and friends. I am sure that the worry, the fear and the sadness in them will be compounded by the progress of the disease as the level of care giving increases. I may get better, but measures must be taken to accommodate the worst case scenario. Medicare is not exactly a well oiled machine. Planning ahead is essential, and depressing. Once I schedule to receive a power chair, I can expect to wait up to 30 weeks for delivery. Everything takes forever. I don't have forever.
Besides the obvious symptoms, my core strength is weakening, like an eaten apple perched on a trash can lid in mid summer. I need to slow down and be careful when I walk. Soon, I may slow to a stop, and when that happens I sit my ass down. Forever. I will push that thought as far away as I can, but it still lingers, no matter where it lies. I must be especially careful on stairs. Concrete steps scare me the most. I sometimes travel down stairs backwards, so as to fall "up" rather than to the bottom. I've installed literally hundreds of handrails, never really considering the importance of such, but now, I rely on them to help support my increasing girth, and I hope all those railings I put up survive their purpose.
ALS is an insidious disease. It travels through the body with stealth and breaks it down cell by cell. I search continuously for correction. Within, without. So far, nobody has an answer. Maybe everybody has. Maybe ALS will make a mistake and bite its own ass. One can only hope.

NZ Part Four (Quad)

These recent posts have to be the laziest efforts I've put forth since my first entry back in July. It's not that I have any lack of material to write about so much as it is a relief for me to share a great positive amid a plethora of negatives. I seem to want to dwell on this segue to New Zealand and glean all I can from my my experience. I want to keep it as fresh as I can before it slips too far into the past. Somehow, keeping it near in a figurative sense pushes my future farther away, rendering it less clear, and I like it that way. Call it living in the past if you will, I prefer it to the alternative.

Trio, this time with pics

More to come......................................................

New Zealand Pics- part trio

Still doesn't compare to being there............................ oops, forgot to upload pics

New Zealand Pics- part deux

On and on................

A Pictorial Synopsis of New Zealand, Part One

While a thousand pictures, unedited or photoshopped, are available in all their glory, even with my ugly mug adorning many, our twenty or so videos need work before we can upload them for your viewing pleasure. While I promise not to bore you with all one thousand snapshots, I do plan to bore you with a dozen or two. This is not the final word on New Zealand. I am in the process of writing a post, soon to be available, about much of New Zealand that will provide compelling documentation as to why every human being on earth (not already living there) should visit at least once. I could provide a travel guide of my own creation. Meanwhile, enjoy the pics.

Home at last

We are home, after a seamless connection of Planes, Trains (not) and Automobiles (bus), interwoven with eleven hours of waiting around. There is a decided difference between the effects of anticipation beginning a vacation and the effect created upon the return home, the latter being the less fun of the two experiences. Although the party's over when we get home, I must admit that recovering from jet lag in my own bed with my wife certainly has its rewards. Don't read into this anything extra curricular. My job is to write about my experiences and yours is to read the lines- not between them. I know this is a wink and ha ha moment. It too shall pass. Suffice it to say I cannot claim to have been "dead" tired. Such a statement is much too dark for my situation. I was, however (British term) bleeding tired, which cannot be considered dark as ALS doesn't promote bleeding. That in mind, if I thought blood letting would help to cure me, I would refrain from any United Kingdom colloquialism referring to the red stuff and get to work on my arteries.
I cannot fail to inform the world that today is my daughter's 30Th birthday. She hijacked all responsibilities from me for the two weeks in New Zealand and helped me to discover the wonder of passive passenger, releasing me of the Alpha Dog stress of running the show. There is an amazing amount of relief in being clueless. After a while, I quit asking "where are we going" and simply stared out the window, letting my anxiety at my ignorance morph into cathartic bliss. This was my first experience in relinquishing control and I must admit it to have been enlightening and relaxing. It worked with Rachel calling the shots- I'm not so sure I could have yielded my "control" to Jeffrey Dahmer. Altogether, a great, great trip.

Sometimes I feel like "Dexter" (Showtime series), though my "dark passenger" is ALS. As in Dexter, I try to shed my piggyback rider, yet he creeps forth stealthily and subtly and relentlessly. He (I refer to ALS as he because I cannot label it a she- to me this is a masculine disease in all its components) reminds me daily through myriad minuscule messages (I now refer to this as MMM, my own concoction, which I shall submit to the FDA as a medical term), that I carry him, always. He has his claws in me. Each day, he nibbles a little functionality from me, his mouth is locked upon my neck and his spit is glutamate. Every day I hope he either gets full or develops dry mouth. What I wouldn't give for a can of spiritual alum.

To update on my physical condition I must be careful. Careful not to appear too negative, not to cause people to worry unnecessarily, to temper my words with lightheartedness, sarcasm and plain old "crossing the line" statements that make people run away screaming. If you are likely to find yourself the screaming type, please run until you're comfortable. I don't want anyone to suffer through my suffering. It's okay to care from a distance. Maybe more should try it. For others, I appreciate their candor, and if to a few, I am a curiosity, then learn all you can. Ask me anything and you will get the truth. I will not cower at any inquiry. Possibly, if the right person asks the right question and receives the right answer, he may return with a cure. SO..........ask. Or focus from a distance. Throw energy at me like fireballs.
Somewhat briefly, I now need a wheeled device for any extended travel. I can enter and exit a car on my own- so far. While in New Zealand, Rachel pushed me around as necessary. It wasn't so bad there because I didn't know anybody. Here, home, is a different story altogether. As an example, yesterday Rachel and I went to Hyvee for a few things. I don't yet have a wheelchair (when I get one, I have little function in my left hand and arm, so any self propulsion will be circular, much like my reasoning of late, so I won't get far without a pusher), so I got behind the handles of one of those electric scooters with the big basket on front (you know, the ones usually borrowed by "plus size" riders), and began shopping, full of trepidation at the potential sight of a "familiar". I saw one, who looked so dismayed as to appear in shock, saying hi, then disappearing from my sight at light speed. I suppose those who have seen me "walkin' and talkin'" now rollin' and talkin' are victims of their visions rather than masters of their imaginations. Seeing my disability as it progresses is most assuredly more traumatic than reading about it. Sorry.
Just as a clarification, I don't drool (much), I bear no deformity (though my left is coming to resemble "the claw" in Liar, Liar), and I still babble incoherently. I can get up from a seat most times, shake hands, smile, frown, laugh and cry. I am still me. This will not change. I will not duplicate Marty's fate (Flowers For Algernon). While I am devolving toward the level of dependency of a new born, I'm relatively certain I will continue to remain smarter than the day I was born. Until the next epiphany.
Oh- e bomb Rachel about her birthday- rachelboettcher@gmail.com

Coming home soon..........

We are boarding in Auckland tomorrow (which is Sunday for you, Monday for us), travel and layover for 33 hours, and arrive in Peoria Monday night at 10:40pm. Don't ask how this works- it took us two calender days to get here and seven and one half hours to get home if you follow the International Date Line interruption of reality. Whatever your take, we will be home soon. Once I get up to speed in Peoria, I plan to write a long, rambling, introspective, esoteric view, from my minds eye, of New Zealand. Expect some harsh realities concerning life, health, attitude and insights into choices made and those to be made, emphasising what I have found to be an advantage in simplicity. I hope to implement such simplicity when I get home. A lot can be learned by travelling abroad; the important thing is to search for your education, requiring a mindset other than that of a tourist.
As for my health, it continues to decline. The slope is not steep, but constant. Characteristic changes are subtle, yet obvious. In the two weeks here I have experienced a degradation in my gait. Before, I could walk, albeit strangely, long distances with little fatigue, however, now I tire very quickly. I know why. As my motor neurons are drowned by glutamate, their death throes pump radical signals to the corresponding muscle cells, causing a negative cacophony of information, resulting in muscle cell overload and poor reaction timing. As damage progresses, my ability to walk erodes as I cannot voluntarily direct the attention of these cells when they're busy fielding so much fowl interference. My legs can't hear what I'm saying. Soon my muscles will be rendered deaf, and after that, dead. The fasciculations in my legs are more violent than in my arms, I assume due to their size, but do not occur constantly. I can rev them up if I stretch hard, so I try not to get them riled too often. Unfortunately, I am aware that the process of degeneration continues without provocation.
A probable factor in the rate of decline I am experiencing relates to my auto immune system dynamics. If I get sick, my body reacts to the virus by taking on the brunt in one day, whereby I am very seriously ill, then attacking the problem with a vengeance and knocking it out by the next. Where most people remain sick for a week or longer, I rarely stay sick for more than 24 hours. This system has worked my whole life- until now. ALS is not the flu, or a cut or abrasion. ALS is posing a problem within me that may be untenable. While I will never give up, I am dismayed at the progression I am experiencing. I am now a sloth. I move like lava. If a fire breaks out in a theater, I'm dinner. If I thought I could take a bullet for someone, those days are gone. If you're in any kind of a hurry, please allow me ten minutes to pull up my underwear and wriggle into my Levis. I have lost some range of motion in my left arm and cannot push too hard without a Percoset nearby. Little things. I cannot straighten the fingers of my left hand, even with force. My left wrist, I fear, is sprained for life. I lack any muscle strength to help it heal.
My natural balance on my feet is for shit. I need to consciously correct all the time. Stairs are posing more challenges each week.
I thought of making a list of what I can no longer do- I actually started such a list- but it became too long and depressing, so I deleted it. Instead, I shall assemble a list consisting of that which I can still do, then delete each action as it becomes impossible. This system seems much more efficient, if no less depressing. I am aware I have to grin and bear all this, and I will. I said months ago that I was a hard nut to crack, and I still am, but those pliers are really putting the pressure on, no matter how hard my head is.
The most difficult part of this stage of my game is psychological. I have my brain, I'm told ALS does not effect, and they are wrong. I meditate, or self hypnotize every single day. It helps me to cope. I have yet to bridge the gap in communication between consciousness and my sub conscious. Though I try, talking to myself yields only a one sided conversation. I've systematically lowered my stress, my need to control everything, my worries and responsibilities, but I fear these accomplishments simply serve to relax me, not to cure me. That elusive ability has yet to manifest itself. Meanwhile, I must prepare to deal with a decline in my ability to preserve my dignity, my privacy and my sanity. If a cure lurks out there, I wish it would pounce.
I know this post may be hard to read, but since you're reading this sentence, you've taken it on the chin and there's no unringing the bell, but I warned you, real is real. Sorry about the sucker punch.