To those who wanna know about me and Amy

I need to chop off the right arm of my wheel chair so I can type without constantly blamming my elbow into the rest. My only other option is to lift my right arm in a chicken wing motion, an option untenable at best. A solution determines the lifespan of this blog- or I can find another chair. Though you'd have no idea from your position, I just dumped an entire cup of coffee across my desk, narrowly missing my keyboard, (on a slide out shelf beneath the desktop) but saturating some paperwork, a couple cards, hitting on my ipad cover, floating my Otter protected iphone and generally soaking the entire area. A Penske cleanup crew dispatched the mess and I'm back at it, temporarily adjusting my keyboard until I can find a hacksaw or another chair.

Some readers have asked to hear how I met my wife. I shall oblige today.

I met Amy in high school, coming to know her as more than an acquaintance between sophomore and junior year. I began my pursuit while I was dating Cindy, (I'm using first names only- those involved know who they are), having hung with Donna, Vicki, Tammy and others prior. Amy was dating Dave, a swimmer, and I can now say that seeing her with him in any manner provided a catalyst for me to get what I wanted. Bizarre as it may seem, I'm still jealous of that guy and might occasionally fantasize an  encounter with him after which he would require reconstructive surgery. Of course all of that is ridiculous- they broke up as soon as I moved in on the situation- but still.............

That summer, 1974, everything that was to be my life became my life. My first encounter with Amy more intimate than a group hangout was at Lower Bradley Park in a pickup football game. You might ask how I came to know her and my answer would  be- Mary, Claire, Lori, (it was in Lori's basement, that first encounter, though she was with Dave and I was without) and others, friends to this day, some 38 years later. Anyway, the pickup game lived up to its moniker, considering I picked up my future bride, both physically and figuratively, that day. Apparently she was impressed that rather than tackling her, I carried her to the sideline. I can't say how, but I knew right then and there that she was the one.

After that day, I began to stalk her. She was still somewhat  involved in Dave- a factor I was aware of but ignored- when I started to visit her on a daily basis. I got to know her mom, who referred to me as Dave even though she knew my name. I was certain she knew exactly who I was as she played me and antagonized Amy. After many visits, I managed to infiltrate her mind- she broke up with Dave or he with her, some mutual thing. I, of course, failed to talk to my girlfriend, Cindy, more friend than anything else, a mistake that would  come to bite me in the ass a couple weeks later.

First date- first real date. Not my first, not her first, but our first. You would've thought I'd had better judgment when choosing our destinations. You wouldn't've thought that sweet, innocent, Catholic Amy would lie to me.

I had it all laid out. Saturday night, pizza and a movie. Should have been simple. I must have been in love already because I sure was blinded by something. Let me tell you how to impress a girl on the first date. We started off at a little pizza place in East Peoria, George's, where I asked my date what she liked on her pizza, her reply, (liar, I told you) was "anything, whatever you like", giving me the green light to order a large deluxe, loaded with sausage- she likes, pepperoni- she likes, onion- she hates, green pepper- she hates, mushroom- she hates, black olives- she hates and Coke- not her favorite. As a consequence, she didn't eat a single bite of pizza and though I can't really remember, I'd bet her Coke went untouched as well. I did my best to eat her share, drink her share. She was sweet and beautiful, hair past her waist and I think that day I fell in love with a liar.

My intention was to eat and head to the drive-in, in this case the Starlite in North Pekin, where they were showing, as part of my ill conceived plan, The Exorcist, and a B movie called Demons, which should more accurately have been called "Boobs and Fangs From the Planet Soft Porn". The Exorcist played first, then Demons, then The Exorcist again. My prior experiences with drive ins told me that the first flick would be hard to see at  dusk, so the plan was to watch Demons, then the late showing of Linda Blair and cast. Result: Demons at 11pm, Exorcist at 1am, my  first date home to her federal officer dad by 3:30am. Needless to say, during the movies, we had space enough for a car seat between us as I horrored at what she thought of me. I think I survived the night because Amy's dad couldn't find his pistol in the wee hours before daylight. Thank God. To be continued..............................................

Rolling a fine line, need to get back to California

Ask me if I have anything more to say about my ever changing condition and I will unhesitatingly answer that there is more to say than I can possibly relate in my lifetime. There is no hidden message contained herein considering just how long or short my lifetime might be. Words are finite whereas my experiences go on forever. Make of it what you will.

Somewhat briefly, because I have trouble dwelling on it and partly fear talking about it or writing about it lest manifestations arise, new discoveries and conditions are unfolding that cause me to worry. As I've messaged before, my left arm is weak, my left hand is the claw from "Liar, Liar" and my right limb is heading in the same direction. What I haven't detailed is to what extent my right has deteriorated. I've denied its worsening condition because I heavily rely on it to anchor me by its grasp, though diminished, both physically and emotionally. Not being able to walk, let alone rise from a chair, is tough enough without the added stress of a useless arm to my left and a battery powered right limb seeking a charge in a perpetual blackout. I keep waiting for the lights to ignite knowing the likelihood is remote. I find myself fantasizing (I'm not sure if fantasies can be dark, but mine are, so maybe they are something else) that both my arms are alike, largely useless, and that my core body strength has evaporated, leaving me a 225 lb. sack of flour, required to be hoisted as such.

The real problem here, in addition to my dependency issues, my blubbery midsection, my trouble doing anything I used to do, is that I have too good  of a memory and a kick ass (presently kicking my ass) imagination. I am happy, though, that I can kick something, even if it's in my head.

So I invite you to help me not to look forward, with trepidation, but backward, to the days when I was sure to live forever, to my youth, remembered with clarity, indestructible. To a youth more colorful than I would ever have thought. I am posting a small series of small life experiences, mine, all of which are unembellished and unfictionalized, all true as I can recall, and if you get bored, skip them and look for a little morbidity down the road.

Still kickin' (well, not really)

For those tuning in for the first time, I recently, a couple weeks ago, moved from Peoria, Illinois to Dallas, Texas, effectively bringing with me cooler weather- 72 for a high today- equally as effectively extracting the cold from the north, leaving P-town with a high of 86. We've a pool here, eye candy so far, though beckoning even me, the human anchor, in expectation of those heat stroke causing Dallas summers. Interesting will my tan be once I remove my water wings after a day of basking.

From the first day here, a plan  was implemented to convert our private bathroom into a handicap friendly environment. In this particular part of the house- originally a separate structure designed as an in law room or less, the construction proved to be more rudimentary than expected. I had my guys, carpenters from Peoria, spend a week here buffing up some roof areas, making minor repairs and, you guessed it, restructuring the bathroom from the ground up- literally. Special thanks to Rachel and Gus

 for plying their weapons of mass destruction in gutting the room. Before it was re-built, I could have dug worms from the dirt floor. The difficulty for me lied in the fact I would have been stuck in the soil, too thick to bury and too heavy to remove. Consequently, I stayed in my chair, safely distanced.

The re-structuring of our bathroom required a complete frame up process. My familial demolition crew had to remove a vanity, a toilet, not elongated, not comfortable, a 30" shower (a husband/wife showering scene best left to the imagination), sheet rock off walls, ceiling, removal of the flooring, (ceramic tile on Durock), the sub floor sheathing, the floor structure and debris underneath, where the soil, a foot below, contained the worms I would never rescue for the hook. After all was gone and exposed, the plumber installed his waste and supply and my best friend Jim re-built a floor system over and around the pipes. The bathroom was reconfigured, designed by Amy and Sarah, to accommodate a 60"x36" roll in shower, a small vanity, two recessed cubbies, a recessed medicine cabinet, an elongated (thank you Lord) ADA approved, chair height toilet, soon to be equipped with a high tech Swash 1000 seat, (look it up if you really want to know), ADA approved grab bars in the shower and alongside the toilet, a recessed area within the shower to accommodate shampoo bottles, etc. and a plethora of other amenities too numerous to mention.

Presently, the distance from our bedroom to the nearest bathroom is approximately 70'. If I tried to walk the distance in my present condition, I would likely pee myself at least twice before I got to the commode. Thanks to Jazzy, I can make the trek in less than ten seconds barring any obstacles like kids, toy or dogs. Most times I succeed. The new bathroom cannot get done soon enough.

Late night post

It is obvious that my last few entries have been shorter than usual. I myself have noticed that I make funny my experiences in depleted physical capability. As a matter of fact it is funny. I can better cope if I look back and recognize the humor in it all, but the frustrations of dependency cut deep and leave scars. Each realization adds weight to the scalpel. I cry before I laugh just as I inhale before I exhale. I cannot enjoy the second without suffering the first. There is a lot going on that I don't talk about.

I find it interesting that in the last couple months I've not had to deal with too much of the myriad fixes that inundated my person for most of my ALS tenure. All the well meaning pitches have been thrown. I don't doubt for a second that they continue to  care for me and respect my views and decisions. I still hold out hope that better days lie ahead and I plan to exercise my right to create all the prosperity I can muster, be it traveling without a schedule, watching pay per view guilt free or smoking an occasional cigar. I know I'm on the minds of a few folk and appreciate that they care for what happens to me. I only wish I could see the future and see that it is bright. Unfortunately, I cannot. All I see is today and all is slightly gray. Anything that can lift the fog of my situation, even a little, gives me more color to  absorb. My wife can lift the sky, my kids can. My grand sons are bright, my family carries light, my friends, everywhere, hold candles of hope and empathy. With all this, I can almost  see the future, almost believe in its clarity. Almost.

OK, don't expect too much waxy sentimentality from me- this is just the meandering of a wayward mind. Next time you get structure. Promise.

Leaves need not beware

We found a leaf blower, similar to my relic, brought it back to the house and corded it up with the thought, most assuredly, that I could lay it on my lap, switch it on and blow leaves and debris to parts elsewhere. Not a chance. First of all, never set a leaf blower on your lap. Why? Think about it. A blower capable of pushing air at a velocity of 235 mph has to get the stuff from somewhere. It so happens that the air is sucked into the bottom of the unit. Get my drift? It had apparently slipped my logic that leaf blowers "suck". Result? No suck, no blow. I write this with a straight face. 


So the experiment altered, whereby I ran a strap over my shoulder and through the handle, allowing the blower to sling lower between my legs, freeing the intake from the crotch of my pants. Rachel managed to twist my left wrist and unclench my fingers long enough for them to snap back around the blower grip, giving me little movement but lots of rigor  control, freeing up my right  to toggle my Jazzy. 


Moving into a headwind, I blew and rolled until every inch of me was covered in yard flotsum. Rachel unstrapped the blower, unclenched my death grip and turned the unit on me. All my progress, clinging to my body, was neatly blown back in place, providing no evidence I had ever been there. I need to delegate more....everything.

Daily adjustments

Yesterday, today and tomorrow- each sunrise represents a new set. For me, just this week, I slipped into a doldrum of anticipation, one of realization and another of resignation. It's hard to believe in static emotion when all around me is anything but.

As I made apparent earlier, Thursday was the anniversary date of my initial diagnosis and I did not write. This does not mean I sat around all day and sulked; on the contrary, I spent hours reveling in the fact that the day played out like any other- a little frustrating at times but mostly cool, especially when my grandies came around. I didn't write yesterday because I didn't have time, sort of, more that my diagnosis was substantiated through a grueling EMG test. A year ago today I donated about a quart of blood to an OSF lab to rule out (hope for) West Nile Virus, a pit viper bite and Lyme's, among other uglies lesser than the grotesque ALS. I got no results until the following week, so the impact of giving blood was not enough to prevent me from writing today.


So look for more, even this afternoon, after Rachel and I go buy a leaf blower, an implement I think I can wield without damage.

Today I write nothing

Today is the anniversary of my diagnosis. I am without words, therefor I abstain.

Me and my machines

Often I've spoken of rolling rather than walking, primarily because I can't walk and therefore must roll. Earlier on, before my motorized experiences, I got through the rough patches using a manual chair. Since I cannot propel myself, someone must push me. I hate being pushed, always have. Back in the day, pushy people and gauntlet situations drove me nuts. After all, I always prided myself on my efficiency so a push or a demand always stood out as an insult. Now, being pushed in a wheel chair may not tune up with my past experiences but it certainly displays similarities not to be denied. 


First I claim that things go better when I'm in control. Especially when it's me. Physically. In a chair with wheels. In a pushed device, I am at the mercy of someone else. In a crowded room, when conversation comes up, usually with my pusher, I find myself three feet outside of the talking circle. I now know how it feels to be a kid in a stroller. Add this to the actual fact that many people feel perfectly fine to speak to the back of my head, plus the truth, spoken by my friend Joan, that I/we are now at butt level, and you should be able to feel my pain. Joan's pain. I simply lacked the power to cast a spell over my dominion. I needed self propulsion.


Jazzy- a battery powered scooter with a thumb control, 5 speeds, a 15 mile range, a reclining bucket seat and a top speed of 5 miles per hour. 150 lbs. Nimble. Super cool, stylish. A very generous gift from great friends. I use it every single day. It gets me everywhere I need to go since we bought a van with a hydraulic lift. I have recently learned of the inadequacies of modern ADA approved facilities, especially public restrooms, very especially restaurants and gas stations. Of course they have the grab bars, the big stalls and the high toilets. The ADA requires them all. The real problem is the door into the outhouse. Most swing in, allowing me to kick hard and speed inside before the automatic closer, also required, runs the door up against my ass end. Getting out?? I may be able to pull the door a little at a time, but since I need my right hand to both operate the Jazzy and yank the handle and fight  the closer, a ridiculous, herky jerk party of frustrated comedy, I'm usually better off to wait for a dude to come in or call Amy on my cell phone provided I didn't drop it on he floor during all the commotion entering. If I drop the phone, I gotta holler. By the way, I like to use a urinal if possible, where the ADA feels it unnecessary to require grab bars, likely because they assume wheel chair guys can't stand up, probably generally true, nearly so in my case but not quite, propelling me to pull upright with the only grab suitable, the sweaty pipe exiting upward from the porcelain to the flusher. As long as I visit old restrooms, I can find sweaty vertical pipes. I love sweaty vertical pipes. I also hate all bathroom doors.


 The MDA offered to lend me a power chair until I order my Stephen Hawking Special through (sort of) Medicare. I introduced you to (Little) Jazzy. Now you must meet Big Fred- a battery powered wheel chair with thumb  control, 4 speeds, a 15 mile range, a zero gravity full recline feature that appears to lack a value anywhere near its cost, a wide, deep seat for wide, though not necessarily deep users, a top speed nowhere near as fast as the Jazz, weighing in at a whopping 350 lbs empty. I do admit that Fred is the superior off roader. 


I have dumped Little Jazzy once, narrowly missing a second spill thanks to a lightning fast Days Inn manager. She literally shoved Jazz back down to 6 wheels. Both incidents occurred when I made a left turn before clearing my lift platform. I promise to be more careful.


One more visit to the privy. I can turn on a faucet with one hand, although I hate the kind where you push the spring loaded button on top and quickly wash before the flow stops. I'm just no as fast as I used to be. My real problem begins when I have to depress the soap  dispenser with the same hand that is to receive the suds. I usually have to mop the the soap off the counter. Next I wash my hand with my hand. Get it? I find this about as effective as applauding in the same way. I've considered, and occasionally administered a technique whereby I unzip, work some magic and do my business without touching a thing (haha, insider chuckle), thus eliminating a trip to the sink. Now about that pesky door..............................................

First, what's going on with me

During the past year I have drawn a lot of lines. I won't say that I consciously interpreted it as such but I drew lines almost every day. Some were identified as denial, some as a dare, all represented a demarcation representing the limitations of my disease. I told myself that things wouldn't get worse, that I wouldn't allow it. Had I a real handle on the problem, I'd have drawn a single line last spring. Reality has dictated the necessity to move my line on a regular basis. I have no evidence supporting the notion that my artistic ultimatums have had any effect at all. One can only hope.

I refuse to dwell upon my disadvantages, though I plan to exercise my squatter's rights and use them whenever I please. 

I won't lie to  you. There is no point in fabrication when my story contains enough grit to ruin a jelly sandwich. For now and for a while my right hand will remain able to pluck at my keyboard. Outside of that, my abilities are decreasing. I cannot properly grasp a fork or spoon. A great friend, (hi Mike), made me special utensils, a fork and two spoons, that were ingeniously contorted to get the food to my mouth, and for some time they worked perfectly. Now, however, I lack the grip to hold them. Most times, Amy feeds me. I now know that when my kids were babies, they carried no blame for food on their faces. I can sit stock still and occasionally get a nose full. I can't fault Amy, though. Its been a lot of years.......................... hopefully she uses the grand kids to get up to speed on diapering.....................I'm just sayin'.

I'M ALIVE, I'm on line and I'm in Dallas!

I don't know how long it has been since I've posted but I can tell you it has been TOO LONG and that my mind has begun to swell to the point where my thoughts have permeated my skull and infiltrated every living thing that has come in contact with me. Outwardly invisible to all but myself, shrubs have taken to conversation, weeds even, though they tend toward coarser stuff. Trees are largely (of course) silent, stifling their murmurs with a nut or a pine cone. Cats offer up slick interpretations of sly speak while dogs invent nonsense all the time. People are polite with their possession, all the while trying to exorcise my stray, demon seepage. Now that I am again up and running- figuratively of course- I can inhale my nastiness and spew the ochre bile upon these pages once more, relentlessly and apologetically, remorselessly and with a new vigor, unparalleled. Gee but its good to be back  home, home is where I wanna be............. Keep looking. By the way, most of my thoughts are anything but grotesque. My problem remains that I use catfish bait to lure my prey and it stinks. Simply put, when you're caught in a sewer pipe, it's better to go with the flow because we all know the origination and can certainly expect an improved destination. Ciao.