Suffer me this

Amy hurt her back. For the first time I fully comprehend the frailty of my continued existence. I rely on her for the most private functions of necessity and now I have a stranger pulling down my drawers and lowering my bare ass to the toilet. Thank God I have a built in bidet! Indignity hath no limit.

I am done with suffering but the dude upstairs continues to pummel me, never satiated, resorting to taking whacks at my wife. Mother f*****!

Who said suffering is good for the soul? I want to put him out of my misery. I think I'll go see Noah for a good laugh.

Bitch session

Anxiety and psychological stresses accompany ALS, though my doctors fail to address the significance of such horrifying symptoms. On occasion I've been asked if I was depressed, suicidal, even the dreaded "sad", to which I replied "depressed yes, suicidal can't, sad what do you think? ".

Mental health is required for health.
Treatment for mental disorder resulting from physical derailment is not covered by Medicare.
In order to heal, I must first relieve myself of all sense of fear, doubt, anger, angst, sadness, resignation........... All without professional help........... Only to be reminded that medical science has, for eighty years, failed to solve the riddle of the disease that has made all this possible for me.

Medical drug technology has left the building of common sense and entered the world of political corporate infighting, as I wait, none too patiently, for a breakthrough that may be another eighty years down the highway.

Believe it. Life is tough when you combat the creepy/crawly sensation of ALS, all the while resisting the effects of unnatural emotional stress.

You might ask : what is the proceedure for suicidal ALS patients? I can't get a straight answer. They apparently have no idea how to help me when they see me as a lost cause. Their effort is as pitiful as their pity.

Don't mistake my messages for heroics. I'm no hero. I'm just an unlucky jamoke who drew the short stick and isn't afraid to bitch about it.

I love you all.

Swift

Visited my regular doctor yesterday. Her dismissal of our concerns and equally offhanded dismissal of Amy's questions merely confirmed my notion that she's further down the path of self accolades than she will ever risk herself to venture upon the sparsely populated road of patient care.
She upset Amy more than she surprised me.
Multiply her dismay by the number of people I see at clinic and you know how far my disdain reaches.

Not much else on my mind except that my grandsons know me.

Hey Doctor!

More of less.

I'm conflicted. The fact is : ALS in itself does not kill. It simply destroys voluntary muscle control, eventually affecting muscle mass and rendering you virtually helpless. With the aid of machinery, you can live for years. What kills you is everything else. Respiratory ailments claim many lives when coupled with a weakened diaphragm and compromised immune system.

I don't have high blood pressure.
My heart rate has been normal.
My blood oxygen is okay.
My blood sugar is decent.
My INR has been stable.

125/85
70 bpm
97%
135
2.2

Numbers have their place, but any agitation on my part can spike them all. I'm walking on the edge of the precipice. My balance is poor and help is wispy. Anything negative is a hand on my back, the other on my shoulder, both to help me to set sail. I don't need that kind of help.

TELL ME SOMETHING GOOD!

Empty gestures and sad eyes are the doctor's modus operendi. I pity the fool. His job is no more than as a caretaker at death's door. Nary a soul saved. I refuse to be just another confirmation of his failure.

This applies to everyone and everything.
I struggle enough just to comfort myself. Don't expect me to dilute my efforts to comfort those who feel sorrow for me, sure that my fight for life is valiant, though immersed in futility.

State of mind. More important than all else. Don't you forget it. I'm stubborn living proof that nothing is impossible to a willing mind. I coined that phrase. Thanks Master Kim.

Don't expect me to go out kicking and screaming. I can't do either. Simply don't expect me to go out.

Day Journal

Peculiarities within the scope of ALS.

I'm acutely aware of my hands. They never lie naturally. They appear every bit as useless as they are. There is a waxen deadness, a reflective cellophanic sheen that prevails over any signs of function. My wrists are spent hinges, folded downward forever.

My arms are at rest always. The left elbow slipping from my armrest at the least movement of my chair, at every sneeze. I cannot lift it. My thumb often jams inward and downward. I cannot move it. Ouch.

It is difficult to manipulate food in my mouth. Sometimes the flavor of a bite escapes my lips and fills my beard. I'm unable to chew with my mouth closed. I am thus rude.

My sense of touch is altered. All skin feels rough.

I've become a lousy kisser. Check that. Lousier.

I'm unable to control the breathing function. I breathe randomly from my mouth and nose. This makes it hard to blow my schnozz. Congestion is a nightmare.

My neck is balancing a leaden gourd.

Fingernails continue to grow at an alarming rate.

Less friction means more hair. Lots of it. Everywhere.

I can no longer sit up because my ass has apparently reformed itself into a beach ball.

I have much more time to think but I don't.

I don't talk for various reasons, primary of which I would prefer people presume me to be ignorant rather than to know it.

While dying is not an option, neither is living like this. Something has got to give. It will.

About my Amy

Today is another day in which I find myself happy to be alive. I can still hold my head up and look Amy in the eyes. I see there the determination I can only dream of. This determination, infused with and powered by love, keeps me going forward, bedraggled as I am. She does what no ordinary caregiver could ever do. She loves me for what I've become as well as for what I was. She relishes her time with me no matter the task. She is unknown to others in this most intimate of settings. Though I'm unable to reciprocate her caresses, she recognizes my thoughts and transmits them to her own hand. This is a physical transformation for us both. Without her I would not be me. With her we are us. There can be no separation. One heart cannot beat if torn asunder.

My single greatest regret is that I never made my true feelings for her as clear as are now in my mind. I was constantly remiss, always distracted, by my own ignorant design following a path with her merely in tow. A willing participant, sure. She will never be relegated to such a stature again. She is my Lord and Savior.

For those of you without such a deity in your midst, you are free to make one up. God is my love and Amy is my God. Amen.

I'm this

A wonder : how I've adapted to an entirely foreign lifestyle.

A note : I'm not paralyzed. I feel everything. I'm unable to move.

A fact : I'm in the best possible environment for healing.

A given : my grandsons are a hoot.

A sign : I'm now able to eat kimchi out of a jar.

A bummer : I'm unable to teach TKD.

A reality : all my kids are here for me.

A life saver : Amy.

A relief : Dallas weather.

A sadness : my mom never met Asa.

A gladness : I met Asa.

A regret :?

A memory : oh, so many.

A wish : I got mine.


I'm thankful. I'm not Hellen Keller with ALS.

Anniversary

Three years ago today I was diagnosed with ALS. It's been two years since I last walked. It's been at least a year since I could speak clearly. My arms don't work, my hands don't work, I choke, I suffocate if I cry, I'm on drugs. I'm relatively happy, but I'm done with it. I need to get well or get dead. I'd prefer the former. Happy anniversary to me.

Busy, busy

Believe it or not, often I'm too busy to post. Today is one of those days. I'm stealing time. As ludicris as this may seem, my free time comes at a price. Since I have no job I have no way to pay. So I steal. I'm as stealthy as a statue. Between being fed, taking my medication, being pampered, fighting my headgear, resting, sleeping, using the toilet, having my teeth brushed, my hair brushed, my face washed, a shower, being dressed, watching tv, playing around on Facebook, catching sports scores, reading the news stories, checking my email, solving the world's problems, brushing up on my physics, investigating new recipes, offering my expertise in matters of familial importance, adding a word a day to my vocabulary, following the latest wheelchair trends.........
You see? I must be a time bandit. And you thought I sat around all day! Well, I do. Shame on your presumtion.
I don't intend to sit, I'm just finding myself poised to do so. Gravity is not my friend.

What exactly are sheaves, and why do we bring them in?

Invariably, inevitably, redundantly back to me.

I'm ok. I'm eating too many greens and as a consequence my blood is too thick. As a secondary consequence, my improved eating habits have resulted in some weight loss. A couple years back, in Peoria, I topped out at 225 lbs. Fat in the gut like a Weeble, though rather than wobble, I was always in danger of falling down. I cut weight to 205 by the time I hit Dallas, maintaining until I got sepsis in April 2013. At that time, while in the hospital, I was given a swallowing test of which results determined that I would be required to have a feeding tube drilled into my stomach. I could only eat pureed food and drink thickened liquid. Never was I to use a straw. Needless to say, I say it anyway, I did none of this. I eat nearly anything I want, drink through a straw and never thicken liquid. To the doctor's supressed surprise, I have hung around 200 for a year. All will change come my next clinic. I stand at 190 right now. If I were free of ALS, I would stand, literally, at 180, but I need some extra poundage in case I get really Sick.

I don't snack. Somehow Oreos don't fly into my mouth.

I'm a wonder when to myself and others. I wonder why I've hung around for so long and others wonder how.

I drool so I grew this nasty ass Beard within which to cultivate myriad colonies of spittle protozoans bent on taking over the world of single cell organizims.

My hair is not as long as it will be tomorrow and will continue until and beyond the day I can see it grow without the aid of a mirror, and will eventually form a nest upon which my chin may rest in the event that my neck can no longer support my noggin.

I'm in desperate need of an organic, all natural deodorant that works worth a shit.

Short

This will be brief. Why do I continue to wonder about my condition when there lies such abundant wonder outside of my pathetic situation? I'm so self absorbed that I dim the light shining upon all that is really important. Who am I to dwell upon myself?

If I focus on outward observation, grasping at it all, I will find myself wanting more rather than expecting less.

This is how I made my index finger move yesterday.

Cough, gag (kidding)

Today I haven't yet choked. Yay.


My family keeps me alive. Despite my propensity towards annoyance and aggravation, they baby me and nurture me and love me. The least I can do is stick around long enough to test their durability and resolve. Without their support I would be dead to the world even if biologically sustained. There are many ways to be dead, not the least of which is in your heart. Mine keeps beating thanks to my family. Hug appreciate yours. You will always need them.

I'm choked up

Once in awhile I choke. My throat closes, always when I attempt to inhale, leaving me to panic as I struggle to breathe. This unfortunate occurrence pushes me to look around the room, at Amy, at the clock on the wall....... I take in all that is possible. I know my expression is obvious... I want "I love you. Good bye" to be my last words, but of course I cannot speak.
There is a certain agony to suffocating that is hard to describe. No pain, all struggle. All helplessness. Pure futility. Abject sorrow infused with fear and manic frustration.

I can't physically help my situation other than to try and stifle any reactionary restriction in my throat that would exacerbate my condition by relaxing myself. Without Amy this relaxation would not be possible.

I am thankful that each time I choke I experience an awful aftermath, without which I would assume myself dead. As I slowly regain tentative breathing composure, shock takes over my body. My heart races faster than during my panic and I shake violently and uncontrollably. I lock down. After time, the spasming diminishes and my heart slows. I try not to move as my body relaxes. I try not to think. I look inside my mind and outward, searching for distraction. I eventually recover.

This choking usually occurs, not always, while I'm eating. The weakness in my throat, coupled with a compromised swallowing mechanism, married to an overly sensitive esophageal reaction to certain spices, causes a constriction I am unable to control. It doesn't matter what I eat. It is not aspiration into my lungs. Most certainly not.

On a positive note, these terrifying choking spells seem to be more infrequent as of late. Nonetheless, I'm scared out of my mind at the prospect of the next. I think I'd better take in my surroundings just to be prepared. I love you. Good bye.
Simply practicing.


For what reason did I decide to share this awful story? I choked last night in bed. If I had died, you would not have known all this. Now the pressure is off. Now my stress is lower. Why? I have no idea.. It just is, and that's all that really counts.