Chores

Growing up, we all had chores to do. When you get married, buy a house, have kids, you still have chores to do. It is my experience the To-do list is never-ending (some correlation with my wife, no doubt).


I thought when I retired from working (I only missed my goal of retiring at 55 by one year; gotta love ALS!) I figured it would be smooth sailing in the chore department. Sit around, watch tv, eat bonbons, and generally make a nuisance of myself. What the hell was I thinking? The to-do list is alive and well. It is a living, breathing monster that needs to be killed at all costs!

Water Nazi

Water! We can’t live without it. Each year, we spend millions on bottled water and, yet, many of us live in a state of some level of dehydration. I always figured the gallons of coffee were a good substitute for water. But then my caregiver arrived.


Without batting an eye, (and she has cute eyes) she began holding my coffee hostage. One cup of coffee, one bottle of water. Another cup of coffee, one bottle of water. And then since it was one o’clock in the afternoon, another bottle of water, or she would wave the pliers in front of my face and tell me: “Ve have vays to make you drink vater!”


It’s particularly hard to ignore her when your wife is standing there shaking her head saying “you go girl!”

Bad Juju

You know you have some serious bad juju when you wake up in the morning face-down on the sidewalk. Clearly, something or someone has conspired to start your day out wrong. But look at the bright side: you woke up! That means you’re still here. Oh, that pain? Don’t worry about that. It’s just God’s little reminder that you’re still alive and you’ve got an opportunity to try and do it a little bit better today than you did yesterday.

ALS is seriously bad juju. It is up to you to endeavor to not wake up face-down on the sidewalk very often.

Have bib, will dribble

Barbecued baby back ribs are one of the best things since man figured out that fire was really good for cooking sabertooth cats. They have taken on an art form all their own. Seriously, “if they don’t get all over the place, they don’t belong in your face.”


In the ALS world, eating barbecued ribs, or anything else for that matter, takes on a whole new level of excitement when you can no longer feed yourself. After the initial frustration (and significant mess) gives way to acceptance, you’re well on your way back to enjoying Big Bubba’s Barbecue. All it requires is a bib.


Bibs come in many shapes, and are made from a large array of different materials. Paper napkins and paper towels are quick and easy bibs, but lack panache. The really great bibs are the dish towel hanging in front of the oven: they are soft, good-sized, stay put, and are oh so stylish. Since you’re more than likely eating in or near the kitchen, you will be properly accessorized for the dining experience. Now all you have to do is convince the person feeding you to pay attention to their work so that the food actually gets in your mouth instead of the side of your face.

Boogers

There is an interesting phenomenon that I have yet to understand. When you get relegated to full-time breathing support, the air you receive is 100% filtered. That means it’s supposed to have had dust and dirt removed. So how is it you still get boogers?! And to add insult to injury, you have to ask someone else to clean your nose. Reminds me of cleaning my daughter’s when they were little. Does this mean I’m reverting to a four-year-old? Oh wait, I never left!

Therapy

Therapy? Me? I don’t need no stinking therapy!
At least that’s what my ego-flooded brain was telling me. “I’m okay, I can handle this.” At the urging of my wife and daughters, I agreed to go to the first session. I must say, it was eye opening. Finding the right therapist, one who specializes or has experience in life-altering, catastrophic and/or terminal diseases is absolutely key. And if you’re fortunate enough to have a loving mate, you need to attend as a couple. This rotten little bastard ALS is affecting both of you and you need to stomp on it as a team.

Fascic–u–what?!

I can remember as a kid, sometimes after running to play kick-the-can or any of the other street games we played, that sometimes my legs would twitch; the muscles would just kind of wiggle and bounce a little bit.

With ALS, I have been given the opportunity to once again enjoy this bizarre muscular event. But now it has a name: Fasciculation. In a strange and twisted way, they are very interesting and can even be used to bug your wife, especially lying in bed. Never pass up an opportunity to bug your wife. :-)

Vinnie Barbarino

For those of you who remember John Travolta’s role as Vinnie Barabarino in the tv show ‘Welcome Back, Kotter’, he was a slick and irreverent character. One of his favorite lines was: “Up your nose with a rubber hose”.

It occurred to me the other day, as I looked in the mirror and clearly saw a rubber hose going up my nose, that I must have died in my sleep and come back as Vinnie Barbarino. For a fleeting nanosecond, I was ecstatic! But alas, on closer inspection, it was still me, and all I had was the hose from my BiPap respirator firmly affixed to my face. Imagine my disappointment!

Thirty-four years

A little side note: Lynn and I have been married 34 years today. I am happy she is still here. God Bless her!

Remote control held hostage

Ahhhhh. One of the true bastions of male dominance is the remote control. Throughout homes in America and possibly the world, men have for years exercised their God-given right to be the master of the remote control. Women need not apply.

Being the master of the remote control takes on a new significance when one spends most of his waking moments frolicking in the newly acquired rolling La-Z-Boy. This heady environment of total and complete control is truly Nirvana… until your hands betray you (little weasels!) and quit working. This is the point in time for which all the women in your life have been waiting.

They will descend on you like unmerciful locust fully dedicated to terrorizing you with all the soap operas, cheesy design shows, nouvelle cuisine cooking shows, and every chick flick known to mankind. Do not, under any circumstances, let them see you sleeping during these shows. Otherwise, they will tape your eyes open, and you will have your own personal experience of “A Clockwork Orange”.

Hallway racing stripes

Everybody knows that racing stripes are cool and that each decal on your car adds five miles an hour to the top speed. Think of all the really cool decals we had as kids and all the places we put them. Even though it upset mom and dad and we usually got a whuppin’, we still did it.


I have found a new way to carry on this wonderful tradition: they’re called Hallway Racing Stripes. If you’re really careful and make sure your motorized wheelchair is on rabbit mode when you go from the kitchen to the bedroom, you can lay a stripe through the drywall all the way down the hall in one pass. And on the return trip, if you’re still alive, you can put one on the other side of the hall. Now is that cool or what?

Coffee Coffee Coffee!

For those of us that are coffee drinkers, a cup (or six) of java is a daily requirement that if not fulfilled, will leave a string of dead bodies in our wake. Throw in all the things that have changed in your life due to ALS and coffee takes on monumental importance. It seems to be one thing that consistently provides a smidgen of “normalcy” (are any of us really normal?) to an otherwise mundane morning.


The real challenge comes when you are dependent upon a caregiver to make, pour, and deliver your coffee to you because you can no longer do these activities yourself. A word to the wise: do not, under any circumstances, piss off your caregiver, or they will retaliate by messing up your coffee. And there’s not a damn thing you can do about it!

Denial

We’ve all had experience with this phenomenon at least once in our lives. I remember my first real bout with denial: it was a knockdown, drag-out battle I was having with myself concerning a stock that tanked. What the hell was I thinking?!


As I have stumbled through this adventure, expert after expert has strongly suggested that we need to do away with denial and face things head-on, all in their proper context. I’m not so sure about that.


Once the screaming shock settles to a dull roar, and the reality of your situation begins to slink its way into your brain, denial takes on a new role. Denial allows you a modicum of sanity, a small way to keep the enormous and ever-present rage locked tightly in the box. Denial allows you, as you look at the world from inside your eyes, to apply the salve of solace to yourself, thereby enabling you to choose a good attitude each day.


Upon waking each day, and finding out we dodged the bullet one more time, each of us has the opportunity to decide how we’re going to look at the world this day. Each of us has the privilege of choosing our attitude and our choice will define our emotional context for the day. Our attitude not only impacts ourselves, but everyone with whom we come in contact throughout the day. My experience tells me it is a binary decision: good or bad. It is just as easy to choose good.

Mojo

Sitting on the ceiling looking at the floor is a very odd place to be. But, that’s where you find yourself when the third neurologist confirms the diagnosis and you clearly know you've been hosed. This is the time you have to start digging deep and find your own personal mojo. The magic that is in all of us that will begin to rebuild the foundation under you that was just obliterated.

It is unbelievably important to grab that Mojo, whatever you perceive it to be for yourself, and hold on as tight as you can. It will be your best friend as you ride this endless rollercoaster.