More Ladies continued...

We have been very fortunate finding caregivers whose personalities are compatible.

Shirese has stepped into the fray like a long-time friend. Shirese is a single mom and her eight-year-old daughter is a positive fireball.

Shirese also has some unique experience that keeps me on my best behavior: she was an LAPD Police Officer for five years. I keep wondering about handcuffs...

The Ladies continued...

Since February we’ve had help on the weekends from a real character.  Henda is a wonderful addition to the support team.  Immigrating from France about 12 years ago, she has become a Naturalized Citizen.  Henda has a great wit and pulls no punches making sure I get my full ration every weekend.

You might be wondering why weekend support is needed since my lovely bride is available.  My current position on the ALS Adventure Road Map (not available at your local book seller) is the ‘road less traveled’ location, which I think is somewhere between Rock and Hardspot, Arizona.  This vacation venue requires guests to be totally dependent on others for even the simplest events like scratching your ear (caregivers can earn point for style). Guests must also be unable to breathe on their own (points given for coolest decals on the ventilator).

Weekend support allows the Little General to take care of resupply trips, etc. without worrying about my safety; it is all about me after all. ☺

The Ladies

One of the perquisites of having ALS, and having had the presence of mind to purchase long term care insurance, is the opportunity to meet some very special Ladies: my Caregivers. These Angels are indispensable in making the day-to-day mundane of ablutions, dressing, and culinary needs not so daunting.

Because these gems take such great care of me, I have been accused of ‘living like a King’ and that sentiment may not be far from the truth ( horror-stories about caregivers abound ).

Tomi (pronounced ‘toe-mee’) was with us for a year before returning to nursing school this last September.  Originally from Nigeria, she immigrated here 11 years ago at age 12.  When I started this blog, Tomi was kind enough to type for me. She is also quite talented; check out

http://www.reverbnation.com/main/overview_artist?feature=landingpage#/nextomi

Tomi is quite the young lady.

What if you knew...

...that in your 40‘s, 50‘s or 60‘s you were going to be the proud recipient of the shit end of the stick:  a seriously debilitating and/or terminal disease.  Would you make any changes?  It’s a good thing we’re not prescient.

We’ve all had a chuckle about the guy or gal who dodged some bullet and we remarked “boy are they on borrowed time”. Being diagnosed with ALS changes that to “boy are they on finite time”. The light at the end of the tunnel is truly a freight train; you just don’t know how fast it’s going.

We’ve all laughed about the saying, “life: no one gets out alive” and certainly this is a true statement. And most of us, if we’re lucky, just get lights out after a long and rewarding journey.  For me, ALS has provided the opportunity (yep, I really mean that) to get all the important things in order. It is imperative for your peace of mind to get all your ducks in a row:  Get the will set up. Get the powers of attorney in place. If need be, get the trust properly set up because the freight train is coming.

Make a bucket list and get crackin’!  Take control of those things that you can to ensure  maximum quality of life. Nobody’s ever put on their tombstone, ‟Gee, I wish I could have worked more.‟  I don’t want this to seem negative; quite the contrary; it is critical to be completely realistic: the clock is tick tick ticking.

Learning to drive

I remember well my father teaching me to drive in the old green 56’ Ford. When it came time to teach my daughters to drive a stick, I was often transported back to those times with my dad. Once again I am teaching people to drive. But this time, it’s an electric wheelchair.

As your muscles fade, you find that you must relinquish the chair-driving to someone else if you want to go anywhere. If your caregiver has experience, then it’s no big deal. But if it’s a family member or caregiver with no experience, you better strap in, hang on, and get ready for a ride. 

I encourage you to give them ample opportunity to practice in a big flat paved area. Learning on the sidewalk is not recommended: there seems to be some innate attraction between the wheelchair and the curb. I’m not sure if the wheelchair manufacturer programs this into the software or if it’s the result of a careless word spoken at the most inopportune time. Either way, you don’t want to go off the curb…very bad juju. Remember to just smile brightly, suck it up, be patient and say thank you.

Ire

I have recently received another “gift” from that little rat-bastard ALS: loss, through a tracheostomy (breathing is not overrated!), of my ability to speak (no doubt a few people think this a good thing). Language is arguably the oldest form of human interaction and being an unwilling participant in this vocal demise really raises my ire.


Ire. Now there’s a word one does not very often hear used. Maybe because of my situation I’m becoming overly sensitive to people’s use, or dare I say misuse, of language. During my working career, I had the pleasure, more than once, of working with people from Great Britain and Australia. I think everyone has heard the joking comment: “Three countries separated by a common language.” After working with these folks, it’s become clear to me that we could all brush up on our skills with our native language.


Whether your native language is English, Castilian, or Yoruba, I submit we would all communicate more clearly and accurately if we invested more time with a dictionary and thesaurus.

Stage Fright

Ahhh. Even if you’re not one for being very bashful, stage fright can strike when you least expect it. Most guys dream of being in the position of having an attractive young lady handling “Mr. Happy”. But when that handling is for the sole purpose of being properly aligned for a portable urinal, shrinkage, nay, abject fear strikes the unsuspecting corpora cavernosum and reduces you to a five year old straight out of the swimming pool.

Tommee Tippee

All of us have had to learn to drink from a cup or glass. Many of us or our children had the benefit of beginning this learning process with a Tommee Tippee cup. They work really well and generally prevent meal time disasters. As we progress through our teens and become adults, our prowess at handling various drinking vessels becomes second nature no longer requiring conscious thought.


When you drop your first glass of that really expensive libation, you are faced once again with serious thought about beverage control. Not only do you want to avoid wasting expensive beverages, you want to make sure you’re not receiving an impromptu bath. So, back to Tommee Tippee we go. Yeah, you’ll take good-natured crap from family and friends but the adult version of this venerable tool will afford you some independence for a little while longer.

Halloween

Always a great time of year given to really fun parties. When you are basically at the mercy of your family members and caregivers for your costume, boy are you in trouble.


Remember when your girls were little and they would play dress-up and get into mom’s make-up and “unmentionables”? Well, being a captive participant you can pretty much expect to be wearing clothing and make-up that would NEVER have seen the light of day in your former life.


But there is a silver lining: you don’t have to participate in some of the more inane games. Oh yes, did I mention you’ll take ten tons of crap from your buddies for your costume? Yep, no way to escape. And who knows, maybe you’ll take a liking to the red finger and toe-nail polish!

Read my lips

Everytime I hear this phrase, for some reason I think of George H.W. Bush and the 1988 Republican Convention. I’m not sure why, but that’s what pops into my little brain. Certainly, in 1988, I never thought that this phrase would become so important to my ability to communicate. But then I never dreamed I would have to have a tracheostomy either. Something about having a big-ass hole in your throat is a little disconcerting. But then maybe it’s not so bad since you no longer have to worry about choking.


Everyone in my support network is trying very hard to read my lips as the trach precludes my ability to speak. Truth be told, I think there are some people who are quite happy I’ve been shut up. But little do they know that I will speak again and then it’s payback time!

Bed snake bat

This little jewel is a 12-inch long wooden baseball bat with a small tether so it can’t be dropped. This was something we received, excuse me, my wife received as a wedding gift. In some countries, this is an acceptable form of birth control. Go figure. It was “lost” for the longest time and then somehow “magically” reappeared about the same time that I started needing to wear condom catheters to manage fluid output. I think my wife, knowing that someone else was going to be touching Mr. Happy, thought Mrs. Bat should make a return engagement to assure there was proper behavior.


My caregiver had the biggest giggle about this and threatens me regularly, regardless of the infraction, saying “don’t make me get the bat.”

Continuing Change

Just when you thought things might be slowing down, Uncle ALS throws you another curveball. Since my swallowing has been slowly copromised, fear of choking has been in the forefront. After a recent episode that required a trip to the emergency room, we decided to bite the bullet and get a G-tube placement. For those of you not familiar with a Gastric tube, it is a small tube that is in direct contact with your stomach. So all my food is now liquid and delivered throughout the day with no more worries about choking. The peace of mind this has brought has been well worth it. Onward and upward!

Hurt me, beat me

When you get far enough along in the adventure, your caregiver takes on the role of being the Mistress of the Tower, you know, as in the Tower of London. Being confined to a wheelchair all day, because you have lost the majority of your ability to move your limbs, requires someone to move them for you to help your circulation. Sometimes, this is uncomfortable because your muscles have decided they’re not really interested in moving. So hurt me, beat me, takes on a new connotation and one that is absolutely necessary: You gotta keep movin’.

Global warming

Ok. I admit it. It’s all my fault. I am the one responsible for global warming. If you remember back a couple of years, scientists were remarking about the increase in temperature around the globe. I find it interesting that this increase in temperature exactly coincides not only with my ALS diagnosis, but one of the side-effects of ALS: an unlimited supply of flatulence.


Make no mistake: you don’t get the nickname Gasius Clay for nothing! And it seems to be a universal phenomenon. No matter what I eat or drink, there is continuous global warming.


My apologies to all.

Butt in a sling

Most of us throughout our lives kept trying to avoid this phenomenon. Try as we might, to a more or lesser degree, each of us has had a seat at least one time. Being a somewhat regular visitor, I was very well prepared when my buddy ALS informed me that my butt was now once again in a sling. Literally.


While it’s nice to have pretty women helping you into your chair, out of your chair, into bed, etc, there unfortunately comes a time when safety takes precedence over being lovingly squashed by women and their chests (bummer).


The Hoyer lift, with its sling, really does make transferring much easier for all concerned. But a word to the wise: once you’re in the sling and up in the air, it’s a really good idea to keep your mouth shut and not bring up some infraction that might have just happened. Otherwise you might just be left high and dry, swinging in the wind with your butt truly in a sling.

Milkshakes

Old-fashioned milkshakes are really good. A little milk, a little flavor, some ice cream, all thrown in an appropriate receptacle with a top and shaken like crazy. Mmm mm good!


It seems that some twisted researcher had the bright idea that this “shaken like crazy” thingy might be great for one’s lungs to vigorously help support expelling all the “nasty stuff” (a technical term) in a clogged set of lungs. Not to be dissuaded by my clear chest x-rays, a contraption arrived one day at the house. Its sole purpose is to wrap around my chest and shake hell out of my lungs. No sooner had this instrument of torture arrived, the manufacturer’s representative showed up to teach us how to inflict maximum annoyance, much to the delight of my caregiver and my wife.


The standard regimen is 20 minutes in the morning and 20 minutes in the afternoon. This device (no doubt designed by the Marquis de Sade himself), really rattles your teeth along with your lungs. So far, I have been able to convince my support team, with a promise to be on my best behavior, that 20 minutes in the morning is enough.

Psycho dog

Anyone who’s owned a dog has many fond memories of all the cute and not so cute activities. In my case, Hunter is 95% a great dog; but the other five percent is off the scale psycho! Be that as it may, there is something endearing about a dog that seems to know when you need assistance. More than once, I have found myself trying to get the attention of my wife or caregiver when they were in another room. While I still speak reasonably clear the volume has diminished considerably. In some way I don’t understand Hunter seems to know they can’t hear me and he jumps off my lap and runs into the other room barking. Maybe he’s not so psycho after all!

A drug addict

Drugs play a major role in almost everyone’s life these days. Some are legal and prescribed for legitimate maladies, some are lightweight recreational compounds, and some are life-wrecking. According to Hugh Hefner who says he has tried them all, swears Viagra is the best. As much as I would like to agree with him, I think there is one that trumps Viagra: Breathing.


You may not think of breathing as a drug but I’m here to tell you that it has all the addiction you can ever possibly want. As I mentioned before, we never think of breathing until we can’t. Today I don’t think much about my breathing until my patented “Vinnie Barbarino, up your nose with a rubber hose” is removed from my face (like during a shower). In about 30 seconds I’m starting to look around; and when I see the apparatus returning to attach itself to my nose, I get giddy with excitement. The first breath after a successful reattachment has got to be the best rush there is. Okay, I admit it: I’m addicted. Do I need to be looking for a 12-step?

In sickness and in health

Remember these words? I never dreamed that in my mid-fifties this clause would kick in with such a vengeance (must be retaliation for transgressions in my former life). There aren’t enough words to express just how bittersweet it is being married with ALS. Certainly my lovely wife deserves better.


Throughout our marriage, time and again, she has been the rock. When we heard the unbelievable news and we picked ourselves up off the floor, she kicked in to high gear with positive attitude and support. To say that some days have been difficult is putting it mildly but we have been a team, surprisingly (or maybe not) and thankfully, we are an even stronger team. I count my lucky stars each and every day for my soulmate.

Privacy

Oh yeah, this goes right out the window. If you’re modest at all, you better get over that real quick as ALS ultimately removes almost all sense of privacy. Whether it’s getting dressed by someone, having your teeth brushed, being fed, or being bathed, any shyness you may have had will quickly by the wayside go. As with most things in this adventure, choice is not an option. So you just suck it up and move on. Yeehah!

McGyver

Women complain that guys are lucky because they can pee almost anywhere they want. And it’s true: the world IS our urinal. I now have an even better perspective on just how cool it is to be able to pee like a guy.


As your movements become limited to being much like a Three-toed sloth strapped in a really exotic rolling La-Z-Boy, draining a vein takes on a new dimension: enter the condom catheter. What a great invention! Once you wrap the little guy up and strap on the bag, you can leak your lizzard whenever you want… as long as the bag is not full (another area where you don’t want to piss off your caregiver). This is extremely useful when watching football games and drinking beer.


But, get an itch on Mr. Happy, and you enter a whole new world of torture. It’s bad enough that you pretty much can’t scratch anywhere else (damn hands just don’t work) but now Mr. Johnson is encased in some rather thick latex and fingers just don’t get the job done getting rid of the itch. So, being a fan of McGyver (who can make a bomb out of a paperclip), I had a significant brain fart and determined the bristles on my wife’s hairbrush were exactly what the doctor ordered. So, being the devil-may-care kinda guy I am (and keep in mind my caregiver looks for any opportunity to torture me) I instructed her to get my wife’s hairbrush. It worked like a champ! I’m not too sure what the neighbors thought, seeing as how we were having breakfast that morning in the little patio in the front yard. But hey! Some things you just gotta take care of! Oh yeah: don’t tell my wife.

Popsicle toes

Michael Franks wrote a very cute and popular song named “Popsicle Toes” in 1975. My wife and I both enjoy this song and it always makes us smile when we hear it. Since we’ve come to know and love ALS, “Popsicle Toes” has taken on a significant new meaning.


Circulation slowly becomes problematic as you become more sedentary thanks to friend ALS. One of the manifestations is having toes that feel frozen to the touch. I have been assured it is not frostbite and I am in no danger of them falling off which is good news since I really enjoy pestering my wife with them when we get in bed. It’s the little things you know.

Spa dunking

For the past 25 years we have enjoyed a spa in our backyard. It is a truly marvelous invention providing enjoyment and solace in equal measure. Getting in and out of the spa was another one of those non-thinking habits that just happened. Once your mobility starts being compromised, these kinds of activities force you to think about safety like never before.


Fortunately for me, I have some clever brothers-in-law who love nothing better than working out some engineering project over a beer or three. These guys came up with a way to make an inexpensive body hoist. Some pipe, a small electric lift motor, and a nylon sling from a medical supply, and voila! No more worries about climbing in or out of the spa. But (there’s always one of those) we now have some new opportunities for levity and harassment.


Seems that when this hoist swivels from the pick-up point over to the spa, it must traverse closely to some plants, one of which being a rose bush. This is one of those times when you don’t want to stop and smell the roses. My wife thought it was rather funny watching the look on my face as I closed in on this rose bush with visions of thorns attacking me. She of course grabbed me at the last moment preventing any contact. She still had that mischievious twinkle in her eye (payback?). Once you have cleared the potential rose bush hazard, you have a clear shot for the spa.


It’s really rather pleasant being slowly lowered into the spa sitting in a sling. But my loving wife, ever on the alert, thought it would be a hoot to turn the sling into a carnival dunking game. So there I was trapped, going up and down, and up and down. This is a good time to bite your tongue and just smile.

Happy Feet

I have always thought of myself as a pretty good dancer. The music would start and my feet would want to move. Of course, the rumor was there had been some quantity of alcoholic beverage involved, but I can neither confirm nor deny. No doubt, some envious cretin spreading scurrilous slander.


Recently, when transferring from my wheelchair to the car or the toilet, I have been trying to practice my dance steps but it seems the people holding my arms to keep me upright get a little annoyed when I try to do the fancy footwork. It seems there is no appreciation for the artistry. I mean, c’mon, just because we all end up in a heap on the floor is no reason to get annoyed and threaten to leave me lying there. It’s just pure jealousy I say!

Impromptu Golden Shower

Ok, now don’t get your panties in a bunch. I’m not talking about what you think I’m talking about. If you remember earlier I mentioned the wonders of the Condom Catheter. And it truly is useful. But you really gotta pay attention to the bag.


There are many different styles of these bags and all of them go out of their way to help you slosh in your slippers. Ok, I’m sorry, I know it sounds gross, but you just gotta laugh. Invariably, you will get all wrapped up, strapped up, and feel good to go (pun intended) and as you feel that relaxing sensation of relieving the pressure on your bladder, at least once you will be rewarded with a really warm feeling in your shoe or slipper. At this point, it’s way too late to do anything but laugh at the Golden Shower you just gave your foot.


But there is a silver lining: it is pretty much a self-correcting problem, guaranteed to never happen again, unless your caregiver or wife is pissed off at you.

The Rules

Scores of people make a living trying to convince us through every means possible, that they have the secret to a happy and fulfilling life. Hmmmm… No. I have determined through some painful trial and error that no one else can make you happy. You and you alone must do this for yourself. And I believe there are two rules to help accomplish this:


1. Don’t sweat the small shit


2. Most everything is small shit


It’s really very simple. Attitude is everything. Try it. Don’t worry, Be Happy.

Payback

As ALS begins to worm its tentacles throughout the muscles that help you breathe, (and let’s face it: none of us EVER think about breathing… until we can’t), you find yourself becoming reliant on some form of breathing support apparatus. In my case, it’s a BiPap.


One of the really great things about being on a BiPap is that all your air is filtered. Now, while this is a little disheartening when you’re in the kitchen and something good is cooking, it takes on almost life-saving proportions when someone (including moi) has the temerity to create odiferous emanations from a lower bodily orifice. The Flatus Maximus emanations generally never breach your nostrils.


But there is a really, really important secret you must never tell anyone. Otherwise, your life will be at risk. The filter on the breathing apparatus intake is readily available to those miscreants who would thoroughly enjoy harassing your crippled ass. If they find out about the filter, there is nothing on this earth you can do to stop them from putting the nastiest, and filthiest smells next to the filter intake. Trust me, it will give them hours of non-stop enjoyment, totally at your expense. The bastards will claim it’s recompense for prior benevolent gaseous donations to the atmosphere. The winners always change history!

The little voice

Most of us learn to drive a vehicle of some kind starting somewhere around 14, 15, or 16. As we grew older and our driving skills improved, most guys fancy themselves a cross between Mario Andretti and John Force. While we hate to admit it, truth be told, we’re not even close.


When you find yourself the proud owner of a really tricked-out electric wheelchair, the first thing you’re looking for is the speed switch. It really is true: I feel the need, the need for speed! And hot on the heels of learning the Go-Fast button, that little voice starts speaking in the back of your head. You would think, since you’re relegated to a wheelchair, the damn little voice would take a year or two off. Not so much.


For some reason, though not clearly explained to me, there seems to be a direct correlation between the speed switch and drywall or door-jam damage. But the stalwart speed afficianado must suck it up, let the recriminations roll off your shoulders like water off a duck’s butt, and stick to your guns full speed ahead.

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.