For my wife, Janeen, who always makes me feel like the luckiest guy in the room.

Preface

I suffer from Machado Joseph Disease (spinocerebellar ataxia type three). It’s a rare, degenerative, neurological disorder that’s collection of symptoms include: ataxia (disrupted balance, I’m writing this from a wheelchair), painful muscle spasms (mine have decided my torso would be a good place to manifest, although they can and do happen in the extremities), dysarthria (garbled speech), insomnia, double vision, frequent urination, trouble swallowing, excessive drooling, and eventually death. I never considered death to be a symptom; death is a result.

Basically, the disease is causing my cerebellum to wilt and atrophy. Medical science doesn’t know how or why, but they’re pretty sure that all my faculties will remain in tact. Yeah, for me. I should be fully aware that I’m on my death bed. The end result of the disease is the end.

The illness is autosominal dominant – meaning that if one parent has it, in this case my Mom, and the other does not, their offspring has a one in two chance of contracting the illness. Kind of like a cosmic coin flip. I lost.

To be fair, while the list of symptoms remains the same, their severity and the age of onset changes from person to person. MJD is what is known as a repeat disorder. Meaning the sequence of the affected person’s genes – in this case the CAG part of the DNA strand – repeats itself a number of times in order to make the carrier sick. The more repeats you have, the worse off the illness will make you. It is possible – and even likely – for there to be a different number of repeats from a single source, like my mother (that’s the science portion of our show). Personally, I carry repeats that are in the high 90’s. Sound like a lot? Well, it is.

Now onto this book. Unlike most memoirs, this will not be chronological. I’m under 40, and I’m not going to pretend each of those years are interesting enough to warrant explanation (I had a happy, healthy, and abuse-free childhood). I will be offering anecdotes and opinions on topics – some of which have been colored by my experience with this terminal illness. And others are just experiences from my life that I think you, dear reader, will enjoy, and maybe even identify with.

What’s Funny About That?

Since so much of this book is tied into what’s funny about having a life threatening illness, I thought that I’d start there. My own sense of humor was shaped in part by my Mother, Candy, who passed away at age 50 from complications of the same disease. She never lost the ability to laugh, whether at herself or other comedic scenarios. As my grandmother told me more than once: “She was a lot of fun.”

When I was 11, my Mom suggested I rent the video “George Carlin: Playing with your Head,” and so off to the video store I went. I remember feeling slightly surprised they had the video; on the cover George was playing pool and on the cue ball there was an image of his own head. I rented the video. Back then there were no laws about renting an R rated movie to an obviously underage child, and I went home to watch my new treasure.

The first big laugh he got from me was during his “hello/goodbye” segment, “and give Claus, a big blow job from me!”

That was a pivotal moment in the formation of my sense of humor. Crass. Surprising. Exciting. I immediately began to look forward to George’s yearly routine change – broadening my understanding of the truth and what’s funny about it as he did.

I began to pay attention to other stand-ups; to deconstruct what about their routines made me laugh and to emulate my favorites: Steven Wright, Richard Pryor, Bill Cosby, Eddie Murphy, Andrew Clay, Sam Kinison, Robin Williams, to name a few. Each of them unique. All of them unafraid to tackle controversial subjects – and create them too. (Of course I realize there are next generation comics out there today who are worth their salt, but I’ve followed their careers and can see their influences, much the way I see my own. Thus there would be no Louis CK without George Carlin, no Dave Chapelle without Richard Pryor, no anyone without Bill Cosby.) So stand-up was my first exposure to what was funny.

My Mother also recommended movies to rent: Animal House, Caddyshack, and Monty Python’s Meaning of Life. None of which would win her mother-of-the-year awards by today’s standards, but worked at warping me (surely, not her intentions), and my sense of humor.

My father, John, posses a wit so dry that its affect on me are there, but subtle. Much more Mark Twain than blunt comedian, he rarely laughs out loud, so when he does I file it away as something that was definitely funny, and to be examined.

A story that I love to tell about my Dad has to do with the draft and Vietnam. Already classified 4F due to poor vision (aside from being red-green color blind, he’s legally blind in one eye), he was determined to make sure that nothing got in his way of not going to this useless and pointless war. And so, his interview went something like this:

Recruiter: Suppose you were in the desert, and you saw a battle ship, what would you do?
Dad: I’d sink it with my submarine.
Recruiter: Where would you get a submarine?
Dad: The same place you got your battle ship.

It’s a good thing that they were only looking for foot soldiers, otherwise they might’ve recognized the genius in that answer, and sent my Dad over there in a non-combat role. In addition, to being funny to those who pay attention, my Dad is extremely well read – especially about war. It fascinates him. He calls it, “mankind’s biggest mistake.”

All of that combined with a natural absurdist point of view can best be summed up by my ambition in my high school year book. Believe me, it isn’t always easy but my ambition is still the same to this day: “To find the humor in everything.”

What is Handicapped?

I’m going to use this section of the book for us to nail down a common person’s definition for handicapped. “Any person who is limited physically or mentally through no fault of their own to the point where he or she has difficulty doing something a normal person does habitually.” Now, that is just my personal definition. Please note that it does not include knuckle-draggers, meatheads, or other people who can’t do long division. It does include Veterans (both mentally and physically wounded), those born with a “subprime” intellect that limits their functionality, like holding down a job (greeter at Wal-mart or bagger at the supermarket doesn’t count), those with a well-known debilitating illnesses, or people like myself, who are stuck in a goddamn wheelchair, and suffer a whole host of other symptoms with a virtually unknown sickness.

The according to Hoyle definition of handicapped is simply “physically or mentally disabled.” That works for me (even if my version is a bit more inclusive). So for this book, we’ll use the dictionary’s definition, but amend it to include “through no fault of one’s own.” I just don’t feel like the drunk driver who scrambles his brain case while running over three nuns and five kids, belongs in the same classification as me.

And then there’s the term which I think requires some sort of national standard: handicap accessibility. Whether it’s amusement park rides, hotels/motels, public transportation, rest rooms, concerts, or other facilities that the handicapped (heck, everybody) must use, they ALL have a very different idea of what this definition is, and that they, obviously, meet it.

I’ve stayed in motels where their idea of a handicap room consists of a 60 to 75 degree incline to a door that barely accommodated my goddamn power chair – where a slip up in maneuverability can cost you the flesh from the knuckles of both hands. And then once inside this paean to disability, the bathroom door is about four sizes too small, eliminating any chance of getting your goddamn chair in there. But that’s alright because, if you could fit a goddamn wheelchair in the bathroom, the fixtures are sized and positioned to make using them an impossibility.

That’s not to say all hotel/motel bathrooms are crappy. I’ve also stayed in places with incredibly pleasant staff and a handicap room to match. Spacious doorways are coupled with roomy rooms that make turning in my electric piece of shit effortless. The bathrooms in these places are big enough to take my chair into, and have grab bars everywhere. Even though I don’t subject a wheelchair to my naked ass, the showers are roll in ready. Many of them have seats built in to them (believe me, not needing to stand or hold on to grab bars during a shower is a fucking luxury).

Best of all, these handicap rooms cost the same as other rooms. Nothing pisses me off more than when a place charges even a few dollars more for the privilege of using a handicap room. The “privilege,” as if anyone in their right mind would rather have to stay there. Handicap rooms should cost the same as the cheapest room in the joint. Heck, handicap anything should be as inexpensive as the cheapest whatever you’re buying (I’m not advocating for savings of 35 cents on a loaf of bread).

Music concerts are notorious for pumping up the price of handicap seats. It’s not as if the purchaser has any other choice, besides not going to a show. You’re at the promoter’s mercy, and they have none. This pricing disparity would be a part of my bill for the President to sign into law.

It’s a Family Matter

There are two people in this book whose name’s I use frequently and whose relationship to me may warrant an explanation.

I am married. My wife’s name is Janeen. She is funny, intelligent, attractive, and a great mother to our as of this writing, two-and-a-half year old daughter, Camille. She has shown the utmost patience with me and my disability (even though we’ve admitted to each other we didn’t know this would be so hard), asks me to repeat myself and tries to figure out what I’m saying, and understands that I value time with my friends. In short, she knows me better than I know myself, and still loves me.

I could fill volumes about Janeen (how do you try to explain everything in just one?), but I know that’s not why you’re reading this book. So, I am married. My wife’s name is Janeen.

Right now, Janeen and I have one kid – a daughter named, Camille. She was conceived the “natural” way, instead of by using the Boston Invetro Fertilization Clinic (IVF), which could have guaranteed her a life without MJD. Had we used IVF, and been lucky enough to have a baby through them, who’s to say we would’ve had the same kid? Camille is rambunctious, curious, articulate, and according to her pediatrician and daycare providers, a tad gifted as well.

The IVF works like this: I masturbate into a cup, and my boys are mixed with five or six of Janeen’s eggs. We hope for fertilization, and if it occurs the fertilized eggs are grown in the lab until each one is eight cells big. Next one of the cells is tested for MJD. If it tests positive, it gets tossed. If it’s negative, it gets implanted into my wife (who has been taking drugs to fool her body into thinking its pregnant), and hopefully it takes hold and becomes a baby. Better living through chemistry! But, as in all things in life, there are no guarantees, and a lot of things can go wrong. Plus, it’s supposed to cost $20,000+ a throw.

Do I worry that Camille has the faulty gene and will end up with MJD? Of course. I’m far from a religious man, but the one thing I pray for, that I’d actually sacrifice everything for, is that she doesn’t. However, I don’t let this worry consume me. I go through stretches where I don’t think about it at all. Maybe there’s not enough time in the day to do so? Maybe I enjoy being with her too much to see her for anything than what she is right now: a healthy, growing little girl who brightens my life with her unending zest for living? Or maybe to focus on it too much would drive anyone insane?

Either way, my love for my daughter is unconditional. No matter what she turns out like. No matter who she chooses to accompany her through life. Good decisions or bad. My heart and support will always be there. I regret that it seems like I won’t be around to share in some of life’s delights with her. I have nothing, but the utmost love for Camille and her mother, too. Unless you’re a parent, it’s hard to completely understand the pull your kid has on your life.

Please note: The remainder of this has more to do with the birth of my daughter then my struggles with MJD. Although there are still some laughs, if this isn’t your thing you might want to skip ahead to the next section. I won’t be offended.

The night Camille was born (or morning – it was 3:23am), Janeen and I were getting ready for bed, after a day of prepping (painting, moving furniture around) the nursery. Janeen’s sister, Lisa, had just left having had helped us. It was 11:00pm.

Janeen was on the toilet when her water broke (a clean break, with nothing to mop up!) and she decided that she didn’t like the the underwear she had on because it had too many holes in it. So instead of taking her (I was unafraid to get behind the wheel of a car then, as long as it was a simple, easy-to-follow route. I don’t drive anymore, and was using a rented scooter to help me get around at the time) to the hospital, I spent the next 15 minutes rooting through her underwear drawer for skivvies with no holes in them. There were none. It didn’t matter anyway.

We’re on our way to the hospital; a scant 15 minutes away. There are no other cars on the road (a benefit to driving in Cambridge past midnight on a weekday). I’m paying particular attention to what’s on the radio – as if what I’m listening to will affect the baby’s opinions. Paul Simon and Tom Petty are the only two artists I can remember. Janeen has called ahead. She will have a cesarian because the baby had flipped into a breech (feet first) position.

Silently I am glad of the operation. Janeen will feel no pain. She is disappointed at not having a vaginal birth. In the O.R., Janeen is prepped with a sheet covering her, so we cannot see what’s going on. I’m assuming that’s for the best. We heard Camille cry before we saw her, and instantly we both burst into tears.

It was one of the most surreal moments of my life. I know I’m not doing it justice.

July 9, 2010. The day I became a Dad. 6lbs. 7on. 21″ long. Camille Candace Enos came exactly one week earlier than expected.

February 6, 2005: Heartbreak

Let’s get some of the sad stuff out of the way: This is the day my Mother died. Her passing has affected me in more ways than I can count. We spent the days leading up to it on a constant vigil by her side. Talking to her, even though she could not talk back. Saying our good-byes. Telling her she was loved, and will be missed. At one point, I explained to her why the doctor had inserted a catheter tube (she was immobile, in bed), and that it was all covered up by the blankets she wore. She stopped struggling with the blankets; presumably satisfied by my response.

The night before, I remember having a dream. I had a beanbag chair with a tear in it. The beans were rapidly falling out. I was crying. There was nothing I could do to stem the loss of beads. Janeen (we weren’t married, yet) was there consoling me. When I woke up, the message was clear: My Mom’s time was running out.

My Mom’s entertainment, besides us saying our good-byes, was the Bose radio/CD player my Dad had tuned to the classical station. I’ve made Janeen promise that if I’m ever in the same position, she will keep me tuned into my second love, rock n’ roll of the 60’s or 70’s. I would much rather go out to the Who’s Tommy than anything written by Chopin. Roll over Beethoven. They say your sense of hearing is the last to go (who knows how they figured that out?), but if that’s remotely true, I want the last thing I hear, short of my wife’s voice, to be something that brought me much joy in life, not elevator filler.

I used to think the ability to observe my mother, the affects of MJD, and the way she dealt with them would be to my own advantage when dealing with the illness should I’d have it (remember, she was married and out of the house when it began to seriously strike her father). Not so, my learning from observing her was minimal, although I do know the correct way to hold a burger.

Sports fans will remember this as the day the New England Patriots defeated the Philadelphia Eagles on their way to their third Super Bowl championship. Janeen, my brother, Aaron, and I walked (I had no symptoms of the illness then, neither did my brother) up the road to watch the game at my cousin’s house. My Dad’s TV didn’t get it. I remember telling my Mom that I’d tell her the result of the game. She died during the first quarter. So, anyway: Patriots 24, Eagles 21.To me, a life-long Patriots fan, this victory offered the slimmest ray of light on my darkest day. I have clung to the Patriots ever since. Even though I have never watched this game in its entirety, and I doubt I ever will.

I was back at work as a writer for Bose – hence my Dad’s radio/CD player – within the week. A lot of my co-workers expressed surprise at seeing me so soon after my Mom’s death. My rationale was that it beat sitting around and feeling bad. Go out and do something. However, the department, née the entire organization, managed to offend me in one swoop. They presented me with the notice of a donation in my mother’s name to the National Ataxia Foundation. This part was obviously good. It’s the amount that had me seeing red: $20.00! Of all the cheap, dirty, rotten so-and-so’s! Bose is a multi-billion dollar company. Dr. Bose is a multi-billionaire personally. A “gift” of $20 is like a slap in the face coupled with a kick in the nuts for every Ataxian out there. Dr. Bose probably wipes his ass with $20 bills. Is it too much to ask to add a second zero to that donation? My mom is worth more than $200 bucks, but at least it’s nothing to laugh at (the one time in this book that I’ll refer to laughter negatively).

I suppose deep inside of me, I realize I’m being an ingrate. $20 is $20, right? Then why does it always feel like a massive dick punch? It’s hard to believe I can still get worked up over this after nearly a decade. What can I say? I’m a passionate man.

Whenever I’m feeling particularly down, I like to think about what my mother’s reaction to Camille would’ve been. The elation she would’ve felt at her Granddaughter is so strong that just imagining it is enough to make me smile. I wish my Mom could have seen her just once.

I miss you, Ma.

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