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, for you scientific-types). It’s a rare, degenerative, neurological disorder that’s collection of symptoms include: ataxia (disrupted balance, I’m writing this from a goddamn 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), depression, dysarthria (garbled speech), insomnia, double vision, frequent urination, trouble swallowing, excessive drooling (any drooling could be considered excessive drooling), and eventually death. I never considered death to be a symptom; death is a result.

Neuropathy, which affects my body’s nerves and consequently its ability to regulate its temperature, has also begun to bully its way into my life. Very little is known about it as a symptom of MJD, but I can tell you from experience that it hurts like hell.

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 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 as I’ve illustrated here mostly normal 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.

Useless fact: MJD is a relatively new disease. The first cases were diagnosed in the 1970’s. So, most people won’t even be aware of its existence – much less give a two-fingered shit about it – for at least 50 more years.

Part I
I’m Funny … Right?

Mommy Issues: 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 large 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 or so, 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 so I went home to watch my new treasure.

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

Whether I realized it or not (I didn’t), 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 not watch them without in part hearing their influences, much the way I know my own. Thus there would be no Louis CK without George Carlin, no Dave Chapelle without Richard Pryor, no anyone without Bill Cosby. You might not want to leave your Sister with him after the show, but his influence on the art of stand up is unmistakable.) 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. I thank her for it.

Daddy Knows Best or Go Ask Your Mother

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.”

Mother, can you Spare a Brother?

I’m lucky that my parent’s looked at me and said, “We can do better.” And so, my brother Aaron was born on June 11, 1978. Aaron’s place in my personal history has evolved a lot. He’s been the annoying little brother, just some guy I live with, and finally confidant and best friend. Aaron was the best man at my wedding and I at his. My best man speech was well-received. It was meant to both embarrass Aaron and give the audience some laughs at the same time. Mission accomplished. I’m just glad that I gave my speech second so Aaron will (hopefully) never get the chance to outdo mine in terms of embarrassing me or gathering laughs. Aaron’s speech was short and sweet. Given on the fly, it garnered more heartfelt “awws” than whole belly chuckles, which is okay because that’s what it was intended to do.

Aaron also suffers from the injustices that is MJD. At 36, he uses a cane during the day and a walker when he’s more likely to be tired at night. We are able to commiserate with each other about the many tests, drugs, procedures, results, side effects, studies, and potential therapies that we each have had and what to expect. Although I would rather communicate face-to-face. I’m not sure if he realizes it, but Aaron sucks on the phone (not that I’m any better). I guess it’s true: Misery loves company.

As far as my sense of humor goes, Aaron’s role in developing it is difficult to pinpoint. On one hand it’s similar to my own, and much of what I find funny, I’m relatively sure he’ll find funny too. On the other hand, Aaron blindly follows our father which taints the uniqueness of his personality. Uniqueness being a large part of the truly funny. If  our Dad says something isn’t funny Aaron is apt to agree with him sight unseen. Instead, his focus is the illness itself. He is generally spot on with his observations and facts concerning the disease. I’ve turned to him many times for information regarding the illness, it’s symptoms and progression. Aaron is the only person I know who has had his wallet boosted at New York’s Grand Central Station.

That’s not to say Aaron’s role in shaping what I call funny is nonexistent. It’s just well, different. For instance, I’m not that into physical humor, but it was different with Aaron. An unexpected kick in the nuts on a Japanese game show, floors us both. When the humor in question involves a new way to cause each other pain, we’re all for it. And so ladies and gentlemen it is my honor to present to you, an Enos Brother joint …

The Portuguese Games (PG)

If Aaron and I are to be remembered in terms of fraternal love and brotherhood, I would prefer the PG to not be a part of that. However, I do think that as a testament to our combined creativity and comedy skills, they are on the bassist level amusing. Amusing, and funny.

Anyway each of the three events that make up the PG are geared toward causing the other players physical pain (listen to me, I sound like people other than my brother and I were participants). The end goal being to hear the other guy call “mercy” or tap out in today’s parlance. So without further ado, here are the three events of the PG and a brief description of each:

The Temple Squeeze. The beauty of the events in the PG is that they are named to generate the bare minimum of confusion. The Temple Squeeze then is exactly what it sounds like. Competitors hold their opponent by the temples and on the count of three squeeze. The resulting pain is sort of a cross between a massive ice cream headache and having someone squeeze the shit out of the side of your head. Loser is the first to give.
The Head Mash. While on all fours, competitors attempt to line up the crowns of their skulls, and then mash them against one another, until pain or fear of permanent damage forces the loser to quit.
The Hair Pull. Of the three events that make up the Portuguese Games, this is the one that has the most potential for physical disfigurement. You see if pulled in the right spot, right direction and with the right amount of force hair fucking tears out. And if you’re unlucky enough to have an opponent who just doesn’t give a shit, you’re faced with two undesirable choices: concede the event and most likely the games too, or attend school, work, or any other social engagement the next day with a spotty noggin.

What is Handicapped?

The according to Hoyle definition of handicapped is simply “physically or mentally disabled.” That works for me. So for this book, we’ll use the dictionary’s definition. It should not include knuckle draggers, lunk heads, and other people who struggle with long division. 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 saving 35 cents on a loaf of bread, without the proper coupon of course.)

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.

Location, Location, Location?

A brief history of the town my parents raised me and why/how it played a role in my upbringing. Provincetown, Massachusetts is a three mile spit of land at the end of Cape Cod. It is unique with a bohemian vibe. I can think of no better place to bring up children who are open-minded and tolerant. Because of Provincetown’s open and permissive atmosphere, it’s native sons and daughters have been faced with tough choices regarding sexuality and other alternative lifestyles for at least the past 100 years. For those of you who are already giggling through their teeth because you recognize the name Provincetown (or P-Town as it is known) as a homosexual Mecca, you’re only partly correct. In fact, Provincetown has and is going through many iterations, and “yes” an abundance of gay men lured by the prospect of easy sex and an ability to live out of the closet is part of that. So native people are given a choice: Be upset by this or see past it. To me, it was always easier (and much more fun) to look past it. Who has the energy to be upset all the time? Especially, by something you have no hope of changing?

In 1620 the Pilgrims land in Provincetown and write and sign the Mayflower Compact in Provincetown harbor. The document guarantees religious freedom to all (as long as you’re a white male landowner who practices the same puritanical religion that they do). After a scant several months after landing, the pilgrims deem Provincetown too sandy to live in, and sail across Cape Cod Bay and take up shop in the friendlier, and more fertile confines of Plymouth, Mass.

Provincetown known as Hell Town at the time, and a subsidiary of next door neighbor Truro, becomes a dumping ground for those that live in opposition to the Pilgrim’s puritanical ways. (Apparently, Australia was too far away.) Truro, tired of paying the fines incurred by Hell Town, begs the Massachusetts government to make Hell Town, it’s own town.

It only takes 13 years, but eventually the powers that be agree to Truro’s requests. A new town will be formed and it needs a new name. A vote is set and although Herrington wins the local vote, the town’s government backed designation of Hell Town as being a “Province Town” of Truro wins the day. Hell Town is incorporated into the state as Provincetown in 1727.

Provincetown is the second most profitable whaling port in New England right behind New Bedford. I think that assholes in county’s that continue whaling today – I’m looking at you Japan – should at least be forced to use old time whaling equipment. Hand held harpoons instead of rocket propelled ones with exploding heads. Men that are lowered into a row boat to take a “Nantucket Sleigh Ride” to recover a harpooned whale’s corpse. I think that this aught to even up the odds as the crew may be forced to confront the power of an angry whale.

The cornerstone of the Provincetown Monument commemorating Provincetown as the first landings place of the pilgrims is laid by U.S.. President Theodore Roosevelt in 1907. It will be dedicated by U.S. President and 300 lb fat fuck William Howard Taft in 1910. It stands 252 feet and is still the tallest man made granite structure in the Western Hemisphere.

Confident that he’ll fit right in with Provincetown’s eccentric populace a young artist and fisherman named John Enos moves from Halifax, Canada to Provincetown, Massachusetts, USA.

John Enos fits right in.

My great-grandfather’s art work was growing in popularity – even earning him a solo show at the Julian Heller gallery in New York City – when he abruptly dies, but not before fathering four children. Three of which will survive into adulthood. None of which have his artistic abilities. His son, John fathers my father John. My Dad has inherited his grandfather’s artistic abilities. Leading us to believe it skips a generation, so my daughter ought to be the next DaVinci (hopefully without the manic depression and sliced ear). The Provincetown my Grandpa and Dad know is changing around them. It’s permissive attitude and liberal slant has it becoming the gay headquarters it’s known as today. Somewhere along the lines, I am born. My mother makes my father give up all hard drugs and alcohol. My Dad agrees, and does it. My Dad explains some of mine and my brother’s liberal upbringing to Janeen as, “You grow up fast in Provincetown.”

I was the first of most of my college friends to have had sex, to work a 40 hour work week, and to get drunk. All hallmarks of adulthood, if you ask me. Grow up fast, indeed.

The Beach

The house where I grew up was a mere few minutes walk from the beach. As is such, I spent the majority of my formative years (at least until I was working age or 13 in Provincetown) at the beach. My beach was Saint Mary’s of the Harbor. I didn’t realize the beach was such a special place until I was much older. Only after I spent substantial time away from it and broadened my horizons by meeting people who didn’t grow up in the same conditions I did (which was everyone) did I come to understand the beach as the place of limitless beauty and serene tranquility it is. I’m very lucky to have grown up there.

Nature’s Holding Cell

People find it funny that the beach was also a place to be sent to in lieu of our rooms. When my brother, Aaron or I had misbehaved to the point where my parent’s couldn’t stand to have us around, it was always “Go to the Beach!” My brother and I could have been much worse than we were, so marching orders to the Beach were infrequent, but still it’s cool to think we were sent to a place most people would consider paradise as punishment – until a more suitable disciplinary action could be instituted.

Of course, Aaron and I would always hope our time away would prove an adequate enough cool down period for our parents to deem “time served,” and count our banishment to the beach as punishment enough. Or maybe, just maybe, they would forget why they were mad at us in the first place.

Fisherman’s Spine. Artist’s Soul.

Along with being a hugely profitable fishing village that brought in payloads of cod, blue fish, snapper, lobsters, clams, and other delicacies from the sea, Provincetown was once home to actors like Richard Gere, Al Pacino, and Bette Middler, as well as renown music acts and soon to be Woodstock veterans Joe Cocker, Richie Havens, and Paul Butterfield. The J. Geils Band held court for a week straight here; stopping by the restaurant my father cooked at to buy drugs from the dishwasher. And Provincetown-band The Barbarians opened for none other than The Beatles during their first U.S. Tour. Tennessee Williams loved and wrote here. Literary giant, Norman Mailer lived, wrote, and died here.

These names barely scrape the surface of the many celebrities and celebrities to be that once were inspired by the Cape Tip’s beauty, permissive lifestyle, and seclusion. Plus, many a starving artist left Provincetown with a full belly because of the fisherman’s bountiful catches.

Joe Cocker’s connection to my family: He once bought my Mom a hot dog. My Mom knew the owner of the Provincetown venue where Joe was to play, the Blues Bag. The owner hooked my Mom up with Joe, and while they were downtown, ‘Ole Joe decides he’s going to buy himself a hot dog and he asks my Mom if she wants one. My Mom assents, and when I get ahold of that information, I make it a point to tease her with it every time we hear a Joe Cocker tune. Every Thursday night, I would make up lyrics about this hot dog transaction and sing them to the Wonder Years theme song, Joe Cocker’s version of the Beatles classic, “With a Little Help from My Friends.”

I don’t know if I ever told her, but I found the entire hot dog story exceedingly cool.

The Making of a Funny Guy: Nature or Nurture? Yes.

Beaches. Sea food. Summer jobs. Drugs. Tourist, and their daughters. Bars. Booze. It’s easy to see how Provincetown in the summer was, for the most part, one big party.
It was my upbringing combined with a natural absurdist point of view which leads to the sparkling personality that I try to imbue in every word I choose. All that is me 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.” And I figure that if I can make some of you laugh out loud or even crack a grin at my having a terminal illness then my job is done.

My Family, Now

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. She has taught me to love in a whole new way, and her antics are worth at least one hilarious, full-belly laugh a day. I don’t know many people who are capable of that.

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 of each of the fertilized eggs 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

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 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

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. I like to think she died a good death.

The night before, I remember having a dream. I had a beanbag chair with a tear in it. The beans were rapidly falling out, one by one. 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 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, 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 when I think about it? 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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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.

National Geographic Channel’s Taboo

In order to gain viewers, the first four or five episodes of this program had to do with sexual peccadillos (you know weirdos who get turned on by balloons, and so on), but I knew the show hit a creative snag during the segment about “purity balls” on the episode about Teenage Sexuality. For those of you who don”t know, a “purity ball” is a party where a bunch of teens get together and promise not to have sex until they’re married. I fail to see what’s Taboo about that. Kids have been lying to their parents since the start of time.

Unverified Facts
People who prefer their toilet paper to fold over, rather than under, the roll are good in bed. You have friends on facebook you’ve never spoken to in real life. If Michelle Bachman and Rick Perry had a kid, it would be the antichrist.

Wheelchairs
One bonus to being confined to wheelchair is that I get to see the basic goodness of humanity everyday. To the dude who held up a line of cars exiting the bank to make sure I can get into the ATM, the woman who helped me grab a bottle of Pepsi while grocery shopping, and all the people that afford me the courtesies in-between, I say “Thank You.” Of course, the cynic in me thinks they go home and beat the crap out of their pets.

J.C. Penney
This popular retailer followed the release and recall of a t-shirt with the line, “I’m too pretty to do homework” (who thought that was a good idea?) with this broadcast gem. Whereas some women’s groups see a misogynistic message, I just see bad advertising. After all, who can tell me how many pairs of slacks this spot featured? I thought so.

Let me save you some time. Find the unedited pool scene from Fast Times at Ridgemont High here. (Warning: By clicking this link, you agree to see Phoebe Cates’ bodacious boobies.)

This Issue’s Take Away: If no news is good news, what does it mean that there are three 24 hour news networks?

27
Robert Johnson. Jim Morrison. Janis Joplin. Jimi Hendrix. Kurt Cobain. Amy Winehouse. The world lost some pretty heavy hitters at 27. Is there some sort of mystical link between talented people and death at this age? Well, no. Did I silently congratulate myself when I turned 28? Absolutely.

Chik-Fil-A
This food court eatery is closed on Sundays to give employees a day off to worship as they please – which is great, unless you’re Jewish, or a Muslim. Their holy days are Saturday and Friday, respectively. All of which leads to the logic behind Chik-Fil-A’s employment drive: If you can’t work here, you’ll go to Hell.

Hurricane Irene
I’ve never been so disappointed to have missed a natural disaster. After having been battered by hype for 5 straight days, we didn’t even lose power – shit, the lights didn’t even flicker. The only thing that’s worse for wear after this storm is that we now own a canned ham.

Note: The MDC issue’s a preemptive apology to readers in Vermont, or anywhere else where life was made difficult by Irene.

The Constitution
It’s bad enough that many of the Republican presidential hopefuls will bring fringe issues like gay marriage, and abortion to the forefront this election, but many of them support writing the bigotry inherent in the issues in the constitution. I wasn’t a Poly-Si major, but it seems to me the constitution is there to protect what people CAN do, not to tell them what they CAN”T. That’s why the laws in it are called “rights.”

Toilet Seat Lids
To the best of my knowledge there are two kinds of these: hard and soft. To my ass, hard is the only way to go. Otherwise, it’s like dropping a deuce while sitting on a mushroom.

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This Issue’s Take Away: Dentists have a high suicide rate.

Newt Gingrich
A scumbag in every sense of the word, this presidential hopeful divorced his second wife while she was dying of cancer. Imagine his end of that conversation: “Well, you know I care about you, but the doctors gave you six months, and frankly, I can’t wait that long.”

Private Jokes
As long as your sense of humor isn’t based on them, private jokes are okay. Whether they exist between a small group of friends or two loving hearts, private jokes are best if unexplained. So please don’t feel the need to explain them unless you’re asked. They’re never as good as you think they are – that’s why they’re private.

Boston Sports
Normally I’m not one for braggarts, but when your city is home to seven major championships in 10 years, a little gloating and over all jack-assery can be excused. So that’s why I’m issuing this call to action for Boston sports fans: give me your best bumper sticker lines regarding any (or all) our championship teams. I’ll post my favorites in a later edition of the MDC. Here’s my contribution:

Boston, Ma
Our sports teams dick punch your sports team.

From the Edge with Photographer Peter Lik
Lamely trying to capitalize on the once popular “Survivor Man” and “Man vs. Wild” series, this Weather Channel program features an Australian photographer going to extremes to get the perfect nature shot. Not a bad idea for a show five years ago, but the extreme portion is toned down when he’s advocating how to extend camera battery life by wrapping it in your underwear.

This Issue’s Take Away: Why isn’t there a Surgeon General’s Warning on alcohol?

The MDC is going on hiatus through August. I’ll be back in September.

Tribute Bands
The kissing cousin of the cover band, the tribute band aims to emulate the music, style and, mannerisms of certain performers. Not surprisingly, these bands take their names from associations with their muses. Hence, The Fab Faux is a Beatles tribute; Who’s Next channels The Who, and so on. That being said, I’m still waiting for a Kiss tribute band called Our Music Sucks.

Olive Garden
Home to serviceable Italian fare, and rustic décor, this restaurant chain promises “When You’re Here, You’re Family.” So would they give a shit if you got hit by a truck after you’ve left their dinning establishment? (And how much does one tip family, anyway?)

Bank-Issued Accidental Death Insurance
Since I’m “permanently disabled” and not a good bet to most insurers, this is pretty much my only option for insurance. So, if I’m killed by a runaway ice cream truck that’s being piloted by five inebriated penguins, one of whom is named Jose, my wife is going to be a wealthy woman.

MiO Water Enhancer
Six flavors. A trendy egg-shaped container. Zero calories. A marketing campaign that includes a sponsorship of The Daily Show with Jon Stewart and a catchy ad. If you’ve ever been sold on this stuff, what you’re drinking is actually hip Kool-Aid.

Whoever Smelt It, Dealt it
Nothing dissolves a group faster than a SBV (silent, but violent) fart. To escape the stink’s epicenter (and avoid being labeled its cause), people run in droves – unless they can’t. The room-clearing bust-ass is one of the cripple’s worst nightmares. They are forced to partake of the aroma while everyone else flees. Worse still, they are left alone in a room that reeks of baked ass, when someone wanders in and automatically assumes it was them in the first place. Blame it on the cripple. A ploy I’d be all for – except, now, I am the cripple.

This Issue’s Take Away: Contact The MDC at moderndaycritic@yahoo.com, or simply leave a comment.