Title: The day we shot my hospital bed
Yesterday two men took my broken hospital bed; her back frozen at a 45 degree angle, giving it a charming “sliding board in a torture chamber” effect, they took her behind the barn and shot her, putting her out of her misery, like some sick cow. I was sad to see her go — but after working on her circuit board, in a meticulous sequence of strange resuscitative techniques akin to the death of HAL at the end of “2001: A space odyssey” — it was clear that there was no bringing the bed back. “How did the bed get that way?!” my home nursing aide asked upon entering my room first thing in the morning. “Use your imagination!” My sister tells her, smirking, her eyes darting back and forth between Laura and I. “Don’t ya’ll know that’s a hospital bed!” my nursing aide said, wagging her finger, a devilish grin on her face. Laura and I remained silent, as if to say “Who us?”
Now, lying in my new bed, my hand on Laura’s stomach, waiting to feel a kick or maybe a moon walk from inside Laura’s womb, now thinking back on how the bed was dragged out the door, I suddenly feel sorry for the bed. I think there’s a word for that, where you give objects human characteristics, I believe the word is schizophrenia. Anyway, it’s just that five months ago, how can I put this delicately, well… I got the bed just over 5 months ago and our baby is due in 4; you do the math.
So, goodbye old bed, ‘sorry we broke your back; we didn’t mean it. Thanks for the memories.
Patrick, Laura and B
Title: A fly went by.
I saw my nephew reading this children’s book. It is a classic. The reason I bring flies up, is because today is Friday the 13th, and I was thinking of a possible story to share that did not involve hatchets, hockey masks, zombies or for that matter zombies playing hockey with hatchets. The tale I tell involves a child sitting alone at a public pool. He is a brown haired boy with a galaxy of freckles on his cheeks and innocent shoulders. We don’t know where his family is, but they must be close because the brown-eyed, five year old boy looks tranquil after a long day of cannon balls, adult swims and cherry Kool-Aid. Some of the Kool-Aid is still on his hands, and so it’s no surprise when a large black fly begins to orbit the small boy. The fly touches down on his arm. The boy does not notice the fly until the pain begins to radiate from his arm. Strangely, as the pain increases, the boy becomes more and more paralyzed with fear. The fly seems to grow as the pain continues, until, in the eyes of the boy, the insect is as large as one of the sugary dates his mother eats as a snack. A small droplet of blood forms under the biting fly’s mouth. Unable to scream, the child looks for help, and when it becomes clear there is none, the boy resumes his tortured poolside imprisonment. Tears stream down his frozen face. I wonder why the boy didn’t yell out for help or shake his arm or maybe jump in the pool? In the mind of a child, these questions all have a logic of their own. Eventually the boy’s mother came running, and all was well in the world again. The boy never forgot the terror of those moments and now, just under 30 summers later, the man, his arms paralyzed from a god-awful neuromuscular disease, sits on his back porch, equally terrified as a fly goes by, then doubles back and lands on his ring finger, beginning to bite. Using all his will to move a single digit, the fly persists, the man, the boy, helpless, scared, the queer duality of fear, unifying two events, three decades apart into one seemingly cruel singularity.
So friends, that’s my “Friday the 13th” horror story. My kingdom for a Go-Go-Gadget fly swatter.
Title: “Tuesday’s with Morrie” with Eileen with chocolate.
Today is Tuesday and that means Eileen, a family friend, and now my friend, is here with Lindt truffles and Lebanon bologna. Tuesday I write esssays aloud, then Eileen reads some of “Morrie” aloud. We sit by the back door, unable to do our work outside, foiled by the incessant white noise of 1,000 air conditioners. Eileen laughs when I tell her of my plan to carry out a nocturnal mission, my face covered in black camouflaged paint, my knapsack full of dynamite, whereupon I lodge a stick of these high powered explosives under each neighbor’s deafening AC units. Ah, the sweet silence that would ensue after these initial blasts. The dumbfounded looks on the neighbors’ faces as they stumble out of bed, curlers hanging from their disheveled hair, only to find a crater where their 25,000 BTU monsters once held purchase. Ah, the sweet sound of crickets and bullfrogs reclaiming the airwaves of the dawn, the smell of gunpowder still fresh in the breeze. Eileen and I giggle as we write this, the fantasy finding its way to our funny bones. Today is Tuesday, and the copy of “Tuesdays with Morrie” sits atop a stack of my “Everything Will Be Okay” DVD’s. I like seeing the two together. I don’t know who organized my room that way, but seeing them together somehow makes me feel like I’m carrying on, in some way, the long line of narratives that connect the dots, one soul, one chapter, one life to the next of characters in the ancient book of this disease. So, as the sun thunders above us, (Eileen and I love a good thunderstorm) and I watch a pair of white butterflies dogfight, we receive a call from the veterinarian that Eileen’s dog, Charlie, who we sent positive energy to before writing this, that the sick dog Charlie is now the healthy dog Charlie. Eileen is visibly ecstatic to get this news. She mentions maybe our positive energy has worked after all. I don’t know for certain, but the knowing isn’t as important as the trying. So, here’s to Charlie and Shih Tzu’s around the globe, may your Lebanon bologna be sliced thickly and may the booda bone’s you so adore, bring you eternal, chewable bliss.
Title: Black Sabbath, White feather & the gray daze of Spaciousness (Part 2)
The Gilchrist Hospice is a study in paradoxes. Up a winding road you find, what appears to be the start of your stay at a picturesque country estate. However, this is where many come when it is clear that they are what are referred to as “end stage”. Gilchrist is named after a woman who donated 5 million dollars so that people could have a beautiful, comfortable, pain-free and dignified place for they and their families to spend their last chapter of, what we refer to as “reality”, on earth. Now, we’re all dying, some of us quicker, some of us slower, but dying all the same. The hospice could easily be called: “Heaven’s Hilton” or the “Epiphany Lodge”, so powerful are the forces at play inside its perimeter. When the transport ambulance gently lowered me to the sacred entranceway, I was greeted with familiar smiles and a garden room, which looked out onto the wonderful waterfall in the court. Having had two teeth pulled the same day, a virtual waterfall of vanilla pudding awaited me. During my up-coming five-day respite I would find out the sex of my unborn baby, be interviewed by NPR and have a religious experience at a birdcage.
(To be continued…)
Title: Black Sabbath, White feather & the gray daze of Spaciousness (Part 1)
The bill of particulars was as follows:
(1) Coughilator (think Roomba® for the lungs)
(1) Bi-pap breathing machine
(5) T-shirts/ assorted
(6) Shorts/ assorted
large condom catheters
(2) Rolls of Kodak 200 ASA color film
(10) Bottles of assorted pharmaceuticals
(1) 20 gig I-pod
(1) Fully loaded Pentax 35 mm camera
(1) Fully loaded 250 lb. Irish man
(1) Permobil electric wheelchair
(Total combined weight: 1/4 of a ton)
The ambulance drivers arrived at 4 pm. Coincidentally, their combined weight was also 1/4 of a ton. We had something in common already! Together, the half a ton of fun began to roll. Now, securely buckled and strapped in the back of the transport ambulance, it was time to upgrade my status from an object to a human. “Can we stop at Hooter’s on the way to the Hospice?” As so often happens when I speak, the unexpected noun in the sentence is mis-heard. Ever diligent to land my punch line, I went back and forth with the drivers until finally I had to spell out the word “Hooter’s”. Finally, the confused ambulance driver looked up from his notepad where he had, letter by letter, spelled out the word; finally he looked up with a mixture of shock and amusement. “Ha Ha! Not while we’re on duty! What kind of music do you like? Rock?” I nodded. Black Sabbath’s: “Iron Man” was turned up to 11, and the half ton of us collectively worshipped the devil as we made our way toward the Playboy Mansion for people with ALS: the Gilchrist Hospice.
Title: I Miss Getting Lost
I miss getting lost. I miss blending in. I miss being suspicious. I
miss being a drifter with a camera in a strange town. I miss walking
tough in a bad neighborhood, changing my gait and clutching my fist,
becoming John Wayne for three blocks. I miss getting away with it. I
miss sneaking in. I miss the infinite possibilities of Penn Station,
the notion of picking up and using instinct, inspiration and a new pair
of New Balance sneakers as a compass. I miss just making it. I miss
being on top, and all the illusions that accompany it. I miss you, the
crowd of bodies jostling for number one, the human race, the vantage
enjoyed only by the vertical bi-ped, waiting in line for a ham sandwich,
a bank check, a new passport. I miss feeling nervous and guilty about
cops, confident their x-ray eyes could see in my pants pocket. Oh, the
things I miss.
Title: The Lady I Love
The lady I love has four blue eyes. The lady I love has 12 Krispy Kreme
doughnuts. The lady I love has the only known copy of the world's tastiest
ham loaf recipe. The lady I love looks like a glowing silent film star.
The lady I love wakes up at all hours of the night to fix my throbbing
toothache. The lady I love loves me even though I am a pain in the ass
and have a uni-brow. The lady I love stays with me despite my disturbing
short films, especially that one with the logos and you know what. The
lady I love is a lava orchid, one that has miraculously blossomed in
the aftermath of life's volcano.
Title: Freeing My Inner Beyonce'
Did you know Stephen Hawking, Lou Gehrig and yes, even I, a 250-pound
Irish man, have collectively dropped it like it's hot? It is true. By
now you've read the finer points of having ALS, but I will share with
you a commonly well-kept secret about the ever perplexing, always entertaining,
and downright oddball disease. You may or may not know that ALS robs
you of your muscles. One way this manifests is through the gyration
of other muscle in question. So, when my thigh muscle began to wither,
for instance, it resembled a kielbasa in the electric chair. Well, not
exactly, but I just wanted to use kielbasa and electric chair in the
same sentence. What's actually happening has something to do with the
motor neurons dying, yadda, yadda, yadda.
So, back to freeing my inner Beyonce'. Riddle me this: What is the
largest muscle group in the human body? If your name is John Holmes,
zip it until I’m done with this paragraph. The largest muscle
in the human body is called the gluteus maximus. No, not the Roman emperor
of Booty-Down Town, but the portion of the body you're sitting on right
now. When an egocentric young actress asked legendary director Alfred
Hitchcock "What's my best side?” the portly auteur
famously replied," Your sitting on it, my dear”.
So when my motor neurons decided to call it quits, my tuckis began to behave in a most fascinating way. It took it upon itself to vibrate like an overstuffed washing machine, practically lifting me off the bed into the air! My white derriere finally had some rhythm! The hardware store could have hired me to mix paint, the oscillations were that impressive.
Now with my inner Beyonce' finally free, my booty shaking days are
coming to a close. One final thought: we might be able to end the war
over oil if we harness the untapped potential of all the booty shaking
that I and the other thousands of ALS sufferers have to offer. Not to
mention the impact this alternative energy source could have on global
warming. Imagine, that the source of the ozone hole, (methane) and the
cure for the ozone hole (booty shaking) might, in fact, originate from
the same source, the end.
Title: Thanks but No Skanks
Every Saturday, my Dad comes to visit me. Under his arm are three newspapers:
The New York Times, The New York Post and The Daily News. Being a recovering
CNN addict and living in a house where there is no cable T.V., I eagerly
devour the latest news about Paris Hilton's arrest. My Dad holds the
paper up in front of me so I can read. Today's headline is “"Thanks
but no skanks: TV Bigs". Dad and I laugh with each new page turned.
We eat Dunkin Donut Munchins and Dad gives me Red Bull as we read the
papers. I miss the Tri State and having Dad come on Saturday with Donuts
and the latest news on Paris Hilton does me good.
Title: Emotional Fugitive
I learned a lesson from an ant yesterday. I was feeling sorry for myself.
The movie, “March of the Penguins” was over, and I reclined
with my thoughts, all of which seemed to be really depressing. Nothing
like dead, frozen baby penguins to kick-start a good time! The issues
aren't really important to this story. They're the usual suspects for
a big oaf like me. You know, “Woe is me, I have ALS. Woe is me,
I can't move my arms.” Etc etc. Just as I was reaching the height
of my perseveration, I felt a tickle on my chin. Something was crawling
up my face. I should say… Me and Bugs, we've come to an understanding:
there're free to land on me, take leisurely strolls as they wish and
as long as I don't feel it, have a nibble now and again. This tickle,
now on my lips and heading for my nostrils, apparently had not gotten
the memo. Unable to use my arms, I used the next available muscle and
momentarily became Paraplegic Head banger Man. The ant, or spider, seemed
to know I was helpless and made a B-line for the dark, moist bed and
breakfast on my face. Pathetically, I tried blowing air out of my nose
in weak, little bursts. The ant wasn't impressed. With no muscle groups
left, I did the only thing a person can do in my position, I surrendered.
I surrendered to the speck on my face. And then, unexpectedly, I noticed
a shift in how I was feeling. The clouds parted. The ant re-routed its
daytrip to the scenic drive known as my eyebrow and I relaxed.
The ant taught me something. Sometimes when there's nothing you can
do, when things are beyond your control, when there's no immediate solution
to those things which ail you, the wisest choice is to simply surrender.
By surrendering you end the metaphorical war within and without. Luckily,
this war was only with an ant, who, to my knowledge is not residing
within me, although it might still be vacationing in my beard…
Title: Moon Unit O'Brien?
What it means to be a father. With the approach of Father's Day, a
warm feeling comes over me. I wonder, “Will anyone get me a Father's
Day card? Or maybe golf balls or some technicolor tie?” How totally
bizarre. My life keeps getting stranger and stranger. By stranger I
mean, more surprisingly wonderful. It's kind of cool suddenly having
a new holiday to celebrate. It's like a birthday, St. Patrick's Day
and New Year's Eve all in one!
I can recall always wanting to have a son. I always imagined what we
would do together. The things I would teach him and the tree houses
we would build together. If it's a boy Laura thought of the name Sean
Patrick. I always thought I would name my children really eclectic names
like Frank Zappa did: Moon Unit Zappa or Dweezle Zappa.
Thank G-d for Laura, right? I guess a kid with the name: Moon Unit O'Brien
might spend a lot of time in the principal's office, then therapy and
eventually a lot of Star Trek conventions.
Trekkie, hippy, statesman, architect, inventor, teacher, DJ, astronaut, astronaut DJ, hippy statesman, I have high hopes for this kid. When I get my robotic arms I will hug him and wipe the tears from his chubby cheeks. Until then, though, I will be a warm cradle for him or her, the perfect solution for a sleepy child.
So, that is my soliloquy on being a father. I really want to be alive
as long as possible for this baby. I look at my nephews and nieces and
gauge whether I will be around by the time my child is their age. I
don't know anything for certain. Maybe we can cryogenically freeze my
brain? Maybe there will be a cure? All these questions can, if you let
them, drive you batty. So, I live for today. That's all any of us can
hope to do. That's all we really have anyway. The now. And the now is
wonderful, full of ultrasounds, technicolor ties and imagination.
Happy Father's Day to fathers, fathers-to-be, and all single mothers
doing both jobs.
Title: Whisky Cake
Last night I attendeed a Gaelic wedding party. The bride, Tia,
and the groom, Bruce, are the real deal. I ate their salami, whisky
cake and sampled some Irish moonshine (but don't tell anyone). With
Venus high above the torch-lit outdoor celebration, the sound of champagne
corks popping echoed into the wilderness.
No half million dollar corny, gaudy wedding planners need apply.
One part that touched me was that instead of a gift table, Bruce's
sister Susan and Tia printed a flier that directed the party attendees
to donate to my foundation instead of giving them wedding gifts. Sometimes,
when you aren't really feeling so great, the universe pats you oin the
bacvk and tells you "Don't worry, Patrick, we haven't forgotten about
you. Have some whisky cake and keep working on your film."
The end of small talk, thank G-d. The end of doodling – I’ll miss you, waves, flowers, spirals. The end of making coffee on my own, the spilled, black granules on the countertop. Farewell to nose picking, truly the sport of young men everywhere. Arrivederci to the other young men’s sport which shall remain unnamed. Sayanara sneaker laces, I will remember your double knots fondly. Adios to the fine art of unfastening a woman’s bra with one hand in the dark, in the car and upside down.
And here's to you: plastic shirt buttons, impossible winter coat zippers,
and stubborn button fly jeans. Auf wiedersehen thumb wresting, secret
handshakes, and pinkie swears. Asta la vista air guitar, pretending
I could dance alone in my apartment, impossible Led Zeppelin drum beats
with No. 2 pencils. I’m sorry velvet, corduroy and lace. I took
you for granted for far too long. I think of you often, imperfect brick
wall, my fingertips tracing your turbulent past, like some form of abstract
Braille. Alas, farewell ye gang signs, mighty middle fingers and gentle
To all the Willie Nelson records I tried to mix with hip-hop beats, I offer a truce; I’ve ruined your genres long enough and embarrassed my D.J. friends for the last time. Bon voyage beer, Dunkin Donut turbo ices and burning hot Bloody Marys. I shall guzzle you no more. To the small things, the threading of the needle, the plucking of a nose hair, the dotting of all those ‘i’s . . . I won’t forget you.
And to the first kick my baby gives against his mother’s stomach, I will not be able to reach out on my own to feel your mysterious Morse code. But I will lean forward with all my strength and press my cheek against your mother’s stomach, and that will make up for all the afore-mentioned goodbyes.
Title: Uncle Unintelligible
“Lets talk about something Uncle Patrick… what should we talk about?” “Shapes.” I said. The brown-eyed child looked back at me quizzically. “What did you say ??” I enunciated more clearly. “SHAPES.” He tilted his head. “SHEEP?” I shook my head and tried again. “SHAPES!” Finally maybe he had understood… “Ships?” he inquired. I considered that [ships] would probably last longer conversation-wise and yield greater mental imagery with a 4 and a half-year-old However, now I was determined to persevere. “Shapes; circles, squares, triangles…” He smiled. “I dunno what you’re saying but it sure is funny. Lets talk about the zoo. What’s your favorite animal?” “Bats.” I said. And, well… you know the rest.
It’s a rainy Sunday morning and I woke up on the wrong side of the bed. It’s 11:11 A.M. and I’m just starting to come around. They say you can make a wish when you look at the clock and it’s 11:11. I am not sure I believe in wishes anymore. I’m not sure why I feel so blue this morning, maybe it’s the drizzle, persistent and casting a fifty percent gray over the day. Lately, I have been listening to an audiobook by a man named Eckhardt Tolle. He has helped me reshape the way I think about my emotions and human consciousness on the whole. It had been a few days since I last listened to the recording and I guess I needed to listen to it again to remember exactly what it was that had so profoundly affected the way I saw the world around me. Here is a link to the audiobook: http://www.audible.com/adbl/site/products/ProductDetail.jsp?productID=SP_TRUE_000169&BV_UseBVCookie=Yes
In a box, under my desk, is my new voice. It uses words like gnarly, gnash, gleen, keen and other words I always forget to use. I will control these words and other windows software by using my eye to move a curser around the screen. It's Friday morning and I woke up before the sunrise with those first two sentences in my head. I like waking up early. I like to watch the way the light moves and transforms the same tree over and over again each day. Different moods. I waited in bed to write those words for 1/2 hour until my loving family was awake and ready to help me up. Sitting beside me are two peanut butter, jelly, and bacon sandwiches. They appear like a gift from the Gods with a 1/2 liter of black sweetened coffee which will be first sipped and then the majority of which will be poured into my stomach as if charging a giant energizer bunny. My niece has come up with a new nickname for me: "HAMMY". Hammy loves ham and drinks ham - juice. It is my favorite nickname so far. My PBJ-and-B has officially derailed my train of thought. They beckon to me as does the coffee, so Hammy is gonna go now and greet the day.
Wishing you and yours a peaceful and prolific New Year.
Title: The Bubble
Today is Sunday, Dec 3, 2006. It is a sunny, chilly day here in Silver Spring, Maryland. My nephew, who is a smart, athletic, imaginative kid, is here in my room, helping me write this. I would write it myself, but unfortunately, I am down to one hand. Actually, one finger, my middle one, so it's not as easy to type as quickly as the thoughts come to me, but at least I can still flip the bird if I need too. Today, in Massachusetts, there is a funeral for a great man, Stephen Heywood. You might not know who he is, but to me, he is a role model. He and his brothers began an organization called ALS TDF (ALS Therapy Development Foundation). You may have heard of the film that was made about him called, "So Much, So Fast". It was at the Sundance Film Festival, and it was also in theaters recently. When I heard about his death, I was surprised at how shocked I was. I cried for a few minutes. I guess there is a part of me that thinks people like Stephen can't die. Crazy logic I know, to think that someone with ALS can't die, but when you have ALS you live in a bubble sometimes. And, I guess, to protect yourself from things, you build illusions around you. Stephen's death is still hard to understand. I thought writing about it, would clarify why it surprised me. I guess, in a way, it has. But, it doesn't make it any easier.