_Messages From Patrick

Title:  Date: 10/08/08Apple i-Phone™…. …………. why do you mock me?That is all. Carry on. Title: 3 months Date: 05/23/08 "In the fullness of Spring…" I heard Barack Obama say the other day in one of his wonderful speeches. That was news to me, I thought it was still around the end of Winter. The mind plays funny tricks on you when you've been in bed nearly 3 months. I have plenty of reasons why I was in bed so long. I'd tell myself, "Your wheel chair was broken," or, "You've made a lot of progress editing the movie." But 3 months is 1/4 of a year and I'm supposedly dying, so shouldn't I be out soaking in the sunlight or feeling the breeze in my now longish hair? "The fullness of Spring." Something about that line hit me where it hurt. What was this "fullness of Spring" he spoke of, and how could I be part of it? I was missing out on something, like I had been on a space station watching the Earth from afar, through a window. To my horror, this was not far from the truth. The NPR News report said the following: The NASA bed-rest program simulated the effects of weightlessness on astronauts by keeping test subjects in bed for 70 days. The radio hosts made jokes about the story, but I listened with a mix of sadness and I don't know what. Was ALS like being on a space station? The atrophy of the muscles, The other-worldliness, the nutrient-rich liquid supplements that were now my "food." I didn't know, but I woke up one morning and a voice inside told me, "You're going outside today." You'll probably, hopefully, never know how it feels to go outside after being inside for so long. But, I can offer this tangible analogy. For those of you who have jumped on the high definition bandwagon, I imagine it's like watching your new high-def TV for the first time, but like times 40 or something. The leaves against the blue sky pulse like I don't know what. I looked at the tree just off my back deck, then up slowly, past where my window had been cutting it off, and to my surprise, the tree kept going all the way up. The space above my head was really amazing, no more ceiling. Tomorrow, May 24th 2008, is the 3 year anniversary of my diagnosis with Lou Gehrig's Disease. I'll be outside, with my baby boy and his mom, back on Earth, in the fullness of Spring. Title: Sleep Walking Date: 01/31/08 Title: Milk-drunk Date: 12/11/07 Milk-drunk, my son Sean Patrick lays curled up on my chest, in this, the 23rd Philadelphia dawn in the opening season of our lives together, here in the city of brotherly love. We're drinking buddies, I guess you could say. ("drinking Buddhists", my ever-helpful word prediction program suggests) OK then: Drinking Buddhists, we're blessed by the bewitching blend of milk and honey. I’m 2 bowls of Life cereal deep, a virtual vitamin D zombie, while the inebriated orangutan on my chest looks like a miniature version of W.C. Fields. It’s kind of amazing when you realize Laura and I didn't know each other this time last year. It's also so strange, that this sedated, 7-pound rascal was, 9 months ago, a lima bean. Then, according to the baby book, he became a raspberry, a shrimp, etc. etc. I admit I lost track of which appetizer my unborn child had become. Mostly because I really like jumbo shrimp and my imagination kept serving up unfortunate imagery. Presumably he went on to become a chicken nugget, a pop tart, a McRib and a corn dog before becoming the full enchilada we know and love today. Miraculous Mexican entrees aside, the spellbinding conscious glint behind our enchanted enchilada’s little blue eyes, a 3-way mirror of present, future, past, reflecting ourselves back at us, is outside the realm of words. It’s like being a baby again, dreaming forward or something, while being in the future-present, your child’s potential trajectories full of incalculable possibilities. Time slips on itself a little, like piglets in baby oil, when you find yourself exchanging smiles with yourself. Eloquence aside: Being a disabled father does kinda suck hard at times. I don't have the lung-power or linguistic agility left to sing to him. Instead I hum in 2 syllable increments. My coughing fits and leg spasms actually come in handy as they rock Sean to sleep. So, although I sometimes yearn to swoop up my son with arms long gone, I'm thrilled at the one job I can perform: the human crib. Version 1.0 of the human crib comes installed with two fully adjustable baby nooks, (arms). These multi-purpose devices are also handy for stabilizing your infant when he is on the adjoining changing table, (chest), which is conveniently adjacent to the dirty diaper detector, (nostrils). All surfaces are covered with a temperature controlled layer of NASA certified material, (fat), which is maintained via a super scientific, top-secret formula, (banana pudding & Hershey Symphony bars). We accept Visa, Mastercard and Life Cereal. Mmmm … Life cereal … that sounds good. I should stop rambling and have another round with junior. Some milk martinis and shots of half and half maybe. Next thing you know we’re chugging formula with diapers on our heads, giving each other hickies with the breast pumps. And that’s just me and Laura, who knows what the baby’s doing. :) Title: 33 Date: 10/06/07 Yesterday a man turned 33 years old. Yesterday a baby in his mother's stomach also turned 33 (weeks). The man like the baby spent his special day relaxing on something soft. The man's muscles are shrinking, while the baby's are growing. It's the Yin and the Yang of 33. Title: A Farewell To Arms Date: 09/07/07 I thought about having a funeral for my arms. We would have two caskets made special. They would fit my forearms. What do you call it when you have a funeral where the casket is open? Open face? I think I’m confusing it with a sandwich. Eileen tells me it’s called “an open casket funeral”. Anyway, so there would be two small caskets, I guess about the size from my elbow to my middle finger. What is that, about a foot and a half? The caskets should be white. The little flip top would be open, with the two little hands popping out. Palms up or palms down? I’m partial to palms up. I guess the real question we’re asking is which side of the hand is the “face” located on? You wouldn’t want to go to an open casket funeral and see your favorite Uncle face down, would you? Well, whatever, either way. It would be logistically easier to cut the arms off, but since my arms died before the rest of me, there is a whole “comfort issue” to deal with. Like, it it’s palms down, I could hide under a table or something like that. If it’s palms up, I would have to be above the table, you know? Well, I’ve hit a roadblock with this idea. Also my fingers are still twitching as we write this as if to protest the whole idea. So, out of respect for my digits, I’ll abandon this idea for now. Peace. Title: The foot doctor Date: 09/05/07 The foot doctor appeared at the foot of my bed, where my feet were. He made house calls, which was good, because my right big toe, given the charming nickname of “Igor”, looked like a dog had been using it as a chew toy and then abandoned it for something more appetizing like a dead raccoon. Red flags should have gone up when he prepared his sanitary operating room: a single paper towel under my right foot. Next, his operating theatre expertly prepared under the strict standards of his Alma Mater, the Tijuana Traveling Doctor on a Donkey Graduate School I heard what sounded like a door to door salesman laying out a Ginzu Knife cutlery collection. I had always wanted to be in a Civil War Re-enactment, just not in the amputee tent. I could almost hear the hacksaw being sharpened, the muffled cries of the injured, biting down on a piece of wood, their only anesthesia a jug of blueberry moonshine. Circling above in the amputee tent, err—my bedroom, there was even a fly, which I assume had followed the scent of the hacksaws, scalpels and other freakishly bizarre instruments of terror, which I nervously eyed from my vantage point. “So, what exactly are we doing here today,” I asked, with a forced confidence. I really didn’t want to know, but I nodded as he told me my toe had a fungus which was causing the nail to grow into the skin; hence, the pain. I concurred with his plan to remove only part of the nail, hoping my visible trust in him would motivate him to not improvise with my little piggies, which I hoped would be going “wee wee wee all the way home.” After all, this man who was holding the scalpel at the foot of my bed, didn’t look too thrilled. Maybe my four and a half year old nephew commenting on his bald head had left him in a “cutty” mood, or maybe it was my protective physician/sister, who “firmly” advised the now balding, agitated graduate of Tijuana’s Class of ’79, to use a more advanced technique than he was going to. I don’t know, but I thought smiling and nodding would help him regain his lost confidence. I didn’t want him going “Zorro” on me. As it turned out, it was one of those things where your imagination is your worst enemy. The procedure was over pretty quickly and didn’t hurt at all. My toe looks like “Igor” still, but now with a facelift. A new podiatrist is coming next week. I can’t wait. Title: 1 beer @ a time Date: 08/02/07 The clouds are parting like the opening to “The Simpsons”. After a marathon of being indoors for three days straight, coordinating logistics for the DVD Party on August 13th, I’m finally outside. I told Eileen “grab the yellow notebook and meet me under the tree”, as if making a get-away plan from the computer, which I’m sure, is full of emails, responsibilities and other “work”. Right now I am soaking in a feeling I haven’t had all week: EXCITEMENT. With a bulk of the major hurdles of planning a party under control: the booking of the movie theater, the bar, the DJ, the t-shirts ordered, the invites sent, the flyers designed, I can finally sit under this tree and feel excited. After all, it’s been a year since I’ve seen many of my Amigos at the party we had in Asbury Park. I’m excited to see everyone, including: the heavily tattooed art director, who as a kid knew Bukowski, and his beautiful, camera-phobic fiancée. The party planner extraordinaire whose little black dress raised more awareness for ALS than the films at last year’s benefit. The super-talented Renaissance man who sweats vinyl and celluloid. My directing mentor who knows the secret language of speaking to actors, one which I never fully mastered… (That’s why I’m making documentaries now) The fellow subversive with an MBA who took me camping when I could barely walk from ALS, and who, along with his wife, has been chanting and meditating for me since the get-go. The artist and connoisseur of french cuisine and her husband, also an artist and connoisseur of meatball subs. The patron of the Arts, mayor of Sayreville, my Dad and part-time film producer. “Double-camera Donna” known for her amazing digital camera party pictures and her smile, which has the power of a million stars. I feel lucky to know all of these amazing souls and inspired at the idea that there are many more out there who I will meet along the way. Having ALS gives us a reason to have a party; that’s the beautiful thing that brings us all together. For one night we celebrate each other. Our common goal is to make some kind of difference, one beer at a time. ;) Title: ALS Career Day Date: 08/01/07 After the movie is in theaters, how will I spend my time? I went down to the local job fair, fed my details into the computer, and after a few minutes the printer spit out this list: 1. Dead guy in the movies 2. Nude still life model for college art classes 3. Paralyzed, sexy hunk in the hospital on "Days of Our Lives" 4. Part-time Pool toy 5. “Real Doll©” 6. Dinghy 7. Staring contest world champion 8. Broadway star: “Weekend at Bernies: The Musical”
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