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I look at our whiteboard countdown to our Ohio Trip and the numbers keep shrinking. Seven more days until I get to show my family the sleepy little town where I came from. My carefully guarded excitement is definitely overshadowed by my nervous anticipation. I know this feeling, it’s been here before. The whiteboard, which now hangs in our daughter’s nursery, was used to countdown my fast approaching due date just months ago. It’s that same swirl of butterflies chanting “How is this going to work?”.
I’m a bit of a worrier. I take comfort in having a carefully thought out plan. Before I met the man of my dreams and started a family, I travelled often. I would map out my outfit for each day or which hair-styling utensils I had room for. My planning ahead was to make sure all of my toiletries were 3 ounces or less, that I charged my toothbrush and I have shoes to coordinate with each outfit. The worst thing that could happen is I wouldn’t have a pair of brown sandals! Now that there are three of us, I find that priority shifting. Three times the joy, but three times the worry. I now have a page and a half of items dedicated just to keeping my husband alive. I have half a page of items to keep my daughter comfortable, and at the bottom of her list I have in chicken scratch three things for me: Clothes, Shoes, Toothbrush.
As for Kevin’s list….we shipped a box of supplies out early to my grandmother where we will be staying. 28 pounds worth! Many things that we won’t need until we get to Ohio. Nearly seven years into his ALS diagnosis, our day to day life is always unpredictable. He has 12 bits and pieces connecting him from his vent to his trach. In my worried little mind I have played out the scenario of what I would do in the event any of them were to break. Better take 2 of each! There are six separate chargers for each piece of equipment, a spare ventilator, a spare suction machine, a cough assist, his assortment of medications, pill crushers, feeding tubes and shakers. We are bringing a surplus of “Liquid Hope” (his MRE’s) for when I decide to tell him Ohio has never heard of naked juice, or fresh avocado. There is a spare Trach in his size and one size smaller incase the emergency tracheotomy I perform in my worst case scenario doesn’t go as planned. There is an AMBU bag in the rare case I mess up both of these attempts. Plus, super glue (I’ve used it before), maybe some duct tape, and definitely a pocket knife. He has dubbed me his “MacGyver”, a title that I wear proudly.
We took our first road trip to Miami with Elliott when she was just six weeks old. We were going to see the Cubs season opener. Crazy, I know, but I couldn’t say no to the biggest Cubs fan in the world after he had been such a supportive partner throughout our pregnancy. During our commute, the connector to our oxygen condenser broke in transit. I asked Kevin and his caregiver to pick up some super glue at the store when they were out. Later, after being scolded for not sharing with him what had happened, I explained that I didn’t want him to worry. I was then gifted the greatest thing anyone has ever said to me. “I never worry when you are around.” Believe me baby, I worry enough for all of us!
The list of elements of daily living that ALS tenaciously takes away is never-ending. There’s the big stuff like walking or use of your arms, the deterioration of your voice and ultimately the ability to breathe. Let’s call that the big, ugly, hairy, nasty stuff.
But below that catastrophic category is all of this slivers of loss that never find their way into ALS brochures or discussions with doctors. One of my biggest casualties is my quick whit and sense of humor. Don’t get me wrong, I’m still funny as hell, I’m just playing to a much smaller room.
I’ve been funny my entire life. A trait that I don’t need ancestry.com to figure out came directly from my mom. I’m still able to talk, but most of words are difficult to understand. That’s what makes my humor being heavily locked up so frustrating.
Being funny is something you either have or are slightly pissed that you don’t have…As my voice started to weaken I lost the ability change my intonation, diction and imitation. For anyone who knows comedy these essential tools, the raw basics.
I never wanted to be an actor or stand up comedian, although I did try both for a very short period while living in NYC. I did however want to be a TV host. I thrived at Improv comedy, another NYC chapter and thought what a great way to make a living, get paid to be me!
You can see my demo roll below.
As the strength of my voice has weakened so has my comedic timing! Again, an essential element of the comedic handbook is timing and delivery. It’s brutal being a part of a conversation, and having a gold nugget that either comes out too late or too quietly. This the same reason I know refuse to watch Jeopardy with my family. I’m way too competitive, I can’t get the damn answers out loud or fast enough.
One of my favorite comedy escapes is Jerry Seinfeld’s online show, Comedians in Cars Getting Coffee. It’s this insanely honest look at funny people talking about being funny. I love quick wit, the stories of meager beginnings, and the craft. I guess just because I’m out of the game doesn’t mean I can’t watch the game.
Before last Christmas, I would look around any room full of people and notice one thing they all had in common. And I mean from my living room to a crowded coffee shop. Everyone was on their phone! IPhones, Androids, it didn’t matter, people’s faces were lazer locked on their devices.
Now, I’m not judging because pre ALS (and two working hands) I know that I was no different from those screen junkies. I was an email monster, always keeping a pristine inbox. This was before Instagram became the ultimate way to pass the time. Giving hearts to every sunset and sushi roll ever posted! SnapChat, no, there was no such thing.
I would find myself irritated and jealous anyone would see anyone casually pick up their phone and start swiping away. Fully knowing that they had no idea how many muscle fibers are firing away to make that selfie possible. I would be there, in my chair, my arms like Jagger on full display but unable to get my fix!
Well, thanks to the best Christmas present ever, I’m a junkie again! Santa, by way of Elizabeth, Cullen, and Vivian (apparently old St. Nick is outsourcing everything these days) I received a Microsoft Surface Pro 3 and a Tobii EyeMobile that I could easily attach to my power chair. I prefer “power chair” to wheelchair. After all, FDR was in a wheelchair, my ride weights 250 lbs and can charge two different devices, including my tablet.
I can talk, text, tweet all from the comfort of my power chair with my freaking eyes! Hell, I can even adjust the thermostat and change the channel on the TV thanks to an app called Control 4. So needless to say I’m back to my old ways, a digital junkie.
20 – It takes approximately 20 minutes for me to get out of bed every morning. I know what you’re thinking, “Me too, after I hit snooze a couple of times.” But it literally takes 20 minutes from the time my caregiver walks into the room to the point where I am vertical, in my wheelchair. After not moving a single muscle for 9 hours it takes some stretching to get the blood flowing. Then it’s time to take off my AVAP (a machine, similar to a CPAP) mask, that I have to wear when I sleep to help me breathe. Once that mask is off, my eyes and face get a warm wash cloth wipe to get rid of all the nighttime crusties. Sexy, I know! Then, finally, a scoop and a pivot, and a hoist, and a plop into the chair, and I am up.
1 – I am still able to drink, so I NEED at least one cup of coffee every morning. I’m a Dunkin’ Donuts man.
2 – It’s no coincidence that number two follows that number 1 morning cup of Joe. It takes two people to make my morning constitutional possible. One person to help me stand and pivot, while the other pulls down my pants.
500,000 – A Life Story Foundation has raised over $500,000 since it’s inception, for research and awareness for ALS.
45 – This one is an estimate. I use a suction machine,similar to the one at the dentist office, only it’s relatively small but obnoxiously loud. I need suction 45 times throughout the day. It’s not that I produce so much excess saliva, it’s that I’m unable to involuntarily swallow as much as the average person.
10,000 – This is my yearly out of pocket cost for prescriptions and respiratory devices after insurance. In addition to the before-mentioned AVAP and suction machine, I have a cough assist machine. As you might have guessed, it helps me cough by forcing air into AND out of my lungs.
5 – I used to be borderline obsessed with food. Not in an unhealthy, obese kind of way, I simply loved food and took as much joy out of a perfectly cooked, greasy cheese burger as I did a 10 course tasting at a NYC restaurant. But now I eat about 5 smoothies (the medical community calls them feeds, but I call them smoothies… After all, I’m not farm animal!) through my feeding tube.
162 – This has little to do with ALS, but I love watching the Chicago Cubs play, and they play 162 games. So, that’s nice.
7 – ALS can be an unruly, isolating disease. I could easily see not wanting to ever leave the house for every reason from physical challenges to emotional stresses, However, that’s not me. Not only do I enjoy getting out of the house, I use my Surface Pro 3, equipped with Tobii technology and controlled with my eyes, to text at least 7 people a day. It feels great being able to touch base with friends and family and maintain the relationships and get beyond what I see on Facebook and Instagram.
3 – Vivian, the most kind and loving 10 year old on the planet, nicknamed Fruit Cup for the massive amounts of fruits and veggies she eats daily. Cullen, the walking music and sports almanac who has reached 15 years old and genuinely still likes hanging out with me and his mom. Elizabeth, although she’s Betsy to me. She’s all heart and definitely has mine. She is the only person who can physically make me laugh out loud. The three of them are why all the other numbers don’t matter.
The pope, the president and I walk into a bar. Ok, it didn’t go exactly like that but you get the idea. A couple weeks ago we had our foundation’s fourth annual culinary spectacular at Hearth restaurant in New York City. We thought we had the perfect date picked out, after Labor Day but before Fall was in full swing. Unfortunately, we failed to cross check the calendars of two of the most powerful men in the world!
Despite the pope leaving the city and the president arriving to address the United Nations, our event was a tremendous success, despite nearly every other street being blocked off and every hotel room booked. It wasn’t easy — traveling with ALS never is — but thanks to the best team in the world, we made it work.
Our trip started Sunday morning. My girlfriend Elizabeth was double checking every item and making sure our suitcases were perfectly packed. When I was younger and not living with ALS, packing was always a last minute, “I’ll figure it out when I get there” part of the trip. Hell, I once went to Europe, by myself no less, without a single accommodation planned! Boy has that changed.
Due to hotel rates exceeding $400 a night and the general high cost of NYC, this would be a rapid trip to and from the Big Apple. Traveling with ALS requires packing as if we were leaving for a week long getaway. Elizabeth perfectly packs both of our clothes into one suitcase with no issue. It’s all the other crap for lack of a better word that takes so much time and space.
Our second suitcase is full of devices and nutritional/medical materials. I sleep with an AVAP, which is similar to a CPAP. Also taking up space is the suction machine I use throughout the day to get rid of excess saliva. It’s just like what the dentist uses except this particular model looks like it is from WWII and sounds like it’s from a Harley Davidson factory.
Once the machines are secured, it’s time for the good stuff. At least that’s what homeland security thinks. I imagine our bag sets off every red alert possible with its small machinery, all of which has hoses and wires wrapped around it AND a number of different size containers full of white powdery substances. We probably look like Pablo Escobar via x-ray, but we are far less notorious. Those powders are simply protein shakes for my feeding tube.
Once at the airport, the real fun begins. As you can imagine a direct flight from Sarasota to NYC has it’s fair share of wheelchair passengers all fighting to board first. Thankfully my set of wheels usually gets the right of way. I take my chair down the jet way and must transfer into an aisle chair. If you’re unfamiliar with this apparatus, it’s the ice-cold metal stroller-looking machine right outside the jet door.
I am still able to stand and pivot which allows me to get from my power chair to the aisle chair with Elizabeth’s help and the watchful eyes of usually 3-5 airport/airline employees. Once seated in the world’s skinniest wheelchair, an onslaught of straps seem to come from every direction. Think 50 Shade of Grey but far less sexy.
The chair and my tightly secured body are then rolled onto the plane and down the aisle. Thankfully this is normally a short trip to the bulkhead, as I typically fly Southwest. Unfortunately, Elizabeth and I were a few rows back. This makes a huge difference when it comes to transferring from the aisle chair into my aisle seat. As Elizabeth directs the team of helpers, I look like a deranged killer, only missing the mask and a side of fava beans, my mom is outside the plane preparing my power chair to go into the belly of the plane.
We were first on and able to successfully get to our seats with smiles on our faces. Elizabeth may have set the record for the earliest bloody mary order after take off, but that only helped keep the smiles.
Being a child of the ‘80s and growing up in Florida, when it came to baseball there was really no other team to root for other than the Chicago Cubs. Before the Miami (formerly the Florida) Marlins and way before 500 cable channels to choose from, there was good old WGN. If you’re not familiar with the network, when they weren’t showing Cubs games it was endless reruns of Family Matters and Full House.
I remember coming home from school and my grandma, affectionately called Nonnie would always have the Cubs game on TV. She was a tiny woman in stature, but a huge fan of her beloved Cubbies. I can still see her crooked arthritic fingers combing the sports section checking the box scores. It remains fairly obvious at this point, between my bloodlines and a lack of choices, I would forever be a Cubs fan for life.
Everyone, even non sports fans seem to know the Cubs as loveable losers. It is an automatic reaction after I say “I’m a Cubs fan”, an instant “sorry to hear that” kind of look. Similar yet far less severe than when I tell people I have ALS.
This year the Cubs and my ALS have had a lot to do with each other. Baseball is an eternity of a season (ask my girlfriend Elizabeth who has uttered “They play again tonight”) that lasts a 162 games in a 188 days. It is a true war of attrition. A lot like ALS.
The Cubs have played over a 150 games at this point in the season. And thanks to MLB.TV an app that allows me to watch every out of market game I have probably watched at least 125! Even typing that seems ridiculous. But this year’s Cubs are different, the entire organization is electric and for the first time in a long time, they are winning!
For those of you squawking about a person watching that much TV, think of it like the greatest, nail-biting, thrilling drama on Netflix. The team I watch ever so diligently has a phenomenal cast that will pull you in instantly. There is the white haired, long time baseball guru/life aficionado manager Joe Madden. The lumberjack Cy Young contender Jake Arrieta, the pretty boy phenom Kris Bryant, and the all around good guy Anthony Rizzo.
They are a team of talented misfits that are not supposed to win for another couple of years. But they are defying every outside opinion by making a push to the playoffs. Watching these games, listening to the same commentators Len and J.D. six days a week it’s hard not to feel involved and almost a part of something special.
See, when it comes to watching sports and especially my Chicago Cubs, my physical limitations aren’t that much of a factor. I can sit (as I do all the time) and watch a thrilling walk off victory just like any other 34 year old man. I even got to Wrigley for a game this summer. It didn’t matter that I was in a power chair or unable to hold my own beer – I was watching my favorite team at my favorite place with my favorite people. (It did help that the Cubs swept the Giants that day) Thank you to the Chicago Cubs for everything you accomplished this year, it means a lot. And to Elizabeth, we’re going to the playoffs!
I have always been a movie guy. As long as I can remember, the entire movie-going experience has been a source of excitement and escapism. When I lived in New York I had a Saturday morning ritual: 1 medium coffee – milk and sugar and 1 chocolate glazed donut from a little known bakery on 2nd Avenue called Dunkin’ Donuts, followed by a solo trip to the movies. In a city where your office, your commute, and even your apartment are crowded, the movie theater offered a 2.5 hour vacation that was a hell of a lot cheaper than The Hamptons.
These days I take fewer trips to the movies, but don’t we all? It is so easy now to see any movie you want from the comfort of your own couch. Everyone has Netflix/Red Box/Amazon Instant/Hulu/OnDemand/Etc. but we lose something without the ceremony of the theater. The tearing of the ticket stub and buttery popcorn…the previews! God, I LOVE the second a preview ends. We immediately turn to our movie-going partner and give an instant thumbs up/thumbs down critique.
As temperatures rise throughout the country every July and August, millions flock to the ice cold theater to catch the summer’s biggest blockbusters. A staple of any summer movie list includes at least a few sequels. We love sequels. We already know the characters and we have a vested interest in their future.
Last year’s Ice Bucket Challenge became a worldwide box office smash. It was The Blair Witch Project of the charitable giving world (The Blair Witch Project was made for approximately $60,000 and grossed almost $250 million). We may never surpass last year’s financial success, but that doesn’t mean we are not going to try our best! After all, the sequel is never quite as good as the original…with the exception of The Godfather Part II.
I’ll be honest, when our team at A Life Story Foundation started discussing this year’s Ice Bucket Challenge, we had a couple naysayers. “It will never happen” and “It won’t be cool again” floated around the conference table until we were inspired by the ‘Summer of Sequels’. The more we talked, the more we realized that some of our favorite movies of all-time were sequels. And thus was born, Ice Bucket Challenge II – The Sequel.
Last weekend was the third annual Running 4 Rob 5k event to support our family. This all started in 2013 when Melissa wanted to get a group of friends to participate in the Team Gleason Virtual 5k and run together at Bluff Point in Groton, CT. Our friends did sign up for the Team Gleason race but also came together to organize a race to benefit us at the same time. This has been a yearly event since.
Our friends work every year to organize everything from the scheduling to online sign up to tee shirts, etc… The night before the run they have an in person registration at a local park with dinners and baked treats to purchase and enjoy while listening to some background music. This is always so much fun for me to get out and see so many good people and it always lifts my spirits.
The race day was awesome too. This year we had 286 registered runners and walkers! There was the threat of rain but the weather turned out beautiful. We saw so many friends, aquaintances and even some people that we met for the first time that day. There was a bridal party that heard of the run and ran together too.
We are constantly reminded of what awesome friends we have to go to the effort to pull this off every year. Not only do these events help us so tremendously but also raises our spirits so much. We are so grateful for the support from our friends and community!
After living in New York City for almost 7 years, I feel like I am very familiar with most neighborhoods and certainly the many iconic buildings throughout Manhattan…or so I thought.
I recently visited the city with my girlfriend, Elizabeth, and her 14-year-old son, Cullen. Elizabeth and I have been there before, but this was Cullen’s maiden voyage to the Big Apple. We have done a number of NYC fundraising events over the past few years; which has always led to a few chaotic days of friends, long lunches, late nights and lots of last minute challenges. Even though this trip was for our Kentucky Derby Classic, we promised ourselves and Cullen this trip would be different. We would finally act like those slow-moving, eye-gazing, intersection-blocking tourists I used to speed past on my way to work.
We were on a mission. Thankfully, Cullen is the world’s coolest 14 year old and is super tech savvy as well as quite the history buff. Between his energy, a healthy dose of caffeine, and the best app ever (WheelsOnWheels) we were on our way to the 9/11 Memorial.
Being fortunate enough to visit the city a few times a year, I have noticed its amazing ability to constantly transform and evolve. For instance, in 2010 when I left NYC, the site of the World Trade Center was known as Ground Zero and now it’s an incredible, breathe-taking memorial.
We had bright blue skies and nowhere else to be. Elizabeth and I are not what I would call avid sightseers so we simply let Cullen lead the way. There is still a tremendous amount of construction surrounding the site. I think that is what made the first sight of the memorial that much more impactful. There are two massive square pools that must go 50 feet below street level with waterfalls cascading the inner walls. As we walked (and rolled) around each of the pools, the names of those who lost their lives were engraved alphabetically and by the floor they worked. I thought this was such a simple yet thoughtful way to give each person an origin rather than a resting place.
After the pools, we made our way to the 9/11 Memorial Museum; which is also located directly in the footprint of the towers that once stood above Manhattan’s skyline. We pulled the “ALS Card” to bypass the long line outside and made our way into the best museum I’ve ever seen.
As is to be expected, the air and mood throughout the entire space was heavy. The lighting was dim and, because the museum is underground, the usual noise of NYC cannot be heard. This lack of sensory stimulus really allows visitors to be 100% present. The artifacts, photographs and videos are all on display, giving visitors an intimate look into the horrible morning. One of the most emotional exhibits had the actual voicemails passengers aboard the hijacked planes left their loved ones.
Leaving the museum, coming back up to street level and having the sun immediately warm our faces was almost overwhelming. I was, and still am, so impressed that the architects and minds behind this museum were able to create such a beautiful, insightful, and honest place of remembrance within the actual site of such a tragedy. I am so thankful Cullen turned me into one of those slow-moving, eye-gazing, intersection-blocking tourists. It truly was one of my favorite New York days.