60 Minutes, ADA, advocacy, Anderson Cooper, CW-X tights, disease, gastroparesis, GU Gel, Icebreaker clothing, Leary Firefighters Foundation, Luke, Matt Lauer, Meredith Vieira, MS, New York City, Oprah, Performance Gatorade, Power Bar, service dog, Team LFF, training, Xanax
I couldn’t sleep the night before. Insomnia & related sleep disorders are part and parcel of MS, but I’ve also got this kid before Christmas morning anxiety thing. Forget about sleep at the times when it matters most. The night before summer camp, the first day of school or a first date, a test or presentation, an audition, opening night, the day my story or poem gets workshopped, the deadline to hand in a review or manuscript or someone else’s that I’ve copy edited or feedbacked, moving day, travel day, defend the traffic ticket day, pretty much anything significant. Good or bad important? I’m not sleeping the night before, that’s just my life.
So I lay there in the too-firm hotel bed, Gary snoring to my left and Luke snoring on the carpeted floor to my right. The room glowed green from outside light filtered through the drapes. I heard the NYC traffic on the streets below and the hotel bumps and blunted TV noises and elevator dings and people being much too loud for the middle of the night, the wee hours of the morning. I got up & quietly stretched, did a little bit of Pilates on the floor without waking Luke (some watchdog). I drank my Airborn and Vitamin C concoctions. I checked my Active.com site to see if anyone else had donated to my charity team, Leary Firefighters Foundation. I felt guilty, again, that most of my physical, mental & spiritual energy had gone to the training – and recovery from each day’s training – for the marathon. I’d meant to raise more money. A lot more money. I had envisioned myself as some sort of one-woman trike-ridin’ superhero of funds and awareness raiser for this cause, this foundation whose mission matters greatly, personally, to me.
I used up everything to make it to this point, to be physically able to do the race, capable of not just participating, but completing it. If I came this far and didn’t cross the finish line it would not be okay. Gary, my friends, even acquaintances voiced the opinion that all I needed to do was my best. Even if that meant I needed to pull out of the race at any point for any reason. I appreciated their support, the reassurances and sentiment. But, no, that was not going to be good enough.
When you resurrect a long-held dream, practically dig it up from the depths of a deserted graveyard with your own pained hands, wrenching decade-old vines the width of your ankles out of the way and braving all the things that petrify you—fire ants, centipedes, snakes, other dead and damaged-beyond-repair relics you’ve buried there—not seeing the dream all the way through feels like failure. That’s not what I’d say to you if it were your dream at stake; I’d say what people who care about me did. And I’d mean it, if it were you.
But the truth is that if I didn’t cross the finish line with those three wheels rolling and my ass in the seat, having made it to the starting line wasn’t going to be much comfort.
I also had it in my head that if I didn’t finish the race, I would be letting down not just myself but everybody who believed in me, and, significantly, those that had believed enough to donate money to Leary Firefighters Foundation through my race day efforts. I made a vow that pre-dawn morning, sitting in the emerald-tinged near-darkness. It was two-fold. First, that I would push past whatever pain or fatigue or obstacle that might try to come between the finish line and me; second, that my fundraising efforts for LFF would continue long after the NYC Marathon. There are other rides, races, events during which I could wear the Team LFF jersey, shout the praises of the nonprofit I wanted to champion in order to garner awareness and donations for this foundation that serves firefighters and their families. With that vow, that promise and a plan in place, I felt a bit better, easier.
I lay back down and listened to my favorite playlist on my iPod. I concentrated on contracting and releasing all the muscles from my toes to the top of head, even the ends of strands of hair, with slow and even breaths. I envisioned the finish line. I knew what it looked like because Luke and I had passed it on our walk the day before. I fixed the blue, orange and white banner in my mind’s eye, saw myself swooshing past in my red and gold jersey at recumbent trike height.
I must’ve slept for a little while because I awoke to Luke’s chin resting on my chest, his warm breath making shushing sounds. We went to bed early, 7ish, so that I could get much-needed rest. Luke’s clock was out of whack. It was barely 4AM, but I can never refuse him. I dressed quietly and warmly, took Luke to the closest thing resembling grass (a sandy patch about 2 feet x 3 feet with sparse weeds and cigarette butts surrounding the base of a tree in front of a condo building a block away) and then headed back to our hotel to get ready for the race. The lobby was already teeming with runners and their family members, hotel employees, travelers leaving on early flights who probably wondered about all the athletic-garbed folks up and about, somehow looking sleepy and antsy, hungry and nauseous, excited and scared all at once.
Or perhaps I was projecting my own inner state of affairs.
Training for your first marathon on a recumbent trike and want some advice? Good luck with that. The first person to be granted reasonable accommodation of a recumbent trike for a disability in the NYC Marathon—great privilege, yes, no doubt about that. But I was pretty much on my own in terms of information and assistance specific to my health condition paired with the equipment I was using. I’d done smaller distance races in the past (prior to MS) and triathlons as well, but never anything like this. I researched training routines and schedules for every kind of event you can imagine. Neither bike nor running training/nutrition fits what I do, what I was preparing for. The closest I came was information geared toward those training for the MS 150 (an eventual goal of mine). But even with that, I had to make severe alterations to accommodate my pain and fatigue levels, and to take into consideration my gut as it relates to nutrition. What you eat, when, how much, the quality of what you eat, is a major part of any training process. But for me, what I eat on any given day has consequences far beyond nutrition.
MS is a tricky, fickle, sadistic bastard. MS is also different in each individual; none of us has the same set of symptoms or variations or severities. One of the things I get to contend with is a motility disorder called gastroparesis. The vagus nerve (which controls the digestive process) is damaged, partially paralyzed. I’ll try to spare you the details (don’t want to venture any further than absolutely necessary into the land of Too Much Information), save to say that having this condition involves a great deal of abdominal bloating and cramping. Which might not sound too awful at face value. When I say cramping, what I mean is anything from the average twinges and tightness you probably experience with a bad stomachache, to the worst pain you may have experienced with the stomach flu. And then some. I’m talking pain you cannot remain standing in the presence of; pain that doubles, folds you to the extent that you have to pull over immediately if you happen to be driving; pain that sends you to your knees, to the floor if there’s no chair or bed nearby.
This pain brings along waves of heat similar to hot flashes – complete with drenching sweats, flushed face and neck. And nausea that sweeps in like a tide with no respect for the barriers of flesh & bone. Nausea that behaves more like whirlpools and riptides.
Now imagine causing an episode of this pain and attendant sweeps of heat and nausea while riding a recumbent trike. In the NYC Marathon. Where you must cross the finish line.
I have to be extremely careful about what I eat, how much, and when. Any given day with gastroparesis is a challenge, a day when you’re doing the NYC Marathon and need to be fueled with food for energy? Talk about a complicated scenario.
So I had a banana, a half of a breakfast sandwich made out of a plain white bagel, scrambled egg & veggie sausage. I took a Luna bar to nibble at on the bus ride to the start of the race. I packed energy gels. I drank Performance Gatorade after the required morning cappuccino. I prayed to the gods of all things Athlete and Wheeled and Race Day and Human Being Trying To Make A Dream Come True that my gut wouldn’t take me out of the race. I just needed my intestines to behave, for the most part, for about four hours, I figured. Had that ever happened for that length of time in real day-to-day life? No. But it was already a miracle that I was in New York City with a race number assigned to me for an event I’d given up on the day I was diagnosed with MS, 12 years ago to the very week.
I pulled on two pairs of tights. I couldn’t decide between the CW-X Ventilator Capri length or the Insulator full length. MS symptoms are exacerbated by heat, whether core body temperature or outside temperature. The warmer I get, the worse my fatigue is. And balance and other things, too, but today I wasn’t worried about balance because I’d be safe from falling in the reclined seat of the trike. So I put on both pairs of tights, because it was in the 50s with strong winds predicted. I was prepared to stop and use a porta-potty to peel off the heavier/warmer tights if I started to feel like my fatigue level was being sabotaged.
Another thing that probably falls under the category of Too Much Information, but nonetheless is relevant to MS and to this race, is an urgent bladder condition. Safe to say I’d be seeing the inside of a porta-potty at least twice, if not more, during the length of the 26.2 miles. Especially since I needed to keep hydrated to perform as well as possible and keep cool.
The top layers were easy; three Icebreaker long-sleeved shirts and a wind & water resistant jacket. It wasn’t supposed to rain, but better safe than sorry. I slipped my red Team Leary Firefighters singlet over the Icebreakers, pinned my number, H398, to the front, and Gary, Luke and I headed down to the lobby where my team, as well as the FDNY and NYPD teams, were gathering to depart together.
Waiting for the elevator on our floor, another runner came to join us. He looked at me, then at Luke in his mobility assistance dog leather harness, wearing his patches that say Certified Service Dog. Then the guy looked back to me again, down at my numbered bib. He leaned his head in Luke’s direction. “Is he running the marathon too?” This question was directed to Gary, rather than me.
That happens a lot, people asking questions about Luke to the person I happen to be with. When this scenario plays out, each time, I’m not sure the best way to respond. Sometimes I answer the question myself. Sometimes I let my companion answer. It can be an odd and off-putting thing, to be treated as invisible, but I always try to be as upbeat and friendly as possible. Luke & I are ambassadors for assistance dogs; it’s most likely that Luke’s the only service dog someone will meet. I want people to come away knowing a little bit more about what service dogs do, the difference they make. I want these people we encounter to go off and tell others about the woman and the cute service dog they came across that day. I want everyone who needs a service dog to have one, which begins with knowing that you might be helped by one.
It’s important for the public to know the worth of service dogs, to appreciate the difference they make to the people they’re partnered with for another reason too. So that when a story appears in the news about yet another person being denied entry or accommodation because of their service dog’s presence, everyone understands that a federal law is being broken, that rights guaranteed by the Americans With Disabilities Act are being denied, that someone is, in essence, discriminating against an ill and/or disabled person because they’re partnered with a service dog.
I’m very passionate about this—raising awareness in terms of access and accommodation for service dogs—because when you’re first partnered with an assistance dog you think your life will change and the whole world will open to you. That’s true in many ways. But the unfortunate reality is that many people and establishments are ignorant about service dogs and the rights and privileges granted to them by virtue of the Americans With Disabilities Act. In short, a service dog is allowed to go anywhere, everywhere, that the person he’s assisting is welcomed. And yet I’ve been denied entry to restaurants, stores, movie theaters. I’ve been refused accommodation by rental car agencies, airlines, hotels. I’ve even been given a ticket by a Hollywood, FL police officer for walking with Luke on the Broadwalk along Hollywood Beach.
Thing is, there are many days when it’s all I—or any ill and/or disabled person—can do to get out of the house. I have a limited amount of energy, some days more than others. One of the best things that MS has taught me is to choose how and with whom, on what, I spend my time and energy. I must choose very wisely. It’s a crime to have to waste precious and limited time and energy explaining to a business owner or service provider why I have the right to eat lunch with my friend in a restaurant, buy my groceries, take my god daughter to a matinee, go for a walk with a great view of the Atlantic Ocean. If you run a business that intersects with the public, you should be aware of the ADA and service dogs. Good, efficient customer service means equal service to all of your clients/customers, able-bodied and differently able-bodied alike. So whenever someone asks a question about Luke, which is essentially about service dogs, I’m in the business, the vocation, of public relations for a cause very dear to my heart.
Whether I’m waiting for a bus or a table or a cashier or an elevator – I’m often called to be an educator for the ADA and service dogs. Convenient? Nope. But a small price to pay in exchange for the gift of being partnered with a service dog and being able to talk-up awareness so that more who need one might have one, and that once that team is out in the world they might have an easier time navigating businesses and restaurants and anyplace else they choose to go.
The confusion and querying regarding the curious pair of Luke and me—a woman wearing a race number with a service dog at her side—continued as I made my way through the throngs of folks in the lobby and waited among the members of Team LFF. I’d never met any of these people before, so it’s understandable that I felt more “a part from” than a standard team’s definition, “a part of.” LFF’s marathon team organizer (and the director of Leary Firefighters Foundation) is Mardi Grant and we’d emailed and spoken on the phone a few times. I’d met her the previous day when Luke and I travelled to the foundation’s office to pick up my race jersey. When I saw her smile across the sea of unfamiliar faces I was relieved. Even without the sometimes awkward questioning of why I have a service dog and what he does for me and how, I’m a freak mix of outgoing, playful, chatterbox theatre major and shy, socially-challenged, introverted writer. Leaning toward the latter until I get to know you, or at least until I get a word or look or vibe that puts me at ease. Luke, far beyond the mobility assistance call of duty, has been a paragon of grinning golden retriever goodness who turns out to be a super secret weapon to a self-conscious geek-nerd like me. Because as untimely or weird as some of the questions I get from strangers are, there can be no doubt that Luke is a magnet. A magnet that draws anybody and almost everybody in, then transforms itself into social butterfly.
So many things about my life, about me, have changed for the better since Luke. Chief among them is that I no longer have to worry over whether to approach someone or what I should say when joining a group of people I don’t know. Am I still anxious and twitchy and stammering? Do I spill my drink and drop food on my shirt? Yes. But all I have to do is stand (or sit) there. People now come to me. And 9 times out of 10, they have huge, silly smiles on their faces; half of those people are talking in that giddy, beaming tone of voice reserved for babies and adorable, four-footed, tail-bearing creatures. Who needs Xanex to calm nerves when there’s Luke?
Well, that morning, about to make or break a dream I thought I’d never have a chance at once MS came into my life? Me. I needed Xanax.
Right there, surrounded by over a hundred expensive-running-shoe-clad men & women, it was like I was soaking up all of their pre-race jitters and doubts and worries, adding them to my own already substantial and expanding ones. So, if you’d walked up and asked me in your best Matt Lauer, Meredith Vieira, Oprah or 60 Minutes voice, “Denise Lanier, what’s on your mind this very second, as the start of the marathon approaches, not 2 hours away, and counting?” If I were being honest, I would’ve answered, “Xanax.”
And then I would’ve asked Anderson Cooper or whomever if they happened to have any. Trade you a Power Bar? GU Gel? I’ve got Chocolate Outrage & Orange Burst. Take your pick. Heck, take it all.
PLEASE SUPPORT MY EFFORTS IN THE 2011 NEW YORK CITY MARATHON WITH TEAM LEARY FIREFIGHTERS FOUNDATION
Pingback: More About Pain & Fatigue « Wonky Woman on a Bent Trike
Pingback: MS150, Please Be Gentle With Me « Wonky Woman on a Bent Trike