<Originally Posted 8.23/16>
I preface all of my blog posts with, “I’m not a good writer, I’m much better at talking with a beer in hand, but I’ll give it a shot.”
The following is my account of the event that has had the single most profound effect on my life to date.
I just graduated from PT school (and passed the boards!) from Marymount University in Arlington Virginia. Hey, I’m a PT! (weird to actually write)
A rite of passage from the Marymount PT program is a trip that you take during your third year. Students spend two weeks working in Costa Rica in facilities that range from an orphanage, to an assisted living facility to a pediatric facility.
The things we are taught in school are great, but seeing it and being left alone with it, 1 on 1 is an entirely new ballgame.
The clinical environment and patient population we experienced was so intense and vastly different than anything we had seen before. After the first day I was already feeling overwhelmed.
But, my classmates and I worked in pairs to problem solve for each case, which required a lot of creativity and patience. Every idea either one of us had was explored. If neither of us had an idea we would just try something, anything at all and see where it took us.
We worked long days, in hot weather with patients that were severely limited physically and cognitively.
“Shit, I’m in way over my head.”
As someone who is coming into PT as a second career, I struggled with, “Is this the right field for me?”, “Will I be good at this at all?”, “Should I even be a PT????” For a majority of this trip I was considering that, “this isn’t for me.”
I wasn’t great at it, I constantly felt off balance and I wasn’t going to let myself do something half assed, at the risk of compromising someone’s care. That would be irresponsible…
Maybe I could enlist in the military? Go back to being a radio DJ? Circus performer?
Just… something else, anything else…
We worked at a place that is best described as an orphanage, but the residents ran the lifespan, from adolescence to geriatrics. It’s called “Manos Abiertas” which google translate tells me means “Open Hands”. The facility was large, with 8 buildings on just a few acres < 5 miles from the airport in San Jose, Costa Rica. It is directed by nuns and staffed with nurses, caregivers and physical therapists.
One of the main buildings contains a hospital and unit for pediatrics. The PT gym is also housed in this building with a towering crucifix and anatomically correct heart adorning the outside.
Further back on the grounds there is also a chapel, a building for food preparation and three housing units. To limit confusion amongst my classmates, I took it upon myself to name these units the sorority house, the frat house and the “other one”. (I ran out of creativity for the third one, what are you gonna do?)
Each student was paired with a resident during the two weeks we were there. This was to allow you to get comfortable with them, and them with you. This was especially important because during our time, two field trips were planned. One to a mall (the largest in Central America) and one to a pool (yes, we got them ALL in the water, a feat likely to be unmatched anytime soon).
I was paired with a young girl with microcephaly named “GA”. She was sweet, never stopped moving and wanted absolutely nothing to do with the weird American kid who kept saying “HOLA!” to her in a New York accent… (When I say it, it sounds more like Whole-Ah! But sue me, I took French in high school.) So after driving her nuts trying to “bond” for an hour or so, I’d wander over to where my classmates were hanging with their residents.
The Mayor of Manos
G is an 18-year-old boy with Muscular Dystrophy. He’s about 5’8″, 180 lbs, with 3/5 strength for shoulder flexion and abduction and elbow flexion. 3+ for neck rotation bilaterally, wrist flexion, extension and both ulnar and radial deviation. He resided in a tilt in space wheelchair from dawn to dusk. His cognition is fully intact but physically he is completely dependent for all tasks of daily living.
That’s a description of him by the numbers.
That’s what we would write as an assessment.
But, that’s not who HE is.
G is a funny, sarcastic, fútbol loving kid. He wants to watch and talk about fútbol , specifically his favorite team, “La Liga” any chance he gets. He smiles almost non-stop, engages in conversation with EVERYONE (fellow residents and caregivers). People make it a point to go out of their way to say hi to him, because when he says, “Buenos Dias” you can tell he genuinely hopes you have a “good day”. He just wants everyone to be happy! He’s essentially the “Mayor of Manos”, students who have gone on the trip years ago, all know who I’m talking about when I reference G.
He’s got a best friend named “E”, who has cognitive impairments on top of his physical impairments. But throughout the day, you’ll hear G throw out a phrase in a weird voice, and E will echo it no matter where he is, and both will giggle (along with any PT student nearby).
His english is 100 times better than my spanish (which isn’t hard, because my spanish sucks). He’s funny, he saw my shitty spanish from a mile away and would misconstrue, misinterpret and just plain old screw with me any chance he got. The only way I knew he was doing it, was the mile wide grin on his face as he waited for me to realize, I’ve been duped.
Through the two weeks of working at Manos I interacted with G many times. The facility houses about 100 residents, with an overwhelming majority with cognitive impairments. Cerebral Palsy is the predominant diagnosis, which limits most residents to being non-verbal and if they are verbal it is only a few words.
G’s fellow residents in the frat house are divided equally from teens to adults. They are a tight crew who are free to move from the house to a small yard. Toys and soccer balls are scattered for them to use, but what they seek is attention. The residents are excited, but not aggressive, more curious and just plain eager to have contact. They hug, grab your hand, try to lead you towards something that they want you to see, repeat a word or phrase that may or may not be comprehensible. They’re strong. They don’t seem to know their own strength at times, but again, I never sensed aggression from any of them, they just wanted you to pay attention.
During my time there, I never once saw a resident lash out at one another, but I couldn’t help but think… G is defenseless. If one of them panicked or just had a moment of emotion they couldn’t handle… He. Can’t. Move.
So, I focused on this, it bothered me. I tend to do that. Focus on the things that bother me. It made me angry, deep inside. I didn’t say anything to anyone at first, but then started to say things like, “This one, he deserves something more, right?” I was looking more for confirmation of this feeling than I was permission to do something, maybe most of all, because if I said it outloud enough, then I’d have to come through. I’d have to do it. And it needed to be done.
The day we were leaving was filled with a lot of different emotions. Several of my classmates and I were standing in the yard around the frat house, lingering. I was trying to outlast my classmates, and be the last one to leave. I knew once I actually had to say “goodbye” outloud, I was going to lose my shit. And I didn’t want an audience for that. But, my classmates wouldn’t leave, so I blurted out, “Goodbye G, it was great meeting you, be well.” or some bullshit like that, and then walked away. Great exit, really poetic Jimmy, slap that on a Hallmark card just like all of the other generic comments they produce.
I made it about 100 yards down the road, with the bus to take us away just another hundred feet away, and I did something that was pretty unlike me, I went into the church. Now, I think god and I are on pretty solid terms. I try not to do anything particularly awful and when I see a chance to do something nice I tend to do it. But, I usually need a holiday or funeral to get me into a church. But, I wasn’t going in to pray, I was going in to hide. I paced, I cursed (at myself, not at the big guy) and I cried. I was so angry and sad and pissed and helpless and lost and confused. What the fuck!? I had a rather spirited discussion with myself in the back pew. When it was over I had decided two things:
1> Those would not be the last words I said to him.
2> I’m going to get him a chair.
So, I did what any guy with eyes full of tears does, I hid behind my sunglasses and walked back to the frat house. Shit, he wasn’t in the yard anymore, everyone had left. I walked in and found him laying in his bed on his back, eyes wide open. Here I was, full of piss and vinegar, so full of adrenaline and emotion that it’s coming out of both eye sockets and he calmly said, “Hola Jimmy”. He wasn’t broken hearted that we all left, students and visitors come and go for him. He is used to comings and goings, he is particularly used to staying still. I highlight this because it was really two opposite ends of the spectrum; my HR was jacked, I could have punched a hole in the wall I was so upset, and he just smiled and said “Hola.” Here I was now trying to poorly describe why the hell I came back after I already said goodbye in some grandiose way that would be fitting for a Tom Hanks movie and I was full on marbles in my mouth tongue tied. So I just said “Hey G”. Composed myself and finished with, “I wanted to say that I really liked meeting you, you taught me a lot… and I’m going to send you something.” He was his normal, happy self and just said, “ok.” (If this becomes a movie, the writers need to punch up the dialogue in this scene, a lot.) I leaned down and hugged him and left with an “I’ll miss you.” which was the most honest thing I could have said. I cried as I left the frat house, cried as I walked down the road past the chapel, tried to hide the tears as I got on the bus and had to face my classmates and professors, cried when I got back to where we were staying alone in my room. Did I mention that I cried?
The trip was an amazing one, and I’d love to say it changed my life and I left and immediately began working on exactly HOW I would get that damn chair, but I didn’t. First, I went and got hammered.
In chemistry, alcohol is a solution
Now, if you’re reading this you probably know I host a podcast about physical therapy recorded over a beer. So, I’m going to start to seem like an alcoholic since two of my best ideas while in PT school have started while intoxicated. But, what really happened in both cases was, I had the ideas, I just needed to not THINK about taking the leap. Because leaps are dangerous, scary and lead to FAILURE. And sometimes… alcohol makes us “invincible” to criticism. I originally proposed the idea with Shannon to our professor Kelly Negley one of the last nights we were working at Manos. Kelly worked at NRH in Washington D.C. and part of her job as a PT there was to perform wheelchair fittings. So she knew what these things were about, how to get someone the right chair and… how much a good one cost. Kelly is a pretty straight shooter and laid it out as we went through a wheelchair fitting form. I’m not great at math, but I knew that the chair wasn’t going to be cheap. It was left that we would “figure it out once we got back to the US.”
Now, the week after we were done working at Manos was Marymount University’s spring break… so most of my classmates and I rented houses and stayed in country, because, why the hell not?! Myself and 8 other classmates rented a ridiculous house with a pool in the living room on a mountain overlooking the rainforest and the ocean from our balcony that was often covered in monkeys… ridiculous right? So we did what most PT students would do after working for two weeks straight. We opened our NPTE study books and notes and really got down to preparing for the boards which were just a few months away…
That is a big fat lie.
We bought as much food and alcohol as we could and were in the pool before we could even get into our bathing suits! I’ll have to spare you the details because I’m sworn to secrecy, what happens in the rain forest, stays in the rain forest… But, what I can tell you is that first night, between drink 4 and 11, that feeling, deep down inside started to bother me again. It never left and now with some alcohol in my system, all I could think about was G. A constant thought in my head was,
“I just left him laying there.”
I am a triathlete, but before I ever did my first race, I WANTED to be a triathlete. But instead of signing up for a race and training, I got drunk (shit, this is starting to look like a pattern) and bought a wetsuit online. I had zero recollection of this transaction until a large box with a black neoprene suit showed up at my door. My drunk self had forced my sober self to actually GO and DO the thing that I wanted to, but was too scared to start the process for. So I did my first race. Drunk Jimmy had started sober Jimmy on his way to the finish line.
So back to Costa Rica. There I was, hammered & bleary eyed between drinks, classmates jumping in the pool, mixing drinks, blaring music. And I’m at the kitchen table with my laptop (real “life of the party”, aren’t I?) when I decided that we would raise the money for the chair and that tonight would be the night we started it. Jesus take the wheel? Na, drunk Jimmy take the lead!
The goal was, get G a power chair by PT school graduation day. I wanted to know that besides finishing classes and tests that when I walked across the stage I had accomplished something. Something that would matter and would make a difference to at least one person. He was MY guy now. As I sat there, drunk, the Go Fund Me page did the math for me. Graduation stood exactly 70 days away. Just raise $228.57 per day… for 10 weeks. Ok, we had our starting line, and we had our finish line. But how the hell are we actually going to get there?
The fundraising came from many different directions, primarily centered around the podcast that we had launched a few months earlier. Individual donations through a GoFundMe page, an online T-Shirt sale, continuing education courses from some amazing PTs around the world gave me free seats in their classes that we then auctioned off, and some amazing people that had never met G in person found ways to donate large sums of money to the effort. All gave some.
Sixty Six days later, four days short of graduation. That morning, I nodded at Dr. Venskus as I rose from my seat at the back of the classroom. Before she walked into class I asked her if I could share the news that myself and a few of the faculty were privy to. That long walk past all of my classmates reminded me of my walk from the frat house to the chapel. I choked back some tears, made a conscious effort to make eye contact with no one, for fear of losing my shit. And typically I can be known to be able to speak without issue. But that day I didn’t want eloquence, I wanted them to just know what I knew. I began with, “The fundraiser is over,” (I paused for dramatic effect, hey a little effect isn’t bad) My classmates looked confused, did “over” mean “cancelled” or did it mean, what? I let them hang for a few seconds, if I went any longer I would start crying, and I didn’t have any sunglasses to hide behind today. “G gets his chair.” They responded with a few honest gasps and clapping, some cried, all smiled. I had to immediately walk away, apparently thinking about this kid, makes my eyes leaky. Sixty Six days, I cannot thank everyone who helped enough for what they did. I’m still searching for a phrase stronger than “thank you” to let people know what their efforts meant. To him and to me.
I want to highlight the Permobil company who manufactured the wheelchair that we eventually purchased. We could have gone with a less expensive chair and hit our goal even earlier, but as mentioned before our professor Dr Negley worked with fitting wheelchairs and called Permobil “The BMW of Power Chairs.” I didn’t want to buy him one that would fall apart. My stated goal had been to “get him a chair” but as I had heard many times in my PT education, “What would you want for your brother or sister?” The answer is, “the best”, of course. So we fitted him with a Permobil chair that would take care all of his needs now, and it’s modifiable going forward. As he changes, the chair can change. The initial price quoted by Permobil was NOT the price we eventually paid, the price dropped several times, the more that Rudy, our contact within the company, and the rest of the organization heard about G’s story, the lower the price got. For that, we are forever grateful. One more advantage among many for using Permobil is that they have a local contact, near G in Costa Rica, should his chair need repairs. Something that I didn’t initially think of, but it is something that gives me a great feeling of security knowing that is in place.
I want to say thank you to Marymount University and our Chair and my advisor Skye Donovan, saying you want to raise that much money in that amount of time, some professors might have told me to be more realistic, but she never blinked. She went out of her way to help facilitate new ways for us to raise the funds, and without her the chair would not have happened. The University pulled out all of the stops to help us find new and innovative ways to keep the momentum of the fundraiser going.
Dr. Diana Venskus also deserves much praise. It was her vision to start the trip to Costa Rica in 2010 in the first place. But, vision alone couldn’t make that happen, her drive must be commended as well. She created a new pathway for lives to be changed for the better, residents but also not to be overlooked, students as well. She continues to this day to look for new and innovative ways to find new student/patient experiences.
Marymount classmates, PT students from other programs, faculty members, clinicians from around the world, strangers mostly, all gave. Every dollar that came in made it seem like it would actually happen. Throughout, I would try and picture what he would look like, or how he would act when he saw it for the first time. This chair would change his minute to minute existence. No longer relegated to sitting passively now he would be able to MOVE.
My classmates and I walked across the stage a few days later. Parents clapped, siblings cheered, grandparents pinched cheeks. We had come a long way in three years together, through tests and practicals, late nights and early mornings. Doubt about what we were able to do has even been known to creep in from time to time. But when I walked across the stage, I knew we had accomplished something bigger than us.
The next step, was bringing the chair to him…
Here is what that part of the story sounded like.