FRIENDS

This week we will shine a bright spotlight on the title of this piece. Let me preface by telling you that there are no jokes in here. I feel the need to put that front and center since I am usually (always) clowning around.

Earlier this week, I travelled to Philadelphia for scheduled medical visits. I am taking part in a voluntary natural history study for adults living with my type of muscular dystrophy (Limb-Girdle). This three year study has me adding to scientific data in the areas of cardiology, lung function, bone health, physical therapy, muscle strength, levels of all kinds of things in my blood, progression of the condition and a few other things. I am happy to be participating and all of the appointments are scheduled back to back during one LONG day.

I live in New Hampshire, and Children’s Hospital of Philadelphia (CHOP) is the closest study site to me. I also live about 30 minutes north of Boston, where the Acela train can get me to Philly in about 5 hours. Less money than a plane ticket AND I get to stay in my power wheelchair, which is WAY simpler than flying with it.

None of what I am about to tell you would be possible without a dear friend. My wife is teaching, and cannot easily take time off to travel with me every six months for these Philly trips and hiring a personal care attendant (PCA) is pretty much impossible for things like this, so I need to make large asks of close friends. The things I need help with currently are MUCH more involved than they were 10, 15, 20 years ago, and not too many people are comfortable with providing care like this. I don’t blame them, as I am not sure what I would be comfortable giving if the roles were reversed and one of my buddies was the one with the progressive, chronic illness.

Thankfully, I have more than one friend that is comfortable, and I have one friend who has a flexible work schedule that I have known for almost 35 years. Man, as I typed that sentence, I can’t believe I have known this dude for that long. He has been with me through everything and we share many of the same passions in life: drums, great music, good food, sports, love of the outdoors, travel, and laughter. Let me introduce you to one of my two best friends on the planet: Jim. Instead of me telling you why I love him, let me tell you how we just spend the last 3 days.

Monday

Jim drives a half hour in zero degree weather and arrives at my house at 9AM in order to help me load my things that I will need for the train trip to Philly. My outstanding wife has already packed my stuff, and I travel just like everyone else, but I have a few add-ons: a sleep machine, a small bag of tools in case something breaks on my wheelchair, a wheelchair battery charger, gloves, baby wipes, and a portable bag urinal. Oh, I also require driving my own van, because there is no way to load a 450lb. chair in any normal car. I drive us to South Station in downtown Boston to board the Amtrak. We have to try two parking garages since the first one has no handicapped parking spots, but we didn’t know that until we drove several levels underground.

We park, he carries both bags of clothes and I loop a few bags on the back of my chair. It is below zero outside with the wind chill and it is 2 blocks to the train station. We run.

We have 30 minutes to board and we both need to visit the men’s room. The men’s room in South Station has a dozen urinals that I can’t use, as well as more than a dozen stalls, but only two are wide enough for my wheelchair, and Jim, who needs to help me unzip my pants and then hand me the jug, and turn around while I pee. We cannot do this as both wide stalls are occupied by men in their 20’s shooting drugs. Right there in the bathroom at 10:30 in the morning. We wait a couple of minutes, and hear people crying and throwing up. I become disgusted and use my bag urinal out in the open in the men’s room while Jim stands by as someone asks him if I am his father. He tells the guy he is just a friend and the guy answers “Wow, you must be some friend.” It’s ridiculous. Jim then takes the pouch full of my urine and dumps it into a urinal. Following this, he washes the bag, his hands and then puts it back in my pack on the back of my chair.

While he goes to use a urinal, I go into the general station area and speak with a Boston Transit Officer who tells me that men in the stalls is a regular occurrence that happens several times a day. I patiently explain to him that I’m unable to use the bathroom if I need to have a bowel movement and this is unacceptable. He offers to go in and clear out the men. I thank him.

Jim comes out and we talk about how this is real life, here in front of us, while others argue over the name of the Gulf of Mexico. We laugh, because….funny, not funny. He stands in line and orders 2 sandwiches for us for the train ride. We board and he stashes all of the luggage. The train is bumpy when moving, so Jim has to feed me lunch and give me sips of water, as I am no longer able to do these things myself without the correct height of a table in front of me. Neither one of us mentions anything about this. We go about it and talk about our families, music, and work.

The train ride takes us to Philadelphia a bit after 4pm. Jim takes all the bags and we head up to the main terminal. We both need to pee again, and this time, a handicapped stall is open in the men’s room, so we use it. Jim books a wheelchair Uber, which is hit or miss, but pretty much hit in Philadelphia and so we only need to wait about 20 minutes. It is less than 15 degrees out, and the hotel is only 7-8 blocks away but neither one of us wants to be outside. I would be unable to drive my chair as my hands would become useless, and Jim is a normal human who, with a brain, doesn’t want to be outside either. I board the Toyota Uber from a ramp in the back, Jim helps the driver secure my chair and Jim carries all of the bags.

We check in at the hotel, go up to the room and Jim unpacks everything and also sets up my sleep machine for nighttime use. After a long day of travel, I need to use the bathroom for real. He lifts me from my chair on to the toilet, shimmies my butt from left to right as I lean forward while he toggles down my pants. He then makes sure to sit me back up and check my balance before he leaves. I go. He comes back, puts on plastic gloves and uses baby wipes to clean me. I lost the ability to wipe myself about 15 years ago. This used to bother me more than it does today. You become comfortable over time changing things that need changing in order to survive and have a decent quality of life. Jim and I don’t discuss this either. The level of ease is the same as you being asked to pass the salt.

He lifts me off the toilet, puts me in my chair, and does the reverse so I can stretch out on one of the beds for a bit. Being in a chair shaped posture all day has its drawbacks and I need to lay down from time to time. He gets me dressed again and we talk and have some laughs. We decide to go to a local sports bar to have dinner and watch hockey.

While there, I am unable to drive my chair close to the bar tables, as the base of each one extends out far enough to block me about a foot from the table. All evening Jim raises my glass when I want a drink, and also feeds me again. This time it’s fries and a Philly cheesesteak. It’s delicious. Oh, Jim also books the Uber to and from the hotel. Upon our return, he hands me my toothbrush and helps me take my meds. He then lifts me into bed, positions me so I am comfortable, and puts my headgear on so I can sleep. That’s day one. Friends.

Tuesday

Alarm at 7:00AM for 10:00AM start appointments time. Do we need 3 hours? Yes. In addition to all the things Jim did for me yesterday, this morning we must tackle the shower. The hotel bathroom has a walk in shower with a regular shower head as well as a hand held one, along with a bench that is attached to the wall and folds down. Jim figures out how to operate both the regular shower head as well as the hand held one BEFORE I get in there. I learned the hard way that sometimes one nozzle works and one doesn’t. A blast of cold water…well, it’s happened to you, so you understand.

Jim needs to remove the sweatpants that I slept in, as well as my T-shirt. He then hands me one of the medium sized towels so I can cover myself. As many times as we have done this, we still try to achieve a small level of privacy. Jim then lifts me to the shower bench, starts and adjusts the water temperature and then shampoos my hair, puts soap on a facecloth and does my back and pits. We usually tell stupid jokes or quote movies during this time. He then puts a lump of soap on my hand and I reach under the towel, which is still across my waist but weighs 100 lbs. since it is full of water. I am still able to wash my privates by myself.

He rinses my head, back, and legs and turns off the water. He gives me a dry towel but he needs to dry my head, arms and legs. He puts another dry towel over my chair and transfers me back into it. No matter how hard we try, there is always a bathroom flood everywhere we go, and we use at least three times more than the average amount of towels that are given to us. Note to Jim – you talked about bringing water shoes so that you don’t slip. Note to both Jims: pack water shoes.

I brush my teeth, and Jim puts on deodorant for me. I drive into the hotel room and he transfers me onto my bed. He dresses me, puts on my socks and shoes, and lifts me into the chair once again. While I confirm my day’s appointments, he freshens up, makes coffee and gets dressed. We take breakfast in the hotel restaurant where I still cannot get my chair close enough to the table to eat. Jim feeds me again, we call an Uber and head to the hospital.

I have appointments all day and Jim has his laptop, so he goes off to the hospital cafeteria and works. He takes a side Uber to an Apple Store when he realizes that he left his computer charging cord at home. Not a bad trip if this is the only thing we failed to bring.

My last appointment of the day is around 3pm and it’s a bone scan called a DEXA. People with muscular dystrophy often develop brittle bones as they age due to lack of weight bearing, and being in one seated position for years. The scan takes place on a low, flat table, and so Jim hangs around to transfer me. The hospital has a Hoyer lift that can do it, but it’s portable, located somewhere else, and a sling to wrap around me would also need to be found. Jim does the same job in 23 seconds. The DEXA scan lasts 3 minutes. Jim lifts me back into my chair and I joke with him that he doesn’t need to go to the gym this week.

Before I leave, blood is drawn and the hospital wants a urine sample. You have likely done one, and believe me when I tell you that it is difficult to pee in the urine sample cup while your friend once again has jacked down your sweatpants just enough so that it doesn’t spill. And so it goes.

We Uber back to the hotel, repeat the whole ordeal with me pooping and then both of us catch up on more work with our laptops.

A bit later, although we are both tired, we decide to have an upscale meal in the hotel restaurant. I change into jeans and a sweater. Actually, Jim changes me into these clothes and we joke about how everything is more difficult than sweatpants, but I can’t wear sweatpants to dinner in a fine eating establishment, so we make the effort.

We share a few hours of college stories, and have several belly laughs over shit we pulled as young musicians when we first met at University in the fall of 1991. Though we are both drummers, Jim practiced so little that at the end of the first semester, when I saw him practicing a marimba piece, I asked a mutual friend why this trombone player was here. That was my official introduction to the man who would one day be best man at my wedding, and I at his. Spending time in the drum practice area at college led to putting golf balls down the college hallway, sharing dorm space, teaching high school marching percussion together, taking trips, going to sporting events, witnessing the birth of each other’s children, and sharing so many inside jokes that we can have an entire conversation in front of our wives with neither woman figuring out what the hell we are talking about. It started with me carrying a snow shovel in the back of my car on campus, and Jim shoveling my parking spot outside the music college in the winter. It started when the fire alarm went off in the dorms at 2AM one night during a snowstorm. I was not yet using a wheelchair, but my balance was not great on my feet and I knew that walking outside in a snowstorm during a fire drill was going to be trouble. Jim squatted down and gave me a piggyback outside. We may or may not have also had cocktails in hand. It started when I visited Jim and his wonderful parents in Maine for amazing lobster dinners and Jim piggybacked me up the stairs to a guest room, and strapped me on to the back of a jet ski.

Like any lifelong friendship, it grew for years and ebbed and flowed as life got in the way with kids, moving to different towns, job commitments and other life things. Through it all, we always referred to our time together as “THE HANG.” My other best friend….also named Jim coined one of our best descriptors of how we navigate life. He summed it up like this: NOTHING stops the hang.

The night I was airlifted from one hospital to another, my wife spoke with a bunch of my closest friends. It was quite late. Jim fretted about at home for a while and then told his wife that he was going to the hospital. She asked him if he thought that there was anything he could do, as my outcome to survive was not looking good at that exact moment.

His reply? “I don’t know, but right now I want to be near my friend.”

A friend like Jim, and the other Jim, as well as a few other buddies who keep me afloat not only make my life possible. In fact, they don’t even make it bearable or tolerable. They make it the full adventure that it is.

Love you brother. Thank you will never be enough. So let’s hang. Cheeseburgers?

Stay safe, stay awesome, and stay tuned.

This week’s blog is dedicated to Bobby Jo. You have an amazing son.