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May 26, 2017 / tgexp

Michael Coleman 3 Month Adventure

Thanks to the funds donated to the Gleason Initiative Foundation, Team Gleason was able to sponsor a portion of Michael Coleman’s three month Adventure!photo 2 (2)
Upon Michael’s return Team Gleason received the following write up. Thank you Michael for sharing your story!
“I don’t get depressed, but I do get discouraged. When I get discouraged, I start thinking about the nuclear option. Oh come on now. Don’t act so surprised. I think most people who are diagnosed with a terminal illness have thought about end-of-life options at some point, and I think that’s ok.  It was the first thing I looked into after learning how the insidious disease ALS makes people suffer before killing them. I may never use the nuclear option – most people don’t.  But the thought of having options comforts me, gives me piece of mind, and has actually helped me to survive the continued loss of normal.

As I was saying…I get discouraged especially in winter. In Maine it is cold, damn cold, and snowy and icy. I’m stuck inside, trapped in a weak and failing body, feeling like I’m just waiting. I can’t stand that. This past winter I needed help, I needed a plan.

So I emailed Team Gleason regarding an Adventure.

And now, on January 12, 2017 (seven years to the day from when a neurologist told me I have a terminal illness and should go home and get my affairs in order) my old Saab is packed.  I have checked off all items on my road trip packing list. Family and friends have been assured that I know what I’m doing. I can do this. I am off on a Team Gleason adventure! With family support, words of encouragement from friends, a little bit of luck, and lots of kindness from strangers, I’m confident I can drive myself to Florida from Maine.  I’ll stay with friends along the way, visit my two daughters in NC, spend a month in warm FL,  and have more visits on the way back. My wife will take three weeks of vacation time and join me in Florida, my daughters will fly in for a five-day stay, friends will visit and I will visit friends…….just like any guy on an adventure.

Admittedly I do have some challenges. The non-operating driver’s side window in my old Saab will be annoying, my intermittent gps unit will be tricky, and my old car is sure to be trouble. I should also mention that I can barely walk, have trouble eating without choking, difficulty with fine motor skills, breathing is sometime a chore, and I can no longer speak. But, my spirit is strong and I’m a good driver.  Just in case, however, in a travel bag on the seat beside me I have a ziploc bag that contains my identification, and instructions in case I can not speak for myself.  The packet contains advance directive forms and an organ donor form. I don’t go anywhere without these documents.

Google ALS and you will get a description of Amyotrophic Lateral Sclerosis. A progressive neurodegenerative disease that affects nerve cells in the brain, and ends with paralysis and death. Although it was discovered by a French neurologist way back in 1839 and named after the baseball great Lou Gehrig in 1939, there is still no cure.  Average life expectancy is three to five years – that sucks.  Only ten percent live ten years – double sucks.  Early on, my unfailingly positive wife pointed out to me that averages are calculated by including statistics above and below the median, so there was as good a chance of being above the median as below.   She always believed I would be an outlier on the longevity end of the spectrum. I don’t admit it as often as it happens, but…I love when my wife is right.

So, when I first set out back in January, having said farewell to the security and comfort of home, I cruised along in no hurry. Indifferent to the scolding looks and gestures of contempt from the masses who have to be somewhere, I drove without urgency, savoring the thrill of independence. Introspection as my co-pilot, well provisioned with cookies as my sustenance, I was jubilant.  Traveling solo forces me to interact with new people, experience new situations, and brings opportunities for new problem-solving encounters.

 Not being able to speak is hugely frustrating. Sometimes I abandon the effort in a disheartening mumble of futility, or worse, yield to a feeling of annoyance with someone who is only trying to help. But there are moments of triumph. Using hand motions, and a text-to-speech app on my phone, and lots of patience from the listener, I am able to share a story. It’s not easy, but the difficulty of it only enhances the reward. When I see the smile of comprehension (and relief!) on a friend’s face, there is a sense of normalcy, and hope. Communication is connection.
You know those handicapped assistance buttons on gas pumps? When you press one, no employee ever shows up, but kindness always does. During my round trip of 5300 miles, I learned there just aren’t any full service stations any more, and yet I only had to pump my own gas a handful of times. Inevitably, another customer would see me struggling and offer to pump my gas. If the pump didn’t have a credit card reader, they would even take my card in to the store and pay for me. Despite what is broadcast on the nightly news, people are kind.  They are just waiting for an opportunity to show it.

Stopped for fuel in West Virginia, my car wouldn’t start back up. This could be a disaster, as its getting cold and late. I text my wife who calls insurance. Insurance locates me, and a tow truck is dispatched.  This tow truck driver is a great guy, who loads me and my gear as well as the car onto the tow truck. Together with two helpful bystanders, he’s able to lift me up into the high cab of the truck. This guy even takes me to the hotel, brings my luggage into the front office and explains to the desk clerk that I can’t speak. The next day an old friend drives four hours from PA to pick me up and brings me all the way back a few days later when the car is ready. Problem solved.

While visiting my daughters in NC, I go to their local YMCA.  Although I have no absolute proof, I believe that consistent moderate exercise has been one of the keys to keeping me on my feet and out of a wheelchair this long. But being in the midst of the strong and healthy at the Y, my ego (what’s left of it) goaded me into doing too much. Now I’m exhausted, shaking. Halfway to my car, I have to stop, indecisive. It’s too far to go back inside, but I’m not sure I can make it. I didn’t notice the man sitting on the bench in the sunshine until I heard the words of encouragement in his deep resonant voice. “You’re doing good, you take your time and enjoy this beautiful day”. His words are a beam of warmth momentarily reestablishing connectivity between me and the planet. Focusing on my sneakers, a last-ditch effort to make them move is futile, so I just raise my face to the warmth of the morning sun, acknowledging him by appreciating the beauty of the morning. He got up and came to me and placed his hands on my shoulders to steady my shaking. He offered to accompany me the rest of the way to my car. As he gently lifted my walker into the back seat, his gray beard scratching my cheek, he leaned in to give me a big burley black man hug. He says God loves me, tells me I’m going to have a great day, and goes on with his own. My faith does not mirror his, but he is right. His kindness has already made it a great day.

On one of many sunny days in FL, a tanned and smiling older woman is leaving just as we are walking down the path leading to the beach. After she passes us, she turns back and stops to tell us that the other entrance has a handicap ramp which might be much easier for us. She is very sweet and she is a talker. She tells us her husband passed away and she misses going to the beach with him. She says he didn’t really like the beach, but knew she did, and he loved her so much he would go with her anyway. She lets us know the lifeguards have a beech wheelchair and we should ask for it…but only if I want to.  I’m not sure when but at some point during the conversation she has taken hold of my hand. We can tell she is curious about my condition, so we tell her it’s ALS. Her eyes well up, and she tells me I look good, handsome really, and I have good skin. I lean over and give her a kiss on the cheek. She gets a little tearier and says, “Thank you. I have not been kissed in a long time.” She calls Ruth “Sweetie” and with a sign of solidarity hooks her arm through Ruth’s, and says to her with a knowingness born from experience, “Love is strong. You’re doing good. You’re gonna be ok.”  She leaves, but shows up again a few minutes later.  She digs through her gigantic beach bag and produces two bottles of water. She wants to make sure we enjoy our beach day. We all blow kisses as she heads off once again.

These kindnesses and so many more are what made my trip down and back not only possible but so gratifying. I stayed in Florida for a month. During time spent with my wife and daughters and friends, we rented a boat, went fishing and tiki bar hopping. We dined at open air restaurants, lunched on our screened porch, drank cool beer on warm evenings, watching dolphins pass by with a background of beautiful sunsets.  We idled away hours sitting on the beach together. I rented a mobility scooter and for the first time in a very long time, this allowed me to accompany my family on walks, hikes, bike rides. This feeling of family normalcy and being outside in warm nature was exactly what I had hoped for.

The story of this adventure is really a story of kindness. It’s a story of tomorrow will be a better day. There were so many adventures, warm days filled with laughter, and kind gestures that it’s impossible to find the words to express my joy.  My goals for this trip were to feel warmth, be outside everyday, spend time with family and friends, and be independent. I may have a terminal illness, but my way of thinking is that living with ALS and dying with ALS are two entirely different activities.  I am living with ALS, and yes, I should plan and have options. Yes, I should accept and adapt as necessary.  And yes, I should do what I can to help find a cure. The challenge is to not get caught up in trying to prevent end-of-life at the expense of living life.
Hope is a manifestation of the heart. To ignore the heart is surrender to ALS.  Before I left on this adventure I was letting ALS drown out the sound of my heartbeat. I was spending too much energy counting up my losses. This adventure reminded me that I can continue to have beautifully normal days…..tomorrow will come and if I accept and adapt to daily challenges, I can be a normal, happy everyday guy, enjoying, not counting, his days.
Life is sweet.

Thank you.”

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