My Voice-Controlled Home

Leading a contented life with worsening disability depends, to a large extent, on problem-solving skills and resources. Can’t walk? Get a wheelchair. Difficulty holding eating utensils? Modify those utensils. Losing function in your arms and hands? Use your voice instead. Watch below.

If you are reading this post via email, click here to watch the video.

A big thanks to Nick Doucette, my future son-in-law, for all his help on this project.

In tomorrow's post, I’ll go into some detail about how we set this all up, fully cognizant of the fact that only a handful of you will care.

The iBot Lives!

This is the news we've all been waiting for. A little company called Toyota will partner with DEKA to develop and manufacture the next generation of iBot. Read the press release here, and be sure to watch the video embedded in the story.

To see video of my iBot in action, click here.

Travis Mills – Tough as They Come

Travis was one of those kids with a gifted body and an adventurous mind. A high school football legend, he was gregarious, kind, and fun-loving. Although bright, he had no interest in being a scholar. After a short stint at a community college, he joined the Army – a perfect outlet for his considerable energy, drive, and patriotism.

When Travis came home to his wife and daughter from his third tour in Afghanistan, he did so without his arms and legs – one of only five quadruple amputees to survive the Iraq and Afghan wars. Within months he strapped on three and sometimes four prosthetics and got back out in the world. Today, four years removed from what he calls a “bad day at work,” he lives only an hour up the road from me. He has become a motivational speaker and chairs the Travis Mills Foundation.

I meet a lot of inspirational people in my circles. Most of them have MS. I’ve even been called inspirational once or twice. Travis takes that to another level.

He co-authored a book about his life, called Tough as They Come. I read it, or rather listened to him narrate it on my Amazon Echo. Incredible story. Great read.

I wouldn’t characterize myself as Tough as They Come. I’m probably More Resilient Than Average. A new title for my memoir?

My brother, Tom, runs a company, Crooker Construction. He lined up Travis to be the surprise speaker at a companywide meeting. Knowing I was a fan, Tom invited me to the talk, along with my other brother, Andy, and our wives, Diane, Karen, and of course Kim. When I arrived at the venue, Andy and Tom ushered Kim and me into the green room, where Travis was stashed away before his turn at the podium. (That's Travis with the fake legs that work and me with the real legs that don't.)

We hit it off immediately – comparing notes about some of our favorite adaptive devices, like my iBot wheelchair and his prosthetic left arm. As I spoke with him, I could feel the positivity and energy, and it was contagious.

Travis captivated the audience. Of course his story is compelling, but he tells it skillfully, and he uses humor like a pro. At one point he dragged my brother Andy up on stage to play the straight man in one of his good-natured jokes. Throughout the talk, and I expect this to be the case in his everyday life, Travis never uttered a word of self-pity.

He gave me a copy of an award-winning documentary about his life, called Travis, a Soldier’s Story. If you can watch that without shedding a tear … I couldn’t.

I’m not easily impressed by “you can do anything you want if you just put your mind to it” stories. But Travis’s approach is so engaging I can’t help but be moved, and inspired. I recommend Travis’s book and documentary to anyone who needs a little encouragement in their life.

Letting Go (part 2 of 2)

In part one of this two-part post, I wrote about my love of handcycling, and how MS progression forced me to let it go. Never again will I feel the joy of cruising down a bike path under my own power, breeze on my face, muscles in my arms aching, blood pumping. It’s better that I experienced these sensations and lost them, however, than never to have experienced them at all. At least that’s what I keep telling myself.

I considered donating the handcycle to an adaptive sports organization, but Kim and I have a wish list of disability-related purchases we would like to make ourselves, so we decided to sell. Our advertisement explicitly stated that we would not ship this product – pickup at our house required. We needed to be sure the bike was right for whoever would be purchasing it. The last thing we needed was an unsatisfied buyer halfway across the country, or worse yet, someone who meant to resell the cycle for profit that we left on the table in good faith.

Kim and I had sold disability-related equipment online before and had dealt with scammers. Click here to read about it. Because of that experience, we planned to treat this sale dispassionately. No matter how compelling the story, we would remain skeptical.

Then Ray emailed us. He expressed an interest in buying the handcycle for his 13-year-old grandson, JJ. Ray and Mark (JJ’s father) would drive up from Massachusetts on Saturday to complete the purchase.

Upon arrival they inspected the handcycle, and it exceeded their expectations. That was enough for Kim and me. We would have been pleased with the transaction. Then Mark said, “It’s going to be a surprise for JJ, my son. He has no idea we’re getting this handcycle for him.”

“Tell me a little about JJ,” I said.

Both father and grandfather gushed. JJ was born with caudal regression syndrome. His lowest three vertebrae did not develop in vitro, resulting in limited movement in his lower extremities. He’s gone through two major back surgeries this year – the first to have growth rods inserted into his spine and the second to adjust those rods. Through it all, he has remained upbeat and positive. As they spoke, it became apparent to me that the affection these men have for JJ is not born of pity, but of admiration and love.

“We’re going to take a video when we give him the bike later today,” Mark said.

“Can I get a copy?” I asked. We exchanged contact information, and a friendship between families was born.

I took the photos and videos Mark sent me and put together this little summary of how JJ's day went.

note: if you are reading this blog post via email, click here to watch the video

I’ve written how the anticipation of losing something can be worse than the loss itself. For example, when I sensed my days of driving an automobile were numbered, I worried about how I would know when to stop and what it would be like after I did. But on the day I came home and cut up my driver’s license, I felt an overwhelming sense of relief, and I never looked back.

It didn’t work that way with the handcycle, though. I hadn’t used it in five years but had held onto it in the desperate hope that one day I might be able to improve my health enough to use it again. When I put the cycle up for sale, that signified the end of such hope. I felt only sadness, not relief – until JJ came along. Now I’ll remember this transaction as much for what he gained as for what I lost. Cycle of life?

Thanks, JJ, I hope you get as much joy out of that handcycle as I did, and more.

Letting Go (part 1 of 2)

People say you should never give up. Once in a while, however, I find that I have to let go. Last week I let go of my handcycle.

Growing up in Lincoln, Maine, I rode my bicycle everywhere. My friends and I started out with single-speed bikes. We built jumps out of cinderblocks and plywood and launched ourselves skyward. As teenagers, we graduated to 10-speed bicycles and went for long rides to neighboring towns. But once we got our driver’s licenses we couldn’t be bothered with a child’s mode of transportation any longer.

When Kim and I, in our late 30s, bought our first house in southern Maine I thought I might take up bicycling again. I bought a hybrid bike that I could use on both trails and the road. I took it out a few times but noticed I didn’t have enough strength in my legs to do what I wanted to do. Not long afterward I was diagnosed with multiple sclerosis.

A couple of years later I saw an advertisement for a handcycling symposium to be held at the University of New Hampshire. Kim and I attended, and I fell in love with the activity. I bought my first and only handcycle that same day.

I used to exercise early in the morning. When I acquired the handcycle, we lived in Cape Elizabeth, and every day before work I would either ride my handcycle or go to the gym. On my cycling mornings I would sometimes start from my house and wind through the wooded roads of Cape Elizabeth. It was not unusual for me to startle a whitetail deer or two. On other cycling mornings I would lift the bike into the back of my pickup and drive a mile or so to a neighborhood in South Portland called Knightville. From there I would ride down the Eastern Trail to Bug Light Park. Depending on the time of the year I might catch the sunrise over the ocean or at least watch the boats leave the harbor for a day of fishing. If I still wanted to get more miles in, I would ride around and around the loop in Knightville, passing by my future home on each lap.

When we moved to Scarborough, I found new routes to enjoy. I could ride to Higgins Beach, Prout’s Neck, or if I had time all the way to Bug Light in South Portland. But I also enjoyed rides in my Scarborough neighborhood.

With Mother’s Day, 2008, approaching, I had no idea what to get Mom. She was 74 years old, a quadriplegic, and going blind from age-related macular degeneration. At the last minute, an idea popped into my head. I so enjoyed my handcycling rides around the neighborhood that I decided I would try to bring my mother along, virtually. I put together this video for her: (if you are reading this as an email, click here to go to the original post in order to watch the video)

That turned out to be the last Mother’s Day present I would give her, as she passed away later that year.

Over the years my arms weakened and my rides became shorter. The summer we moved from Scarborough to the Knightville section of South Portland, 2011, proved to be my last summer of handcycling. There I was, returning to the very spot where I had started my handcycling adventures, and I no longer had the ability to ride. The handcycle went into storage.

Each year I considered selling it, and each year I decided not to. Selling would mean giving up, and I'm not supposed to give up. I thought, “If this treatment works (whatever treatment I was on at the time), even a little, I can get back on that handcycle.” But a few weeks ago I finally had to admit that, barring a medical miracle, I’ll never ride  again. I put it up for sale, and the new buyers picked it up on Saturday morning.

It was an emotional day. I didn’t feel guilty – like I was giving up. I knew it was about acceptance and moving on with life. I've been through this drill many times already. But each one of these moments, each one of these losses, takes a little part of my soul with it. The mood of the day was tempered, however, by the story of where my handcycle was going, and who would be riding it in the future.

Click here to see part two