2010 was an eventful year for me, and I commemorated it with this Christmas poem.
You may enjoy following a few of the hyperlinks for old times sake…
Merry Disabled Christmas
This year I endured disabled surgery And read disabled books I contributed to a disabled charity And thwarted disabled crooks
I sailed on a disabled cruise And piloted my disabled iBot I sat for disabled interviews And the good disabled fight, I fought
I starved myself on a disabled diet And took a disabled shot at a deer I appreciated nature, and disabled quiet And quaffed many a disabled beer
I hand-peddled my disabled bike And hand-drove my disabled van I spent disabled time with people I like And I was a loyal, disabled, sports fan
I spent too much money on disabled wheelchair parts And I made many a disabled friend I touched a few disabled hearts And a thousand disabled emails, I did send
It’s not that life is unfair As you know, I’m not one to complain You play the cards that are dealt you If you live in the jungle, you better enjoy the rain
So during this holiday season I urge you to seek out contentment Don’t spend time searching for a reason To feel self-pity, jealousy, or resentment
I’ll end my cryptic verse right here And offer this sentiment to those most dear I wish you a Merry Disabled Christmas And a Happy Disabled New Year!
During my sophomore year on the high school track team, my future wife stood out among the other freshman runners because of her blazing speed, playful personality, and nice ass.
These were the criteria I used to select my life partner. Brilliant, right?
After one date, Kim decided we would be married. Years passed before I realized the same. This has become a reoccurring theme in our marriage. She almost immediately knows what should happen next, and she nudges me in that direction until I come around.
We married in our early 20s. After trying out Ohio and Vermont, we returned to Maine to start our family. We worked hard and did our best to raise Amy and Zach, but we took some time to have fun along the way. As our children became more independent and our careers successful, we set ourselves up for a comfortable empty nest stage—our just reward.
But life is not a bank account, where good deeds deposited early in life mature into dreams realized later. Life doesn’t owe us anything. Life simply happens, and we adjust accordingly.
I am fortunate to have a spouse, best friend, and now primary caregiver as wonderful as Kim. However, I deserve no credit for this decision made so many years ago. I didn’t choose her because I thought she would make a great life partner. I already told you why I chose her. I just got lucky. Kim has a contagious passion for living and is a wonderful mom. She is thoughtful and caring, sexy and fun-loving, intelligent and determined, optimistic and industrious, loving and patient. She could have done so much better than me, but I’m glad she didn’t. It’s just another example of the charmed life I lead.
I love you Kim. Thanks for all that you do and all that you are.
Book review — SEGWAY INTO MY NEW LIFE: A Story of Diagnosis, by Meg Lewellyn
My friend Meg burst onto the MS blogging scene in 2013, not with a whimper but a bang. She calls her website BBHwithMS.com, where BBH stands for Boobs, Boots, and Hair. Although most of us write cautiously, being careful not to offend, Meg writes courageously, as if to say, “Don’t like my blog? Well, nobody’s making you read it.”
Her blunt, honest style won her a dedicated following almost immediately. Then, just to make things more interesting, she became an advocate for the use of cannabis in treating MS symptoms. She and her husband are growing their own plants and hope to help others find relief using MMJ by sharing what she has learned. She’s begun to do speaking engagements about her experiences with the plant and its medicinal properties and is eager to continue to educate people. This is such a timely topic, and she writes so well, that her blog has gone viral.
Like me, Meg decided to put her story out there in the form of a memoir. I ordered the Kindle version and read it in two days. I wouldn’t have taken so long except that people interrupted me and insisted I eat Thanksgiving dinner with them and then socialize afterward.
In her memoir, Meg uses that same, refreshing voice from her blog to tell her emotionally gripping account of motherhood, marriage, and chronic disease. Meg’s writing style pulls the reader into her narrative. By the end, you will feel you have made a new friend, someone you can root for, someone who deserves happiness.
As a fellow multiple sclerosis suffer, I identified with so many of her challenges: the trauma of diagnosis, the awkwardness of disclosure, the disappointments of ineffective treatments, and the singular drive to fight back and remain independent. Ironically, as implied in the title of her book, Meg employs a Segway device, which was invented by Dean Kamen based on what he had learned in developing the iBOT wheelchair that I’m so fond of.
I recommend Meg’s book not only for those confronted by chronic illness, but for anyone facing a life-altering challenge. You will empathize with her losses and appreciate and marvel at her determination. I couldn’t put this book down. You won’t be able to either.
Click here to purchase the print or electronic versions of SEGWAY INTO MY NEW LIFE: A Story of Diagnosis, by Meg Lewellyn.
Audiobooks Now for Sale! ENJOYING THE RIDE: Two Generations of Tragedy and Triumph
My friend, Dave King, who figures prominently in the book, helped me pull together this audio version, so that I didn’t have to invest thousands of dollars for a professional narrator in a studio. Plus, I think it’s kind of nice to have listeners hear my story in my voice, flawed as it is.
I don’t have any control of the pricing with Audible.com, so I apologize for the cost. Click here to purchase the audio version, or click the yellow banner at the top of this page.
Within a week or so I should have the audiobook, which I narrate myself, available for sale. I’ll let you know when it’s ready.
Alumnus of the Year
Each year, my college fraternity selects one person as alumnus of the year. Because of my successful book launch, they selected me for 2018.
I hadn’t been back to Phi Kappa Sigma at the University of Maine in 17 years. I joined the fraternity first semester of my freshman year, moved in second semester of my freshman year, and lived there for the remainder of my undergraduate years. The fraternity, or more precisely, the group of men I lived with, had a profound effect on me. I have remained in touch with many of them.
At the ceremony, I caught up with old friends, met alumni from different generations, and interacted with the active members. They presented me with a nice plaque, and then I gave a brief talk.
First, I had to warm up the crowd:
I know what you’re all thinking. I can see it in your eyes. You’re jealous. I have a cool wheelchair. I have a trophy wife. I’m writing books and winning awards. I can find parking at the mall during Christmas season. Well, I’m here to tell you, having advanced multiple sclerosis isn’t all it’s cracked up to be.
Then, I began telling my life story, including these highlights:
A few years after I began to have walking problems, I was diagnosed with primary progressive multiple sclerosis, a particularly disabling form of the disease. By the time I was 45, my legs had failed, and I purchased my first wheelchair. Soon afterward, my arms and hands began to fail.
After a year of traveling around the country for business in my wheelchair, I took disability retirement.
After I retired, sitting at home with nothing to do, I rediscovered an earlier love I had for writing. I started a blog called Enjoying the Ride, and in doing so I became a disability advocate, writing essays about living a contented life as a disabled person. I had feared that by giving up on my career I would be giving up on life. I couldn’t have been more wrong. …Today, I measure my impact on the world not in terms of multi-million-dollar projects completed, but in terms of the people I’ve helped. It warms my heart when I receive a note from someone who has been struggling, and has found some level of solace in my words.
And then, I felt compelled to give the undergraduates some advice:
As you venture out into the world, build a life that is both adventurous and resilient. They are not mutually exclusive. I’ll talk a little more about the resilient part and leave the adventurous part to you.
… surround yourself with quality people — individuals you can trust, people who are earnest, and people who give as much to the relationship as they take. Let the assholes go.
… Cultivate a diversity of interests.
… accept that life doesn’t owe you anything.… Life is a tournament, and you are a winner simply by virtue of being born. I consider anything after our births to be bonus time. When life doesn’t owe you anything, there is no asking “why me?” There is only “why not me?” Or “how do I adjust to my new circumstances?”
… appreciate all the good things in your life.… In difficult times, the only practical alternative is to show gratitude, to feel gratitude, for what is still good in your life.
… When things do go to hell, and they will, reach for hope, grab onto hope, but don’t depend on hope. … The challenge for all of us is to occupy that space where acceptance overlaps with hope. That’s where we can find peace and lead contented lives.
The talk was well received, and I enjoyed reconnecting with my old fraternity.
Karen’s Book Club
My brother, Andy, and his wife, Karen, recently purchased a condo in a 55+ community. Karen promptly joined their book club convinced the group to read my book. On Sunday, Kim and I made the 30-minute drive to their condo, so Karen’s book club could meet the author. Sure, I received a good dose of love and attention from these ladies, but, based on what each of them had learned about Kim by reading my book, they fawned over her. A few of them asked for pole dancing lessons (if you don’t get that reference, you haven’t read the book).
I gave a brief talk and answered questions from the 22 or so women for about an hour, until the men broke up our party and drinking and eating ensued for another hour or so. I met some wonderful people, all of whom boosted my self-esteem. I thoroughly enjoyed myself, and I was humbled that all these folks took the time to read my book and come meet me. Playing author isn’t all work.
I have strong political opinions, which I choose not to share here, so that this remains a welcome space for conservatives, independents, liberals, libertarians, librarians, Liberians, and everyone else.
My “get out the vote” message is nonpartisan. No matter whether you believe we have too many immigrants or too few immigrants, taxes are too high or too low, Trump is a breath of fresh air or the worst president ever, if you are eligible to vote, election day is your chance to do something about it, to have your say. If you decide it’s not worth your time, you have no right to complain about the government you get.
But it’s more profound than that. Sure, voting is a right that our countrymen and women have fought and died for. Sure, it’s a responsibility of living in a democracy. You already know these things. But have you considered the personal benefits of voting, win or lose? Voting is cathartic. By voting, you exercise your influence. You impose your will, if ever so slightly. The impact of your vote might be no greater than the impact of leaning hard against an iceberg. The iceberg might not move much, but when you and like-minded people push hard enough, together you make real change, and it feels good to have been a participant instead of a bystander.
So, if you don’t want to educate yourself on the issues and the candidates, and cast a vote, you’re not only letting your country down, but you’re letting yourself down. You’re passing on the opportunity to feel good about something, to have at least tried to make the world better, whatever that means to you.
Do it. Vote, then come back here and let me know how it felt.
I’m not one to spout clichés and platitudes. I’ve railed against “everything happens for a reason.” Don’t get me started on “time heals all wounds,” for obvious reasons. But the one I choose to highlight today is “there’s nothing you can’t accomplish if you just set your mind to it.”
A greater line of bullshit has never been uttered. Who are the people saying this?
1. Successful athletes while hoisting their championship trophy. 2. Successful businesspeople giving a speech to all their admirers. 3. Successful entertainers accepting an Academy/Emmy/Grammy Award. 4. Parents who are trying to provide inspiration to their small children (I suppose this is no worse than telling them there is a Santa, so I’ll cut the parents of the world some slack).
Just because the following statement is often true:
To be successful you must work hard, and you must want it bad.
doesn’t mean that this statement must also be true:
If you work hard, and want something bad enough, you will be successful.
Certainly, if you are young, bright, and determined, you have a broad range of opportunities, but it’s foolish to say that every set of skills can be molded to accomplish any set of goals. There are so many things you can accomplish, but so many you can’t, no matter how hard you try. If you’re born chubby, short, and uncoordinated, for example, you won’t become an NBA player.
Although you can’t accomplish anything you set your mind to, I offer an equally inspirational, and infinitely more useful thought:
Life presents you with endless possibilities.
Other than people in the most dire circumstances, everyone has a boundless number of opportunities, which is quite different from saying that anybody can do anything. Not all opportunities are glamorous, profound, or life-changing. Sometimes they are simple, subtle, understated. On any given day, you may pursue the possibility of getting out of bed for the first time in days, or going back to college to earn that degree, or anything in between.
So many possibilities.
No, you can’t accomplish anything you set your mind to. But you can imagine the possibilities, sift through them, choose one, and act upon it. Maybe it will be a poor choice, and you’ll fail. Maybe it will make your day just a little better. Maybe it will change your life for the better.
Life presents you with endless possibilities. That’s a platitude I can get my arms around.
If I had known when I was, say, 18, that I would be diagnosed with MS, and that I would be in a wheelchair, and that I would become a quadriplegic, what would I have done differently?
The most popular answer to questions like this is: “I wouldn’t have done anything differently.” Only liars or fools believe this. Plus, it’s not a very interesting response. Let’s do interesting instead.
Things I Would Have Done Differently, Had I Known
1. I would have purchased tons of long-term healthcare insurance, disability insurance, and life insurance.
Although this would be practical and truthful, it’s not very interesting. My apologies. Let’s try again.
1. I would have climbed mountains, jumped out of airplanes, and run marathons.
Much more interesting, but not very truthful. No, I never wanted to do those things. Let’s start over.
1. I would have made home modifications…
Dammit. Still not interesting. Maybe I need to look at it another way.
Yes, I would have done all sorts of practical things to prepare myself for what was coming. But what would I have changed about myself? How would I have prepared mentally, emotionally? Would I have become more compassionate toward the underprivileged? Would I have tapped into my creative side and started writing sooner? Would I have become more understanding, more empathetic, and less critical? Would I have begun living in the moment and worrying less about the past and the future? Would I have developed this inner peace that has descended upon me in recent years?
These are all transformations I experienced after I became disabled. I don’t believe, however, that any of these changes would have resulted merely from knowledge of what the future held. My newfound wisdom and tranquility could not have been hastened by a crystal ball. They had to be forged from everyday struggles.
So, other than a few logistical changes like insurance and house accessibility, if I had known when I was 18 what I know now, I wouldn’t have changed a thing. Using my own words, does this make me a liar or a fool? Perhaps I need to rethink that.
The fact that I lived through these changes, rather than just knew about them, made me a more interesting and grounded writer and a better human being.
Like a movie, sometimes interesting and entertaining scenes have to be cut from a book for any number of reasons. I’ll share a few of the scenes I cut from Enjoying the Ride, beginning with this one, where we go to watch a Patriots game at Gillette Stadium.
When we arrived at Gillette Stadium, I extended the ramp, exited the van, and went into balance mode – the iBot equivalent of stretching my legs after a long drive. While the others unpacked and set up, I surveyed the large handicapped parking lot that sat in the shadow of the stadium. I got the sense that most of the vehicles in this desirable parking area didn’t contain any disabled people at all. Yet, because many disabilities, including some manifestations of MS, can be invisible to the naked eye, I couldn’t know who the cheaters were. So I gave the issue no further thought as this day was all about feasting and fun.
Shortly before kickoff, we joined the throngs of people headed toward the stadium gates. On the way, I took a detour to the bathroom. As I approached the handicapped stall, I noticed the door was closed, but I couldn’t be sure if anybody was inside or not. So I reached forward and gently pulled on the door. It opened a few inches. Immediately, an individual who shall be known henceforth as the asshole, shouted “Jesus Christ!” He got off the toilet and slammed the door. Then he yelled at me, “Thanks a lot!”
Oh boy. Game on.
Let’s review. First, this non-handicapped person occupied the only handicapped stall in the bathroom. Some of my disabled brethren have no sympathy for healthy people who use our stalls under any circumstances. I take a softer position. I only feel wronged if someone uses the handicapped stall when there were other stalls he could have used instead. In this case, every urinal and stall had a waiting line. So, if not for his other transgressions, I would have waited patiently.
Second, the asshole sat down on the toilet without latching the door. When you do that, and someone opens the door, then you smile sheepishly and say, “Oops. I’m sorry. I’ll just be a minute.” But not him. The asshole yelled at me without justification. I’m a calm and understanding person, but that sets me off like nothing else. He acted as if it was my fault he had failed to latch his door.
I positioned myself so he would have to be deaf and blind (no offense to my deaf or blind friends) to not realize the person he had lashed out at was a wheelchair user who only wanted to access the handicapped toilet.
I responded to his “Thanks a lot!” in my most forceful and sarcastic tone with, “You’re welcome!”
There was silence, and I have to guess, some amount of mental backtracking by the asshole.
I folded my arms, stared straight at the door, and prepared a blistering speech in my head. But this moron did what most of them do when confronted with irrefutable evidence of their ignorance. He slithered away without making eye contact, and so quickly I couldn’t get a word out before he disappeared. I hope I ruined his day, but I doubt I did.
The Patriots beat the hated Jets 30 to 21. Yea! It was a wonderful outing – perfect weather, great friends, the electric atmosphere of an NFL rivalry game, and a home team win. But when seventy thousand people funnel out of a stadium all at once, it can become intense. I find it best to be in balance mode in these instances. Otherwise, my face is at ass level, which can be unpleasant. Also, in standard wheelchair mode I cannot see above the crowd, creating a helpless and claustrophobic feeling.
When I’m in balance mode in a situation like this – broad, flat, crowded concourses – everyone else moves in jerks and fits, but I glide along. It’s as if the floor is made of ice, and I’m the only one wearing skates. I am gawked at and revered no less than if I were a figure skater in a sequined costume, executing triple lutzes in perfect sync with the music playing only in my head.
Sometimes, though, in the helter-skelter of a mass exodus like this, the music stops. While I traveled with the crowd, another guy walked against the flow and cut from left to right. Full of myself, I may have skated too aggressively for the conditions. I hit him hard on the shin with my foot pedal. He shouted, “Ouch,” immediately followed by “I’m sorry.” I started to apologize, but before I could get the words out, he had vanished in the mob.
I encounter a lot more people like the second guy (who instinctively blamed himself) than the asshole (who instinctively lashed out). If this weren’t the case, then I wouldn’t enjoy leaving the nest and venturing out into the real world as much as I do.