Wednesday, November 30, 2016

I'm Interviewed for the Journal Nature

Here is a link to the article on primary progressive MS, where I am mentioned in the opening and closing paragraphs. I'm pleased that the author doesn't sugarcoat the outlook for people like me.

Here is a link to the larger MS supplement, which includes six other articles —a must read for anyone affected by MS.

Tuesday, November 29, 2016

Neighborhood Watch

 

As a full-time wheelchair user, and someone who no longer works, I spend the better part of each day indoors, by myself. It’s not so bad, however, because I live in a glass house.

Two sides of my living room are nothing but windows—an observatory of sorts. When my eyes are not glued to my computer screen writing, reading, corresponding, researching, or watching Netflix, I’m gazing out my windows, and I love what I see.

Wildlife

A couple of days ago, a flock of small, genetically identical, dark brown birds with white spots descended upon my lawn. Probably 200 of them. I suppose half were male and the other half female, but they all looked the same to me (is that racism, sexism, speciesism?). I didn’t recognize their classification, and I couldn’t find it on the internet. They moved about independently, randomly, at a frantic pace, feeding on invisible morsels between my blades of grass. Everything in their world occurred at hyper-speeds, a blur to our human senses.

Each time one bird violated the personal space of another, a brief confrontation ensued. Wings flapped, and some unknowable set of rules determined the winner. The victor held his ground while the vanquished was excommunicated to another part of the lawn.

Every so often, however, some outside force, something they saw or something they heard, caused every member of the flock to abandon their self-interests. They stopped feeding and squabbling, oriented themselves all in the same direction, and took flight like mindless cogs in a larger machine. They so loved the morsels in my grass, however, that after a few minutes they flittering back and once again filled the space with a buzz of random, independent activity, until the next common danger united them in flight. 

There are few analogues for this behavior in the human world. Once people start acting independently, we are loath to come together for the common good without first engaging in considerable debate, arm-twisting, and deal making. Yet here we sit at the top of the food chain…for now.

But I digress.

People Watching

Sitting in my wheelchair, peering out my windows, I’m also treated to some top-notch people watching. My neighbors Sue, Susan, and Kri walk their dogs (Jake, Rocko, and Sadie) several times a day. It’s not only dog walkers, though. All sorts of people wander down our street. Sometimes I recognize them from the larger neighborhood. Most of the time I don’t. They come in all sizes and shapes: young and pretty, old and weathered, athletic, disabled, and everything in between. Why this parade by my window? There’s an attraction at the end of my street—the Atlantic Ocean.

Scenery

Animals and people are fascinating, but unreliable. The scenery outside my house—it never disappoints. The six-foot-tall window immediately to the right of my computer screen may as well be a work of art, a painting. The lower two feet of this masterpiece depicts my front yard, the street, and my neighbor’s front yard. This is where the strange flock of birds did their thing. This is where my neighbors walk their dogs and take their constitutionals. This is where the snow piles up.


If I raise my head just slightly, I take in the next foot or so of this artwork—the ocean at the end of my street. Our corner of the Atlantic is a shallow cove, so much so that at low tide it empties and becomes a mud flat, which has a certain appeal, but it’s not as visually pleasing as the cove at high tide. Something about a basin full of water, it calls to me. When I know visitors are coming to my house, I hope for a higher than average tide. I’m pleased with the result about half the time.

Still higher in the portrait, the next foot captures the opposite shore of the cove. A well-maintained walking/biking path runs along that piece of coastline. As I watch folks make their way along this Greenbelt, I am quite certain that nobody is using it because they must, but rather because they choose to. People follow this path for the journey itself, not because they need to be anywhere in particular along its route.


And finally, the upper two feet of my window painting is filled with sky. It’s almost never the same day-to-day or minute-to-minute. I face east, so I’m treated to sunrises and often moon rises. Even though the sun sets on the opposite side of my property, it blankets my view with a soothing glow on most evenings.

So yes, I am stuck in the house, especially in the winter, but I have plenty to watch in my neighborhood, and for this I am grateful. Everyone should be so lucky.



Tuesday, November 15, 2016

Have I Betrayed My Childhood Self?

I can still remember the questions I pondered as a child:

  • What will my job be when I grow up?
  • Who will I marry? (Will she be hot?)
  • Where will I live?
  • How many kids will I have?
  • Will I grow old?  How old?
I also recall some of the promises I made to myself as a child:
  • I will become rich.
  • I will become famous.
  • Nobody will ever tell me what to do.
I didn’t keep any of those promises.

Until I left the rat race a few years ago, I sometimes felt guilty about coming up short. Today I understand that I am not beholden to my childhood self. These dreams served a developmental purpose (in order to become an adult, one must first envision it), but I shouldn't have considered them a blueprint for life. Our childhood ambitions are misguided because young people cannot grasp life’s complexities, and don’t appreciate its subtleties. The degree of wisdom necessary to do so is acquired later in life, if ever.

In retrospect, these are the questions I should have pondered as a child:
  • Will I be lucky enough to find real love? (I was)
  • Will I have my health? (I did for the first 38 years)
  • Will I lead a happy and contented life? (I have)
  • Will I have a fulfilling career? (not really, but it paid the bills)
  • Will I be a good person? (with some exceptions, I think I have been)
And these are the promises I should have made to myself when I was a kid:
  • I will not presume that life owes me anything; any positive experiences beyond being born are simply frosting on the cake.
  • I will be a lifelong learner, a rational and open-minded thinker, and a candid, yet polite, communicator.
  • I will not waste precious resources on jealousy, hatred, or revenge.
  • I will try to do my small part to improve the human condition.
  • I will not blindly adhere to hollow societal norms.   
  • I will live each day as if it will be my last.
  • I will be true to my family and friends.
  • I will be reliable and humble.
  • I will have fun, lots of it.  
  • Even when life becomes difficult, I will endeavor to persevere.
If I had made these promises to myself as a child, could I have kept them? Let’s just say that at 53 years of age, I’m still a work in progress.

If young Mitch could have peered into the future, I’m quite certain he would have been disappointed with what he saw. But young Mitch wasn’t smart enough to discern what a good life looks like. How could he have? He was just a kid.

Tuesday, November 1, 2016

Bangor Metro Magazine Features Story on Kim and Me

At the risk of over-tooting my own horn, I wanted to share with you another awesome piece of news. Bangor Metro Magazine, which services mid-coast, eastern, and northern Maine, recently contacted Kim and me for an interview. Click here to read the piece.

At one point I recount how 17 years ago my family doctor said I "probably have a good 20 years left." That was a misunderstanding which I explain in some detail in the upcoming book, so don't do the math and think that I only have 3 years left to live!

Many thanks to journalist Joy Hollowell for a wonderful article.

Click here to read.


Tuesday, October 25, 2016

Down East Magazine Publishes an Excerpt From My Memoir

I've always been a huge fan of Down East Magazine, widely considered the best magazine about life in Maine. No matter how bookish you may be, no matter how learned in the written word, it's the stunning photography that draws you into the magazine. Only after you find a comfortable spot to delve into the articles do you come to appreciate the quality of the writing. That's what brings you back month after month.

In June of this year, I took a couple chapters from my as yet unpublished memoir, blended them into a single essay, and chopped it down to meet their word limit. I submitted the essay in late June, then I pretty much forgot about it.

Two months later I heard back. They wanted to publish the piece in their November edition. Given that I had written about deer hunting with my father, the timing was perfect. They even paid me a modest sum. They didn't know (or maybe they did) that I would have paid them to print my essay. After all, their monthly circulation is about 100,000 copies.

We went through a couple rounds of editing, and the finished product is now on newsstands—Down East Magazine, November 2016 edition, page 48. The essay is entitled "Deer Spotting: A longtime sportsman faces down illness — and heads out into the field one last time."

What a thrill this has been for me.

Now, back to work on finding a literary agent for my book…


Note: As of now there is no free, public link to the story, but I'll let you know if that changes. For anyone who is interested in purchasing the November issue of Down East for $5.99, click here. To purchase a subscription, click here. 

Tuesday, October 18, 2016

As Hope Fades, I Press on: Here’s How

Hope can be an effective tool to ease human suffering. In many cases, though, it’s not enough.

After my diagnosis 15 years ago, I set out to become the most informed patient on the planet. Even though there were no FDA-approved treatments for primary progressive multiple sclerosis (and there still aren’t), I knew the answer was out there. I just needed to be smart, brave, and hard-working enough to find it. Oh, and cocky too. Every fighter needs a little swagger.

I tried chemotherapy and immunosuppressants. No luck. I self-administered daily, painful shots. Didn’t help. I participated in a clinical trial where I had to drive two hours each way, two times a month, for two years. It slowed down progression for a while; then it didn’t. I convinced interventional radiologists to thread catheters from my groin into one side of my heart and out the other, so that they could balloon supposed restrictions in my internal jugular veins—twice. In retrospect, I doubt there was anything wrong with those veins. I lobbied doctors to inject powerful medicine into my spinal cord every two months for two years. Again, helped for a while; then it didn’t. I pursued all these treatments in the hope that I might slow down, stop, or even reverse the course of my disease. Instead, I progressed from a limp to a cane to a wheelchair, and my arms and hands are headed in the same direction.

Understandably, I began to lose hope that I would ever find a medical solution. I discussed this with a well-intentioned friend who warned me, “If you don’t have hope, you have nothing, right?”

No. That didn’t describe how I felt. As hope faded, something else took over, and it wasn’t despair. I remained in generally good spirits, even though I knew I might never get better. Something more impassive, almost comforting had intervened.

Acceptance.

Where hope receded, acceptance filled the void.

It’s not that I studied the alternatives and chose acceptance as the best path forward. It lived inside me the whole time, waiting to be called upon. Perhaps I inherited it from my mother or learned it by watching her live as a quadriplegic for 39 years. No matter its origin, I was fortunate to have such a tool at my disposal. I suspect, however, that acceptance can be discovered, learned, or acquired if you don’t possess it already.

Acceptance should not be confused with surrender, although the differences are subtle. Surrender carries a negative connotation. “I give up. Do with me what you will.” Acceptance carries a neutral connotation, “If this is my life, then so be it,” or sometimes a positive connotation, “If this is my life, I will make the best of it.” In its purest form, acceptance has a Zen feel to it. You are exactly where you are supposed to be in life. Don’t fight it. Embrace it.

I don’t lament what might have been, envy what healthy people can do, or ask “why me?” I’m grateful for what I have, and I accept what I’ll never again be.

I haven’t given up all hope. I continue to keep one ear to the MS research world. In a dispassionate manner, I evaluate each potential treatment on its merits. But I don’t rely on this hope to motivate me. I’m not emotionally invested in it. I keep hope around only for practical reasons, so that I don’t miss an opportunity for a treatment that may work. There is a lot of research going on. I just don’t know if it will become available to me in time.

Hope is the much sexier cousin to Acceptance. Hope can produce spectacular results. Books and songs have been written about the power of Hope. Acceptance does its work anonymously. The results, important though they may be, don’t garner much attention, save for this obscure essay. Although it may seem counterintuitive, I find that hope and acceptance work together quite well.

For my healthy and disabled readers: how do you manage hope and acceptance in your lives?

Wednesday, October 12, 2016

My Daughter’s Wedding

Three dates I'll always remember:

On October 22, 2001, I was diagnosed with MS.

On July 11, 2008, I started using a wheelchair.

On August 20, 2016, I walked my daughter down the aisle.

People from all over the country descended on Hardy Farm in Fryeburg, Maine, that weekend. Dave and Stephanie King, who got married in our backyard last summer (click here), flew in from Las Vegas. More on Dave later. Kim’s brother and his family drove from Michigan. No less than five of our friends pried themselves away from Cleveland, where the celebration of the Cavaliers' NBA championship was (and is) still going strong, to visit the woods of western Maine. Folks from every corner of New England also made the drive.

Just like last summer, my brother Tom officiated the ceremony. One of the difficult decisions Amy and I had to make was whether I would attempt to walk her down the aisle. Given the rustic setting of our venue, we would be navigating up a grassy hill, over a footbridge, around a stump, and through the dirt to get her where she needed to be. For the past couple of years, I’ve been crossing my fingers that my iBOT wheelchair would still be operational on August 20, 2016, and it was. Still, we worried that Amy’s wedding dress train would get caught up under my wheels. I really wanted to walk her down the aisle. It’s something every father dreams of. Imagine, if you will, how it might feel for someone in a wheelchair.

Amy had put me in charge of writing the ceremony. Leading up to the rehearsal on Friday afternoon, she and I were still tweaking the script, and we needed to make a decision. A crowd of people had gathered in the kitchen where I had my computer set up, so I pulled Amy aside.

“I would love to walk you down the aisle tomorrow, but …”

“Absolutely. Let’s do it. I’m only going to wear my wedding dress once. I really don’t care if it gets run over.”

I burst into tears of joy and buried my head in Amy’s shoulder. Just kidding. I was thrilled, though. I may have cracked a smile.

Everything proceeded wonderfully for the rest of the weekend. After the ceremony, Kim said Amy's train came so close to my wheels that she couldn’t understand how I didn’t run over it. Amy and I had kept our gaze on the altar, so we oblivious. Had such a calamity occurred, we would have laughed it off anyway.

Back to Dave King. On July 5, 1986, about 30 years ago, he sang a song at our wedding reception—Landslide by Fleetwood Mac. Amy appreciates history and tradition, so she asked Dave to sing the same song at her wedding. Here’s a video showing a little from both of those performances. Remember, the video of 1986 is from a 30-year-old VCR tape recently digitized, and the 2016 song was shot by Stephanie using a smart phone from about 30 feet away. However, the message of friendship spanning decades and generations couldn't be more clear.



For those of you receiving this through email, please click here to watch the video.

And here are a few more photos from Amy’s wedding. Click on individual pictures to enlarge them.









Kim and I being introduced…




 Kim's father quite ably stepped in for me
 on the father/daughter dance…



Tuesday, October 4, 2016

The Parable of the Farmer and His Four Sons

Once upon a time, in a faraway land called Happy Valley, there lived a good and honest sharecropper, his wife, and his four capable sons, who were actually two sets of twins. One set of twins, sturdy and strong, could stand up to anything. These brothers were so in sync with one another that many considered them to be joined at the hip. The other twins, less strong but more agile, were best suited for complex farm chores. They worked hand-in-hand to assist the Farmer.

One year, at harvest time, one of the sturdy and strong sons grew tired and listless. At harvest time the next year, his twin began to feel the same way. They continued to get weaker until after a number of years they became lame and could not help out with the farm work at all. Luckily, the other set of twins remained healthy and used their agility to keep the farm going.

But this didn't last. Eventually, one of the agile twins began to feel weak, just like the sturdy twins had years earlier. And, sure enough, after one more season, the other agile twin followed suit. Everybody slowly got worse over time. Today, the formerly sturdy and strong twins, who could stand up to anything, can't move at all and must be carried everywhere. One of the agile twins is in the same boat. The other agile twin is hanging on, but getting more lame every day.

Today, the Farmer relies on the semi-lame, agile twin and the goodwill of the farmer’s (lovely) wife to fertilize the soil, plant the seeds, and harvest the crops…of life.

To be continued.

Cast of characters:

The sturdy twins – my left leg and my right leg
The agile twins – my left hand and my right hand
The Farmer – me

The moral of the story:

When things start to fall apart, you better make the most out of your remaining assets, and you better have a steadfast support system. “Buying the Farm” is to be avoided until all other avenues have been thoroughly exhausted.


(If you remember this story from its initial run in 2011, thanks for sticking around so long.)

Wednesday, September 28, 2016

I Lost My Ice Cream Cone Mojo

One reason I love summer is ice cream cones: soft serve, hard, even frozen yogurt. But it takes a certain amount of dexterity to eat a cone. Not only must I hold it in my hand and bring it up to my mouth, but I have to rotate it every once in a while, or the ice cream will drip off one side. I noticed a few months ago that the rotating part had become difficult. I cut way back on my consumption this summer because I lost my confidence. I lost my ice cream cone mojo.

Here in Maine, fall is settling in. On the way back from running errands with Kim last night, we drove by Dairy Queen, and I felt the urge to get my last cone of the season (man-child that I am). Kim rolled her eyes at my request, but she pulled in and ordered me a small chocolate soft serve (kindhearted woman that she is).

Mmmm. It tasted so good. After I had taken a couple of licks, it was time to spin the cone to the other side. Nope. Didn’t happen. Couldn’t happen. My fingers just can’t pull off that maneuver anymore. Kim wasn't able to help me because she was already driving and texting and had a cone of her own.

Just kidding. She didn't have a cone of her own.

No, seriously. She did have an ice cream cone but she would never text and drive under any circumstances. She can, however, text and eat, text and drink, text in a clockwise direction while rubbing her belly in a counterclockwise direction, and I'm quite sure she can text and sleep.

Anyway…

Because this was a small cone, I managed to get the ice cream down to the level of the top of the cone without ever rotating it, but it wasn’t pretty. At that point, I gently bit the cone, supported it in my mouth temporarily, then rotated my hand a few degrees. I managed to spin the cone 360° in the series of about six bites. I did this at two levels until the cone was down to the bottom section. Then, I executed the grand finale of ice cream cone consumption. I stuffed the bottom of the cone into my mouth all at once. By then, the ice cream had melted the perfect amount, and it occupied all of the honeycomb-type spaces in the base of the cone. If someone opened an ice cream stand and served nothing but the bottom inch of the ice cream cone, I would be their most dedicated customer.

In the grand scheme of things that I’ve lost—walking, typing, driving, etc.—eating an ice cream cone is relatively unimportant. Plus, there are still several other ways I’ll be able to satisfy my occasional ice cream urges. It’s that last inch of the cone, however, that I’m going to miss. There’s only one way to get there, and I can’t do it anymore.