Monday, December 28, 2015

White Christmas? No Thank You

I get it. Global warming might be the most serious threat facing humanity in the long-term: coastal cities underwater, extreme weather events, the elimination of the Arctic and Antarctic ecosystems. What a terrible thing. Worse than terrorism, texting and driving, and Donald Trump combined.

And yet, when we experienced record warmth on Christmas Day in the Northeast, I couldn’t help but smile. I have an excuse, however, an exemption. I’m a wheelchair user in a walkable neighborhood, and the longer we go without snow, the more mobile I am. The more mobile I am, the happier I am. When I’m happy, I smile. I am essentially smiling about the destruction of the planet. Good thing for the exemption, or I might feel guilty.

On Christmas Day, I left the door open to our back porch for the first time in a couple of months. I went out onto my deck, down the sidewalk, into the street, zipped past my neighbor Susan’s house and arrived at the ocean. I sat by the shore with no jacket. Phoebe barked at me for leaving her behind – normal summer stuff.

So, if it was up to me, and I had the power to stop global warming, would I? Yes, I’m pretty sure I would suck it up and do the right thing for the world. I’m such a softy. But, while I officially hope the climate returns to normal and the planet survives, I can’t suppress my smile when the grass is green – it’s not even brown – in my front yard in December.

I’m unsure how the future will play out. In one scenario, the planet will remain habitable for humankind. In the alternative scenario, I will be able to wheel my way to Friday happy hour at the Snow Squall all winter long. Either way, I win.

Monday, December 21, 2015

Talking With Your Hands

Most of us don’t appreciate the extent to which we talk with our hands. It’s an unconscious thing.

I’ve noticed a couple of instances lately, where people talk with their hands and are almost powerless to stop. The first: my physical therapist. He is a great guy, a top-notch PT, and a delightful conversationalist. But it’s nothing short of comical when we become engaged in a deep conversation. He wants to continue manipulating my shoulder joint to alleviate discomfort, but he also wants to respond to what I’ve said, and he can’t do both at once. He’ll silently manipulate for a couple of seconds, attempt to say a few words, stop manipulating so he can speak freely using his hands, realize that he’s not manipulating anymore, put his hands back on my shoulder, rinse, lather, repeat. I only laugh at him on the inside.

The second person: my wife. Fresh from a PT session, Kim recently drove me to my monthly writers’ club meeting. She had an exciting day at work and communicated as much to me in an animated manner. Her hands kept flying off the steering wheel so she could talk. I told her the funny story about my PT and begged her to keep her hands firmly in place. She did, but I’m sure it’s not a permanent fix.

I can’t remember if I was a hand talker in the past. If the stereotype about Italians is accurate, I probably was. But I’m clearly not anymore. I make no wasted, unconscious movements with my hands. No fidgeting. No fingernail chewing. Any movement takes planning and effort, so I’m aware of when my hands are in motion, which isn’t often.

However, if I watch you feed your one-year-old child spoonfuls of puréed carrots from a jar, I’ll open and close my mouth in unison with her. That can’t be helped.

Tuesday, December 15, 2015

Aging Before Your Eyes

I have so many photos, I wanted to do something fun with them for the blog. I made this slideshow to demonstrate, in just over one minute, how I've aged in the last 52 years. I hope you find it entertaining.

For what it's worth, I was diagnosed with MS at age 38, or 56 seconds into the video.

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

Tuesday, December 8, 2015

Amazon Echo

I may have a problem.

It started innocently enough with my first cell phone. Back then we called it a bag phone or a car phone. Now I have a few more high-tech toys:
  • Plasma TV in bedroom
  • LCD/LED 3-D TV in living room
  • Chromecast module for living room TV
  • Slingbox so I can watch my home TV from anywhere in the world with an Internet connection
  • DirecTV satellite television contract with four receivers
  • Harmony universal remote control
  • desktop computer in bedroom, with Dragon NaturallySpeaking voice recognition
  • laptop computer in living room, with Dragon and a second monitor
  • iPad mini, with Siri voice recognition
  • iPhone 6 plus, with Siri
  • Apple Watch, with Siri
  • I also have a Blu-ray player, but I can’t remember the last time I used it
  • and my newest addition… Amazon Echo, with Alexa voice recognition
What is Amazon Echo?

Kim and I visited our friends Darcy and Tim one evening last week. Tim demonstrated his Echo for me. I immediately turned to Kim and said, “I need one of those for Christmas.”

Tim continued to show off his Echo, and before long I adjusted my thinking. “Nevermind Christmas. I need one of those tomorrow.” And I got one the next day.

So, what does it do?

Echo is a combination of a Siri-like device; a high quality, compact speaker; and a smart home controller. I can interact verbally with Echo from anywhere in the living room/dining room/kitchen area. If I leave the bedroom door open, I can even direct her from there. The Echo device has a name, and it is Alexa.

I have Alexa play music from any of several accounts such as Pandora, Amazon Prime music, or my own song files. She manages my To Do list and my shopping list. I set timers and alarms. I listen to radio stations. She can read books to me. I ask all sorts of questions about sports, news, weather, etc., just like with Siri. And, as soon as I buy some interface devices, I’m going to have her start turning on lights and other electrical switches for me. If I do that, goddamnit, I’m calling it a medical expense and deducting it on my taxes!

How is Echo working out for me?

I find Echo to be both an awesome way to feed my need for tech, and yet another voice-activated tool for people who have trouble using their hands – people like me.

But things are getting confusing at my desk. When I send texts using my phone, I employ Siri. When I use my computer, I employ Dragon. For the Echo, it’s Alexa. Each one of them has a slightly different protocol, set of rules, for how to communicate with them. I sometimes find myself speaking Siri to Dragon, or Dragon to Alexa, well, you get the picture. In fact, in the drafting of this blog post, poor Alexa tried to help me out every time I uttered her name to Dragon. Now I feel I owe Alexa an apology. Oops, I did it again.

Yeah, I think I have a problem.

Tuesday, December 1, 2015

We Need Help

Kim holds down two full-time jobs: guidance counselor and caregiver. It would be nice to have somebody come in and take care of me one or two mornings a week, to lighten her load. But these people are expensive. I’d heard of programs that provide financial support for home care, but I needed help navigating that landscape. I decided to consult an expert.

Kim and I made an appointment with an attorney who specializes in elder law and people with special circumstances like mine. Susan understands all the ins and outs of obtaining services. She has experience helping clients restructure assets and income in such a way – a legal way – as to maximize potential benefits. One of first questions I asked Susan concerned ethics. I wanted to know how I could justify jumping through hoops to “beat the system?”

Susan asked if I had ever employed strategies to lower my income tax burden.
“Of course I have,” I answered.

This is no different than that. Also, the legislative bodies and government agencies that create and administer these laws understand people are taking steps to maximize their benefits and minimize exposure of their income and assets. We’re not exploiting loopholes. We’re playing by the rules, in the open – no apologies necessary.

I can live with that, I think.

Kim and I went over our finances with Susan: savings, investments, life insurance, other liquid and nonliquid assets, income, debt, etc.

We identified our concerns. Short-term, we need help in the home. Additionally, we want to be in a position where if I need long-term care, it doesn’t deplete our assets any more than absolutely necessary.

Susan went over the options. So many options. Long story short, there is no scenario where we qualify for financial assistance toward in-home help. Therefore, there is no scenario where I have to wrestle with ethics. This finding didn’t render the consultation a waste of time and money. We needed to know. Now we do. If we want these in-home services, we’re going to have to pay for them ourselves. Fair enough. We’ll start with a few hours a week to see how it goes.

If I end up in long-term care someday, Susan outlined steps we can take to minimize the impact on our overall financial well-being. I may start taking some of those steps now, just in case.

The idea of someone from outside coming into our home feels odd. The thought of having a stranger attend to my personal needs makes me uncomfortable. But my mother did it for almost 40 years; I grew up with helpers in the house. Once we get used to it, we’ll probably wonder why we waited so long.

Tuesday, November 17, 2015


A couple of years ago my eye doctor diagnosed me with chronic dry eye syndrome. “No problem,” he said. “Just use these eye drops every few hours and you should be good to go.” But there was a complication. I’m physically unable to put drops in my eyes, and I’m alone much of the day.

I attended a writers’ conference. In one of the sessions, participants were asked on several occasions to write short responses to prompts. But there was a complication. I can’t write or type, so I dictate to my computer. How could I dictate to my computer when everyone else was silently writing on paper or typing on their laptops?

Kim won a radio call-in contest – not an uncommon occurrence – for a concert at the Verizon Center in Manchester, New Hampshire. But there was a complication. The tickets were not for wheelchair accessible seating.

I could go on. Everyone has complications in their lives, but disabled people can’t seem to get away from them. Nothing is simple and straightforward. It takes a positive attitude to avoid saying, “screw it,” and just sitting there and binge watching episodes of Breaking Bad.

With the eye drops situation, I did some research and found an alternative treatment for dry eyes – tear duct plugs. I had them installed yesterday. Maybe they’ll work, and maybe they won’t, but it feels good to give something a try. I advocated for myself, and pushed my doctor, and I may have found a way to overcome this complication.

At the writers’ conference, I asked, “Is there a private area nearby where I could set up my laptop and microphone, and complete these writing assignments by dictating to my computer?” There was. All I needed to do was ask.

After Kim won the concert tickets, she called the Verizon Center. They said they would find us some wheelchair accessible seats when we got there, and they did. We had arrived early to make sure we ironed out this issue, and so we had some time to wander aimlessly around the venue. I was in balance mode in my iBot wheelchair when we went by an indiscriminate door being guarded by two venue employees. One of them took an interest in my iBot, and we made small talk for a few minutes.

“By the way, what’s behind that door?” I asked.

“It’s the VIP box.”

“How do we get in there?”

“You need special tickets.”

“Can we just go in and have a quick peek?”

“Tell you what, I think there’s room for two more people in there. Enjoy the show.”

Not only was our complication eliminated, but because we made friendly chit-chat, we enjoyed a serious upgrade.

Moral of the story: with patience, determination, and imagination, disabled people can overcome many of life’s complications.

One last example: a group of friends wanted to go skiing. There was a complication. I’m in a wheelchair. They did some research, and I could spend the day in the care of a handicapped skiing organization. I had no desire to participate in handicapped skiing. I told my friends I would not be going, but thanks for thinking of me.

Moral of this story: if there are hoops you just don’t want to jump through, if there are complications you simply choose not to overcome, there is no shame in watching a few episodes of Breaking Bad.

Tuesday, November 10, 2015

I Don’t Wish to Have My Old Life Back

People with MS often lament, “I just want my old life back,” but I’m pretty sure I’ve never uttered those words.

As disheartening as it is to suffer with this disease, because of my struggles I’ve grown emotionally, and I’d rather not go back to the person I used to be. I’m better than that. I’m more empathetic and thoughtful. I’m tougher than I ever was. I like this version of me more than the old one. So, if I were to become nostalgic, it would be along the lines of, “I just want my old body back.”

But I don’t say either of those things, because I spend almost no time thinking about what used to be or what could have been. That type of sentimentality only undermines my happiness. I expect that most folks who find themselves longing for their healthy days understand that it’s not time well spent, but they can’t stop themselves. I’m lucky. Because of DNA or the example my mother set for me, or some of both, I’m disinclined to go to a place of regret or mourning.

I’m not without angst, though. When I imagine a better life, I think, “I just want my disease progression to stop.” I know I can handle this, but despite my best efforts to stay grounded, I sometimes agonize about what is yet to come.

Other than these occasional lapses, I spend most of my time in the moment, as the Buddhists like to say. Here, I am neither saddened by what could have been nor frightened by what might yet be. Give this a try, and you may find a measure of contentment. I have.

For Joe

Tuesday, November 3, 2015

Offering Help to a Disabled Person

My friend and fellow blogger, Stephen, recently posted Disability Etiquette Tips. Number three on that list read:
“Don’t assume that because a person has a disability, they are in need of assistance. If a person appears to need assistance, ask first.”
That’s some solid advice for muggles. Here's some advice for the disabled:

To a great extent, you are in charge of these situations. The bystanders are uncomfortable, uninformed, out of their element, and looking for guidance. Take charge and guide them.

People desperately want to help, and they typically fall into one of three categories:

This porridge is too hot: They help without asking. They over-help. When you encounter this variety, using a pleasant but firm voice, say something to the effect of, “Thank you so much for offering to help, but it’s important to me that I do this myself.” Don’t just sit there and let them make you uncomfortable.

This porridge is too cold: Due to an irrational fear of offending, they don’t offer to help, and may even appear disinterested while you struggle to get your coat on. But if you need help, and you can get their attention, ask them. They almost always jump at the opportunity.

This porridge is just right: They ask if they can help and respond accordingly. Be thankful when you encounter this variety.

No porridge at all: They are lost in their cell phone, and you’re invisible to them. Typically 25 years old or younger.

Kim is my blog proofreader. Her comment on this post was, “If you are employing the Goldilocks and the Three Bears analogy, does that make you Goldilocks?”

“Shut up. I am not Goldilocks.”

“Are too.”

“Am not,” and so forth, long into the night.

Tuesday, October 27, 2015

Learning the Craft

I’m doing everything I can to learn the craft of memoir writing, short of going back to college. I may have only one book in me, and I want to get it right. A couple of months ago, I found the perfect opportunity.

Monica Wood is a beloved Maine author, writing instructor, and now playwright. She has published seven books, and her eighth will be released in April of 2016. I devoured her memoir, When We Were the Kennedys, and became a fan. After I saw her play, Papermaker, this summer in Portland, my admiration grew all the more. When I learned that Monica would be teaching a two-day seminar on memoir writing at the 2015 Harvest Writers Retreat, I couldn’t sign up fast enough.

Although I am in no way comparing myself to Monica, my memoir will have some similarities to hers.

Her memoir opens with a description of Mexico, Maine, the mill town where she was born and raised. Mine opens with a description of Lincoln, Maine, the mill town where I grew up. Her father worked at the Oxford Paper Company. My father worked at Lincoln Pulp and Paper. In her memoir, tragedy strikes the family during her childhood. In mine, yeah, tragedy strikes in childhood.

Another odd coincidence, which I don’t write about in my book, is that I worked for a time at the mill in Rumford, Maine, the same one Monica grew up near (I think it’s silly that Mexico and Rumford are considered two different towns). Of all the places in the country I could have interned at in 1984 and 1985 when I was a chemical engineering student at the University of Maine, I landed at the Rumford mill. So, for all of you card carrying members of the everything happens for a reason club, I was perhaps predestined to attend this seminar. I’m not a member of the club, yet I must admit these peculiar connections keep wriggling their way into my life.

The conference took place last weekend at a lovely old resort in Kennebunkport, Maine, called the Colony Hotel. It’s a lot of work for Kim and me to stay in a hotel. So, given that this was only a forty-five-minute drive from our house, Kim shuttled me down and back each day. Before the conference, I worked on accessibility issues with Josh Bodwell, Executive Director of the Maine Writers and Publishers Alliance, the organization that hosted the event. Because of Josh, Monica, the hotel staff, the other course participants, and most of all Kim, I didn’t encounter any significant access issues.

On Saturday morning, Monica taught us techniques for crafting prose that is unadorned yet compelling. I’m already in the process of combing through my manuscript, page by page, and applying these principles wherever I can.

On Saturday afternoon, I sat with Monica one-on-one and laid out the structure of my book for her: the basic story line, the order in which I present the material, the complicating event, the climax, etc. I wasn’t surprised when she suggested a change that would improve the readability of the manuscript. I made the modification that evening, and it worked beautifully. But we weren’t done.

On Sunday morning, we focused on structure, the same issue we had touched upon Saturday afternoon, but in more detail. Each of the twelve students identified twenty scenes from their book and wrote a name for the scene on a Post-it note. We then placed the Post-it notes on large sheets of paper in a way that identified the flow of our books, the structure. I was impressed with my classmates. Mine was not the only moving story in the group. One by one, Monica led us in a discussion and critique of each student’s memoir structure.

Yup, more changes for me, and I couldn’t be happier.

This conference provided just what I needed, just what my book needed. I can’t say enough about Monica’s teaching style. She possesses a rare combination of knowledge, enthusiasm, and the ability to connect with students. If I hadn’t attended this conference, I would have considered my book nearly complete. Now, because of what I’ve learned, I’ll be writing and revising for a bit longer. There's nothing I'd rather be doing.

Note: You can see by the cover sketch at the top of this post, I'm going with The Apple Didn't Fall… for now. I've changed up the subtitle, so it reads The True Story of a Mother and Son's Mutual Suffering and Shared Resilience, but I think there's still room for improvement. Please give me suggestions in the comments below or by emailing me here.

Wednesday, October 14, 2015

I Know Things

I know I can become a better person.
I think I’m on the right track.

I know I can lead a contented life, given my current circumstances.
I don’t know if this will always hold true.

I know democracy is superior to every other form of governance so far conceived by mankind.
I hope we discover an even better form – a government based on thoughtful, intelligent discourse rather than mind-numbing political rhetoric.

I know one day we’ll cure MS.
I fear it will be too late for me.

I know Lance Armstrong cheated in a big way.
I’m pretty sure Tom Brady didn’t cheat in even a small way, because he said so, and he’s freaking Tom Brady.

I know that I if I write a little every day, I’ll finish my book.
I wonder, though, if I’ll ever consider myself a writer.

I know questions of a moral nature are best resolved by choosing the path that maximizes human well-being.
I believe, eventually, this concept will win the day.

I know I love my wife more than anything.
I hope she understands this, even if I don’t say it often enough.

I know that tomorrow the sun will rise in the east and set in the west.
I still believe each day has the potential to be amazing.

I know that, like everybody, one day I’ll die.
But I still have a lot of living left to do.

What do you know?

Tuesday, October 6, 2015

My Crystal Ball

How many times have you wished for a crystal ball? It's human nature. We long to know what the future holds.

But what if you already understood that your prospects were bleak? Would you want to know how bleak, or would that serve no useful purpose? Unfortunately, I'm not given a choice, because my crystal ball shows up once or twice a year, and when it does I am powerless to look away.

I don't get very ill, very often. But occasionally I come down with a fever that lasts twenty-four to forty-eight hours, and it knocks the crap out of me. That’s because when my body temperature rises, my already frayed nerves conduct electrical impulses even more poorly (talk to an electrician if you want to understand that), and my MS symptoms become aggravated. This is a temporary and reversible phenomenon. No damage is done.

I've learned that this short-term condition foreshadows what my everyday condition will be after another six months or year of disease progression. It’s my crystal ball. I'd rather not peer into it. The future is never rosy.

This past weekend, I dealt with a low-grade fever. I experienced how much more difficult routine tasks like playing cards, mouse clicking, eating, and drinking will be next year. I won’t lie; it was unsettling.

But a strange thing happened when my fever retreated yesterday, and the crystal ball disappeared. I stopped lamenting my uncertain future and regarded my current normal with renewed appreciation. Living in the moment.

I know most of you prefer the upbeat blog posts, but I think it’s important that I am honest with you. As a reward for your having read this solemn note, I'll give you an upbeat ending.

Maybe, one day, my crystal ball will be wrong. Maybe Biotin, Ocrelizumab, or something else will make a difference. I'm not counting on it, though.

Not upbeat enough for you? Okay, how about this ending?


Tuesday, September 29, 2015

Apple Listened

According to Financial Times, Apple is the largest company in the world. They’re not some nebulous conglomerate like Berkshire Hathaway, the fourth largest company. Everyone knows what Apple makes, even those who don't use their products. Given Apple's size, when they release a product that provides functions A, B, and C, and you want a function D, it would seem unlikely you could get your idea implemented. Hold that thought.

As I wrote about in a previous post, I purchased an Apple Watch so I could, among other things, call for emergency help using voice only, if I found myself in a position where I couldn’t reach my iPhone. I was disappointed when I conducted a test 911 call, and the Apple Watch informed me that this function was only supported by the iPhone.

I contacted Apple, and they helped me come up with a workaround so that I could call 911 by pushing a couple of buttons on my watch. This was better than nothing, but I still wanted true hands-free, 911 calling. Already, I have limited use of my hands because of advanced multiple sclerosis, and I don’t want to rely on them in an emergency. The person I spoke to at Apple, a senior advisor named Melanie, said that the Apple software engineers liked my idea of providing hands-free 911 calls on the Apple Watch. She asked me to fill out a customer feedback form to initiate that software upgrade. I did as asked, and I waited for the next software revision. Would I be heard?

Last week, I updated my Apple Watch software to OS 2. Afterward, I called the local police nonemergency number and set up a test call to the 911 dispatcher. I said, “Hey Siri, call 911.”

A few seconds later…

“This is 911. What is the address of your emergency?”

“This is Mitchell Sturgeon making my test call.”

“I can hear you loud and clear, Mr. Sturgeon. Have a nice day.”

“Thanks. You have a nice day as well.”

Not only did the 911 dispatcher hear me loud and clear, but so did the largest company in the world, and I am safer today because of it. Thanks, Apple.

Monday, September 28, 2015

Big, Big News in Treatment of My Type of MS: Ocrelizumab

Genentech’s Ocrelizumab First Investigational Medicine to Show Efficacy in People with Primary Progressive Multiple Sclerosis in Large Phase III Study.

Click here to read

Tuesday, September 22, 2015

It Feels Good

I’ve written here before about how good it feels when somebody tells me that my blog has helped, that I’ve made a difference. Recently, I was able to help out in a different way.

My friend Margo’s knees are shot. They have been for a long time. She gets around with crutches while awaiting knee replacement surgery on both sides. Now her arms and hands are taking a beating from the crutches (notice her right hand in the photo to the right). She needs a power wheelchair for a couple of weeks before surgery, and then for a few months after. Her insurance company agreed to pay the rental costs. But Margo became frustrated with her attempts to find a rental chair and called upon me for help. Smart girl.

I tapped into all of my resources and came up empty. I have a backup, power chair of my own, other than my iBot. I told Margo that if we couldn’t find a rental chair for her that she could use mine. It might become tricky, however, if I need to use the chair or if the chair needs repairs. Late last week, I gave up on the rental option and determined that the only way for Margo to get a chair was to use mine, so Kim and I brought it over to her. She lives only a couple miles away, in a downtown area, in a wheelchair accessible apartment. Smart girl again.

I showed Margo how to operate the chair. That took about two minutes. She drove off into the sunset (so to speak), and we waved goodbye. The next day I emailed her to ask how it was going, and this was her response:

I just got back from my first roll around the neighborhood and it was MARVELOUS!  I window shopped and just looked at things I haven't been able to notice ever since I moved here.  And I didn't have to ice the knees when I got home!  I am so happy!   Thank you so much!

Ah, the joys of mobility!

On Monday, things got even better. I received a call from one of my contacts, and they have a rental chair available to Margo. Now she can take advantage of that option, and we’ll both have my chair as an emergency backup.

Some days I feel like such a burden, especially to my family. So it’s particularly rewarding when I’m able to use my experience with mobility issues to help someone out. I can’t wait to see Margo walking with her new knees.

Tuesday, September 15, 2015

Working Title and Cover Layout for My Book

I teased you a few of months ago when I wrote that I had a working title and cover idea for my book. I actually have four title ideas, which are slight variations on the theme pictured to the right. The only differences are the wording and the punctuation at the very top. I am soliciting your feedback on whether you like the title and cover concept at all, and if so, which of the four options you prefer. But first, for your reading pleasure, the updated synopsis and a short excerpt:


Paralysis can strike without warning – one moment you’re a dynamic and independent person and the next, a quadriplegic. That’s what happened to my late mother when she crushed her cervical spinal cord at the age of 35. But sometimes paralysis chips away at your movements, a tiny bit every day, until you become locked inside the useless shell of a body. That’s what has been happening to me since an aggressive form of MS began to ravage my cervical spinal cord. Although we followed different paths, we ended up at a similar place.

In a straightforward, irreverent, and sometimes inspirational manner, I tell the story of a mother and son’s mutual suffering and shared resilience. I revisit a childhood growing up with my extraordinary mother then take the reader on a journey through more than a decade of my adult life spent battling primary progressive MS.

My mother prepared me for challenges we could never have imagined I would face. And through the writing process I grew closer to her by finding new meaning in the legacy she left behind.

Excerpt from Chapter 1 – The Birch Trees

Parents raised their children differently in 1969. At the beginning of the summer, Mom told me, “You can go anywhere on the street until suppertime.” It was a big street for a five-year-old. 

One day, I grabbed a hatchet from the garage, went to the far side of the field behind our house, and chopped down a medium-sized white birch. It dropped into the field. I placed the hatchet back in the garage and burst into the house, more than a little pleased with myself. Mom had already seen my handiwork from the kitchen window.

With arms folded across her chest, but an amused look on her face, she said, “Oh, Mitchy, you can’t do that. It’s not our property.” This detail concerned her more than my having brandished a sharp instrument and felled a tree without gloves, safety goggles, hard hat, adult supervision, or a Forestry degree from an accredited university.

My shoulders slumped, and I wondered how much trouble I was in. Mom said, "Don't worry. I won't tell Dad about the tree, and neither should you." She patted me on the head, but I still felt awful for what I had done.

My parents served these opposing roles in my life – disciplinarian and protector. As a child, I didn't like to try new foods, and my mother accommodated me. Once, Dad became so fed up with my fussy eating that he pointed his finger at me and declared, "You will sit there until you eat those green beans. I don't care if it takes you all night."

Nothing in this world could have made me eat even one of those slimy, green snots. I remained closemouthed until Dad went to bed. Mom picked up the beans, threw them away, and whispered, "We'll just tell Dad you ate them all, but you still don't like them." As an adult, I enjoy a wide variety of foods, but I won't touch green beans. Dad is long gone, but I refuse to capitulate.

Book Title and Cover Design

The title and artwork idea came to me in the middle of the night. The next morning, I asked Kim if she could draw it for me. She said, "I can't, but I know a sixth-grader, Devan, who probably can."

Devan did a great job producing the basic sketch, which I modified only slightly and added the captions to in Photoshop. I have a professional artist ready to go with this idea if I like it enough. I need your help to determine if I do.

Please respond to the poll on the top right of this page, entitled, Which Title Do You Prefer? But also give me your thoughts in the comment section or in whatever way you prefer communicating with me. If you are receiving this post as an email, click here to go to my webpage where you can vote on the top right.

Here are the title/cover ideas:

Option 1

Option 2

Option 3

Option 4

Option 5 – none of the above

The editing of my book continues in earnest. I expect to finish the manuscript in the first quarter of next year and then begin the long process of shopping it around. It’s conceivable that I'll publish in 2016, but it could slip into 2017.

Wednesday, September 9, 2015

Memories: Watching TV with My Mother

note: for those of you receiving this blog post as an email, click here to go to the original post to view the embedded videos.

As most of you know, my mother became a quadriplegic due to a spinal cord injury when I was five years old. She lived forty more years. Mom never complained, and she lifted the spirits of anyone who spent time with her. One of the ways I spent time with her as a child was watching television.

There were three shows that she loved, and they shared the common thread of a talented, funny, leading lady. It started with Lucille Ball, and the I Love Lucy show. That show ran from 1951 until 1957, before my time, but we could find it in reruns through most of my childhood. Lucy got herself into a hilarious predicament every episode, and my mother never failed to laugh at her. Neither did I. Perhaps her most famous scene was at the chocolate factory:

The second program my mother loved was the Carole Burnett Show. This comedy-variety ran from 1967 to 1978. Carole was the leader of a troop of comics such as Harvey Korman, Tim Conway, and Vicki Lawrence. They would perform skits each week. Some of them were one-of-a-kind’s, and others were of the serial variety. Again, Mom and I would laugh throughout. Our favorite part was an unrehearsed question and answer segment with the audience at the start of most shows. Carole was quick on her feet, essentially performing improvisational humor. She also had a nice voice. Below is a video of how she ended each episode.

And finally, my father joined my mother and us kids to watch All in the Family, which ran from 1971 to 1979. Here's the opening song:

This show was different from the other two, in that it was a mixture of comedy and serious political and social satire. Archie Bunker was the lovable bigot. He was a right wing conservative before they were called right wing conservatives. His wife Edith, who he referred to as Dingbat, was the quiet and submissive wife, except for those few times when she wasn’t. Archie’s nemesis was his son-in-law, Michael, who he referred to as Meathead. Michael was a bleeding heart liberal before they were called bleeding heart liberals.

Dad’s outlook on life was similar to Archie’s. Sometimes I overheard my parents talking to their friends about the show. Dad would often take the position, “Everybody laughs at poor old Archie, but if you really listen to what he says, he’s right about almost everything." I think my mother loved the show because she sympathized with the Edith character, and although she would never laugh at my father, she felt free to laugh at Archie.

These shows were each groundbreaking in their era. The time our family spent in watching them together was quality time. Does anyone still do that with their family? Do people still gather around and watch TV shows together, or does everyone retreat to their separate corners of the house and watch their own personal “content?”

Monday, August 31, 2015

I Walk in My Wheelchair

265395004_8ce0692442_oReaders of this blog know I have a wheelchair that does things other chairs won’t. It can raise me up on two wheels to the height of a standing person, allow me to climb stairs, and more. But this post isn’t about the iBot.

This post is about semantics, the interesting kind (yes, such a thing exists).

Someone might ask me, “Are we going to drive to the restaurant or walk, um, er, I mean wheel, or is it roll?”

This issue can take a simple question and turn it into an awkward moment. Until now, I didn’t have a consistent response. Sometimes I said walk is okay, and other times I favored more precise terminology (I am an engineer after all). But I don’t need that in my life. I don’t need people tiptoeing around me worrying about saying the wrong thing. I need normalcy. I need to make myself comfortable to be around, not challenging to be around.

I have decided that, going forward, when I don’t have someone drive me from point A to point B, I’ll say that I walk. In almost every context, it’s irrelevant whether I use my legs or my wheelchair to get where I’m going.

In rare instances, I'll still make the distinction. “Mitch, when did you stop walking and start using a wheelchair?”

I won’t be a purist and make a foolish statement like, “I’ve decided to say that I’m still walking.” No, I will answer, “It was a gradual process, around 2007 or 2008.”

The sad truth is that not every person I encounter will have read this blog post. So, I’ll be gentle in the future when they ask, “Are we going to drive, walk, wheel, or roll…?”

I'll respond with something like, “Walk is good. I just say walk.” And I’ll smile, and we’ll move on to more interesting conversation.

After many years of uncertainty about this issue, it feels good to have made a decision. The opposite of drive is walk. I will no longer dance around the question of walking.

I walk in my wheelchair.

To be clear, I hate dancing. Don’t ask me to dance in my wheelchair. If you do, I may turn and run.

Tuesday, August 18, 2015

A Colonoscopy for a Wheelchair User

In the United States, for your 50th birthday present they give you a dose of happy drugs, roll you on your side, and slide a probe up your butt. It’s not as fun as it sounds, though, because the day before that you aren’t allowed to eat any food, and you experience the soupiest diarrhea of your life.

But I didn’t accept my 50th birthday present. I wasn’t comfortable with the logistics, given that I’m a wheelchair user. As my 52nd birthday approached, however, I reconsidered and thought it might be important to get a colonoscopy. I’ve heard that colon cancer sucks, and that catching it early improves your survival rate dramatically. For me, the problem was the preparation required the day before the procedure. Patients have to drink a laxative concoction which induces sudden and uncontrollable bowel movements (or BMs, as my mother, a real lady, used to call them). Patients stay close to the toilet to avoid accidents. I have an overhead lift system to get me from wheelchair to toilet, and the transfer process takes 30 to 60 seconds. Hence the problem.

The obvious solution would be for me to sit on the toilet for the entire 3 to 5 hours of, let’s call it vigorous bowel activity. Because I no longer can shift my weight around to remain comfortable, I have an elaborate seating system on my wheelchair, with various air chambers and cushions, and the ability to recline my upper body and raise my feet. Even this system barely allows me to get through the day without a sore butt. I dreaded the thought of sitting on the toilet seat for five hours.

But I knew what I had to do. I scheduled a colonoscopy for last Friday morning. The procedure called for me to take a laxative pill at noon on Thursday and then start drinking the laxative cocktail at 4 PM. I sat on the toilet at 3 PM. It didn’t take long before my butt ached, so we became innovative. First, we added two small pillows between me and the seat. That helped for about half an hour. Then we tried two big pillows. That helped for another half hour. Then Kim ran to the corner drugstore and bought one of those inflatable donuts that women use after they have a baby. That got me through the rest of the five-hour ordeal, but it wasn’t fun.

I reported to Maine Medical Center at 7:00 AM on Friday for a 7:30 procedure, having had nothing to eat since 6:00 AM on Thursday morning, and nothing to drink since 9:00 PM Thursday night. Kim and a couple of the nurses transferred me from my wheelchair to the hospital bed. One nurse introduced herself, and I thought she said her name was Harley. “No, it’s Carly, but it would be so much cooler if it was Harley.” The other nurses and Kim and I agreed that for the rest of my stay she would be Harley, and she was.

Harley asked me a ton of medical and personal questions, including, “How tall are you?”

“About four feet, six inches,” I responded.

“I can see what kind of day this is going to be,” she said with a smile.

Next, Harley tried to start an IV, with no success. Two other nurses poked me a total of four other times, until I had five holes in me, but still no IV started. Each nurse apologized profusely. I explained that I am a difficult prick, so to speak, even when I’m properly hydrated. Then they brought in the heavy artillery. I can’t remember her name, but she said she usually worked “downstairs.” After a few minutes, she was able to thread the catheter in my vein and establish an IV.

Quite late now for my 7:30 colonoscopy, they wheeled me into the procedure room. Two nurses and the doctor rolled me over on my side to expose my, shall we say, point of entry. They hung a bag of the sedative solution on my IV stand but couldn’t get it to flow into my vein. I asked one of the nurses (not Harley) if the IV was working. “We will make it work,” she said with determination. So, instead of a constant drip throughout the procedure, they force-fed two syringes of the drug directly into my IV port, and it worked.

I slept through the probe insertion. I woke up midway through the removal, which is when they do the inspection and polyp harvesting. I felt no discomfort. As I watched on the screen, the doctor inched the probe out and removed several polyps. A little wire would emerge from the probe and lasso the polyp. The doctor would then draw the wire back into the probe and pinch the polyp off the wall of the colon. Interesting stuff. He told me that nothing appeared cancerous, but I’ll get a pathologist’s report in a few days. Because I didn’t have a clean colonoscopy, I’ll have to go back in 3 to 5 years instead of the standard 10 years.

Why am I sharing this story with you? If you are a disabled person, this serves as a reminder that even though you may have a serious condition, like MS, for example, you still need to consider your overall health and well-being, and you need to get the screenings recommended for people your age.

If you’re not a disabled person, and you are avoiding screenings like a colonoscopy, I hope this post makes you feel guilty. Given that I made it through this procedure, certainly you can.

In closing, if you live in the United States, or somewhere else where colonoscopies are recommended at the half century mark, I wish you a very shitty 50th birthday, and I mean that in the nicest possible way.

Wednesday, August 12, 2015

Dave and Stephanie’s Wedding, Part Two of Two

During the initial planning for the wedding on Sunday night, Dave said, “I only want the ten people or so who are here tonight to be at the wedding, and I want all of you wearing nothing nicer than what you have on right now.”

We mostly had on shorts and T-shirts. I asked, “Can I upgrade to khakis?”

“No khakis!”

Dave was so, so wrong.

As the week went on, the number of people who would be attending grew closer to thirty, and the budget kept getting bumped up. It became clear there would not only be khakis but a few suits and ties, not to mention evening dresses and high heels (note that the spikes on certain high heels fit nicely in the gap between the planks on our wooden deck). Stephanie’s boss called and arranged to purchase a case of champagne for the reception. We’ll never drink twelve bottles of expensive champagne, I thought.

I was so, so wrong, thanks mostly to Barbara and Marci.

Kim and Ann arranged for food, beer and wine, hard alcohol, champagne flutes (glass not plastic), flowers, decorations, cupcakes (in lieu of a wedding cake), tables, and table settings. They even bought a trellis and assembled it. I asked my daughter Amy, who is skilled with a camera, to be the wedding photographer and videographer. She enlisted her fiancé Nick’s help, and the pictures and video came out great.

Stephanie learned that her mother, her sister Jolee, and her two best friends would be coming to the wedding. On Thursday, I got a secret text from her other sister, Christy, letting me know that she would be a surprise guest.

Dave and Stephanie arrived back in South Portland about noon on Friday, and the three of us made the short walk to City Hall to get their wedding license. While waiting, we had a nice conversation with one of the city counselors, and when Dave and Stephanie made it to the front of the line, the city clerk couldn’t have been more pleasant. They laughed about how their experience would have been different waiting in line for a wedding license at City Hall in Las Vegas.

On Friday night, we had party number two, a rehearsal dinner but without the rehearsal. Throughout the day on Saturday, Kim and Ann put together the final touches, and at 6 o’clock everyone gathered in our small backyard.

Dave sang the processional song, Love Minus Zero/No Limit by Bob Dylan, a tune he refers to as “the greatest love song of all time.” A couple days before the wedding, Amy came up with the idea of purchasing the Bob Dylan album with that song on it, and having guests sign the album cover instead of a guestbook. After Stephanie’s mother walked her down the aisle, my brother Tom began the official ceremony. Dave and Stephanie each gave a little talk about their journey together, and then Dave picked up his guitar again.

Stephanie asked, “Oh, there are more songs?”

“You didn’t know about this song?” Dave teased.

As Dave played, Christy walked in, microphone in hand. After hugs and tears, Christy sang the song 1000 Years, accompanied by Dave on the guitar. The rest of the short ceremony went off beautifully, and at the end Tom introduced Mr. and Mrs. David and Stephanie King for the first time. Party number three commenced immediately, and it lasted until two in the morning.

As best man, I made a toast. See the video, below. If you are receiving this via email please go to the original blog post to watch the video.

Dave and Stephanie couldn’t stop thanking those who planned and executed the wedding, especially Kim and Ann, and they deserve it. But none of this would have happened if not for Dave and Stephanie having the audacity to recognize a great idea and the guts to act on it. There were a hundred reasons not to get married this way, but they focused instead on the positives. One of those positives, a relatively minor one in the grand scheme of things, was my ability to take part in their wedding, which may not have happened if they had married in Vegas. Because of their spontaneity, daring, and deep commitment to one another, we experienced an unforgettable event – the time our friends from Vegas flew to Maine for a quickie wedding.

You want bonus footage, you say? Okay, here it is. I gave a second toast, a traditional toast from our fraternity days, and some of the brothers in attendance joined me. Also, I’ve included parts of the heartfelt and energetic toast by Eric Peavey, Stephanie’s Man of Honor. Enjoy.

Click here for part one.

Tuesday, August 11, 2015

Dave and Stephanie’s Wedding, Part One of Two

I thought I had the rest of our summer all planned out. Normal stuff – Red Sox baseball game, class reunion, art show in the local park. It was all detailed in my summer planning spreadsheet. Then my friend Dave flew into town and, well, things got interesting.

I’ve written about Dave here before. But if you’re new to this blog, what’s important to know is that he’s my childhood best friend and has lived most of his adult life in Las Vegas. Although he earned an electrical engineering degree, he has made a name for himself in Vegas as a musician. Dave visits Maine most summers, making his way around the state to see as many people as he can.

He gave me a few weeks’ notice before flying to Maine in late July of this year. “We’ll just play it by ear when I got there,” he said. This was typical, and I expected no further commitment.

Dave and I met in first grade and immediately became best friends. Because I lived up on the hill and he lived down on the lake it took me five minutes to ride my bike to his house but fifteen minutes to get back home. He had a pool table in his basement and a lake in his backyard, so we stayed at his house more than mine, but he was no stranger to my family. His mom and dad, Gail and Wayne, became like second parents to me, and I still think of them that way.

Later, Gail and Wayne sold the lake house and bought an old farmhouse up on the hill, still a bike ride away. But soon enough we had our driver’s licenses. In high school, Dave’s interest in music began to dominate his free time. He tried to teach me the guitar, so I could jam with him and his friends, but he became frustrated with my apparent tone deafness. Thus ended my brief flirtation with playing in garage bands.

He spent more and more time with the musical types, but our friendship didn’t suffer. We still shared a special connection and found opportunities to hang out together – and get in trouble together. We were college roommates the first semester, and then fraternity brothers for the rest of our college years. Again, at the fraternity we gravitated toward different groups. Or I should say he spent most of his time with certain brothers, and I spent most of my time with Kim. But again, I wouldn’t characterize it as a weakening of our friendship.

Shortly after college he and his parents moved to Las Vegas. Our paths couldn’t have been more different. He led a single life as a musician in Sin City. I worked for corporations as an engineer, married my high school sweetheart, and lived in rural northern Maine, and later south coastal Maine. But, because of my visits to Las Vegas and his visits to Maine, and several phone calls throughout the year, we remained close. To this day, when we get together, we pick up where we left off, as if nothing ever changed. Of course, sometimes things have changed.

John was another good friend growing up, essentially the third leg of our stool. He lived halfway up the hill when we were kids, and today he and his wife Ann live only a few miles from Kim and me in South Portland. Below is a picture of me, John, and Dave after our last high school football game.

Until recently, Dave had been a lifelong bachelor, although he had a tendency toward serial monogamy. I grew close to several of his serious girlfriends, only to see them disappear, one after the other.

On this trip to Maine, Dave brought his live-in girlfriend of several years, Stephanie. Kim and I had met Stephanie both here and in Las Vegas, and we adored her. We tried to keep our emotional distance from Stephanie, with little success, because we knew we would lose her at some point down the road. When Dave and Stephanie arrived in Maine a few weeks ago, we had a little get together with about ten people at our house on Sunday night. At this party, Stephanie revealed that Dave had recently proposed to her, and that she had accepted. When we found out they had no specific wedding plans, and, in fact, doubted they would have a formal wedding, Kim and Ann went to work on Dave and Stephanie. Why not have a wedding, right here in our backyard, before you go home to Las Vegas?

Everyone loved the idea, but it was late at night, and more than a little alcohol had been consumed. I suggested to Stephanie that, in order to seal the deal, in order to make it so Dave couldn’t change his mind in the morning, she should call her two sisters and give them the good news. With Dave’s blessing, she did. Nevertheless, I was nervous the next morning until we heard from the couple that their wedding plans were still on.

During the planning party, I had offered up my brother, Tom, who is a notary public, to officiate the wedding. I confirmed with him on Monday morning that he was willing and able to do that. I called South Portland City Hall to find out the legalities of an out-of-state couple getting married by the end of the week. Turns out there was no waiting period, but because Stephanie was previously married she needed to produce an original, stamped divorce decree from the court that granted her divorce. She made a call and had the document Fedexed to me.

Dave and Stephanie set out the next morning, Monday, for a tour of the state, with plans to return on Friday in preparation for a Saturday wedding. Beginning Monday morning, Kim and Ann went to work on the wedding. It was a crazy week.

We are thankful to Dave and Stephanie for giving us this opportunity, to allow our little oasis in the city to be their wedding venue. Sometimes the impromptu events, the ideas conceived among friends over beers, turn out to be the best. Sometimes going “off spreadsheet” is justified, even inspired. This was one of those times.

Click here for part two.

Tuesday, August 4, 2015


I’m referring to what you feel when your routine tasks don’t go smoothly – hitting your thumb with a hammer, dropping something on the floor, or being unable to button your pants (maybe because of MS). I’m not talking about frustration with your spouse, your boss, or Obama.

Everyone has a different threshold for this type of thing. Some folks keep their cool most of the time while others express their annoyance all too easily. I fall somewhere in the middle (I think).

I was never a saint. I remember once when I was a young father, as I piddled around in my basement workshop I became modestly frustrated with myself. Zach, my two-year-old, was watching me, so I bit my tongue. He picked up on my suppressed frustration, however, and offered, “Jesus Christ, Daddy, huh? Jesus Christ.” Apparently I hadn’t bitten my tongue enough in the past.

Having MS adds a whole new layer of frustration, for both Kim and me. Sometimes I can’t complete the simplest tasks, or I can no longer complete tasks I was able to in the recent past. If I expressed my frustration an average of five times a day before MS, I bet it’s now ten times a day, and sometimes quite colorfully. Similarly, with all the caregiving duties that Kim has taken on, I’ve noticed her tendency to express frustration has grown over the years.

I need your help on this one. My questions are:

Do people with MS and their caregivers have license to express their frustration more than healthy people do?

Is it better to keep our frustrations unexpressed, so as to make being around us more pleasant, or is this suppression of emotion unhealthy?

Tuesday, July 28, 2015

One of My Blog Posts Is Featured on MS Connection

MS Connection Blog is administered by the National Multiple Sclerosis Society. They liked the guest blog post I did a few weeks ago at MyCounterpane and asked if they could re-post it at their website. MS Connection is in a whole other league from – huge readership. Of course, I agreed. Thanks again to Kate at for making this happen.

The post has been running at MS Connection since last Wednesday and has 37 comments. This is more comments than I’ve ever had on a post of mine at The piece was about how I’ve adapted to using ever more progressive mobility aides over the years.

Here are some sample comments:
“Maybe I should finally listen to what my wife has been saying for years and pick up a stylish cane.”
“Ty I am going to go get a cane. I too have resisted. Your letter made me feel better. So thank u sincerely.”
“Thank you so much, your story has really helped me. Am always fighting having to use any walking aids & end up feeling fatigued & frustrated. Really want my independence back, think time to get a powered chair or scooter. Thank you again.”
“Many thanks for writing. My wife fought every assistance aid with a supreme passion, often as it was too late to be of assistance. As her 24-7 caregiver, she so robbed herself of opportunities to more enjoy the life that gets disrupted by physical disability. I am very hopeful that your article will help other independence fighters. I salute your courage!”
“Ever since I was diagnosed with MS I have been frightened of using a wheelchair/scooter, but thanks to you I now see it as enabling rather than disabling. Thank you for writing this article.”
“Thank you so much for this article. My husband is dealing with these issues & questioning his self-worth. I read this to him & just pray it’s the encouragement he needs.”
And one with an appropriate dose of reality…
“I too, was resistant to the cane, the walker, the scooter and now the power chair. They help, but are far from easy…I thought I would be independent with my wheels. I’m not.”
I’m human, and I have an ego, so I don’t hate it when people shower me with praise. But it's even more meaningful when somebody tells me that I’ve made a difference, that I’ve helped someone in some way. Nothing feels better. This MS Connection experience has motivated me to finish my book and get it published. Maybe I can make a difference in more lives.

Tuesday, July 21, 2015

Preserving My Identity

I've been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.

To a large extent, I don't.

Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would've been, but that was all.

As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn't fight it. I embraced it.

I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn't supplant my identity; it enriches it. Don't get me wrong. I'm not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn't.

Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. When MS needs a chunk of your time – whether for doctors’ appointments or naps – give it what it demands, then return to your other interests without apology or guilt. I did that for quite a few years, and I was largely successful.

I'm not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are quality television and movies, books, conversations, writing, or any task requiring concentration (even though my ability to concentrate is diminished). 

How do I identify myself in my dreams? It's a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.

I'd like to think that people I'm interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it's ever far removed from who I am would be an act of denial.

Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.

I'm now that guy with MS, and being identified as such is not a bad thing. It's just a thing.

Thursday, July 16, 2015

We Went Camping: Part Three of Three

It’s great campground entertainment to watch people crawl out of their tents or cabins in the morning. I call it the March of the Full Bladder. It’s largely a female thing, because men are more likely to cheat and use the woods in the middle of the night. A woman will emerge, groggy from a poor night’s sleep and partially blinded by the daylight. She will lean forward and stumble for the first few steps until her legs catch up. She won’t greet you or even make eye contact. She is on a mission. It resembles the Walk of Shame that young women endured when they snuck out of our college fraternity early in the morning and headed back to their dormitories. (This was unfair, because if one of my fraternity brothers walked in the opposite direction early in the morning, there was no shame involved – quite the opposite, in fact.)

Camping is a lot of work for everybody except me. There was often a buzz of activity, especially during set up, tear down, or mealtime. I couldn’t do anything to help, and no one expected me to. I felt like a King sitting on his throne, his wheeled throne, being waited on hand and foot and enjoying a life of leisure. But it wasn’t as much fun as I imagine being King would be.

I never know where to put by drink when sitting around the campfire. After several failed attempts, the team built a side table for me that was both stable and at a comfortable height. (The one pictured here was a failed attempt.)

We spent all day Saturday outdoors, and the heat got to me. About halfway through a scrumptious dinner of chicken, summer squash, zucchini, and corn on the cob, my arms and hands failed me, not unexpectedly. Several of us were engaged in a lively dinner discussion, so I tried to use a system of vague gestures and inaudible whispers to get Kim’s attention.

“What?” she asked.

“I need help,” I said while pointing at my plate.

“Help with what?”

“With my food.”

“Which food?” she asked a bit more loudly because the whispering wasn’t working.

Frustrated by Kim’s inability to read my mind, I blurted, “I need help with everything!” Our dinner companions stopped talking, which doubly frustrated me. I complained to Kim, “I tried to say that quietly so I wouldn’t interrupt the dinner conversation.” Within seconds, I felt terrible for being such an asshole, but Kim didn’t even seem to notice, and I’m not sure anyone else did either. Conversation resumed, and Kim helped me finish my meal. Damn heat.

We enjoyed our last evening around the campfire, going to bed only after gentle prodding by the campground “police” around midnight.

As Kim prepared to get me out of bed on Sunday morning, she complained of a strange odor in the far corner of the camp. Seconds later she gasped and threw a shirt on the floor. Kim is not a girly girl, mind you. She almost never cries out like that.

“What is it?” I asked.

“A dead mouse,” she screamed.

“A mouse crawled into your shirt and died?”

In a more calm voice, she answered, “It’s more likely that a certain cat at our house killed a mouse, and a certain dog buried the dead mouse in our suitcase while we were still packing on Thursday morning.”

“You’re not accusing Oreo and Phoebe of such a crime?”

“I am.”

I thought about it, and yeah, that’s what happened. Kim put on a different shirt and disposed of the mouse.

After Kim finished getting me up, I sat outside and witnessed the March of the Full Bladder again, and then I ate breakfast. It was time to pack for home, so another whirlwind of activity broke out around me while I reigned benevolently from my portable throne. Soon, my little kingdom looked as barren as when we had arrived, ready for the next round of campers.

A big thank you goes out to all five of my fellow adventurers. You took such good care of me. I wanted for nothing the entire weekend.

As we said our goodbyes to the rest of the group, I asked Kim, “I had fun this weekend, but it’s really up to you. Was all the work worth it?”

“It was worth it. I had a great time.”

“Maybe we’ll do it again?”

“Oh definitely.”

And there you have it.

Other posts in this series:
I'm Going Camping
We Went Camping: Part One
We Went Camping: Part Two

Wednesday, July 15, 2015

We Went Camping: Part Two

At 4 o’clock on Friday, we piled into our minivan and drove the fifteen minutes to Hampton Beach, one of those classic, east coast towns with a split personality.  Cheesy T-shirt shops and carnival style food stands from the 1950s are interspersed with modern resorts and hotels. One thing has remained constant over time, however. There’s a lot of sand and a lot of water in Hampton Beach.

We pulled into the Casino Ballroom parking lot, the venue for the Beach Boys concert we would attend later in the evening, and asked the attendant if there was any wheelchair accessible parking. “I’m sorry, all those spots are taken.”

Kim drove around the parking lot, looking for a space both well positioned for an exit after the concert and accessible for unloading me (maybe at the end of a row). We formed an ad hoc committee of five expert advisors to help Kim make the right parking decision. I’m certain she appreciated the suggestions and the constructive criticism. She tried out two or three spaces before she became fed up and parked in a spot nobody liked. After we piled out of the van and began to walk across the parking lot, we noticed five, big, beautiful, handicapped parking spots, all vacant and well positioned near the exit. The committee of advisors turned in unison and looked at Kim. She moved the van one more time. Stupid parking attendant.

After dinner and drinks, we explored the beach. Kim and I stayed off the sand because it looked a little soft for the iBot. On our way from the beach back to the music venue, we stopped at some shops. Kim told me that she liked a certain necklace, but would never consider spending the exorbitant sum of $58. I asked her to show it to me. She did, and I liked it. It took all my skills of persuasion, but I convinced her to purchase the necklace – a rare gift for herself.

Time for the Show

Six or seven years ago we attended a concert at the Casino Ballroom. After the show, we approached the wheelchair lift, only to find that there was a long line for it. “Let’s take the stairs down to the street,” I suggested to Kim. She agreed.

I positioned the iBot inches from the top step. Two employees rushed over. “Sir, what are you doing?”

“This is a stairclimbing wheelchair. Just step back and prepare to be astonished.”

One of the employees spoke to someone on his radio, then said, “I’m sorry Sir, but we can’t allow you to proceed. We’re not insured for that.”

“Don’t worry. We do this all the time. Please, just step out of the way.”

The employees gave up their attempt to stop us and asked, “Is there anything we can do to help?”

“Yes, hold on to these,” Kim said as she took off her high heels. She then guided me down the long staircase and out onto the sidewalk. Several employees and a group of spectators expressed their amazement. Kim and I played it cool on the outside, but on the inside we basked in the glory of our accomplishment.

This past Friday, as we approached the same venue, one of those employees from so many years ago came up to me and said, “I recognize you. You’re the one with a stairclimbing wheelchair.”

I recognized her too, and asked, “Would you be terribly disappointed if I took the wheelchair lift this time?”

“Of course not,” she said.

By the time I got up to the concert level, I noticed Kim already working on an usher. She pointed toward me, and he nodded. When I reached them, the usher said, “Follow me.”

Although we only had general admission tickets, he sat the six of us in the front row, stage left. This is usually how it goes for me at concerts – one of the silver linings of being a wheelchair user.

The Beach Boys played for about two and half hours, and it was an awesome show. The only way it could have been better is if they played for one and one-half hours and skipped all the filler songs that nobody knew. But, nevertheless, we enjoyed ourselves.

Once the concert was over we hustled out to the minivan and joined the 2500 or so fans leaving downtown Hampton Beach. Karen Cole volunteered to drive, and once again a committee of five expert advisors began advising. Feeling bad for Karen, I took charge and made an impassioned speech. “I appreciate that everyone has their opinions about which way Karen should go, but she and I have it under control. So shut the F up.” They did shut up until I told Karen to go the wrong way on a one-way street. The others pounced on my error and I lost the upper hand. The opinions flew in from every direction, but somehow Karen found her way out of Hampton Beach anyway.

We retired to bed as soon as we got back to the campground, which was close to midnight.

Tomorrow – the conclusion of our camping saga.

Other posts in this series:
I'm Going Camping
We Went Camping: Part One
We Went Camping: Part Three