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.

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.

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.

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.

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.

Complications

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.

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

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.

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.

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?