Tuesday, June 30, 2015

Right and Wrong

Some folks insist that if they could live their life over again they wouldn’t change a thing. That’s a sweet sentiment, but I don't feel that way. Although I spend almost no time regretting my poor decisions, if I had it to do over again, you bet I would make some changes.

What I Got Right – Choosing Kim

She wasn’t from the popular crowd. She didn’t have the hourglass figure or poofy hair (fashionable in the 1970s). She wore little makeup, and she dressed like a boy. But she was real. She was fun, determined (especially on the track and in the classroom), flirtatious (at least with me), and had natural good looks.

What I didn’t know in high school is that she would grow into an amazing woman, mother, wife, and now caregiver. What I also didn’t know in high school is that I couldn’t have chosen a more compatible, loving, dedicated, and (again) fun individual.

I got that one right, and I’m glad she felt the same way toward me.

Observation: in the photo above she does have poofy hair, and she's definitely not dressed like a boy. But she looks so damn cute in this picture that I couldn't resist.

What I Got Wrong – Choosing to Be a Chemical Engineer

This is a tough one for me to admit because I spent so much of my life doing this work, and I was pretty good at it, and I was well compensated for it. But if I’m to be honest with myself, there were so many other directions I could have gone.

It seemed like a good idea at the time. Chemical engineers made more money than any other four-year degree. My father liked the idea because he worked for chemical engineers at the paper mill, and they were the top dogs. The University of Maine, my choice for a college, offered me a half tuition scholarship my freshman year which became a full tuition scholarship for my next three years, based on an engineering major. My decision was almost preordained, and I didn’t have the wisdom or courage at the time to think for and advocate for myself.

What should I have done instead? I’m not sure. The life of a college professor may have worked – being both an intellectual and a coach for young people. I also think I would have been happier in the business/finance world. I like big picture issues – not so much how do I make this widget better, but how do I make this company better. I thoroughly enjoyed getting my MBA, but I was so far along in my engineering career that I never made the leap to the business side. I only used the MBA as resume material.

During high school, I didn’t consider myself a people person. I was horribly shy. I was much better at numbers and formulas and equations. It has only been in the last few years that I’ve tapped into my creative side and appreciated how rewarding it is to improve the lives of people. Perhaps I would have enjoyed helping others in the medical or legal areas. I don’t know.

I just know that I got it wrong when I chose to be a chemical engineer.

What Did You Get Right and Wrong?

This is a new series of blog posts, where I’ll write about one thing I got right in my life and one thing I got wrong. I would like to know your personal Right and Wrong stories. Please forward them to me at email@enjoyingtheride.com. Once I get enough of them, I’ll publish them in a blog post.

Wednesday, June 24, 2015

I’ve Still Got It

There are so many celebrations and festivals in greater Portland, but the one we never miss is the Old Port Festival, the second Sunday in June.

The weather was beautiful this year – sunny and in the mid-70s. I decided to spend the day in my iBot wheelchair. We used the new accessible path in Thomas Knight Park to gain access to the Casco Bay Bridge, and in less than half an hour we found ourselves in downtown Portland.

This was my first iBot trip of the year to Portland. With the sun beating down on me and sapping the strength from my body, I couldn’t keep my hand pushing on the wheelchair joystick continuously. I had to stop and give my arm a rest several times. This wouldn’t have been the case as recently as last fall – more evidence of disease progression through the winter.

The sun took its toll on me, and I became sluggish. Through our travels around the Old Port, we happened to find ourselves close to our favorite summer watering hole. Kim said, “Why don’t we just go to Portland Lobster Company and try to get a seat in the shade? Lyle and Phil Divinsky and Friends are playing.”

“That’s a stupid name for a band,” I said.

“They’re supposed to be good.”

I suggested, “It will be insanely busy there, but if we bust through the crowd at the entrance and keep our eyes open, we may find a high top table.”

With Kim leading the way and repeating, “Excuse us… would you mind moving just a little bit… wheelchair coming through… and so forth,” we found ourselves in front of the stage.

Before we even scanned the area for opportunities, a nice lady asked, “Would you like to sit here?” She motioned to an open space at her table.

It was loud, and Kim was closer to her than I was, so she spoke for me. “Thanks anyway, but he needs to be in the shade.”

“He can sit here, and I’ll move to the other side of the table.”

“No, we couldn’t ask you to do that.”

“It’s not a problem.”

“We don’t want to impose.”

There may have been one more round of this maddeningly polite banter – I can’t remember – but the lady settled the issue by moving from the shaded side of the table to the sunny side. I maneuvered myself into the spot she had vacated.

Her son was the bass player in this oddly named but talented band. Lyle and Phil, who were father and son, took turns as the front man; both of them played the guitar and sang. A gifted lead guitarist and a drummer, along with the bass player, constituted the “and friends” portion of the group. These musicians whipped the crowd into a frenzy and then fed off our energy.

Friends of ours, Bob and Stephanie, texted us to see if we were at the Old Port Festival. We texted back three letters – PLC, and they knew where to find us. Before long Kim, Bob, Stephanie, and the lady who gave up her seat for me all began dancing in the tiny space between the band and our table. Strangers joined in, and it became a big, happy party.

Back when I was healthy, I never enjoyed dancing. In fact, I consider my inability to dance as one of the silver linings of having MS. But when there is great music playing, and I’m in a good mood, which were both the case on this day, my head starts bobbing to the beat of the music. When I’m elevated in the iBot, which I was, the chair reacts to my head movements, and in my own way, I am dancing.

The loud music made it almost impossible to carry on a conversation. It took forever to get a beer or use the bathroom. People bumped into us all afternoon. Yet none of these annoyances dampened our spirits. At one point, Kim and I made eye contact from across the dance floor and just smiled at one another. It’s a simple gesture, full of joy and love, which we need to do more often. The crowd partied until the band finished playing, and then we called them back for an encore.

As the band said goodbye, they announced that they would play at PLC every other Sunday all summer long. I said to the bass player’s mother, “I guess I’ll see you every other Sunday.”

Our day wasn’t over yet. Two more friends, Tim and Lynn, joined in, and the six of us went to Sebago Brewing Company, our favorite brewpub, for a light dinner, and then decided to go back to our house to enjoy a campfire on our patio. “It will take us about half an hour to walk home. If you get there before us, just make yourself comfortable,” I said. There are no wheelchair accessible taxis in the Portland area.

The ocean is cold this time of year in Maine. The wind direction shifted just a bit, and the walk home at 6 o’clock in the evening became uncomfortably cold. Although we didn’t bring jackets, we survived. Even without overheating, I still had some difficulty operating the joystick, but not as much as earlier in the day.

The six of us had a great time at our house sitting by the fire and cooking s’mores. What a wonderful day spent with my wife and our dear friends. Because I’m able to enjoy myself on days like this, I’m a lucky guy. I’ve still got it.



Notes on the photographs: The third picture down was taken by my daughter, Amy, and was picked up and featured by a local television station. It's a birds eye view from the Ferris Wheel shown in the second picture. The last three photos are random pictures of us at Portland lobster company over the years. Unfortunately, we didn't take any pictures on the day I wrote about in this post.

Friday, June 19, 2015

Read My Guest Post at the New My Counterpane Blog

Click here to see my post, and please consider adding Kate's blog to your regular online reading.

Tuesday, June 16, 2015

A Few Items…

Apple Watch Update

Last week I wrote about my Apple Watch. The only complaint I had was that I couldn’t use Siri, hands-free, to call 911. When I tried, the watch gave me a message indicating that I needed to complete the operation from my iPhone. What if I fall and I can’t reach my iPhone?

I had a long chat session with Apple technical support. I wore out two levels of technicians before I found myself with Melanie, a Senior Advisor. At the end of our chat conversation, she said that she would need to speak with the software engineers to determine if I was doing something wrong, or if this feature simply wasn’t supported.

She called me a couple of days later and said, “It’s not supported.”

I already had one workaround in place (see my previous post), and she gave me a second workaround. By making a contact called “HELP,” and making that contact a favorite, and giving the contact a phone number of 911, I can place a call to 911 from my watch with a couple of button pushes. I just can’t do it completely hands-free.

But the best news is, Apple now realizes that hands-free, voice calling for 911, is a desirable feature for the Apple Watch, and they will try to add it to a future software revision. We shall see.

Oh, and more good news. They read last week’s blog post, and liked it so much they passed it around inside Apple.

Book Title and Cover Design

I have decided on a title for my book, and a basic cover design. I understand that if I work with a publisher they may want to change that, but I like the idea of coming in with a solid idea. One of Kim’s sixth grade students sketched it for me, and I showed it to 15 or 20 folks. I got about 80% positive feedback. My niece Erin, who is an art education major in college, is working up another version for me. As soon as she’s done, I’ll share it here.

Who came up with the idea? Who gets the free lobster dinner? Me, at least I think so. I thought of the title and the cover design in the middle the night a couple weeks ago. But sometimes I think I have an original idea, when it was actually whispered in my ear by somebody else. So, if in fact it turns out that one of you did give me this idea, or something very close to it, I’ll gladly give you all the credit, and the lobster dinner.

Biotin

I’m a little over six weeks in, and I’ve noticed no changes yet. It’s still very early, and I am by no means discouraged. I’ll keep plugging away and update you every now and then.

Tuesday, June 9, 2015

My Experience with Apple Watch


I am an early adopter, even more so when technology can help me with some of my MS related challenges.

On April 25, soon after the watches showed up in Apple stores, I tried one out. With the Apple Watch mounted on my relatively useless left hand I could operate the controls with my slightly less useless right hand. I ordered my watch online later that evening. Apple indicated that I should expect delivery in June.

The watch arrived at my house, via UPS, on June 3rd. I would have 14 days to evaluate the watch before the window for returns expired. I won’t need 14 days.

I Told Myself It Was about Safety


My official, number one reason for ordering the Apple Watch was safety. As I move around my house during the day, especially when I use my Sure Hands lift system to transfer from wheelchair to toilet, I need to be certain I can obtain emergency help if my phone is out of reach. I had researched several home emergency services, which typically required a pendant around my neck or some similar, dedicated device. I didn’t like the idea of a wearable device that I might only use once in a blue moon.

The Apple Watch does the job, although I had to create a work-around. When I said “Hey Siri, call 911,” I got a message stating that this feature is only supported on the iPhone, not on the watch. I called my local police department and asked if there was a ten digit phone number I could dial that would get me into the local 911 system. There is, and I programmed that as one of my favorites. I can call that number by saying, “Hey Siri, call emergency.” The only drawback is that the people who answer the phone won’t get 911 location data on my call. I’ll need to tell them my address. I decided that is something I could live with, but I emailed Apple asking them “what the hell?”

The Watch Provides More Than Emergency Communication


As my disease progresses, I find it increasingly difficult to operate my iPhone 6+. It takes significant effort to get the phone out of my wheelchair pouch, open it up, and manipulate it. With the Apple Watch, I twist my left wrist, and the watch turns on. The home screen gives me time, date, day of the week, outside temperature, battery charge, sunset, and alarm features, all at a single glance without my right hand becoming involved. I can invoke Siri to place a phone call or a text. I can read notifications from Messenger, Email, or other programs I specify. All of this with the twist of a wrist.

By using my right hand to push on the screen or on one of two buttons, I can do so much more, including answering phone calls. With a swipe I can access things like my heart rate, ESPN, music player controls, mapping program, and more. By pressing the home button I have access to apps such as weather, calendar, music, email, photos, etc. There are also a ton of activity monitoring features, none of which I care about other than heart rate.

Can I Justify the $400 Expense?

I’m in a unique position. I have difficulty operating an iPhone, but I can operate an Apple Watch. Because I live in this functional middle ground, the watch is an ideal companion to my iPhone. For healthy people, it’s more difficult to justify an Apple Watch unless you take advantage of the activity features. I’m glad Apple came out with this product, because it has made my daily life easier and made my day-to-day existence safer. And yes, it has temporarily satisfied my hunger for new technology, at least until the next great gizmo comes out.

If you’re wondering whether an Apple Watch is for you, go to an Apple Store and take it for a test drive. If you have questions about this device, or you’re an expert and have advice for me, write me at email@EnjoyingTheRide.com.

This is Mitch, signing out at 4:31 PM on Tuesday, June 9, 64°, 82% battery.

Wednesday, June 3, 2015

More Media Coverage about the Accessible Pathway in My Neighborhood

Unless you’re new to my blog, or you skip over the self-aggrandizing posts like this one, you’ve already read several times about my successful efforts to have a wheelchair accessible pathway installed through Thomas Knight Park. Now three widely read outlets have picked up the story.

I first documented this issue and my intention to do something about it at my friend Kate Milliken’s awesome website My Counterpane.

My initial blog posts on the subject were:

Our Love Affair with Cobblestone Streets and Brick Sidewalks
Wheelchair Accessible Pathway Installed around Cobblestone Street in My Neighborhood
A local newspaper’s article

The New Articles

All of these came about because Kate at My Counterpane advocated for me.

Liftbump is a national news consolidating service, and they ran this story.

Next, the MS International Federation posted this version on their World MS Day website.

But the story’s broadest exposure took place through the National Multiple Sclerosis Society Facebook page, where they posted this video. It was viewed over 14,000 times, shared on Facebook over 100 times, and liked by almost 400 people.

A Humbling Experience

I think these articles have run their course, so I won’t bore you with them anymore. It’s certainly been a humbling and rewarding experience, both seeing the path installed, and watching the interest it has generated. My hope is that the story has inspired others to become activists for accessibility issues in their neighborhoods.


Wednesday, May 27, 2015

Speaking to Students About Disabilities

I have to thank Kim for this opportunity. A few weeks ago she told me that her school, Cape Elizabeth Middle School, would be observing A Lot Alike week. They booked speakers, and they organized activities, all centered around the theme of inclusion. Kim asked if I would speak about disabilities. I reluctantly agreed to.

I assumed I would provide a public service, imparting knowledge to these young people. I would do them a favor and would receive nothing in return. As planned, I gave them an understanding of what it’s like to live with a disability. But to my surprise and delight, the energy, compassion, and earnestness I felt from the students lifted my spirits. I gave, and they gave back.

I wanted to start slowly, just one class of 25 or so eighth-graders, in case I bombed. My greatest fear was that I would bore them. The first session went well, so we set up three more sessions of 50 or so eighth-graders over the next week.

Using a PowerPoint presentation, I kicked things off with some pictures of Mrs. Sturgeon and me when we were the same age as these students. I deliberately made fun of our clothing and hair styles, and I quickly gained credibility.

Then, I told them about my diagnosis and explained the basic science of multiple sclerosis. I discussed the variety of symptoms that MS patients might encounter. I showed them pictures of me using a cane, forearm crutches, and a scooter. Next came the highlight of the show – an iBot demonstration. In each of the four sessions, when I elevated myself into balance mode, the students couldn’t believe their eyes.

I spoke about my mother – what a role model she was – and addressed some specific lessons I learned from her. I mentioned the eerie similarity between her injury and my disease.

Then I introduced my blog and talked about how it has benefited both me and those who read it. I shared with them some of my favorite posts.

I finished up with what I called My Keys to Resilience. Then came my favorite part of each presentation – audience questions.

Always, the questions started slowly, then once the ice was broken multiple hands flew up at one time. The students didn’t have much of a filter, and that was refreshing. Here are a few of the questions they asked:
Can you feel your legs? Yes
Does it hurt to lift your arms? Not really
Have you stabilized or are you still getting worse? Getting worse
What do you have for hobbies? I explained some of these
What kind of music do you listen to? Nothing made after 1982
How do you get into and out of bed? I explained this
How much did the iBot cost? $26,000
How did your mother break her neck? You’ll have to read my book
How do you travel? I explained some of this
What is the difference between MS and ALS? Mostly life expectancy and speed of deterioration
Are there any treatments? Many for relapsing, none so far for PPMS
Can you move your legs at all? A tiny, tiny bit. I demonstrated for them.
Do you have other wheelchairs? Three others
How does that wheelchair balance? Like a Segway
I had a huge advantage coming in. Mrs. Sturgeon is a beloved school counselor, and the students relished the opportunity to learn more about her life away from school, of which I am a pretty big part. I probably couldn’t have bombed if I had tried.

Tuesday, May 19, 2015

An Unusual Take on Life Insurance

Jeff (my insurance agent), please forgive me for what I write below.

If you have MS or any other nasty disease, I hope you bought life insurance before you were diagnosed. Oh, you can sometimes get it after diagnosis, but it’ll cost you an arm and a leg, even if that arm and leg don’t work anymore.

When Kim and I had young children, we bought a boatload of life insurance and planned to have it expire when our youngest finished college. Our major financial obligations for child rearing would be complete, and we would have a healthy retirement nest egg, sufficient for the surviving spouse in the event of an untimely death. The nest egg isn’t quite what we had hoped because of my early retirement, but it’s not insignificant either.

Well, Zach just graduated from college, and the life insurance, it’s expiring on schedule.

But we have one policy that is renewable for another 20 year level term, at the same benefit amount, with no medical questions asked. At our age, the monthly premium is a lot higher than it was for the past 20 years, as it should be. Here are the specifics:

Death benefit to me if Kim dies: $150,000
Death benefit to Kim if I die: $50,000
(this is how we set up the policy 20 years ago, and it can’t be altered now)

The monthly premium for a 20 year policy extension: $83 (we had been paying $29)

Warning, this post gets a little morbid from here on. If you want to make good financial decisions about life insurance, you can’t avoid frank discussions.

There are two ways to look at insurance needs, now that our children are grown. One way is – how much money would a surviving spouse need to get by? In our case we could use a bit more money because of the nest egg shortfall.

The other way to look at this financial decision is to treat it like we are placing a bet. Macabre? Absolutely. But such is the nature of buying life insurance later in life, for someone with a chronic illness. Are we willing to bet that one of us will die in the next 20 years, with the insurance company giving us favorable odds by ignoring my illness? Based on my poor health and complete lack of exercise, let's be honest – I'm probably not going to live to a ripe old age.

I have found a company willing to insure my life at the same rate they would insure anyone’s. I think I should do it. I think I will do it.

But I’ve never wanted to lose a bet more than I want to lose this one.

Tuesday, May 12, 2015

Update on My Book

In February I announced that I’m writing a memoir. I spent most of 2014 pulling together the first draft. In January of this year I started the second draft and completed it this morning. The two processes couldn’t have been more different.

The first draft called for free writing – getting ideas out of my head and into documents, with little scrutiny. I let the creative juices flow. My first draft was unreadable, and that’s what I had expected it to be. Oh, it contained some nice passages here and there, but I wouldn’t show it to anybody.

In the second draft I concentrated on making the text more reader friendly. I minimized use of passive voice (replaced the glasses were filled with Mitchell filled the glasses). Because adverb-verb pairings bore the reader, I substituted more interesting verbs (replaced ran fast with dashed). Good writing avoids overused words, so I searched the document for a list including: very, that, just, almost, really, etc. Perhaps most importantly, I looked for opportunities to identify bland passages and bring them to life.

At the end of the second draft I find myself with 34 chapters, about 95,000 words. This will produce a book of about 350 pages. That feels right.

So, what’s next? Obviously, the third draft. I’ll continue to look for the same things I did in my second draft. In addition, I’ll contemplate big picture issues such as theme, pace, structure, and more.

I have a compelling story to share, and I show flashes of writing ability, but it will take a lot of work to make this publishing-ready. I don’t want anyone to read the book because they know me, and they feel obligated. Instead, I hope people will sample or purchase this book because it is well marketed and has positive reviews. Ideally, they will keep reading this book because they can’t put it down. When they finish they will wish it had been longer, not shorter. I look forward to comments like, “I enjoyed the book, and it made me think about things differently.” I'll continue improving the manuscript until I feel it meets these criteria. I'm in no hurry.

My friend and local author Joe Souza helped me improve the all important opening chapter. My friends at the Portland Writers Group are still giving me outstanding feedback, and I will involve other folks as the project moves along.

In my February announcement I asked readers to submit ideas for the title. The majority suggested the book title be the same as this blog. But I wanted a subtitle, and you gave me some great suggestions. Here are my top choices so far, but I’m not convinced the perfect title is in this list yet:

Enjoying the Ride: A Story of Mutual Suffering and Shared Resilience
Enjoying the Ride: A Mother and Son’s Mutual Suffering and Shared Resilience
Enjoying the Ride: A Family Adapted
Enjoying the Ride: A Mother and Son Adapted
Enjoying the Ride: The Story of a Second-Generation Quadriplegic
Enjoying the Ride: The Courageous Story of Mother and Son Quadriplegics
Enjoying the Ride: Holding It Together When Everything Is Falling Apart

For those of you who missed the first post, here is my synopsis of the book:
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 the age of 38 when an aggressive form of MS began to ravage my cervical spinal cord – at an eerily similar location to my mother’s injury. Although we followed different paths, we ended up at the same place.
In a straightforward, irreverent, and hopefully 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.

I’ll keep you updated!

Tuesday, May 5, 2015

Wheelchair Users Need Physical Intimacy Too

This post isn’t about sex; that’s a separate topic that I could address here someday, but I probably won’t. Also, this isn’t about physical therapy, professional massage, or contact between a caregiver and a disabled person while showering, getting dressed, etc. It’s about loving, tender, nonsexual intimacy.

For most of my life, I’ve not been an affectionate person. Kim, however, has a normal, healthy desire for human touch. Back in my pre-MS days, when Kim became affectionate, I didn’t hate it, but I wasn’t sad when it was over, and I rarely initiated. I would have been content with no physical intimacy at all outside of the bedroom.

Maybe I became this way because the warm, loving hugs I used to receive from my mother ended abruptly when I was five years old. After her accident, she stayed in various hospitals for almost a year, and then she used a wheelchair for the rest of her life. That chair came between us.

Or maybe I would have been like that anyway, because I’m, well, a man.

It’s difficult to achieve a quality embrace when you’re sitting in a wheelchair. Shoulders touch, but that’s about it. Because the standing person has to lean over so far, the hug rarely lasts long. Plus, there’s this, which I wrote in a previous blog post:
If you do come in for the hug, please approach from my left side. If you approach from the right side you may hit my joystick and send me flying. Yes, that has happened.
Now that physical intimacy has become more difficult for me to achieve, I’ve decided it’s something I want. Isn’t that always the way? What I used to consider almost an invasion of my personal space, now makes me feel all warm and fuzzy inside, like a real boy.

One opportunity for me to experience nonsexual physical intimacy is while lying in bed, liberated from my wheeled contraption. Our bed looks like a king-sized mattress, but it’s actually two twin mattresses butted up against one another. We are always experimenting with hand railing systems on either side of my twin mattress to help me adjust my position a little bit in the middle of the night. Having a railing on the outside of my mattress doesn’t interfere with intimacy. However, the railing between our two mattresses might as well be a brick wall. A few days ago we removed that railing, and Kim slid over and cuddled with me for a long while, and it was nice.

I need to eliminate barriers like this, because Kim’s touch heals my damaged body and nourishes my aching soul.