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.

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.

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.

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.

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 3^rd. 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?”

Note: Apple responded to my request in a positive way. Read about that here.

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.

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.