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?

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?

Better?

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.

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

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.

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:

Synopsis

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.

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?”