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.

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.

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!

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.