The Hardest Thing about Having MS

I was interviewed earlier today by a health marketing company. Don’t look for a magazine article about me, though. These folks are conducting research on primary progressive multiple sclerosis (PPMS) by speaking with patients. The marketing company paid me for my time with a $75 gift certificate from Amazon.com. I must remember to buy something fun with that money, not just put it in the pot and have it pay for my next order of printer ink.

The interviewer asked lots of questions, but the only one that stumped me was, “What would you say has been the hardest thing about having MS?” So many good choices – which one to pick? I fumbled and stumbled and didn’t give a very good answer. But after thinking about it for a while, I know what I should have said.

For me, the hardest thing about having MS is that my future has been stolen. I received my diagnosis four days after my thirty-eighth birthday. My life was pretty sweet at the time. I had an amazing wife, two beautiful children, a career on the upswing, all the man-toys I wanted, and so much more. Even with that success, I felt that my best days were still ahead of me. I no longer feel that way.

Quick disclaimer – I know this isn’t terminal cancer, ALS, or Alzheimer’s. Those diseases don’t only steal your future, they stomp all over it. But PPMS is no lightweight.

I always had big plans of where I wanted to be in five, ten, or twenty years. I wasn’t naïve. I understood that these plans would probably never play out exactly the way I imagined them, but my vision for the future was optimistic, and rightfully so. Chasing these dreams was a big part of what motivated me to get out of bed each day.

I still plan for the future, but only in terms of months, because I can’t imagine what life will be like years from now. How much longer will I function like I currently do? Will I always be able to live at home? Will I remain a contented person forever?  I can’t know. I mostly try not to think about it.

Being the glass-half-full kind of guy that I am, the fact that MS has stolen my future does have one benefit. I now live more in the present than I used to, one day at a time and all that jazz. This is a good thing.

Today is full of challenges, but I’m meeting them. It’s tomorrow that scares me.

What’s the hardest thing you’ve had to deal with because of MS (or some other challenge)? Do you feel MS (or anything else) has stolen your future?


Note: If you have PPMS and you would like to take part in this research, let me know.

My MS Radar and Other Intuitive Devices

Kim and I attended a wedding in Massachusetts last summer. Throughout the ceremony and at the reception, I noticed a lady in her thirties using forearm crutches. My MS radar came on, and I grew confident.

I encountered her when we were both leaving, and I asked, “MS?”

“Yup.”

Score! We enjoyed a long conversation where we compared notes about how we’ve dealt with the disease. I gave her an iBot demonstration and told her about my blog. Good stuff.

Fast-forward to this past Friday night. Kim and I participated in happy hour at the Snow Squall, as we often do. I saw a lady work her way through the crowd using forearm crutches. As Kim and I ate our meal, I stole glances at her to try to figure out if she had MS. I couldn’t decide. There was something about her that made me think she might not, but then again…

As we prepared to leave, I took a chance. “Excuse me for interrupting, but I was admiring your forearm crutches. I have a pair just like those. I’m curious if you have the same condition that I have.”

“Oh, you’re not interrupting. What condition do you have?”

“Multiple sclerosis. And you?”

“I have nerve damage from radiation treatment that I received forty years ago.”

I wasn’t embarrassed. She was a sweet lady, and Kim and I spoke with her for ten minutes before we left. Because I’m so obviously disabled, I get a pass on what would normally have been a social faux pas.

The next day, I said to Kim, “There was something about that lady at the Snow Squall last night that made me unsure if she had MS, even before we spoke to her, but I can’t put my finger on it.”

“I know what you mean. I think she looked too…healthy.”

“That’s it!”

Progressive MS kicks your ass in a variety of ways. By the time you have visible walking problems, you’re no longer as perky, energetic, or healthy looking as this woman was.

One setback won’t discourage me from approaching people in the future who I think may have MS. There’s such a huge upside if I’m right. Meeting new MS friends is always rewarding.

Not only am I proficient at guessing if someone has MS. I also have strong gaydar. I can tell if a person is straight or gay almost immediately. I know, it shouldn't matter, and it doesn't. It's just the way my brain works. Incidentally, I'm a big supporter of gay rights, and I have lots of gay friends and readers.

We used to own a Ford Explorer. The mileage got high, and the maintenance bills piled up, so we decided to sell it. I advertised on Craigslist and divulged the known problems.

I received an email from Jessie, and she wanted to come look at the vehicle the next day.

There was a light, steady rain falling when Jessie knocked on the door. I invited her in. She was medium height, stocky build, short haircut. She asked me detailed questions about the vehicle. This woman knew way more about cars than I did. My gaydar started twitching, but I was far from certain.

Jessie seemed trustworthy, so I handed the keys to her so she could take the Explorer for a drive. Being in a wheelchair, I couldn’t exactly accompany her. She drove around for about ten minutes, returned, and crawled underneath the vehicle for quite some time. She didn't mind the rain. The brake fluid was low, so she went to the local NAPA Auto Parts store, bought some fluid, topped off the reservoir, and crawled back under to see if there were any leaks in the brake lines.

Satisfied, she came in the house to start the negotiations. We went back and forth a little bit and agreed on a price. The vehicle was registered in both my name and Kim’s, so we needed Kim’s signature, but she was at work.


Jessie said, “Well, my partner will be picking me up in a few minutes. I can take the paperwork to Kim at her school so she can sign it.”

Ding, ding, ding. The word “partner” was all my gaydar needed to hear. I am so good, I thought to myself. I just see things other people don’t.

It so happened that there was a gay-rights referendum on the ballot that year in Maine, and the election was only a few weeks off. I thought this would be an excellent opportunity to get a perspective on the issue from a member of the LGBT community.

“I’m curious to know, how excited are you about the gay-rights referendum? If it passes, will it make a big difference in your life?”

“I don’t know what you’re implying, but for your information I’ve been married to my husband for twelve years and we have two children.”

“But, but,” I stammered. “You said partner…”

“My BUSINESS partner. My business partner is coming to pick me up in ten minutes.”

It served me right for stereotyping. I backtracked and apologized and tried to extract my foot from my mouth. Jessie let me off the hook and we continued with the transaction. I called Kim to explain that the buyer would be arriving shortly with paperwork to sign.

I added, “Don’t ask her if she’s a lesbian. I already did, and she’s not.”

“You didn’t.”

“Oh yeah I did.”

You know what else I bet I'm good at? Guessing if women are pregnant. I'm going to try that next.

Top 10 Reasons You Don’t Read My Blog

I’ve always said I couldn’t own a restaurant, because if people didn’t show up in droves for every meal I would take it personally. It turns out that having a blog is just as bad. If large numbers of people don’t visit each day I wonder what's wrong with me. So, in my typical self-absorbed manner, I’ve come up with the top 10 reasons you don’t read my blog.

Reason #10 I am an egotistical narcissist, and this post proves it – I certainly do write about myself more than anything else. I like to think it’s because I’m dealing with my challenges well, and I want to share these experiences with folks who might benefit from them. But maybe I really am an egotistical narcissist, and my motivation behind this entire post is to fish for compliments. You see right through me.

Reason #9 You didn’t know this blog existed – There are roughly 7 billion people on the planet. Only a few hundred, or maybe a thousand people even know this blog exists. So roughly 6,999,999,000 people have the most common reason of all for not reading my blog.

Reason #8 You forget to read it – I hear this a lot. If you are only being polite, then the real reason you don’t read it is probably somewhere else in this list. If you are being sincere, I have solutions. The easiest is to have each new post emailed to you. There is a box on the top right-hand corner of my homepage where it says “enter your email address.” Then you push the subscribe button. You’ll receive a confirmation email that you need to respond to in order to finish the subscription process.

Reason #7 I make you sad – I don’t sugarcoat my situation, and some people are saddened to read about my life. They want to spend their time with happier thoughts. I get that.

Reason #6 I show you the future – For readers who have MS, you may think you’re looking in a crystal ball, and you don’t like what you see. I get that too. But remember, most of you will never deteriorate to the point I already have, thankfully (there I go, pulling a #7 again).

Reason #5 You are annoyed by how well I’m coping – I think this is a reason that some people, with MS or with any other difficulties, are not inclined to read this blog. No matter how hard you try, you can’t seem to cope with your problems as well as I do with mine, and you don’t need me to constantly remind you of that. This is a tough one.

Reason #4 You don’t have all the advantages I have, so you can’t identify with me – Maybe you don’t have a great support system, a loving spouse, or financial stability. “Of course he’s content,” you say to yourself. “He should try to walk in my shoes.” Yup, I understand where you’re coming from with that, even though I can’t walk in your shoes.

Reason #3 I think I’m funny, but I’m not – You probably have a more highly refined sense of humor than I do. That’s unfortunate.

Reason #2 My writing is not that interesting – I get that, especially some weeks, like maybe this week, and last week, and the week before. But three weeks ago? Come on! That was some good shit.

And the #1 reason you don’t read my blog is that it’s no fun for you – If you find that reading my posts is a chore, then maybe you just need to let me go. To extend the restaurant analogy from the opening paragraph – you can walk right by my door and go to the blog down the street. I won’t even see you. That’s what I often do with both restaurants and blogs.

So tell me, what’s your reason for not reading this blog? Wait. Crap. Never mind. My bad.

I am Reluctantly Writing About the Weather

I don’t give a damn about other people’s weather, and here I am writing about mine. At least I have an angle – the wheelchair angle.

My life is so different in winter as compared to summer. In warm weather the area I can independently navigate is large. It starts with the wooden deck and
brick patio in my own backyard. Then, in my immediate neighborhood I have bars, restaurants, stores, banks, the post office, City Hall, my doctor’s office, several parks, oceanfront vistas, and more. If I jump on the Greenbelt Pathway, I can be at Bug Light Park in twenty minutes, with sweeping views of downtown Portland, Casco Bay, and lighthouses. If I go in the other direction and cross the bridge to Portland, I have Maine’s largest city at my disposal. Finally, if I take the bus (and I have a bus station about a block away) I gain access to all of the greater Portland region.

In the winter, I lose almost all of this, at least independent access to it. The double-headed monster of cold and snow drives me indoors. I'll occasionally have somebody bundle me up so I can head out to one of the lunch places closest to me. That’s it. Otherwise I wait for Kim to give me a ride somewhere interesting, or I stay in my home, which is a wonderful home.

You can imagine how much I look forward to spring weather. My world opens up. This year it will take a little longer than usual because of the heavy snowfall we experienced. The snow banks are just starting to shrink.

Because of my book project, I’ve had something to keep me occupied indoors all winter. But I’m ready to venture out. No, the word ready doesn’t do justice. What word…what word?

I know: I’m aching to venture out.

My redneck friends would say: I’m hankering to get out.

My literary friends would say: I have a longing, nay a hunger, to venture forth.

My engineering friends would say: The addition of an outside option would bring me greater utility, so I desire that change in state.

My California friends would say: Dude, why do you live in Maine, in the winter, in a wheelchair?

Some Pictures

The ocean at the end of our street has been frozen for weeks.

Nick took this picture during a storm at my beloved Bug Light Park.

Amy took these pictures from the comfort of Nick's truck (smart girl).

Talk to Old People

When I set out to write this book about my mother and me, I interviewed a lot of people who knew her back in the day. With very few exceptions, these folks are now old people*, and I don’t think they mind me describing them as such.

I accomplished what I set out to do in these interviews. I gained greater insight into what my mother was like before I came along and when I was too young to remember. But these encounters gave me more than just material for my book. I was able to reconnect with folks who were so prominent in my childhood. If not for this project, I wouldn’t have had an excuse to contact many of these people. These conversations were fun, informative, meaningful, and even therapeutic both for them and me.

So, my message in this blog post is to find any pretense to talk to old people, formally or informally. Consider recording the conversations where you ask them to remember details from long ago. If not, you’ll forget what they said, and it will be lost forever.

One more thing – if you have any stories about my mother that you haven’t already shared with me, please shoot me an email and we can correspond, Skype, text, telephone, or meet at a bar and have a drink about it.

*Old People: anyone ten years older than whatever age I am at the time.