I launched this blog over two years ago to help pass the time while engaged in a productive activity – advocating for the disabled community. So, have I done that? To a large extent, I think I have.

By disclosing my day-to-day challenges, and revealing my innermost fears and concerns, I’ve shed light on the kind of issues that many healthy folks are oblivious to. Perhaps I’ve helped some people to better connect with their disabled friends, neighbors, and loved ones. By sharing my general outlook on life and some of my coping mechanisms, I hope I’ve helped disabled folks in some small way as well.

OK, but enough tooting of my own horn. That is not the purpose of today’s post.

I’m not a dedicated researcher. I no longer have the energy or the inclination to be the authority on emerging topics in the medical field. I suggest you go elsewhere for that information. I don’t write elegant prose. If that’s what floats your boat, I can recommend several other blogs authored by more skilled writers, and of course there are always the popular books and journals.

What I think I do a passable job of writing about are the following:

1. My personal story, which is fairly unique, and when conveyed with honesty can even be compelling at times.

2. My personal beliefs and opinions on selected subjects, which, when expressed clearly, might cause you to stop and think a little bit. I know I always enjoy reading a piece that prompts me to find my philosophical bearings.

I walk a fine line in my writing, describing my circumstances frankly so as to lend authenticity to my message. I do this, however, at considerable risk.  The last thing I want is for my portrayal to be misperceived as self pity.  It’s a fine line.

I try to post at least once a week. Today, it is been a week and a day, and I don’t have anything written. So this may be as good a time as any to ask for suggestions from you, the readers.

What would you like to read more about here? Where would you like me to go with the blog? What types of posts have you enjoyed, and what types of posts could you do without? Feel free to leave your responses in the comments section or send me an e-mail at email@enjoyingtheride.com.

Thanks for taking a few minutes to help me overcome my blogger’s block. I need ideas!

The problem wasn’t finding a suitable neighborhood. The problem was finding a wheelchair accessible house or condo therein. Since all of our target neighborhoods were of the urban variety, the houses tended to be old, undersized, and, well, vertically oriented.

We listed our house in May, brimming with enthusiasm and a sense of adventure. By mid-July we were thoroughly disillusioned. We had grown weary of keeping the place “show ready.” We were annoyed with having to repeatedly vacate our house on sometimes short notice, only to learn that the prospective buyers were not interested for any of a number of legitimate or sometimes utterly baffling reasons. We were sick and tired of searching online for a house that seemingly did not exist (with one exception). We halfheartedly dragged ourselves through houses that we considered long-shots at best. We decided to endure this process only until the end of July, and then we would resign ourselves to staying in our existing house, which was not a bad situation at all; it just could have been better.

In June, not long after we listed, Kim stumbled upon the only house we ever found which met our search criteria. When we did our walk-through, it was an obvious match. We didn’t get our hopes up, however, as we needed to find a buyer for our house before we could even make an offer, and we hadn’t had much action on that end at all. Our realtor, usually the eternal optimist, served up a dose of reality as well by predicting that the house we loved would not stay on the market for more than a few days. Luckily, she was wrong.

In late July, just as we were losing interest in this whole undertaking, a gentleman with MS and his wife found our house, and fell in love with it. They were looking for a suburban home that was handicapped accessible. Remarkably, nobody had yet scooped up our target home- thank you Great Recession! So, over a period of a few days we simultaneously negotiated sales and purchase contracts on both homes. It all came together, and on August 26 we closed on our old house at noon and on our new house at 1:30. We were officially homeless for 90 minutes.

It was particularly satisfying to sell our house to someone with a disability. We had put considerable effort into modifying the home to make it accessible for me, and it was comforting to know that those modifications would continue to serve the next family who lived there.

Not onlywas it heartwarming to welcome people whose lives would be improved into our former home, but it was also satisfying to, for once, financially benefit from being disabled. I believe that we sold that house only because it was handicapped accessible. If this had been a non-accessible house, it might still be sitting on the market, like most other houses that are for sale today.

Our new house is not truly handicapped accessible, yet. However, it has the basic layout that will allow for adaptations. Most of the doorways are 36 inches wide. There are no elevation changes inside the house. The master bedroom and bathroom are spacious. The living room, dining room, and kitchen are one open area. The hallway is wide. Nevertheless, I was still concerned that we had overlooked something. I feared that once I got into the house and spent a couple of days I would say, “Oh crap!”

But that hasn’t been the case at all. In fact, I estimate that 90% of the features of the house were more or less what I had expected. Of the 10% of the features which were a surprise, probably 8% of them were of the pleasant variety, and only 2% were of the unpleasant variety. With a grab bar here, a lowered countertop there, and a new roll-in shower, this house will be well-suited for a wheelchair user.

Here we sit in house number six. I don’t know why we would ever move into another one, but we always say that. I’m not in the habit of contemplating the future anymore, though. I’m finding that life is best digested in bite-sized portions, one day at a time. When I find myself pondering long-term scenarios, it becomes too much to swallow.

How am I feeling today? Today, I just love my new house.

If you’re in the neighborhood, please stop in for a visit. Flowers and vegetables are nice housewarming gifts. Beer and wine are better ones.

The view of Portland on Saturday, from the bridge which is a 5 minute walk from our house.

It has been said that a home is the biggest purchase you’ll ever make. We just made our sixth biggest purchase you’ll ever make. It’s a bit absurd that we’ve owned so many houses. In our minds, however, we’ve always felt that each move was warranted, and this one was no exception.

Living in the suburbs has a certain appeal. The area where we lived was lovely. The lawns were well kept. There were so many trees around- even a strip of trees down the middle of the street. They were brilliant green in the spring and summer, and they exploded with color in the fall.

But all of that can get a little boring. People who live in the suburbs tend to get in their cars and go to stores, restaurants, bars, etc., with regularity. The appeal is that you live in a pretty little slice of pseudo-nature, and you can get to where you need to go quickly and easily. But when you can’t drive, then this idyllic notion of suburban living begins to fall apart. Life becomes a glorified house arrest.

Our new place is in the city. There aren’t as many trees, and I’m surrounded by businesses. I don’t hear geese honking, but instead I hear planes landing, and I’m immersed in a variety of other urban chatter too. I’m no longer living in this mini utopia of a suburban home. I’m right in the middle of things, and I think that’s where I need to be at this point in my life. I had become tired of staring at trees.

Within walking distance, or wheeling distance in my case, I have access to:

• a post office
• the city municipal offices
• two major grocery stores
• Police and Fire Stations
• A huge drawbridge
• one really cool corner store/butcher shop
• a gourmet sandwich and wine shop
• one higher-end restaurant
• six or seven medium-end restaurants
• a dozen or so fast food or lower-end (quaint) restaurants
• several bars ranging from snotty to redneck
• two city parks
• a nice walking trail that leads to a lighthouse
• a couple of places to get my hair cut
• a bunch of shops such as hardware stores and drugstores and other specialty stores
• my bank
• my primary care physician – yes, my primary care physician that I’ve been driving to from the suburbs for 11 years.

And downtown Portland, with all of its amenities, is only a 30 minute walk away.

If only there were a dentist and a chocolatier in the neighborhood, I might never have to leave.

I’ve made a couple of test runs around the community, to gauge the accessibility of the sidewalks and of the various businesses. It’s a mixture of good and bad, as you would expect in an older, urban neighborhood. I’ve seen classier city neighborhoods, such as where my friends live on Tremont Street in Boston. My new neighborhood was in decline for most of the previous 15 years or so, but now seems to be making a comeback. As such, there exists a blend of shiny new buildings and interesting businesses, alongside vacant spaces and dive bars. In this sense, I suppose my neighborhood embodies a cross-section of Americana, especially in these tough times.

But location was only half of the equation. The other requirement was to find a home that would work for me internally – a home that was wheelchair accessible or could easily become such, like the one I was leaving. This was the more difficult task, and I’ll discuss it in my next post.

Here’s one quirky story about my new neighborhood. The enormous, white german shepherd who lives next door wails like a siren whenever he hears a siren, and since we’re not far from the police and fire stations, this has been a couple of times a day so far. I’ve never heard a more spot-on siren impersonation.

(Photo credit: Robert S. Donovan)

Today our youngest child left for college. Although the tuition costs will be daunting, I half expect our finances to improve on balance. Our grocery bill and electric bill should be a fraction of their former selves.

With our older child already living in an apartment and going to grad school, we are officially in the empty nest stage. There’s a lot written about the pros and cons of this period of life. The consensus seems to be that once you get over the shock, it can be a very enjoyable phase. I expect that to be the case, but of course MS will throw a wrench in the works.

Kim is my primary caregiver. She does 95% of what I need done. But Zach was our 5% backup, and that was an important 5%. For example, in May Kim was able to attend an out of town conference because Zach was here to help me out. I’m afraid that may have been her last overnight business trip. At the same time that we’re experiencing a decrease in caregiver availability, the need for caregiving continues to go up a little each day, as MS continues to work its magic on my central nervous system.

One way that we are compensating for this imbalance is to relocate from the suburbs into the city, much closer to where Kim works. In a pinch she can zip home and extricate me from whatever dilemma I’ve gotten myself into. Also, I plan to come out of my introverted shell, to charm and enchant any number of unsuspecting neighbors for the express purpose of being able to call on them if I can’t reach something on a high shelf, for example. Who knows, maybe I’ll discover that getting to know people and making new friends might be enjoyable as well as utilitarian. I’ll report back later and let you know.

We’ll be leaving our suburban nest for our urban one over the next couple of days. Wish us luck.

Dear Readers,

I am a born skeptic.  As such, I am reluctant to accept sensational or non-scientific explanations of how the world works.  For example…

I don’t believe in fate, destiny, or karma. I don’t believe in astrology or numerology. I’m still on the fence regarding meteorology.

I don’t believe that everything happens for a reason, or that anything is meant to be. And please don’t bore me with your conspiracy theory du jour. 

I don’t believe in ghosts and spirits and psychic phenomena. I don’t accept that magnets or miniature pyramids can cure your ills (until I see a series of double-blind, placebo-controlled clinical trials that prove as much). I take nothing that a salesperson says at face value.

When somebody sends me an amazing photo or tidbit through e-mail, I often go to www.snopes.com, to help me decide if it is a myth or if it is real. More often than not, it’s an internet hoax.

I don’t believe that prayer circles will bring rain to drought-stricken Texas.  I have no superstitions (to which I will admit). I’m pretty sure Atlantis never existed, and that Bigfoot, Yeti, and the Loch Ness Monster are pure crap (sorry,Marshall).

I expect that life exists elsewhere in our vast universe, but I am skeptical of every human report of interaction with said beings.

I admit that there is so much that I do not know, but I resist the urge to fill in the gaps with supernatural explanations. It’s just the way I’m wired; I have nothing against others who think differently.  Your lives are probably more colorful than mine, although I like my life just the way it is, thank you.

Having said all this, I’m still thoroughly amused by weird coincidences. For example, here’s my new license plate which pays homage to a very personal coincidence.

Have a happy, skeptical day.

Sincerely,

Mitchell Sturgeon

I wrote a post a couple of weeks ago about all the toys that I’ve sold because MS doesn’t allow me to play with them anymore, things like snowmobiles, ATV’s, and our camper. I ended the piece by mentioning an item that I’d not exactly given up because I hadn’t dared to try it this year – my handcycle. I rationalized that if I didn’t even attempt to ride it then I wouldn’t have to suffer the disappointment that I’ve suffered with so many other toys. This was a blatant act of denial that I nevertheless felt entitled to. Just last week, though, I finally relented and gave the handcycle a go.

Good news- I can still ride. It isn’t pretty, and I can’t go very far, but I’ve now been on four short rides in the last two weeks. I can still advance the cycle down the road, at least a perfectly flat road. I employ energy conservation techniques in order to put any distance on the ride at all. For example, I coast when I’m able to coast, which by definition on a round-trip ride is about 50% of the way. I simply have to take a break when I get tired. I can’t worry about bettering yesterday’s time or yesterday’s distance. This is about as unnatural as asking my dog Phoebe, the West Highland Terrier, to just casually watch those damn squirrels cross the yard, willy-nilly, unharassed. But I’m left with no choice.

I’m not sure how beneficial handcycling is to my physical well-being. I don’t know if it’s the case that I get so little exercise that even this tiny bit is magnified in importance, or if it is the case that this scrap of exercise is so irrelevant that it can’t possibly impact my health at all. Bottom line, though, is that it doesn’t really matter. If I get any physical benefit from this modest exercise, then it is icing on the cake, because it’s good fun, and fun is something in short supply when you have MS.

On this morning’s ride the weather was perfect. It was a bright, sunny day with comfortable temps and low humidity. The neighborhood was quiet, the chaos of the morning commute having subsided. As I began to glide through our quaint, suburban community, breeze in my face, my all-too-well-rested cardiovascular system shaking off the cobwebs, I began to experience a peaceful bliss. Ahhh, life was good. But then my instinctive defense systems kicked in. The part of my brain which is responsible for protecting me from future heartbreak sent an alarm out, “Hey, don’t fall back in love with this activity. It will be all that much more sad for you when you’re no longer able to do it.” That kinda killed the mood.

So often these battles take place wholly in our subconscious, making decisions on our behalf without the participation of our conscious selves. In this instance I was fortunate enough to lure the discussion into the light of day for further examination.

The debate could be boiled down to this. Should I temper my enjoyment of an activity that I’m almost certainly not going to be able to experience for much longer, so as to protect myself from future sorrow, or should I take advantage of any opportunity, no matter the circumstances (within reason), to enjoy a moment, and deal with the fallout later. I, the conscious I, decided clearly in favor of the latter. Carpe diem, and all that. I further reasoned that even though the activity that triggered this singular pleasure may not be available to me for much longer, there are still other ways to achieve that same feeling. When handcycling does go away for good, it won’t take all opportunity for peaceful bliss with it.

So, does that settle the debate? Probably not. My conscious self is not fully in charge. I only hope that subconscious Mitch indulges me on this one.

I’m no Buddhist, all that meditation and talk of Nirvana turns me off, but I do subscribe to several of the tenants of Zen philosophy. In particular, it’s helpful to stay in the moment. Moments will come and they will go, but only this moment exists right now. Make the most of it.

Let’s explore what it is about handcycling that brings me such joy. It must stem from the fact that I am propelling myself through space under my own power, since I can’t think of another instance where I can do that anymore. Sure, you could argue, existentially, that I self-propel myself through life using my power wheelchair, which I bought with money that I earned while I was gainfully employed as a healthy person. So in a sense, the effort that I put forth my entire working career is allowing me to self-propel via my power wheelchair today. That doesn’t really cut it though. It’s a logical rationalization, something you might say to make yourself feel better, but it does not induce a feeling of peaceful bliss.

How does handcycling accomplish this? The process of sending a signal from my brain, through a frayed and fragile central nervous system, to the last few muscles in my body that are still accepting assignments (my biceps, triceps, and pecs are hanging in there the longest), and having those muscles respond by moving my body through space- it’s just a magical feeling.

All the logic in the world can’t make that happen.

(Photo credit: @Doug88888)

A well-meaning friend once wrote to me, as part of a discussion about some new MS treatment, “If you don’t have hope, then you have nothing, right?”

I disagree.

There are several reasons that I’m able to drag my sorry ass out of bed each morning, still anxious as ever to see what the day will bring. These include, in no particular order:

· An abundance of love, friendship, and other positive connections with hundreds of people.

· An utter fascination with the world around me, both the human race and the natural world.

· An insatiable, intellectual curiosity to find out how and why everybody and everything works.

· An apparently genetic desire, or possibly one learned in early childhood, to be a good person and make people like me and be proud of me.

· The collection of daily activities that I like to call “my pathetic little life.” To be clear, I coined that term well before becoming disabled. These are things like answering e-mails, writing my blog, building Excel spreadsheets for any reason at all, opening the mail, watching my favorite movies and TV shows, and reading. I begin to miss my pathetic activities when I’m away from them too long, such as when we go on vacation.

· The fact that I am in relative comfort – largely pain-free, and well taken care of.

· A strong desire to see how everything eventually turns out – my life, the lives of my friends and loved ones, each Red Sox and Patriots season, world peace, social progress, etc.

· Hope for a cure? No, not so much.

I don’t see anything on the horizon that even hints at a cure for Primary Progressive MS. That means that the eventual answer is almost certainly not in clinical trials yet. It may not even exist in the wildest dreams of medical researchers thus far. Once it is in clinical trials, it will take many years to reach the general patient population. By the time that happens, even if the cure is robust, there’s a good chance that the significant, irreversible damage that I have already suffered, and will suffer in the coming years, may render said cure ineffective for me. So that’s not what keeps me going. Hope? It’s a minor player.

But I am not devoid of hope. Here’s what even a little bit does do for me. It keeps me on the lookout for these potential cures and treatments. I’ve tried about one treatment per year since my diagnosis, and will likely keep trying. However, I must confess that I’m beginning to tire of this game a bit, and because of that fatigue I’ve raised the bar for what qualifies as “worth a try.”

This meager level of hope contributes little to helping me get through each day, though. Even if I had zero hope that my condition would someday stabilize or even improve, I wouldn’t be left with nothing. I would be left with acceptance, and that’s something.

These reflections are not intended as advice. I’m only relating how it is that I navigate my personal minefield. My approach is not necessarily superior to another person’s who may rely on a sense of hope about the future. Perhaps that’s simply the some folks are wired, or maybe they don’t have as much to be grateful for as I do. We all have our own coping mechanisms. I just wanted to share mine with you, in case you were wondering.

So my medical situation is borderline hopeless. Does that mean my life is?

Hardly.

I’ve owned more than my share of man-toys over the years. The minimalists among us might argue that this is nothing to be proud of. But I’d like to think that I owned my toys for only the best of reasons- to help me live my life to its fullest. I never felt like I was flaunting my financial success, or in any way being wasteful or frivolous. But that’s just my take on the situation.

Over the last three years or so, I’ve been parting with these man-toys at a steady pace (I mean no offense to my female readers who also enjoy such items…it’s just that in my world these are principally male extravagances). As my MS has progressed, especially in my arms and hands, I’ve divested myself of the toys that I can no longer enjoy. I’ve held onto them as long as I could, employing adaptations where possible, until it just didn’t make sense anymore or became a safety issue. Below is a brief summary of the items I’ve parted with:

Golf clubs– I had a love/hate relationship with this sport, but I did have one amazing shot, and wrote about it here.

Hunting Camp Lot– We sold our original hunting camp and purchased property to build a new one, but ended up selling the land so that I could buy my iBot wheelchair (arguably a crippled-man-toy). I still enjoy some limited deer hunting, which I wrote about here.

2 Snowmobiles and a covered snowmobile trailer– Snowmobiling was one of my greatest passions, and I wrote about it here.

4WD, full size pickup– I loved this pickup, but after a while I couldn’t manage to get up into the seat anymore.

Pop up camper– This camper and others before it were a significant source of good, wholesome family fun. Eventually I couldn’t get up the stairs into the camper, so we sold it.

2 ATV’S and a double trailer– I used these ATV’s for recreational riding with Zach and for deer hunting. They gave me passage into the wilderness.  I sold them two years ago when I couldn’t get on and off of them anymore, and had difficulty operating the controls.

Lawn Tractor– I just sold my lawn tractor this morning. Our lawn is not well suited for a big mower, but we bought it anyway when we moved into this house so that I could enjoy cutting the grass. Each year it became a little more difficult for me to get into and out of the tractor. Yesterday Kim and I attempted an overly-elaborate and ill-conceived boarding procedure that nearly resulted in her throwing out her knee and me crumpling to the floor. But we persevered, and I mowed the lawn one last time.

2 kayaks– I haven’t sold these yet, but neither have I taken them out in two years. My kids keep promising that they’ll use them; I keep threatening to sell them for lack of use (sell the kayaks, not the kids…they are already 18+ years old).

Again, some would contend that ridding myself of all of these material possessions is not entirely a bad thing. Simplifying my life and impacting the environment less is to some extent noble. The other consolation has been the influx of cash that I’ve experienced each time I sold one of my toys, usually on Craigslist. This is not to say that I’ve been happy or even indifferent about losing the ability to enjoy any of these activities (except maybe golf), but the cash takes a tiny bit of the sting away. Imagine if I was required to pay to relinquish these life passions.

I must say that I’m pleased with how I’ve coped with these losses. I’ve not allowed myself to spend too much time lamenting my misfortune. I’ve simply accepted my fate and moved on. Despite these disappointments and others not mentioned here, and with the support of family and friends, I’ve continued to live a contented life.

Oh, there’s one more toy to discuss:

Handcycle– I’ve ignored my handcycle all spring and summer. I keep coming up with excuses, like it’s too hot or too cold outside, or I’m too tired or that I need to save my energy for an activity later in the day. But I know what’s really going on. I can’t face the possibility that, like all my other toys, I just can’t play with this one anymore. My beloved handcycle has been a savior for me throughout my disability. I wrote about it here.

I have a plan. If I continue to simply avoid my handcycle, then I won’t be let down, hence preserving the notion that I can still ride it whenever I please. Up to this point in my ten-year MS ordeal I’ve not allowed myself the indulgence of denial. Maybe I will, just this once.

25 Years ago today I validated the best decision I ever made, and became married to the love of my life, Kim.  I still can’t believe how fortunate I am.  I love you honey.  Happy Anniversary.

To read more about our courtship, click here.

“All change is not growth, as all movement is not forward.” Ellen Glasgow

For most of my life I’ve been a changoholic. Couldn’t get enough of it. Here are some examples:

Immediately after college, in 1986, I took my first job in Cleveland, a city I had never visited prior to my job interview, and where I was acquainted with no one. I just needed a change from Maine (which I returned to three years later).

In the year 2000, my wife and I decided to uproot our family from our hometown and move from northern Maine to southern Maine, just because we needed a change in scenery.

After 25 years of marriage, we have our fifth house up for sale, and are searching for our sixth. The longest time that we have lived in any house is six years. We renovate the houses to the point where they suit us perfectly, and then something changes.

When I was a working professional, one of the most universally dreaded events was a reorganization. But I loved reorganizations. There was usually something significantly wrong with the status quo business plan, and I always viewed these changes as an opportunity for us to get it right. Furthermore, reorganizations allowed me to put my mark on the new business strategy, instead of being constrained by an inherited one.

I could (try to) impress you with a psychological analysis of why I have always craved change, but that is not my point here. My point here is that my appetite for change has, well, changed.

Whereas change used to fuel my very existence, today I would be thrilled if nothing ever changed again. In the past, change delivered a mixture of the good and the bad, but on balance I felt it was a positive force. Change still brings a mixture of the good and the bad, but is now heavily slanted toward the bad.

Recent good change

1. Son graduated from high school
2. Daughter graduated from college

Recent bad change

1. Never mind. I won’t bore you with the litany of changes MS has ushered in.

Potential future good change

1. More weddings, graduations, and babies coming from our family’s younger generation
2. Me winning the lottery

Potential future bad change

1. I won’t frighten/alarm/sadden you with a list of the changes MS has in store for me in the coming months and years.
2. Sarah Palin as President

I often sit here and think, “If the disease progression would just stop, I could be satisfied with a life like this.” After all, it’s not the devil I know that frightens me.

But what a self-indulgent wish this is. Doesn’t the cancer patient or the ALS patient feel the same way? Don’t the elderly? Doesn’t everybody to some extent? Since each day brings us closer to our inevitable exit, isn’t the desire for time to slow down or stop simply a manifestation of our survival instinct? When I begin to travel down this well-worn path I try to snap myself back to reality, and live in the present instead. I have mixed and temporary success with the snapping-back, but I keep working at it.

So how has change been treating you lately? Do you embrace it, dread it, or do you just roll with the punches?