Wednesday, August 31, 2011

Moving (part 1 of 2)

IMG_0448It 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.
portlandmaineAnd 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.
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Wednesday, August 24, 2011

Empty Nest…Different Nest

empty nest
(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.
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Thursday, August 18, 2011

Weird Coincidences

Image via Wikipedia
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, 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.


Mitchell Sturgeon

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Wednesday, August 10, 2011

Zen and the Art of Handcycling

2008 454 bikeI 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.

2008 300 bikeOn 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.

2008 334 bikeSo, 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.

Friday, August 5, 2011

On Hope

Orange sunset
(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?

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