Empty Nest…Different 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.

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 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

Zen and the Art of Handcycling

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.

On Hope

(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.

The God Complex

Image via Wikipedia

What follows has nothing to do with religion.

At this point in the evolution of my blog, I’ve managed to refrain from political commentary. Other than complaining about mind-numbing political ads, I’ve stayed off my soapbox (it’s not wheelchair accessible anyway). For one thing, I risk alienating at least 50% of my potential readers by spewing any political rhetoric, thereby detracting from my core message about living a contented life as a disabled person. However, I believe I can discuss the general state of politics without being political- without revealing if I am a democrat, republican, or something else altogether.

As I wander aimlessly through my day-to-day existence, I find myself drawn to certain types of people. I believe that there exists a continuum between those at one end of the spectrum who are open-minded and easily confess their ignorance versus people at the other end who are resolute in their convictions and believe they possess the answers to even the unanswerable questions. If this were a numerical scale from 0 to 10, I would be a solid three (closer to the wishy-washy end than to the know-it-all end), and would be most interested in spending time with other 3’s (plus or minus about 2 points, you know, give or take).

People can be open-minded to the point of being absolutely spineless, a 0 or 1 on my scale. The more intellectual folks in that group can make you think twice about any subject, but come off as a bit tiresome after a while. But I am more wary of, and more easily bored by anyone who thinks they have all the answers. So what is it about our democratic system of government that compels us to elect only politicians who are solid 9’s and 10’s, or at least pretend to be?

Our world – our economies, our societies, our environment – is so complex, isn't it absurd for anyone to claim to understand how it actually works? Yet, if a politician so much as changes her mind once or twice in her lifetime, or admits in public that he is undecided on an important issue, then we label them indecisive and disqualify them from public office. How did we get to this point? We are the voters, after all, so we have no one to blame but ourselves and our self-deluded concept that people who act as if they know everything actually do.

People who score high on my makeshift scale can be said to have a God Complex. They believe they have the answers to questions that are (currently) unanswerable by humans. Why can't we elect candidates who humbly admit they don't know the answers, but who are intelligent and open-minded, and will carefully and thoughtfully engage in trial and error analysis until an optimum, or at least acceptable solution is reached?

I will tune in to the weatherman, I will quaff a beer with the science teacher, I will vote for the politician who admits that they don't have the answers, but enjoy pondering the questions- the person who will only take action based on deliberate and unbiased consideration of the best possible information, but will course-correct as new evidence emerges. I'm acquainted with several of these people, but none of them would be crazy enough to run for political office. How do we change that?

Winston Churchill's famous quote is appropriate here: "It has been said that democracy is the worst form of government except all others that have been tried."

Much of our democratic political system is utterly insulting to our intelligence. I've mentioned the political ads in an earlier post, and here I've spoken to the fact that our candidates are not allowed to be flexible and thoughtful. So I have to believe that someday, probably later rather than sooner, democracy will evolve into something better than what it is today. At least I hope it does.

This rant was partially inspired from a Ted talk by Tim Harford. Please take a few minutes to listen to somebody who expresses himself a lot better than I do:

My Personal “Going Out of Business Sale”

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

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.

Change is Good! Well, Not So Much Anymore

“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?

Have I betrayed my childhood self? (redux)

I first published this post in 2010.  Today I dusted it off, spruced it up a bit, and again present it for your reading pleasure:
 
I can still remember the questions I pondered as a child (I was a frequent and vivid ponderer):

What will my job be when I grow up?
Who will I marry? (Will she be hot?)
Where will I live?
What will my kids be like?
Will I grow old?  How old?

I also recall some of the promises I made to myself as a child:

I will let my kids stay up as late as they want to.
I will eat dessert whenever I want to.
I will become rich.
I will become famous.
Nobody will ever tell me what to do.

I didn’t keep any of those promises.

Less evolved Mitch (Mitch of only a few years ago) sometimes felt guilty about failing to live up to my childhood expectations. More evolved Mitch understands that I hold no obligation to my childhood self. Screw him. He didn't know what he was talking about. He was just a kid. Granted, he was a darn cute kid, but a kid nonetheless.

We sometimes treat our childhood dreams with undue reverence.  These dreams are necessary from a developmental perspective (in order to become an adult, one must first envision it), but they should not be construed as a blueprint for life. Our juvenile aspirations are misguided because children cannot grasp life’s complexities, and don’t appreciate its subtleties. The degree of wisdom necessary to do so is acquired later in life, if ever.

In retrospect, these are the questions I should have pondered as a child:


Will I be lucky enough to find real love? (I was)
Will I have my health? (I did for the first 38 years)
Will I lead a happy and contented life? (I have)
Will I have a fulfilling career? (not really, but it paid the bills)
Will I be a good person? (with some exceptions, I think I have been)

And these are the promises I should have made to myself when I was a kid:

I will not presume that life owes me anything; any positive experiences beyond being born are simply frosting on the cake.

I will be a lifelong learner, a rational and open-minded thinker, and a candid, yet polite, communicator.

I will not waste precious resources on jealousy, hatred, or revenge.

I will try to do my small part to improve the human condition.

I will not blindly adhere to hollow societal norms.   
I will live each day as if it will be my last.
I will be true to my family and friends.

I will be reliable and humble.

I will have fun, lots of it. 
Even when life becomes difficult, I will try to persevere.

If I had made these promises to myself, could I have kept them? Let’s just say that at 47 years of age, I’m still a work in progress.

If young Mitch could have seen the future, I’m quite certain that he would have been disappointed with what he saw. But young Mitch wasn’t smart enough to appreciate what a good life looks like. How could he have? He was just a kid.

The Parable of the Farmer and His Four Sons

Once upon a time, in a faraway land called Happy Valley, there lived a good and honest sharecropper and his four capable sons, who were actually two sets of mirror-image twins. One set of twins was particularly sturdy and strong. They could stand up to anything. These brothers were so connected to one another that many considered them to be joined at the hip. The other twins were less strong, but more agile, and were best suited for complex farm chores. They worked hand-in-hand to assist the Farmer.

All of a sudden one of the particularly sturdy sons began to feel strange. He grew tired and listless. About a year later his sturdy twin began to feel the same way. They had each become lame. They continued to get worse and worse until after a number years they could not help out with the farm work at all. Luckily, the other set of twins remained healthy and used their agility to keep the farm moving.

About five years later, one of the agile twins began to feel weak, just like the sturdy twins had years earlier. And sure enough, after one more year, the other agile twin followed suit. Everybody slowly got worse over time. Today, the formerly sturdy and strong twins, who could stand up to anything, can't move at all and must be carried everywhere. One of the agile twins can still move around a little bit but can't accomplish much. That leaves all of the farm work for the healthier agile twin, but he is getting more lame every day.

So now the Farmer is relying on the semi-lame, agile twin and the goodwill of the farmer’s (lovely) wife to fertilize the soil, plant the seeds, and harvest the crops…of life.

The End (for now)

Cast of characters:

The sturdy twins – my left leg and my right leg
The agile twins – my left hand and my right hand
The Farmer – me

The moral of the story:

When things start to fall apart, you better make the most out of your remaining assets, and you better have a steadfast support system. “Buying the Farm” is to be avoided until all other avenues have been thoroughly exhausted.

Now that you’re privy to the subtext, feel free to go back and re-read The Parable of the Farmer and His Four Sons. It draws the arc of my life story these past ten years.