Monday, September 28, 2009

One September Day in 1969

One September day when I was only five years old I walked down the stairs in the morning expecting my mother to be preparing breakfast for me. Instead my Dad was sitting at the kitchen table, looking quite haggard. But he was a shift worker, so seeing him looking like he’d just been through the wringer first thing in the morning was not unusual.

"Where's mom?"

"She’s in the hospital. She broke her neck."


“She fell down some stairs.”

That's all I remember of that day.

photo of Mom, 2007, about a year before she passed away

We lived in a rural area without a proper hospital of its own. So whenever we visited Mom for the next year or so we had to drive an hour to the Big Hospital in Bangor or five hours to the Really Big Hospital in Boston. Toward the end of her time away she lived in a convalescent home in Bangor, where she was drilled in the basic skills of surviving at home as a quadriplegic in the year 1970.

My memory of these events so early in my life is sketchy, but I recall two things about my initial visit with Mom after her accident, quite vividly. First, she had some sort of a steel rod that appeared to be screwed into the top of her partially shaved head. I’m sure this was a traction device used to stabilize her fractured cervical spine. That was disturbing. Second, my mom had a genuine smile on her face when she saw me, just like she always had, and she spoke to me with that same comforting, maternal voice that she always did, as if nothing scary was going on at all.

Although that visit was no doubt a bit traumatic for me as a five-year-old boy, kids are emotionally resilient. I cannot imagine how difficult this meeting must have been for a 35-year-old mother of three who had gone from a vibrant young woman to a permanently crippled quadriplegic, literally overnight. From where did she summon the strength to offer her youngest son, in a convincing manner, the very same expressions and tone of voice that I had missed only a few mornings earlier at breakfast? I didn’t care much for the steel rod apparently screwed into her head, but it was clear to me that this was indeed my mom, pretty much unchanged in the ways that mattered most to me.

My father maintains that I was the child most deeply affected by my mother's accident. He says that I retreated into a bit of a shell. I don't know this for sure, because it was so long ago, but I suspect it was not so much the accident itself but rather my parents’ absence from our home for over a year that may have permanently affected my psyche in some way. I recall that when Mom finally returned home, even though she was a quadriplegic, things were pretty much okay again in my book.

Not only was my mom away for a year, but so was my dad, essentially. During that time he was either visiting my mother in a far away hospital, working long hours at the paper mill, working his second job operating a newspaper press, helping the carpenter build the new handicapped accessible house we would live in (and he still lives in), or he was sleeping. Granted, he had lots of childcare help from neighbors, friends and relatives. But I didn't get much face time with my parents as a six-year-old.

If these early childhood events did indeed have some sort of a deep, lasting, profound effect on me it was probably to teach me the following lesson. No matter what happens, just dust yourself off, adjust to the new realities of your life, and carry on. Whenever possible, do this with a smile.

Friday, September 25, 2009

My MS Story Chapter 10 – You can’t handle the truth! OK, maybe you can.

It's an awkward position to be in- strategizing about the ideal time to reveal the truth to someone. But then again, MS has placed me in quite a few awkward positions.

The job offer came in. We negotiated a little bit and then I verbally accepted. My new boss had convinced the owners of this small but fast growing company of the merits of hiring me for this newly created position, and he seemed very pleased to have brought me on board. Based on a skill I had honed as a teenager when asking Dad for the car keys, or breaking the bad news to Mom that I got another B in high school, I identified this as the opportune time to talk to my new boss about MS, you know, 30 seconds after solidifying our new arrangement.

"There is one thing I want to make you aware of," I said over the phone. "I've been recently diagnosed with MS, and it somewhat affects my ability to walk long distances. I have to stop and take breaks before I continue sometimes."

"Oh, no problem." Ted was a very up-beat and can-do sort of guy. I’d caught him on an emotional high, and at least on the outside he absorbed this information with polite indifference. Only Ted knows if there was another voice in his head saying, “Yup, I should have known this hire was too good to be true. Damn.” I doubt it though.

Ted continued, "I don't see why you can't just stop and take a rest whenever you need to at these plants and job sites that we’ll be visiting. When can you start?"

Thus ended my several months of unemployment. I would work at this company and its subsequent incarnations until I left the workforce for good in 2009. What an incredibly understanding employer they turned out to be. Every reasonable accommodation I requested was granted (I didn’t request any unreasonable accommodations. Should I have?). But more importantly they treated me like a normal person. They let me tell them what I was physically capable of doing and not capable of doing. They didn’t make assumptions about my abilities based on my diagnosis. They were, and still are, a wonderful group of people, and I miss them.

With MS, it's often not only the symptoms that get you; it's the uncertainty. For those of us with a progressive form of the disease the uncertainty isn’t about how you’ll feel tomorrow, or in what way the disease may attack your body next week, as is the case with the relapsing/remitting form of MS. Nothing happens suddenly with PPMS. I am highly confident that tomorrow I will feel very much as I do today. That is the good news. However, I also know that today I will be noticeably worse off than I was six months ago, and this deterioration will be both permanent and irreversible. That’s the bad news.

With PPMS the uncertainty lies in what tasks you can still complete, and which ones you can’t. This is acutely evident during seasonal activities. "Hmm, I didn't have this much trouble raking the leaves last year." Or, "I guess I can’t shovel the snow anymore.” Was I really and truly upset when I determined that I could no longer operate a push lawnmower? I’ll let you guess the answer to that one.

I was wedged in this nether land between being healthy and being disabled and my plight was invisible to the uninformed observer. I actually began to wonder if being in a wheelchair would be a preferable situation. My condition did not warrant a wheelchair yet (that was still years away) but the concept held a certain appeal. First, it was a more stable, less unpredictable condition. When you are in a wheelchair you don't have to wonder so often what it is that you are capable of. There is a clear group of activities that you can do and a group of activities that you can't do. Second, when you’re in a wheelchair you don’t have to describe your level of disability to other people. They can see it the minute they meet you. “Oh, he's in a wheelchair. OK, then I won’t ask him to join me for a jog after work.”

It’s not that I really wanted to be in a wheelchair.  The salient point here is that I was frustrated enough with my situation that I was having these types of internal debates at all.

Here are a few notes, taken verbatim from my journal in the fall of 2003.
Went hunting for the last three days at camp with Andy. My hunting ability is significantly diminished from last year. My left leg is too weak to lift over obstacles. My balance, from weakness, is so poor that I have to hold on to tree branches on almost every step. I’m OK for a few minutes, but as soon as I get tired then it becomes difficult. I almost fall frequently. I fall occasionally. Essentially, I can no longer hunt in the woods. I am relegated to fields and roads/paths. I can still get in a tree stand with a good ladder.
    Shot a doe deer today with Dean and his father.

    Preston helped me cut up the deer. It was a lot of work. 

    Took my last dose of Methotrexate. There is no evidence that it is helping, and there are some small risks
    associated with taking it.

    They caught Saddam Hussein today.

And so ended my second full year with MS. I wasn't doing great, but I was doing better than Saddam Hussein.

Tuesday, September 22, 2009

You Can Do Anything You Want, or You Can Be Anything You Want, If You Just Set Your Mind to It

A greater line of bullshit has never been uttered. Who are the people saying this?

1. Successful athletes while hoisting their championship trophy.
2. Successful businesspeople giving a speech to all of their admirers.
3. Successful entertainers accepting an Academy/Emmy/Grammy Award.
4. Parents who are trying to provide inspiration to their small children (I suppose this is no worse than telling them there is a Santa, so I’ll cut the parents of the world some slack).

Just because the following statement often true:

     In order to be successful you must work hard, and you must want it bad.

doesn't mean that this statement must also be true:

     If you work hard, and want something bad enough, you will be successful.

Why? Because we are only in control of a small fraction of what goes on around us. There's an element of randomness and luck to the universe. We really have no better option than to set goals and work hard to achieve them, so I’m not advocating hopelessness or pessimism. But let's not delude ourselves into thinking that if you do everything right then the only possible outcome is success, or even that the most likely outcome is success.

My dream is that one day a wise and successful athlete, businessperson, or entertainer will deliver the following acceptance speech:

     "I was capable of doing what I needed to do in order to succeed… (pause for effect and survey the audience from left to right)

     I was committed to doing what I needed to do in order to succeed(another pause)

     I persevered through adversity…(point right index finger to the heavens)

     and it turned out well for me, didn’t it?...(big smile).

     If you have a certain skill set, the internal drive to achieve, and whole lot of good fortune then you may also become as successful as I am, but you probably won’t. Thank you …" (exit quickly stage right)

This speech may not strike you as inspirational, but it is truthful. I am more inspired these days by truth than I am by bullshit, and the older I get the better I become at recognizing the difference between the two.

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Friday, September 18, 2009

My MS Story Chapter 9 – What if I’m trying to get back on the horse that bucked me, but I can’t get my feet in the stirrups?

Castle Stalker - 03
Image by leguan001 via Flickr
During the opening scene of the movie Into the Wild, Christopher McCandless informs his parents, upon graduating from Emory University, “I think careers are a 20th century invention and I don't want one.” In the summer of 2003 this movie had not yet been made, but that’s exactly how I was beginning to regard this Holy Grail of success- this modern construct we call a career. Who needs one?

Sure, my career had provided me with a lot of useful things. I had a house and a car and all the requisite toys. I had the beginnings of a retirement nest egg, and excellent benefits while I was employed. My career had filled me with a sense of accomplishment, worth, and purpose. Work responsibilities had taken me all over the country and allowed me to meet lots of fascinating people (and a few absolute bores). Travel is something I very much enjoyed, and still do today when I can justify the expense.  My career certainly made me feel engaged, if not fulfilled.

So I began to toy with the idea of obtaining income in a less traditional way. I had an entrepreneurial spirit in me, and I certainly relished a work lifestyle where, although I definitely could and quite likely would fail, I’d never be fired.  The only factors determining my fate, other than luck, would be skill, hard work, and the free market’s acceptance or rejection of what I had to offer, but not a board of directors. I began to think that starting up my own business would be a much more rewarding experience, even if the hours were longer and the pressures were higher. And let’s face it; it’s very difficult to ever become financially independent (pronounced rich) while accepting a paycheck from someone else.

So I kept my eyes open for any local businesses that were for sale. I wracked my brain for new enterprise ideas. I extensively researched all of the available franchising options, but I never really got close to pulling the trigger on any of these. No businesses that were for sale and no franchise opportunities stood out to me.  I was disappointed in my inability to cultivate the next Microsoft or Subway Sandwich idea in my head.  Nothing.      

In parallel with this new business exploration, I also pursued traditional employment avenues. But even in the best of times the great State of Maine does not offer a Chemical Engineer/MBA a wealth of opportunities outside of the paper industry, and I was not going back to the paper industry. Since I was unwilling to relocate to where the jobs were then I had to be patient, and I was, for a time.

One evening my wife and I were having dinner with our good friends Mark and Carrie, in a quaint little restaurant carved out of the first floor of a massive, abandoned, turn-of-the-century textile mill. It was preserved by one of those urban renewal projects that keep these historic edifices from being demolished and replaced with an Applebee’s or TGI Friday’s. Of course, in the early 1900’s when men, women, and even children were laboring long hours there in a sweatshop environment, the place never looked this good, and the workers definitely never ate this well. So this very spot, where so many employees had come and gone over the years, was an appropriate backdrop for the dinner conversation that followed.

Mark, who is a Vice President for a high-tech manufacturing company, asked, “How is the job search going?”

I explained, "The fact that I have MS is definitely complicating things.”

“Really? I don’t understand why it should.”

This caught me a little off guard. Mark is a smart guy. I said, “I'm afraid that if I reveal my condition too early in the interview process they are going to find some excuse not to hire me. Yet I feel this obligation to let them know. I don’t want anyone to regret hiring me."

Mark replied, “You are over-thinking this. If someone revealed that fact to me in an interview I would be more likely to hire that person, not less."

Ah, if there were only more executives and friends like Mark, this would be a better world. But in the end he was right, as he usually is, at least regarding the opportunity I eventually pursued.
Over the months that my quest for income dragged on I experienced slow and steady progression of the disease. I began to wonder how I would have functioned in my previous job as a project manager even if I hadn't been laid off. As the months went by without any promising opportunities developing, I began to ask myself if this was the end of the line for my working days. I knew the statistics on MS and employment. Less than half the people diagnosed with MS are fully employed. I had purchased a COBRA long-term disability policy when I was laid off. I began reading the policy. But my heart really wasn't in that approach. I still felt that I had gas left in the tank. Disability just didn’t feel right, yet.

Finally, an exciting employment opportunity came along with a local environmental engineering firm. I interviewed, and it seemed like a great match except for one thing. This job required no less walking than my previous job had required. Yet, in every other way this was the best employment prospect to come along since I'd been laid off. I was tiring of sitting home and looking for jobs, and I was starting to worry about my family’s financial situation. It was time to get back in the game. I had looked around, and hadn’t found any better way to make a living.

So my dilemma was that I had a company that would hire me into a position that was appealing to me, at a salary that was similar to what I had been making in the past. But what was my obligation to them during the hiring process? Should I tell them about my MS up front?  Should I simply describe my physical limitations, but not overtly discuss the diagnosis? Should I do this in the first interview, the second interview, after receiving the job offer, my first day on the job…or never?

What if I took this job, only to find out that I simply could not meet the basic requirements?  Of course, there was really only one way to know for sure. 
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Sunday, September 13, 2009

My MS Story Chapter 8 – Unemployment

Free 3D Business Men Marching ConceptImage by lumaxart via Flickr
During the summer of 2003 I had plenty of spare time to think about how things had become so completely screwed up. I had sensed that a layoff was imminent for weeks, and had privately put my odds of survival at 50/50. But when I was handed the envelope with my modest severance package (the bad news was actually printed on white paper, not pink) it nevertheless felt like I had been punched in the gut, sucker punched. I thought I had prepared myself for this possibility, but I hadn’t. There was really no way I could have.

As my situation slowly came into focus over those first few days, I wondered to myself, “Was I really a poor worker; was I simply a victim of circumstances beyond my control; or can I blame it all on MS?”

In my completely unbiased opinion, job performance was not the issue. Heck, I was given a special bonus and was publicly recognized for my contributions only a few months earlier, and I’m quite sure that I made no major missteps after that time. So if it was not performance based, then that left the other two options. It was either circumstances out of my control, or it was the MS.

“OK, I’d like to make a guess now. MS, uh, I mean Miss Scarlet did it…in the library…with a candlestick. Do I win?”

So was there anything to this MS angle? When any company becomes aware of an employee’s MS diagnosis, there are at least three ways that they can proceed:

Option 1: Look for the first opportunity to get rid of this person, without getting sued, because even though he may still be productive today, he is only going to ask for more and more special accommodations over time; he will increase the company’s medical premiums; and his work output is bound to decrease as the disease progresses. Let some other company, maybe a bigger company, shoulder this burden. Or if it becomes bad enough, that’s what Social Security is for. This is a business, with fiduciary responsibilities to its stockholders, not a charity.

When a company follows this course of action there certainly is no written evidence to support the strategy, and there would be few if any explicit conversations along these lines. In cases like this the true motivation is disguised by some plausible explanation that is not, well, illegal.

Option 2: Go the extra mile to keep this person on the payroll, because of genuine compassion or in order to create the perception of compassion (different motivations, same result). After all, it would be heartless to put a person like this out on the streets.

Option 3: Treat the MS employee just like any other employee. Disregard the fact that he has MS, other than providing what is required to meet the Americans with Disabilities Act, and any other applicable laws. If he performs, keep him. If he can’t perform even with reasonable accommodations, then he’ll have to eventually go.

When you have idle hands like I did during the period of my unemployment, your mind begins to wander, and you imagine conspiracy theories and/or worst-case scenarios, Option 1 scenarios. On bad days I recalled my last 18 months on the job something like this (but only to myself):

“I was completely honest with this company. I told them when I was diagnosed, and I shared with them each time my progression limited certain activities. I became creative in order to maintain my productivity. Only three months removed from a performance award, and only two weeks removed from a field assignment that I had difficulty with due to the walking requirements, how was I treated? They took advantage of the opportunity to get me out the door by including me in a broad layoff. The bastards!”

On better days I considered my termination more like an Option 3 situation:

“The only value I could add to this company was as a manager of large projects, but there were no more large projects left to manage. They spent a couple of months trying to find other work for me, so that I’d be available when and if the large projects returned, but nothing materialized. Simple economics demanded that they let me go. The best solution for all parties was for me to secure employment elsewhere- someplace where my skills were in demand. Assuming anything other than sincere motives by the decision makers in my former company is playing the disability card, and is a copout.”

I understand that the design of most modern corporations puts executives and managers in difficult positions, where they are required to make unpopular short term decisions that may or may not be in the company's best long term interest.  In recent years I’ve found myself in the same position as my former bosses more than once, due to downsizing pressures (well, not with any of my employees having recently been diagnosed with something like MS). During these times I always thought back to the trying experience I had in 2003. This rendered me a compassionate executioner, but did that make the experience any more palatable for those I laid off? Probably not.

Blaming MS at least partially for my job loss was disconcerting enough, because I suspected that my MS wasn’t going to get any better down the line, only worse. But next I had to consider how to re-enter the workforce when I was unsure of exactly what my capabilities were, how fast my disease would progress, and precisely what my moral and ethical obligations were as I marketed myself to prospective new employers? That was the more thorny issue.

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Tuesday, September 8, 2009

My MS Story Chapter 7 – Turns out there is a lot of walking involved in engineering. Who knew?

(Photo credit: lindejesus)
In the winter of 2003 I was the Project Manager for a big environmental compliance effort at a Tennessee Valley Authority (TVA) coal fired power plant. TVA is a pseudo-government entity born of the New Deal, chartered as much to provide jobs as to provide electricity. So naturally we were a subcontractor of a subcontractor of a general contractor of the client conglomerate, with each entity skimming its little slice of the taxpayers’ money while contributing questionable levels of tangible value to those same taxpayers.  I like to think that my company was the exception, because from our spot at the bottom of the food chain we were actually producing real designs. Given that TVA was such a huge client, the engineering firm that I worked for had set up a satellite office about a mile away from their mega-corporate headquarters in Chattanooga, TN.

We routinely walked from our satellite office to the TVA office for meetings because it just didn’t make sense to drive such a short distance and then struggle to find parking, and because everyone knows that walking is good for you. On one of these walks I was joined by 3 or 4 folks from my company and our client company, and maybe their client company too, I can’t recall. I’m not sure I ever completely understood who worked for whom and did what in that wonderfully matrixed organization. I liked all of the people I worked with; it was just the organization of the whole thing that bothered me. As we neared the end of the walk I began to struggle to put one foot in front of the other and had to stop and rest for a few minutes on the bench just outside the door to the TVA office building. This was odd behavior for an apparently healthy 39 year old manly man (well exactly how manly is questionable, but definitely not a girly man).

At that point in time I was not making a conscious effort to keep my MS a secret, but neither was I shouting about it from the rooftops. I much preferred to reveal my diagnosis to my coworkers and other associates on my own terms. When I made a planned, choreographed disclosure there was always sufficient time for me to thoroughly address any questions that might come up. On those occasions when my symptoms revealed themselves suddenly like they did that day, rather than fashion a lie or some lame excuse I’d usually disclose on the spot. This was not as satisfying to me because revealing my condition while in a state of even temporary physical compromise elicited sentiment that smelled more like pity than concern. In this particular case there wasn’t a lot of time to field questions because we were running late.

     “What’s the matter?”

     “Well, I’ve got a little problem that I might as well tell you about. I’ve told some people in the Maine office. It’s no secret.”

     “Oh, this sounds serious.”

     “Well, I don't know if it's serious or not, but I've been diagnosed with multiple sclerosis. It's not affecting me too much right now, and with any luck it will never affect me very much, but when I walk, oh about as far as we just walked, I have to stop and take a break."

     “How does that work, if you don't mind me asking? Do you get winded, or do your muscles get tired, or what?

     “My muscles get tired, but the problem isn't in my muscles. The signal from my brain to my muscles is messed up. It's a problem in my central nervous system that affects the performance of my muscles.”

     “Are there any drugs you can take for it?”

     “Yes, I’m in a treatment program right now. I can tell you all about it at lunch. You guys ready? We’re going to be late for the meeting."

     “Wow.  I feel bad for you.  Let me know if there is anything I can do.”


I doubt that I freaked any of them out that day in front of the TVA building because I really played down the seriousness of the diagnosis (and I still do sometimes). However, I wonder if their minds did wander a bit during the subsequent long, boring meeting.  What if they had somebody in their lives, or even an acquaintance, who was already struggling with the advanced stages of MS? If so, they may have seen through my “it’s no big deal” smokescreen.

A couple of months earlier my boss, who I had revealed my diagnosis to almost a year before, pulled me aside and asked me how I was doing with the MS. I told him that I was still progressing and that I wouldn't be able to walk around plants and job sites in an unlimited fashion. We both agreed that I should be able to compensate for this issue in other ways, and that it wouldn't be a problem.

My big TVA project was starting to wind down in the spring of 2003, and by all accounts I had done an excellent job as project manager.  The TVA executive in charge of the project made sure that my company was aware of this.  The client's satisfaction was conveyed to me during one of our quarterly meetings at our corporate headquarters in Maine where the senior management team would talk about company performance for the previous quarter and review the goals for the coming quarter. They sometimes took a few minutes for employee recognition. At the January, 2003 quarterly meeting I was recognized in front of the entire company for my outstanding leadership on this project, and was given a special cash bonus. I had worked hard, and I was pleased that this effort had contributed to a successful result for me, my company, and the various clients.

Unfortunately, the project was wrapping up and, even worse, the pipeline for new projects was going dry.  I had one distinct disadvantage as a project manager in this company. I was a chemical engineer who was managing projects that didn't require any chemical engineering. I called upon my general engineering skills and my project management skills to lead a team of mechanical, electrical, and civil engineers. Other project managers typically had a degree in one of those three disciplines, so that when big projects became scarce they could step back and do design engineering work in their discipline. This really wasn't an option for me. Sure, there was some chemical engineering design work being done in the company, but it required that you walk around Pulp and Paper Mills all day long. I took one such assignment before I realized that it simply wasn’t an option for me, for obvious reasons.

So there I was- a project manager without a project; a chemical engineer without legs to get around a chemical plant; and a 39 year old who, for the first time in his life, was worried about his career, and with good reason.
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Friday, September 4, 2009

How to Select the Ideal Life Partner

My wife stood out among the rest of the high school freshman because of her nice ass and playful personality. Those were the criteria I had for selecting the person who would eventually become my life partner. Brilliant.

She was 15 and I was 16. I know what you are thinking, but no, the Frankie Valli song goes, “she was fifth grade, I was sixth”. Our story is cute…but not that cute. Anyway, Kim almost immediately decided we would be married. It was years before I realized that this decision had already been made for me, that it was the right decision, and that I really had no say in the matter (although she may have created that illusion in order to humor me).  This was to become a lifelong theme in our marriage. She almost immediately knows what should happen next, and she waits patiently or gently nudges me, until I finally come to see the light. When she’s in a particularly generous mood, she allows me to think that it was actually my idea in the first place.  There was that snowmobile I bought her (me) for Valentine’s Day one year.  That was all me. 

So if you read my initial post in this blog you know that I listed Kim’s caregiving as one of the factors I have working in my favor- one of the reasons I lead such a contented life as a disabled person. Actually, I think that it's a little misleading to list Kim as just another tool in my disability toolbox. There is no person, organization, or medical device in this world that is more responsible for my happiness and well-being than my wife- not by a long shot. 

school 2003 09We married after I graduated from college, even though Kim had one more year of school to go. We lived in Ohio and Vermont but returned to Maine to start our family. We worked hard and did our best to raise our children well, but I won’t deny that we took some time to have fun along the way. As our children became more independent and our careers successful we were setting the  table for a wonderful empty nest stage. Our relationship was strong. We had played by the rules (for the most part) and we were poised to reap our reward. It was likely we’d travel. Maybe we would buy a second home on a lake or near the ocean, or maybe we'd buy that big fancy camper that requires an oversized pickup truck to haul. We're still suckers for sitting by a campfire in the evening.
These are the things I wanted for my wife. She deserves it. But life is not like a bank account. Just because you make deposits doesn’t guarantee that you will enjoy withdrawals later. There is no FDIC insurance working here.  Life doesn't owe us anything. Life simply happens, and you make adjustments to the best of your ability. I just felt a momentary urge to mention something about lemons and lemonade, but I supressed it because I‘m afraid I’d lose half the readers, and justifiably so.  Close call.   

I find it difficult to believe, but the divorce rate is remarkably high among couples where one partner becomes disabled. For us, I think just the opposite has happened. We've grown closer by facing our challenges together. Although our lifestyle is not (and will never be) what we once imagined, we are making the best of it. And I'm not convinced that we're any less happy than we would have been with the travel, or the second home, or the big camper. Who knows, maybe we will travel a bit.

There must be books written on the challenges faced when a spouse takes on the added role of caregiver. Without having read any of them, I am certain that there is a consistent theme in each book about how the disease can be as trying for the healthy spouse as for the sick spouse.  I believe this. I’m not just playing the martyr when I say that I'm glad it happened to me instead of to Kim. I’m actually being a bit selfish about the whole thing.  When you're standing on the outside and watching your sick spouse it must be difficult to know the right thing to do or the right thing to say. You can't tell if your spouse is about to fall and needs you to provide a cushion or if he/she will be annoyed because you interrupted what was going to be a successful maneuver. When you're on the outside you can't tell if your spouse is in serious discomfort or is just grimacing because he's got, well, killer gas. I suppose Kim can’t know for sure if the disease is actually making me despondent and I’m only faking contentment, or if I’m really doing OK on the inside. Kim, I’m really doing OK.

I feel very fortunate that I have a life partner, best friend, and now primary caregiver as wonderful as Kim. However, I deserve no credit for this decision made so many years ago. I didn't choose her because I thought she would make a great life partner. I already told you why I chose her. I just got lucky, very lucky. Kim has a contagious passion for living, and is a wonderful mom. She is thoughtful and caring, sexy and fun-loving, intelligent and dedicated, optimistic and industrious, loving and patient. She could've done so much better than me, but I'm glad she didn't.

It’s just another example of the charmed life I lead that to this day, in addition to everything else, she still has a nice ass and a playful personality.

I love you Kim.  I sleep well knowing that no matter what challenges await us, the ones that are on our radar as well as the ones we don’t even know about yet, we’ll be facing them together.  And even more importantly, the joys that we’ll experience in the coming years…we’ll be celebrating them together.   
Fenway 03
Maybe we’ll celebrate another World Series win this year? Uh, well, ya, maybe.

Tuesday, September 1, 2009

My MS Story Chapter 6 – The Things I Learned One Night in Nashville

Nashville, Tennessee
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In the winter of 2003 I was hanging out in downtown Nashville one cold, quiet Tuesday night with a client. If you haven’t been to Nashville in February, you need to know that it is more like Maine than Miami at that time of the year. I learned a couple of lessons that night- one about my MS and one about the Nashville music scene.

Jeff, the client, and I were walking along 2nd Avenue looking for a restaurant, no restaurant in particular, just a decent one, when I was introduced to a new MS symptom. Without any warning my legs suddenly became as stiff as boards. I had read about leg spasticity with MS, but had not had the pleasure of experiencing it yet. In our extremities we all have opposing pairs of muscles, flexors and extensors, which usually operate in a coordinated fashion. When spasticity occurs both muscle groups fire simultaneously, and the involved extremity becomes rigid. For me, this condition passes in five or ten seconds, and can be triggered by any number of factors, such as cold air. I often experience spasticity at the most inconvenient times, like when I’m trying to squeeze into the seat of a car, or when I need to get my feet into my wheelchair foot holders so that I can start going wherever I’m supposed to be going. Imagine trying to force a life sized Mitch cardboard cutout into a wheelchair, without breaking it. There are varying degrees of spasticity. That evening in Nashville I experienced mild spasticity. Even now I only suffer moderate spasticity symptoms in my legs.

However, many people with MS or other neurological diseases and injuries have severe spasticity that is both painful and debilitating. There are drugs you can take to loosen up the spastic muscles. They help your spasticity problem, but at the price of making the rest of your muscles, even the well behaved ones, weaker. These drugs can also leave you drowsy and listless at times. I tried oral Baclofen a few years ago, but didn’t stay on it for very long. I’ll take my moderate spasticity thank you.

My mother, who was a quadriplegic due to an accident when she was 35 years old, had severe spasticity. Although she had no conscious control of the muscles below her trunk, her legs would routinely decide on their own that all muscles, flexors and extensors, are going to fire, and they are going to fire right now, and they are going to fire for a long time. Leg spasticity became very problematic for her in her later years. In fact, by the time she passed away at the age of 74 (ripe old age for a quadriplegic) she had lived for a year with a pump surgically implanted in her abdomen, supplying her spinal cord with Baclofen- straight up, no chaser.

Back in Nashville…after dinner Jeff and I set out by foot in search of some exciting Nashville nightlife. Just as the cold air began to threaten me with another spasticity event, we happened upon a dive bar, and we dove right in. After bellying up we noticed a couple of features that you just don’t see in, well, nice bars. First, the surface of the bar top was made of plywood, and wasn’t exactly finished or even sanded I think. Second, there was a display of cowboy boots on the wall behind the bar, at about the same height where top shelf liquors are stored in finer establishments. What makes Nashville think it can pull off the whole Cowboy thing anyway? This was not Dallas or Cheyenne. Nashville, are you a somewhat northern Southern City or are you a considerably eastern Western City? Is it “how y’all doing today” or is it “howdy pardner”? Come on Nashville; make up your mind already.

We ordered two Budweisers, in a weak attempt to just blend in. While surveying the bar for more little treasures, I observed that a small band had set up in the corner closest to the entrance, but there were no musicians in sight. I looked at my watch and noticed that it was only seven o'clock, so we didn't “reckon” that we would get to see the band.

A few minutes later, when we were maybe half done with that quick beer, and were almost warm enough to venture back out in the city to resume our search for some real Nashville nightlife, four men in Western duds materialized from nowhere. They mounted their instruments as smoothly as a cowboy mounts his trusty old steed. Giddyup. The quartet surveyed the huge crowd of maybe seven patrons and one bartender, and started playing. Wow, what a treat! In most cities we would not have had front row seats for this quality of music without paying a cover charge or maybe even purchasing tickets. I'm not a country music fan, but I always appreciate good, live music of any genre. And these people were exceptional. I remember being mesmerized by the electric fiddler as he played the obligatory “Devil Went Down to Georgia” riffs. We stayed and had a couple more beers.

There couldn't have been a lower budget venue than this bar in the whole city. But because it was Nashville these four outstanding musicians were willing to play for two businessmen and five locals, on the off chance that somebody important in the music industry might just drop by and discover them. So right then and there I concluded that there is no bad music in Nashville. This is a statement I still make with authority today whenever the subject of Nashville comes up in conversation.

“My company’s corporate headquarters is in Nashville.”
“You know, there is no bad music in Nashville.”

“My great aunt Eunice lives in Nashville.”
“Are you aware that there is no bad music in Nashville?”

“I adopted this stray dog that was picked up on the streets of Nashville, and flown all the way to Maine by a charity. His fur is so soft, and white, and fluffy. I think I'll name him Snowball. Go ahead, pat him.”
“Sure, whatever… did you know that there is no bad music in Nashville?”

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