A Firm Handshake

To say that I am a fan of the firm handshake doesn’t begin to do it justice. I don’t only enjoy or prefer a firm handshake. To me, it is essential. A wimpy handshake leaves me wholly unsatisfied with the interaction. Why bother to shake my hand if you can’t put a little effort into it? If you don’t care about delivering a firm handshake, then what else don’t you care about? Truth? Justice? The American way?

It doesn’t have to be overpowering – in fact that’s an entirely different problem. But it can’t be mushy or weak. And I don’t forgive a limp handshake from a woman any more than I do from a man.

Recently, my high regard for the firm handshake has become a problem, because I can no longer deliver one. I can’t uncurl my fingers far enough – I can’t make my hand sufficiently flat – to couple with your hand in the proper way. I often give you only a few of my fingers and no hand at all. If I do manage to seat my hand into yours, which I still accomplish once in a while, then you will find my grip to be underwhelming – generally mushy and soft.

I know you don’t blame me. Obviously, when someone is sitting in a wheelchair they are forgiven if they’re unable to perform certain tasks. What bothers me is that I enjoy the brief connection a handshake provides, and I miss that. It demonstrates friendliness and good manners. It clearly marks the opening or closing of an interaction. So many times, especially in my professional career, a degree of animosity and distrust developed over time with relationships that consisted of phone calls and emails only. But once we were together, once we shook hands, the distrust often dissolved and positive relations ensued.

Of course, the other reason that my recent inability to perform a proper handshake bothers me is because it marks continued disease progression. My right hand is my last decent appendage, and it is continuing to weaken.

So, if I cannot complete a handshake, what can I do instead? I am able to perform a fist bump. But they are a bit juvenile and informal, so they don’t suit every social situation. Additionally, I expect that fist bumps are merely a fad and will lose popularity like the high five, for example.

Hugs work too, but they are too intimate for every relationship or every situation. If you do come in for the hug, please approach from my left side. If you approach from the right side you may hit my joystick and send me flying. Yes, that has happened.

And of course, if you don’t mind a mushy, three finger handshake, then I’m still good for that too. The bottom line is that if we’re in a group and there are greetings going around, don’t avoid me because you’re not sure exactly how to proceed. Come on over and we’ll figure out something together.

Working It Out

People with MS find it particularly challenging to remain productive, and employed, in the workforce. The video below, called "Working it Out," was produced by a UK based group called Shift.ms. It's well done, plus, as a bonus, everyone in the video has an awesome British accent. See below (or click here).

Treatment Holiday or Something Else?

The photo at the right was taken on Sunday. Kim and I are on the cliff walk near Portland Headlight, about a five minute drive from our house.

Relapsing remitting MS patients usually take one of the FDA approved disease modifying treatments. But these treatments come with varying degrees of side effects and risks. As such, patients sometimes like to enjoy short periods when they don't take any disease modifying drugs at all. This is called a treatment holiday. It’s a little gift that they give to themselves for a few weeks or even months. But MS is a persistent disease, so it’s best to not leave it untreated for very long.

There are no FDA approved treatments for primary progressive multiple sclerosis, but that doesn’t mean I don’t try stuff anyway. Most recently I used intrathecal methotrexate for two years, but my last infusion was in February. Since that time I’ve not undergone any MS treatments. I don’t refer to this a treatment holiday, however. Holidays, or vacations, are for relatively short periods of time and have a defined end date. I’ve been without treatment for my MS for six months and counting, and I see no end in sight. I’m more inclined to call this a treatment drought.

This isn’t the only time I’ve been in a drought. My first one lasted a year and a half, back in 2004 and 2005. It happened again for about a year in 2009 and 2010. And there was nothing going on for parts of 2011 and 2012.

The goal with any treatment for PPMS is to slow down or stop the disease progression. I feel that this has only happened twice since my diagnosis in 2001 (I use the word feel because, unfortunately, assessment of disease progression is somewhat subjective for PPMS). The first time was during year one of the two-plus year Rituxan trial/debacle. The second time was during year one of my two-year intrathecal methotrexate treatment. I’m inclined to give credit to each of these drugs for my temporary plateaus, and then scratch my head as to why the treatments stopped working after a year. Of course, the other possibility is that my disease has its own natural ebb and flow, and I would have plateaued during those time periods even if I hadn’t been on those treatments. I don’t think so, but I can’t be sure.

As my friend Joe pointed out recently, there are psychological benefits associated with being on a treatment, even if its effectiveness is unclear. At least we are trying. At least there’s a chance that something amazing could happen. I wouldn’t mind a treatment holiday now and then, but these long periods of time between therapies aren’t good for me, emotionally or physically.

It’s like I am wandering in the desert. I ask myself, “When will it rain again? When will this drought end?”

The End of Summer

When Kim chose to become a teacher, shortly after we married, it seemed like a nice fit for our family plans. I would work the long hours and make the big bucks as a chemical engineer. She, on the other hand, would have a personally rewarding, if grossly underpaid career. Because of the favorable schedule of a teacher, Kim would still have ample time to spend with our future children. She was the nurturing type anyway, not me.

But now, with the children grown and with me in premature retirement due to MS, we look at her profession differently. Because she went on and earned Master’s and post-Master’s degrees, and she works two extra weeks per year due to her guidance counselor responsibilities, and she is employed by the public school district in the most affluent community in Maine, and she has 25 years of teaching under her belt, she is no longer grossly underpaid. Yet, she still has that favorable teacher schedule with every conceivable holiday off, ample vacations during the school year, and the Holy Grail of the teaching profession – summers off.

Quick clarification before I offend any teachers – by no means am I implying that teaching is easy or that teachers don’t deserve their time off. Furthermore, Kim, as well as most teachers I know, spends a lot of time at home working on school items. Still, it’s a sweet schedule.

We so enjoy her seven week summer vacation. It’s not all lying on the beach and sipping margaritas for Kim. She takes on home projects, sometimes well beyond her skill level, and they always turn out well. But in between the projects we do take in the wonders of summer on the southern Maine coast. We go to parks, outdoor concerts, restaurant decks with live music, July 4th fireworks, friends’ camps at the lake… I could go on.

For example, just last night we decided, spur of the moment, to go get a beer and listen to a local band at one of our beloved summer spots – Portland Lobster Company. I was that close to backing out on Kim. I’m so glad I didn’t. The band consists of three men, and they call themselves The Still. But on this night they had a female lead singer who was a friend of the band visiting from the West Coast, and this girl had pipes! Word quickly got around town and the place was packed. Towards the end of the evening an older couple, you know, about our age, sat down beside us. Of course Kim struck up a conversation and found out they were vacationing in Portland from the Washington, DC area. The husband sat an old wooden box on the table. Kim whispered to me, “What do you think is in the box?”

I guessed, “Maybe it’s a humidor. There is a cigar store just across the street.”

He opened the hinged cover in such a way that we couldn’t see the contents, and pulled something out that fit in the palm of his hand. His wife said, “Go ahead. Ask the band if you can play a song with them.”

Then we saw what he had – a harmonica. He opened up his box and showed us a large collection of harmonicas, one for every key, he explained. He seemed reluctant to impose himself on the band, but Kim joined his wife in egging him on. Finally, he approached the band leader at the end of a song and asked if he could play. The band leader agreed and set him up with a microphone. The song was Johnny Cash’s Folsom Prison Blues, one of my favorites. I can personally identify with most of the lyrics.

I hear the train a comin'
It's rolling round the bend
And I ain't seen the sunshine since I don't know when…
I'm stuck in Folsom prison, and time keeps draggin' on
But that train keeps a rollin' on down to San Antone..

Our new friend’s wife, a very conservative looking woman, whispered to us, “He plays a kick ass harmonica.” Damn straight.

At first our new friend performed in a laid-back and cautious manner. But as the song wore on, he gained confidence in himself, and won over the audience and the other band members. At one point the other musicians fell into the background and our friend stepped forward. In all my life I never saw anyone play the harmonica like he did. His hands were flying around in a blur. His cheeks were flapping in and out more quickly than seemed humanly possible. His whole body leaned into it and produced a harmonica solo for the ages.

When I was just a baby my mama told me. Son,
Always be a good boy, don't ever play with guns.
But I shot a man in Reno just to watch him die
When I hear that whistle blowing, I hang my head and cry…

The crowd went crazy with applause during his performance and at the end of the song. He then returned to his seat, carefully placed the harmonica back in the box, and finished his beer with us.

These are the kinds of things you don’t see if you always stay home on Tuesday nights, like we do for most of the year.

The only drawback to Kim’s summer vacation is that it always ends. That’s what we’re facing right now. Tomorrow, she goes back to work. But that’s okay, because somebody’s gotta bring home the bacon in this family. Plus, I still need to watch House of Cards on Netflix, and Kim has no interest in that.

I bet there's rich folks eating in a fancy dining car
They're probably drinkin' coffee and smoking big cigars.
Well I know I had it coming, I know I can't be free
But those people keep a movin'
And that's what tortures me...

Well if they freed me from this prison,
If that railroad train was mine
I bet I'd move it on a little farther down the line
Far from Folsom prison, that's where I want to stay
And I'd let that lonesome whistle blow my blues away.....

Nothing Happens for a Reason

Whenever I hear someone say, “Everything happens for a reason,” I usually blurt out, “Nothing happens for a reason!” Of course, the truth is somewhere in the middle, but I like the shock value of my reply. Granted, the tides do shift because of the relative positions of the earth and the moon. People sometimes do drown because they don’t wear lifejackets. Men in wheelchairs do get all the beautiful women because – I’m not sure why. I’ll have to ask Kim.

The point I’m really trying to make is that not everything happens for a reason. Many things just happen – the good, the bad, the insignificant, and the life-changing. Randomness and unpredictability, like it or not, play a lead role in our lives. This may be unsettling, but that doesn’t make it any less true.

When events work out nicely, which they often do, people are quick to proclaim that everything happens for a reason. But, if that is the case, I ask, “What is the reason for babies starving to death in Africa? What is the reason for women being raped in broad daylight in India? What is the reason for cancer?”

And of course, “What is the reason for multiple sclerosis?”

There is no good reason for any of this.

“Mitch, maybe you got multiple sclerosis so that you could help other people with MS through your blog.”

“If this were true then what was the reason that all these other people got MS? Was it so that I would have people to help?”

Since I don’t believe that everything happens for a reason, then what do I believe? Glad you asked. I believe that no good comes from lamenting our bad fortune. Where there is no master plan, no puppeteer of all things, there is no false expectation of fairness in life. There is no asking the question, “Why me?” There is only, “Why not me?” I find this strangely comforting.

So, the next time you are tempted to utter the statement, “Everything happens for a reason,” please consider how that might be taken by folks with chronic diseases. Think what it says about those around the world who lead tragic lives or those who died horrible, senseless deaths. There can be no divine or karmic justification for our worst suffering.

My argument does not preclude the existence of a supreme being. It only rules out a hyperactive God who is intimately involved in everything that everyone does.

If you are curious about my broader position on faith, you can read this previous post.