Wednesday, June 29, 2011

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?
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Tuesday, June 21, 2011

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.

Thursday, June 16, 2011

Reflections on My Father’s Passing

This week we buried my father. He was 80 years old. Just two and half years earlier we had buried my mother.

This post is not a eulogy for my father. He was movingly remembered by several loved ones at the funeral. Instead, I'm going to write about how his passing has affected me, my two brothers, and our immediate families.

Losing my mother in 2008 was devastating. She was by all accounts one of the genuinely Good people in this world. She endured her disability with grace and good humor. My father was forged from an entirely different mold, but was also strong and had a good heart.

Losing my mother was distressing for all of us. But when Mom died, we lost “only” her. We still had one parent. We still had a living repository of our family history. We still had someone to share pictures and stories with as we, and our kids, accomplished anything noteworthy. We still had immediate-family representation from that generation. And not least of all, we still had all their stuff, including the family home of 41 years.

Losing my father marked the end not only of his life, but of an era, and I am finding this to be a burden over and above what I felt when my mother passed.
His death marks the end of our association with the house that we grew up in- the place where so many memories were created over the past 41 years. None of us is inclined to keep the house in the family (we don’t live near our home town), so it will go up for sale.

In the coming weeks we will go through the house and sort out all of the stuff. There's not much of commercial value there, but the sentimental value is beyond measure. The plastic cups that have rested on the kitchen counter since I was six years old should have been tossed 30 years ago, but they weren’t. The end table beside his recliner where he kept his ashtray and “clicker”, until finally quitting smoking 10 years ago, has no place in a modern home (not old enough to be an antique, but too old for continued service). But I don't want to be the one to throw it in the trash heap. We all made fun of our parents’ frugality, a trait left over from their Depression era childhoods, but getting rid of all that old stuff is going to be painful. I'm sure we'll all grab pieces of it to keep as mementos, but 95% of the items in the house will go to charity or to the dump.

The attachments that we make to the stuff in our lives are difficult to understand. After all, these are just inanimate objects. Nevertheless, they come to symbolize the human bonds that are forged in their presence.

My father's passing marks the inevitable extinction of an entire tier of our family. His mother and his two sisters had passed away before him, so now we have nobody left in our immediate family from that generation. Granted, there are still many older friends and cherished relatives who remain, so all connection with our family’s history is not lost. Nevertheless, this is a pain that we did not feel so much with our mother's passing, but that we feel acutely with our father's passing.

EPSON MFP imageYesterday I was reviewing the photos from my son’s high school graduation, which took place two days after Dad’s passing.  I reflexively felt an urge to send these photos to him. Bragging about our accomplishments and just generally keeping him informed of the goings-on in our lives brought mutual delight to both Dad and us. I'm struggling with the idea that this will no longer be possible. Nobody will ever care about these things like Mom and Dad did.

But isn’t this all just part of the human condition? We’re hardly the first children to lose their parents. Since death is an absolute certainty in life, there are only two ways to avoid the pain of seeing your parents pass. One way is to die before them, but this is considered even more tragic for a family. The other way to avoid the pain is to never have loved them in the first place, but what sort of life would that be?

04 02Grief cannot exist without love, but they are not equals. Love is stronger.

Since January of this year my son and I have been working to preserve (scan into my computer) Dad’s collection of 35mm slides taken between 1953 in 1977. This was a huge undertaking, as there were more than 1400 slides in the collection. Because my hands don't work well anymore, my son had to do all the scanning. I organized the digitized photos and did a little Photoshop repairing where I could, and we ended up with over 1200 quality images, some of which are shown here. We completed the project a few weeks ago and targeted a Father's Day presentation to Dad- June 19th.

05 02It turned out that I had a conflict on the 19th, so I decided to give him an early Father's Day present from his three sons. On June 3rd Kim drove me to his house, only a week before his eventual passing on June 10th, and we presented him with the slides. He was touched. If I had waited until Father's Day, he would've never seen the slides – a compilation of photos mostly taken by him, which had collected dust for some 30 years. What a shame that would have been.

Okay, maybe I'll eulogize my dad just a little. The most common description that we heard of him these past few days was that he "had a hard outer shell but a soft heart." That's a nice way of saying that at times he could be a real SOB, but if you were willing to work through that aspect of his personality, the soft inner core, once revealed, was well worth it. I don't blame any of those people who were unable to truly appreciate my father, but they missed out on knowing an extraordinary man.

Tuesday, June 7, 2011

The Parable of the Farmer and His Four Sons

google-farmer-updateOnce 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.

Wednesday, June 1, 2011

CCSVI – Who Benefits Most?

untitled“Be careful of reading health books; you may die of a misprint.” Mark Twain

As most of you know, I've twice undergone treatment for a condition called CCSVI, which is reported to be associated with multiple sclerosis. That's the thing though. Whenever something is reported about multiple sclerosis it almost certainly has nothing to do with me.

“But wait, Mitch, it says right in your blog that you have multiple sclerosis. What gives?”

I have a relatively rare form of multiple sclerosis (10%) called Primary Progressive MS (PPMS, or PP). Almost everyone else is initially diagnosed with the most common form called Relapsing Remitting MS (RRMS, or RR). Most of what you read in the media pertains to RR, and unfortunately, there's never been much to report about PP. Very few trials are underway specific to my type of MS, and every trial ever conducted for PPMS has failed, including the one I participated in. Even though RR has a handful, and now almost two handfuls, of FDA approved disease modifying treatments*, PP has exactly zero approved treatments. In fact, some have argued that PPMS is actually a separate disease from RRMS. I think that those people may be on to something.

Maybe CCSVI treatment will be different. Possibly, hopefully, CCSVI treatment will help not only the RR folks, but the PP folks too. But I'm beginning to doubt it. First, I’ve realized no benefit from the treatment myself. Second, a new study has been published which correlates certain personal attributes with the success rate for CCSVI treatment. The study was small, and we are still early in the CCSVI investigative process (which will take years). The results, however, speak to me so clearly that I thought I would share them with you. Here's a link to the study.

CCSVI treatment works best for:

1. Females – I am a male
2. Relapsing Remitting type of MS – I have the Primary Progressive type
3. Lower baseline EDSS- I have high baseline EDSS**
4. Younger age – I will be 48 this year
5. Short disease duration – I'm approaching the 10th anniversary of my diagnosis

If you are keeping score, that’s zero out of five. I am at the extreme end of the spectrum regarding items 1, 2, and 3. I am simply higher than average on items 4 (compared to people who are 58 or 68 years old for example) and 5 (compared to people who have had MS for 20 or 30 years for example).

Again, it is premature to interpret these tendencies as scientific certainty. Much more research is needed. Based on this first study of its type, however, I have an uneasy feeling that CCSVI will be more of the same. PPMS will not be invited to the party.

I haven't officially declared my second CCSVI treatment to be a failure. It will take six months or so to make a clear assessment. For me that will be in September. But I must tell you, it's not looking promising on the first day of June.

To be clear, I still consider CCSVI to be a major finding, perhaps the most significant discovery ever, regarding MS. To learn more, please visit the CCSVI Alliance webpage.

At the risk of sounding like a pessimist, which I am not, I must caution you that if one day you wake up and see a newspaper headline that reads something like:

"Cause of MS Determined – Cure to be Made Available by End of Year,”

it almost certainly won't apply to me. So resist the urge to send me congratulatory emails, flower arrangements, or bottles of expensive champagne until you read the story and see if PPMS is even mentioned. On second thought, go ahead and send a bottle of bubbly either way.

*The FDA approved disease modifying treatments for RRMS are nothing to write home about. Most of them involve uncomfortable injections or infusions. All come with a host of nasty side effects ranging from flulike symptoms to risk of death (although rare). All are extremely expensive, on the order of $25,000-$50,000 per year. Their success rate at reducing relapses varies greatly from patient to patient, and they show little long-term efficacy regarding disease progression. Nevertheless, I remain jealous.

**EDSS is a quantitative measurement of disability in MS patients. The scale goes from 0 to 10, where 0 is no disability and 10 is death due to MS. My EDSS is approximately 8.3. Fear not; I have no plans to go any higher than 9.9.