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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  1. How I deal with this changes by the minute. Indeed, I have an ongoing 24/7 conversation with myself, with the illness, with the dreams and capabilities I have had to release, with the potential futures; in short, with all of me. And sometimes I will end up in a philosophically serene place. Other times, I don battle gear. Still other times, I will feel wounded and sad. This variability is emblematic of the nature of this illness, with its characteristic changeability. In the old days, I would have told myself to toughen up. But, as I've said in one of my poems, I have had to learn to be compassionate with myself and with others. The human condition is a complex one and we are all, it seems sometimes, more like rookies than masters at figuring it all out.

  2. I'm 1 year post diagnosis and many years post MS. Rebif was working for me, but not nearly well enough so I'm switching to Tysabri. I accept that there is a risk of death associated with this but what's changed is that that's now a very acceptable risk for the potential return.

    I respect you not wanting to "whine" or bum us out with describing some of your future challenges, and your blog is plenty interesting as it is. But selfishly I would much rather learn about these horrible things from reading your blog then have to learn about them the first time through my own experience. It would give me time to do a little processing.

    So whatever you want to share will be appreciated by me. Thanks for continuing to blog. It's really helpful.

  3. Judy,

    You are a poet even when writing prose!


    Good luck with Tysabri.

    I struggle with how much detail to put in my blog posts regarding my various disabilities. When disclosure is germane to the story, I usually don't hold back. However, for reasons of privacy (or modesty), and because I don't want to be perceived as someone who writes from a position of self-pity, I often choose to leave out some of the gory details, even though some readers like you would appreciate hearing more. Thanks for your feedback though, as I'm still trying to figure this all out.


  4. first off, i hope things go well with your sale and move. have you chosen the next location and what is its walkability index?

    i an currently dealing with a significant amount of physical change which is directly changing my daily functioning and schedule. when this happens, i get tough until i am ready to mourn the loss. then i put on my big girl panties and redirect my thoughts to the present, doing my best to forget 'what was' and ignore 'what may be'. this process doesn't take nearly as long as it did before.

    i'm far from perfect with this practice but perhaps that's why it's called a practice.

  5. A few days ago I submitted my MS story to an MS internet site. I wrote it, in part, to inspire others in similar circumstances. In it I even quote you, Mitch. :-)
    Here's the link:

  6. as always, I love your writing.