Category Archives: MS

Childhood imagination, Family, family life, funny kid's story, hiding symptoms, innovation, life with MS, memory, MS, MS cognitive function, MS progression, MS symptoms

I Got Your Crazy Right Here!

If you want crazy, I can do crazy!
If you want crazy, I can do crazy!

At camp this week, O celebrated “Crazy Hair Day.” When it comes to crazy, it’s a house specialty, and we wouldn’t have it any other way.

It was an excuse to take advantage of O’s naturally flamboyant, impulsive nature.  It some ways, it was like asking a cat to sit in the sun.  With O, his impulsive side frequently gets him into trouble,but days like today are our rewards for dealing with the negative consequences of impulsive behavior.  We all get to smile and appreciate the joyful abandon with which he can throw himself into a project.  It is one of his traits I think we need to cultivate as much as possible because it will let him do things as an adult nobody else even considers.  Free thinkers move society in ways those of us stuck in our mindsets will never anticipate and frequently only appreciate in hindsight.

As for me, my crazy was a bit different this week.  I went to a block party to say goodbye for some of our neighbors with whom we have been friends for years.  The crazy part was my inability to remember anyone’s name outside of my family.  Now I have spent minutes remembering my wife’s name, but I have never drawn so complete a blank on so many names with whom we have hung out for years.  I couldn’t even remember their kids names as they played with A, O, and K in the cul-de-sac.  I guess I am lucky I have so much practice dealing with people who know me whose name I do not know.  Years of being an R.A. in college came in handy once more.  Of course, years as the dad of A, O, and K have the same effect.  Their behaviors and stories are frequently a topic of discussion with other parents and bystanders who know us or of us.

Still, I hope this recent memory lapse is the result of stress and pain rather than another flare.  The experience was rather disconcerting, but I do not think anyone else noticed.  I have been lucky for most of the past five years in terms of MS progression.  Reluctantly, I am scheduling a titer count, a test to see the risks for continuing to use Tysabri. I have put it off long enough.  I know the test will say nothing of whether I am having a flare, but it will give me a better sense of the risks I face continuing to use Tysabri.

All in all, it is just another “crazy” week, but it is one with a lasting image to make us smile.

Here’s to the exuberance of youth!  May we all hold it for as long as we can.

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appreciate the good life, good life, happy life, introspection, isolation, life with MS, MS, MS travel, stress and MS, Uncategorized

A Screwdriver in a World of Nails

Cloudy or not, life's views are often still beautiful.
Cloudy or not, life’s views are often still beautiful.

There is a saying, “If your only tool is a hammer, every problem looks like a nail.”  That’s a fine saying. For even a screw can pass for a nail, if one is willing and able to put in the extra effort to pound away. But what if one’s only tool is a screw driver?

As I look back on the week, I see many things which turned out well, but seemed so much harder than they should have been.  I find myself more and more having to throw effort and elbow grease at problems until they yield.  The thing is, I am not using a hammer to pound away at screws.  I’m using the handle of a screw driver as if it is a mallet, all the while ignoring the cracks and dents each nail imparts upon the handle.

Have you ever felt like you could solve problems only to find more and more problems for which you are not ideally prepared?  That has been my feeling all week long from having the wrong screws to rebuild a broken swing set to securing a computer at Miami airport only to find it could not load Adobe Connect.  I was able to solve both problems, but each took more time and effort while making me feel foolish for not anticipating the problem until it needed solving immediately.

This whole week has been exhausting and rewarding.  My work published our fourth publication of this cycle.  I went to St. Thomas and met with the Governor, and on the way back, I stopped in Miami airport to use the Ambassador’s club to participate in a webinar for the American Board of Internal Medicine.  To top it all off, I came home to family happy to see me.

I’m tired, but I still feel relevant, less isolated and more importantly, appreciated.  For a guy with a fairly aggressive MS, it reminds me how I should define my luck to appreciate what I still have. It has been a good week to remind me to use other tools as needed, and not to panic if the first tool grabbed does not work.

Not every problem is a screw.

I love talking with data driven politicians. This week, I was lucky enough to spend time with John de Jongh, Jr., the governor of the U.S. Virgin Islands.
I love talking with data driven politicians. This week, I was lucky enough to spend time with John de Jongh, Jr., the governor of the U.S. Virgin Islands.
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