Sunday, March 30, 2014


Multiples.  There will be more than one you know, as time goes by.


I think what matters most is what I think about who I am at any given point in time.  Am I a person living with MS?  Am I a person living with..... arthritis ..... or ABC disease, or just some odd malady the doctors cannot figure out?

What really matters?

To you.

And me.

Well let's explore this question together for a few minutes.

Do you like baseball?  I do.  I spend entirely too much time on the couch watching my favorite team and commiserating with the community at large about their future.  It becomes obsessive if they happen to be having a good season.  Everyone wants to be a winner.  Even if it is vicariously experienced.

I have children.  A lot of people have them.  Some people are without and I have mixed feelings about that.  Like, people without kids seem to have money to buy whatever they want.  Even though my kids are all grown, I'm still "recovering" from years of making sure we had toilet paper in the house and keeping the refrigerator full.  I no longer need to grace the doors of the local big box store, but nonetheless, years have been spent there.  Years.  And a lot of money.

So now, as I rapidly approach my 60th birthday I think about multiple diagnoses as part of the landscape and I am tempted to say, "I told you so."  Eventually everyone has at least one and chances are there will be multiple diagnoses that will need to be contended with.  Each one will demand its share of my attention.  What is really at stake here?

The challenge is to find the center of everything.  The goal is to be balanced, grateful and at peace.  Really.  It is no secret that I will rise to a pinnacle of life at its prime and then begin a (hopefully) gradual drift into my "golden years."  I would like to arrive with a smile on my face, or at least a grin of satisfaction that I am enough.  I have done enough.  I am whole and mostly ok where it really matters most.

If I have eyes to see it, my will path converge upon a green, verdant forest, that echoes the timelessness of life.

What really matters?

Friday, March 28, 2014


I have been a runner in my lifetime.  Some days I still feel like one, but most of the time I am happy to have the memorable experience of sustained motion.  In 1999 a friend talked me into doing a "fun run" with her.  She had just had her third child and wanted to get back in shape.  She had been very involved in track during her college days and was really quite good, and fast.

I said yes, and over the next five years I ran in several events including four marathons and three triathlons.  In 2004 I had a training accident which inadvertently led to an MRI revealing evidence of demyelinating disease.  My next marathon had begun.  It took another six years of head scratching before the diagnosis came.  Oddly welcome.  Nice to know the reason why, right?

Some questions though, do not have answers that feel satisfactory.  And then there is the whole thing about not knowing what the future holds.  All there really is to plant my feet on is what is in front of me right now.  I am more than ok with that.  Distance running is kind of the same.  Being in the moment, being with myself is a big part of what I would try to do during a long run.  

Now the distances involve navigating the space between my CNS and my body, the emotions that surface with the myriad neurological sensations and the time it takes me to employ good old-fashioned self care.  Running shoes are optional.