Posted by: sistermom1 | May 24, 2011

A very difficult day

Dramatic fatigue, combined with intense leg spasticity has taken its toll on me today.   I am overwhelmed with tiredness.  In the past, this has led me to call my neurologist to get a five-day in-home steroid infusion.  I have decided not to do that yet, but to see how I feel after my monthly Tysabri infusion, scheduled for later today.

During my monthly infusion session today, the universe responded to my needs.   I happened upon a wonderfully encouraging chapter in the Mark Nepo book that I read every day.  He wrote something that allowed me to get outside of myself to consider a bigger question…

“How easily we get caught up in defining who we are in relation to those around us.” 

He shared a story about him walking home from fourth grade and noticing a classmate he was not fond of walking at the same pace on the other side of the street.  They each began walking faster and faster in a silent competition to get home first.  He described how often this happens — that

“We first find ourselves alone in the joy of what we’re doing.  But somehow, there are suddenly others along the way, and we lapse into the breathless race of comparison, and then we are hopelessly running to avoid being termed a failure….  .So underneath all our worries about careers and jobs and retirements, our purpose really comes down to living fully to being alight with who we are beneath all the names and titles we are given or aspire to.” 

Nepo shared a story about the Buddha in his moment of enlightenment — that he was aglow from inside and it could be seen by all.  A passing monk asked the Buddha “O Holy One, what are you?  You must be a God.”  Buddha, not thinking of himself as anything but present [in the moment] answered, “No… not a God” and kept walking.  The monk pursued him and repeated his questions until the Buddha finally answered him with “No, I am not a God, I am awake.”

“Can it be that our purpose, no matter whom we run into, no matter what we are told, is simply to be awake?”

This chapter pushed several buttons for me, as I find this health struggle/journey  has forced me to examine many aspects of my life more closely than I ever have before.  I was reminded of something else I read years ago by one of my life mentors, Daisaku Ikeda:

Please develop a strong self so that you can enact the drama of your life with confidence and poise in the face of whatever vicissitudes you may encounter.

This continues to be my challenge, and I must admit that days like today are more difficult than usual.  However, I remain determined to become the best example of a woman enjoying life and making a difference in the lives of others, with or without MS.



  1. You Are strong. What a great example for us.
    thank you.


  2. I hope writing and sharing your experience is helpful to you – it is inspiring to read and I keep you in my prayers.

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