Sharing the lessons along the way…


On Tuesday, the dose of intrathecal baclofen was reduced 10%.  By the middle of the day Wednesday, I could tell a difference in my ability to walk.  Wednesday evening, my friends hosted a Make Your Own Sushi dinner party for me and gave me a fun surprise that you have to watch.

As the day wore on, I was concerned about leaving the safety of my house where I could move around better to go to dinner.  There was no way I could not go, so I put on my big girl panties and figured I would just deal with whatever mobility challenges arose while I was there.

I have spent a great deal of time and energy in my mind trying to anticipate, predict and plan for what the next decrease will mean.  I know it is a waste of  energy and is futile to be so far ahead in the future that I am missing what is happening in the present.  I cannot know what I do not know, no matter how many times I spin it around in my head!

As the symptoms of my illness slowly resurface with each decrease, being present is that much more important.  I was aware of each step I took in my friends’ house.  I was feeling the love of each friend who was present.  I was savoring each bit of sushi we each made to share.

Not only did I get my very own pair of big girl panties Wednesday evening, but I also had a blast being very present in each moment. Every moment of every aspect of the evening I was present for and it felt so wonderful!

I couldn’t be more grateful for such a supportive group of friends and they never cease to amaze me with their capacity for love.

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