Adjust, Adapt and Accept with Grace.
This is the mantra I try to live with; operative word being “try” and not always successfully.
I chased a diagnosis for 20 years; from my mid 40’s to my mid 60’s. MS was just not on anyone’s radar. The journey to diagnosis included a surprise finding in 2015; a syrinx on my spine. The doctor who found it was gleeful. He found (or so he thought) the reason for the increasing weakening in my left leg. The surgeon who actually put in the required shunt threw his hands up in the air when my walking did not improve. He was not the only one who was disappointed but in retrospect, if the syrinx was not addressed I might have had another set of problems.
The awareness of having this disease is a constant now. It’s present when I wake up and have to reach for the walker and it’s present when I go to sleep and have to physically lift my leg onto the bed. It’s my constant companion. The awareness is mental and emotional in addition to being physical. I have a presence and mindfulness that had not been there before I became so symptomatic. Every step taken, every movement made, every little chore accomplished, is a reminder that I have an ongoing disease. It sucks.
I have had to galvanize myself in a way that I never dreamed possible. I have had to establish priorities and relationships. There is really not much time or effort for me to waste. Every successful step is precious. Every relationship counts. I no longer have the patience to explain why I cannot or will not. I am fortunate to have a bubble filled with family and friends who get it. Nothing I say needs to be repeated twice. Nothing I do, or cannot do, is questioned. They take me at my word and read me by my actions, or lack of.
I am constantly reminded of the need for resolve and determination. Sometimes it is not there and I accept that too; this is where grace comes in.
There are too many other components of this disease to slice and dice but when all is said and done, I do not want to be known as “poor Shelly”. I was never that…still do not want to be that.
I’ve been trying to think of a way to wrap this essay up and tie it all together. I can’t and I’m realizing that’s ok too. Just like MS, there can be no perfect ending.