Making Friends with MS

I’ve had MS – multiple sclerosis - since 1988
At first it was ‘remitting-relapsing.’
Then it progressed.
I can stand up, but I can't walk unassisted.
I once loved dancing the hora. 
    I didn’t really know how,
	but that didn’t slow me down. 
    I remember the family square dances in Grandma Paula’s side yard
	I still remember some of the singing calls.

Until MS limited my mobility, my favorite kind of political action
    was not my electoral politics, with street lists and strategies.
	It was the peace walk: one foot in front of the other,
    then repeat.

I’m still putting
    one foot in front of the other.
	even when I’m sitting in my wheelchair.

My vision is impaired, and I no longer drive.
But now I’ve got a power wheelchair and it goes on the bus.
     Mobility!  Freedom!

When I'm praised for demonstrating in my power wheelchair.
	I explain that my chair makes it easier.
     In a way, I should thank MS for facilitating my political action, 
	and also thank Medicare that paid for the power chair.

I still enjoy reading, even if I'm slower.
     My memory is a little worse, but I'm sharp enough
	to enjoy the harder Sudoku in the newspaper.
I have no sense of smell, but I still enjoy eating.
     and everyone enjoys the potato kugel I make for potluck dinners. 			

About 2003, I found myself “at liberty.” 
     They didn’t turn me down for jobs 
	because I was 60, and had MS.
	    That would have been illegal.
When my unemployment comp was running out,
     some friends encouraged me to apply for disability.
	    MS is a “listed impairment,”  which made approval easy.
     I don’t think of myself as ‘disabled.’

Happily, I’m in no way out of work,
     just out of a job.
I’m still busy.	 
     I support public transportation
     I support neighborhood power, especially in Oakland and Bellefield.
     I do some law and some politics.
One foot in front of the other.
     Everything will come,
	including the next bus.

I won’t run again for Pittsburgh City Council
     or any public office,  I can’t even run for a bus.
	But I'm an officer of the Allegheny County Democratic Committee,
            the Fourth Ward secretary. 
	I'm on the Executive Committee of the Allegheny County Transit Council,
	    the citizen advisory body for PAT, which runs the buses and trolleys.
	I’m on the board of my neighborhood council,
	 Bellefield Area Citizens' Association, 
     I rarely litigate, but I keep my license 
	and do some legal work, mostly free advice for friends.  
     I can’t canvass door-to-door for the candidates I support,
	but each election my wife and I send out a newsletter.

MS does me a favor by teaching about death.
Each lost capability is a little death,
     like the death of anyone we loved, or even liked,
     like a broken friendship.
     A day lost to a serious illness is also little death.
These little deaths help us prepare for the big one. 

MS kindly reminds me to appreciate the kindness of strangers 
     in small mundane things, like helping me put on my overcoat,
	as well as my community work.
MS gives me appreciation of little things I can still do,
     like bending down to pick up a dropped pen.
I appreciate what MS lets my nerves and muscles do.
     And I still push the envelope.

Buddhist teacher Judy Lief's book, “Making Friends with Death,” is wise.  
     I appreciate that MS is always close to me.
MS certainly strengthens a core Buddhist teaching: live in the present moment.
     Don't regret the past or worry about the future,

So, what’s my relationship with MS?
     Til death do us part?  I hope not.
Sometimes it’s intimate
     in unpleasant ways.
But appreciation is not love.
     I’m not forsaking all others.

Respect?  Oh yeah.
Acceptance?  Yes, but not resignation.

I relate to my MS as an activist.
     I don’t spend hours on the web,  hoping someone has found the cur	
	I go in my power chair on a local MS Walk, to raise money for research.
	     I'll help my constant companion go away,
I’ll keep on, with my computer, my power chair, and especially. 
     'with a little help from my friends.'
     I'm happy I can still make a difference.
One foot in front of the other.
This entry was posted in Buddhism, Personal. Bookmark the permalink.

1 Response to Making Friends with MS

  1. joeythebuddhist says:

    ” I appreciate that MS is always close to me.”
    That’s a really powerful insight and what a great post! Thanks for sharing 🙂


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