Elements of a Life

untitled,  1998, 3"D varies, ceramic

untitled, 1998, 3"D varies, ceramic


Yesterday I took a trip to a local MS Society and to a medical supply place to check out wheelchairs.

One of the challenges I’ve faced since diagnosis has been the dense and patronizing air of people trying to help me (doctors, nurses, sales people etc.).  The victim mentality that surrounds this disease is monumental.

Where on earth is there to go when you are proclaimed :  “Primary Progressive MS and there is nothing that we know of that can help you.”

The pronouncement has bad stuff built into it.

I don’t really blame anyone for caving to the very human response of shrinking in the face of this,  whether it be literally getting smaller and withdrawing into oneself or doing the  ‘brow sweat’  and hand wringing routine, or tears or eating,  drinking,  or head bowing and eyes narrowing in the apology for someone’s own thrill at their good luck for getting a pass on MS.

I really understand all this.

But it bores me.

Yesterday I tried to practice the  ‘SOMETHING ELSE’  I keep trying out as a panacea for the deadly slime of any kind of life sentence kind of thinking or being.

The way I do this is to hobble into new situations as free of my own GUNK as I can get and with an expectation there is a life experience about to happen that I might like.

One can call this incurable optimism if you’ve a mind to.

Anyway, yesterday it worked pretty well.

The MS Society was able to give me exactly what I needed and more in their friendly and well organized way.   Totally free of weirdness because what I came to them needing was their specialty and they are experts in the territory.

Then,  at the wheelchair store I met both salespeople.  They were young and eager in a fun way.

I felt very seen as a woman who cares about grace and beauty and aesthetics so we could stay far away from the horribly antiquated designs of most hospital stuff.

I bought a new walker that is camel-colored with a sassy plaid pouch attached.   I like it.

I tested scooters and wheelchairs and decided on what will serve my current needs best.

A fun and well designed portable scooter that breaks down into two light pieces so I can manage this whole set-up and take-down-put-in-the-trunk maneuvering.

The point of this whole post is the possibility of using my creative being to craft a new life out of the sort of bent and incongruent cards I’ve been dealt.

It’s up to me to set the stage,  invite the actors,  decide when to enter stage left and when to exit.   Good and fun props make the scenes interesting.  A slight shift of tone of voice or inflection can make or break a scene.

The big difference here is that I am no longer trying so hard to entertain others.

This is my play and I’ll do what I can to make it richly textured and keep my interest high.

I’ll be so pleased if some of my riches fall off the back of my wheelchair and you pick them up feeling richer too..

But really..  this is my ride and I’ll keep doing my best to keep it tuned toward adventure, beauty, curiosity and courage.

I want to keep wanting to wake up each day;  frailty or no…

I’ts ALL my choice,  damn it.


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