Wednesday, 27 June 2012


5:00 am. Cool, breezy, damp after 24 hours of almost non-stop rain. At 4:00 I am sitting on the balcony dressed in PJs, and my blue velvet robe. I have a fuzzy pink blanket over my head and shoulders. The plants are asleep under miscellaneous pieces of patio furniture and plastic covers so I’m watching the sky lighten slowly to blue. There are big parking lot puddles, floating green leaves. The air smells clear and fresh.

This is an optimistic morning – somewhere in-between “side-effects” grabbing hold and spinning me into the cosmos and steroids making me feel…. I don’t know how to describe it…as if, I guess, my head was full of white noise. I start the shopping list for later: OJ with pulp, bread, eggs, avocado, paper towels and so on.

Now, I do one twentieth of what I would have on  a “normal” day once. And damn proud of it, too, if I do say so. Adjustment is a long process. Not only do I have this picture of who I am to tinker with, I meet a fair amount of resistance from friends and loved ones. We all project a little story on ourselves and the people we know – we cast ourselves or them in a certain role. Strengths, weakness, type of character – what role they play in the movie of our lives. I have often been perceived as strong. Stubborn enough to outlive everyone. To some people, I am more symbolic than real. When they see me “diminished,” the shock is clearly visible on their faces. They are shocked, or sad. I know the look, I’ve seen it in mirrors a number of times.

Still, there’s What I Was and there’s What I am. Underneath the brain hiccups, hiding behind new disabilities is the same person. A person who imagines singing plants and laughs at inappropriate jokes and who is stoic much of time. A friend of Wendy’s, a very wise astrologer, once dubbed me a “Namer” and that gets me though a lot. Although change is frustrating, there is a part of me always watching, quantifying, naming the changes I go through. Here’s that Mr. Spock thing again. I find if “fascinating” observing the effects. I make notes. I’ve always been an introspective person too. These days, I’m introspective (or cognitively impaired) in little hiccups. I rate my days by percentage. A good day is 60 %. Hell, I’m no over-achiever at this point. The physio ladies, in assessing me and recommending Rodney Roll, have already magically improved the grade.

I’ve been thinking about making a piece of bead embroidery lately. That could go on for some time, stuck between thought and action. (Remember the sweater I didn’t hang up?) I’ve have been very cautiously observing that the nerves in my feet seem to be regenerating – maybe. A little.

One step at a time, one burst bubble in the bubble wrap at a time.


Sandy said...

((big, gentle hugs))

Cynthia Newcomer Daniel said...


Cath Thomas said...

You are not diminised, you are. Point.
Pity is "perceiving the other as diminised, as 'less' than we perceive ourselves to be" - it is the incapacity of many to not see you as an entire soul in its entire beauty, whatever your body suffers... they feel sorry for you... this (the reflection of the disease) is not what a sick person wishes to see in others' eyes. A sick person wishes to be seen as the same soul as yesterday, eventually with more experience.
This is why we need to be compassionate, with all living creatures, because:
Compassion is "a deep awareness of and sympathy for another's suffering".
You are admirable, you are as beautiful as possible, you're a soul.
The little Prince's friend the Fox, written by Saint Exupéry said it in a much simpler way: one cannot see well with the eyes, only the heart sees things right.