Wednesday, June 18, 2008

Now I remember...

When times are good, energy is high, and body is strong, I forget why I have a handicapped placard; forget why I have canes and foot braces; forget why I no longer work.

When times are good, I forget that I have brain damage, forget that I have a rogue immune system, forget that I am not in control.

But then there are days that force me to remember. Let me explain:

I coordinated a Spiritual Journaling workshop for my Fellowship that was held on Monday. I found a speaker/facilitator, reserved the room, sent out notices, followed up with people to get a firm head count, bought refreshments, collected accoutrements such as a CD player, name tags, donation receipts, post-workshop surveys. I solicited volunteers to help set up the room. I arranged for transportation for the speaker. I scripted my part of the workshop, selecting one of my pieces of poetry to share, deciding how to introduce the speaker. I packed up my laptop for one attendee to use who has difficulty writing. I made sure everything was ready.

The workshop was a success. About 23 people attended, feedback was positive and there is interest in continuing this venture.

I was happy. “Coordination” was something that I used to LOVE to do when I was working, and something that I used to list as one of my strengths. For a time, I forgot…

That was Monday. Then came Tuesday.

When I woke up, I was exhausted. Unable to process spoken words or understand words written on the feedback sheets. I know it was English, but I didn’t understand what the words meant. I was worn out after a short conversation with the neighbors. Even with two naps, I was so tired. I had great difficulty dealing with human interactions. Every event felt like a major drama. Two people told me about things that I simply couldn’t remember happening. I couldn’t remember anything that people had said, that I had said, what I had committed to; and I didn’t have the brain functions to figure out what to do or say.

On Tuesday night, The Husband found me crying in the closet.

Today is Wednesday and I am still exhausted. But now I remember. Now I remember why I am unable to work; why I have a handicapped placard to conserve energy; why I have a cane to assist with balance. Now I remember why I don’t volunteer as much as I would like, or why I don’t sign up for every event that I want to attend.

Now I remember. But I wish I didn’t.



  1. On the bad days we all wish we didn't remember. Take joy in the good days and strength from those you love on the bad ones.

  2. Joan, sounds like you organized a fabulous event. Good for you. It feels good to be able to do some of those things, and to do them well.

    Do what you can, when you can, and enjoy those amnesia days.

  3. Wonderful post...very touching. I'm rather at a loss for words right now, except to say, "Joy can come at a cost". Let's hope you are able to keep your expenditure on "joy" at a lower rate.

    Linda D. in Seattle