September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

July 10, 2019 A different kind of list


"Stamina" - the ability to sustain prolonged physical or mental effort

"Endurance" - from the root word "endure" - the fact or power of enduring an unpleasant or difficult process or situation without giving way.

I decided to look up the definitions of these two words - stamina and endurance - because I've been thinking about them both.

Stamina to me is more directly related to strength, as in building up my physical strength as well as cognitive/mental strength.

Endurance is necessary in order to keep going through a difficult process, in my case all of my neurological rehabilitative therapies. 

I've written before about various goals I have for myself, such as travel, live theater, & doing more outside my house.

Christina (CBT) told me about Kristin Neff, who talks about self-compassion. Here's a link to a really interesting short video of Neff talking, about Iraq soldiers, self-compassion  & PTSD - https://www.youtube.com/watch?v=3MGxmw7BgZE

I watched another, longer vid as well, & was struck by the idea of treating myself as kindly as I would a good friend.

I need to be my own ally, as opposed to my own enemy.
I'd start by telling myself that what happened to me was horrible - not just the night itself, back in Sept. 2011, but that my life got completely upended. Telling myself this is surprisingly powerful.

When I move through the grief, anger, frustration, etc., I say to myself "wow, you're working hard - good for you!"
Then I say "how can I help?" & the first thing that comes to mind is "encourage me" - isn't that a key in being my own ally, to encourage myself, especially when I feel really challenged, even overwhelmed? 

Then I ask "So what do you think about all those things you want, those goals?"

"Well, thinking about what I'd like to be able to do is overwhelming," to which I'd say to me "remember, the key is baby steps - not great, big, giant leaps."

My invisible disorders are not compartmentalized, but rather interconnected. If I think, for example, about traveling somewhere by train, this would be systemic multi-tasking for me, multi-sensory. Something that I'd need to repeat a number of times before I learned it neurologically, just like I've needed to learn taxis.

The same is true for anything new, & what I do in vision therapy, Feldenkrais, & cognitive behavioral therapy all need to help me in this process of learning. Some new things I try require some recovery time. There is frequently problem-solving involved.

I don't know literally and figuratively how far I can travel. I need to try things, & every time I do something new - even if it's a very small thing - there is learning.

Getting back to self compassion, while I'm trying, I need to tell myself "that was hard, so be proud of yourself that you tried!"
and if I'm successful "wow, look what I did!".

I need to remember how far I've come -

There was a time when going to my parents house down in Hyde Park (Chicago) was too much for me.

Going to our cousins in Marengo, IL was too much for me.

Doing 2 things in one day is sometimes possible for me.

Doing outings multiple days in a row is sometimes possible for me.
Using a smart phone is possible for me.

Using 3 different kinds of glasses, one of which has prism as part of the prescription is possible for me.

Managing our household is now possible for me.

I've got a long list of things I couldn't do before, that are now possible for me.

"So," I say to myself, "you've come a long way, be proud of yourself!"



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