Soon after brain tumor surgery a friend sent me the book, Stroke of Insight, by Jill Bolte Taylor. She's a brain scientist who had a stroke due to an AVM in her late 30s. At that time I related most strongly to her addressing the need to protect her energy by being careful about the sensory input she exposed herself to while healing. Being still in the very vulnerable immediate post-craniotomy space, it really resonated with me.
Now what jumps out at me in her book is her respect for herself no matter what her cognitive abilities were at different phases of her eight year recovery. As if the brain scientist in her accepted her deficits in a more matter-of-fact fashion than some of us lay-folks would. We wouldn't be ashamed if our kidneys weren't processing correctly...but our brain? Well, that's another matter. Who wants to admit to anything that would lead us to being perceived as less than smart? I haven't always made the best of life decisions, however, I've generally considered myself at least a smidge above the middle of the bell in intelligence.
So, now I navigate cognitive challenges. Not huge glaring ones. No, more mild and subtle encroachments. Whether from MS or the surgery doesn't really matter. I see how I struggle more through the day to stay on track, write an email or remember my phone number. I'm not sure if these are true cognitive deficits, fatigue by-products or both. I just know that figuring it all out to function is getting harder. And, no it's not normal aging. I'm inclined to openly look at this to create some strategies. Embracing this isn't admitting lack of intelligence, it's a matter of learning how to best access that intelligence and enhance it. If I just ignored this and pretended it didn't exist, well, that would be foolish.
My primary doc recommended someone for neurocognitive testing. Knowing that the testing outcome is highly dependent on the tester's interpretation, I'm gathering a bit more information before going down this road. The transparency shown by folks like Jill Bolte Taylor, my brain tumor forum pals, and some MSers, has helped lessen the burden of acknowledging this. Made me more understanding of whipper snapper smart folks with cognitive deficits while realizing it's an oxymoron for many people. Ok, ok, it's arguable as to whether I was ever whipper snapper smart but we'll table that debate for now.
Jinx Garza, fellow brain tumor survivor, about memory loss
Jinx on her neuropsychological testing
Now what jumps out at me in her book is her respect for herself no matter what her cognitive abilities were at different phases of her eight year recovery. As if the brain scientist in her accepted her deficits in a more matter-of-fact fashion than some of us lay-folks would. We wouldn't be ashamed if our kidneys weren't processing correctly...but our brain? Well, that's another matter. Who wants to admit to anything that would lead us to being perceived as less than smart? I haven't always made the best of life decisions, however, I've generally considered myself at least a smidge above the middle of the bell in intelligence.
So, now I navigate cognitive challenges. Not huge glaring ones. No, more mild and subtle encroachments. Whether from MS or the surgery doesn't really matter. I see how I struggle more through the day to stay on track, write an email or remember my phone number. I'm not sure if these are true cognitive deficits, fatigue by-products or both. I just know that figuring it all out to function is getting harder. And, no it's not normal aging. I'm inclined to openly look at this to create some strategies. Embracing this isn't admitting lack of intelligence, it's a matter of learning how to best access that intelligence and enhance it. If I just ignored this and pretended it didn't exist, well, that would be foolish.
My primary doc recommended someone for neurocognitive testing. Knowing that the testing outcome is highly dependent on the tester's interpretation, I'm gathering a bit more information before going down this road. The transparency shown by folks like Jill Bolte Taylor, my brain tumor forum pals, and some MSers, has helped lessen the burden of acknowledging this. Made me more understanding of whipper snapper smart folks with cognitive deficits while realizing it's an oxymoron for many people. Ok, ok, it's arguable as to whether I was ever whipper snapper smart but we'll table that debate for now.
Jinx Garza, fellow brain tumor survivor, about memory loss
Jinx on her neuropsychological testing
**************************************************
This 18 minute video from Jill Bolte Taylor is totally fascinating to me. She talks about the event of her stroke and her new perception of the world when her left brain went offline. I highly recommend it...
Posts
14 comments:
I am not kidding, Donna, when I say that yesterday I started working on a new haiku and its first verse is:
Am I a dummy?
I am smarter than I act.
I simply forget.
That's as far as I've gotten. We'll see if I finish it and publish it down the road.
If you haven't already, check this out by fellow MS blogger Enjoying the Ride:
http://www.enjoyingtheride.com/2009/12/new-theory-about-root-cause-of-ms.html
Judy
Donna, Dr. Taylor's video is amazing. What an incredible way to share an incredible experience! Thank you.
Dr. Taylor is one of my heroes.
Judy, LOVE the haiku!
Judy - Thanks for the link to the post about CCSVI. I've been following the CCSVI stuff for quite some time now and spoke to the surgeon at Stanford doing the procedure. I think there's something there. Looking forward to seeing your finished "smart" haiku!
Zoom - Isn't that an amazing video? When I was closer to my brain surgery and feeling so vulnerable, I'd watch it and cry every time.
Jinx - Yeah, I knew you were a JBT fan. I've gained a lot from your sharing about the neurocog testing. I don't have the swiss cheese memory holes but other things. I'm seeing a new MS Neurologist tommorrow and going to get more recommendations for testers.
Good to see you all here!
Hi Donna,
Please come by my blog and pick up your award.
Love,
Herrad
Hi Donna,
Came by to say hello.
Love,
Herrad
I own her book and heard her speech, amazing stuff. After I got hit by the vehicle at age 10, my brain never worked as good. I still got all As in school, skipped many days, so nobody saw a change but me. It was huge to me. The speed was gone. I was changed forever. Once in awhile the speed comes back, but rarer and rarer. I just go with the flow. I know what I once was. Some will never know that feeling. What would I have done differently? Probably nothing since I wanted to be an actress. But I get ya. It is a real loss that is not vanity, a loss.
This is amazing and makes me feel better for whatever reason. I am glad you posted this.
Herrad - Thanks again for the award and good to "see" you here!
Diane - Ah another JBT fan. Interesting observation -- after your accident you still functioned well but knew it wasn't the same. Part of it is very subjective and hard to explain.
HM - I've still been cringing a bit about this post -- not sure why. So, am glad to hear it made you feel better.
It is NOT arguable whether or not you were ever whipper snapper smart. You was, is, and shall be.
This post resonated with my experience. Your comment about "No, it's not normal aging" had a special zing. I might be talking to someone about how things are different post-surgery/treatment... telling them about the challenges like reading long numbers, forgetting what words mean and how they are spelled, and not being able to focus. Almost invariably, people's response is along the lines of "Oh, I do that all the time" or "Sucks getting old, doesn't it?" With most people I smile and nod. With people I really care about I try to explain. Sometimes it seems they actually get it; more often they smile and nod.
I came back to tell you that I posted your link (and gave you credit) on my blog.
This video really helped me a lot and thanks a lot! =) I plan to get her book now.
Hey Azale - yep the normal aging remarks pushes the button for most of us. And, what you've gone through, well, I could see it pushing more than a button! Yeah, I explain it less and less in person -- maybe that's what the blog fulfills for me. And, I was going to comment that I like movies in Dutch/Flemish too but alas you're running a commentless blog. Hmm.
HM - I'm glad that the video resonated so much with you and that you forwarded it on!
I, too, found this 18 minute video very illuminating. Thanks for posting and writing about this woman's experience as well as your own.
I thought I would stop by and tell you I bought Jill Taylor's book. It is very good and thank you!
Post a Comment