Emily Morrison is like a lot of other young women - except for that inoperable brain tumor

“At 26, Ms. Morrison enjoys going out with friends for a few glasses of wine. She goes to yoga and spin classes. She likes crafts and college football. She's big on shopping and adores jewelry. She's looking for love” says a recent Wall Street Journal article by Melanie Grayce West.

"I don't look sick. I don't look blind. It's really hard, I think, for people to grasp that I have an inoperable brain tumor," says Ms. Morrison.

One thing I love about her is her capacity to live life on her own terms without freakin' out.

Another thing is that she gives back to the brain tumor community by raising $$$ (notice the three dollar signs). She's raised far more than I have (yes, I'm embarrassed).

Here brain tumor walk to raise even more $ was almost two weeks ago, but I'm sure she'll still take donations to help fund BT research at http://www.braintumorcommunity.org/site/TR/Events/BTW-NY?team_id=59032&pg=team&fr_id=2092

And here's a link to the recent Wall Street Journal article about her: http://online.wsj.com/article/SB10001424127887324688404578545540985709514.html?KEYWORDS=brain+tumor&mg=id-wsj#articleTabs%3Darticle  

"Experts by Experience: A compilation of patients’ stories"

Here’s a crazy idea, let’s publish an anthology of columns from patients that focus on the desire (Hope? Assumption? Hallucination?)  “…by patients for their doctors to truly hear them, and consider them a partner in the care process.”

What a wild and crazy idea!?

Inspire.com has done this in conjunction with the Stanford University School of Medicine and you can find the free report here: http://www.inspire.com/groups/american-brain-tumor-association/journal/a-new-inspire-report-in-collaboration-with-stanford-medical-school/?ref=as&asat=94510303

The report’s preface notes that, “Many patients want to share their stories, to help themselves and others. As Laura Haywood-Cory, a woman with a rare heart disorder, said, ‘As patients, we need to not expect perfection from our doctors until we achieve it in ourselves. And doctors need to give themselves permission to not know everything and to not feel threatened by empowered, educated patients.’”

To me, this seems pretty damn obvious. Of course my neurosurgeon was the irrepressible Dr. Gail Rosseau, and I can’t imagine her feeling threatened.

I like the columns. They’re succinct, poignant, pointed, insightful and heartfelt. Here’s some of the more provocative titles:

• "Dr. Google: Threat or menace?" by Laura Haywood-Cory
• "Doctors: Please have “ears that hear” by Judy Peterson
• "Looking for comfort during a less-than-comfortable diagnosis" by Stan Hardin

 Send me a note with your reactions after you read them.

John

“You should feel lucky, it could have been worse”

A close relative said that to me the first time he saw me after one of my brain surgeries.

While I know he meant well, it was a particularly hurtful thing to hear. I couldn’t work. I was partially blind. My Lumosity scores were in the toilet and I couldn’t drive. I felt anything but "lucky"and he seemed oblivious to the world of hurt I was experiencing.

Here’s some other particularly insensitive advice/comments/observations that well-meaning but clueless friends and family have said (to others):

“God, you look awful!”*

“It’ll take time, but you’ll get over it.”

“Try to be strong for your children.”

“This was meant to happen” or “There was a reason for this.”

 “You should hear what happened to me.”

“I know how you feel.”

I’m thinking of creating an “IDIOT friend of the Month” award. In this case, IDIOT, stands for an “Ironically Demonically Insensitive Obnoxious Tongue.“ To commemorate the event, I may hire a sculpture to make a bust of somebody with a huge mouth and the word "IDIOT" stamped on their tongue. 

So send me the incredibly insensitive remark that somebody has said to you or, if you're a caretaker, your loved one (If you have a better name for this award, shoot me an email.)

*This comes from Ms. Letty Cottin Pogrebin’s wonderful book, How To Be A Friend To A Friend Who’s Sick.  It’s a great read and she can tell your IDIOT friend award winner what they should say. 

If your local library doesn’t have a copy, you can buy it on Amazon.com: http://www.amazon.com/How-Be-Friend-Whos-Sick/dp/1610392833/ref=sr_1_1?s=books&ie=UTF8&qid=1372085424&sr=1-1&keywords=how+to+be+a+friend+to+a+friend+who%27s+sick

Image credit: <a href='http://www.123rf.com/photo_8251731_obnoxious-senior-man-with-bow-tie-on-white-background.html'>creatista / 123RF Stock Photo</a>

 

Latest Brain Surgery Celebrity: Mumford & Sons bassist Ted Dwane

According to The Independent, Mumford & Sons bassist Ted Dwane has posted a picture of himself on Twitter following treatment for a blood clot on his brain last week. The musician, 28, was released from hospital in America on Friday and is now "on the road to a full recovery".

Here’s a link to The Independent’s article: http://www.independent.co.uk/arts-entertainment/music/news/bear-with-a-sore-head-mumford--sons-ted-dwane-posts-picture-following-brain-surgery-8662997.html#

Here’s a link to the band’s facebook page where you can read their announcement: https://www.facebook.com/mumfordandsons?fref=ts 

Yes, he didn’t have a brain tumor, but I am a sucker for anybody who posts a picture of themselves right after brain surgery of any sort…as you can tell by my own post-surgery picture: http://johnstumor.blogspot.com/2013/05/yes-this-looks-icky.html

Your Brain On Yoga…

…is pretty good. Actually, its better than good. The Telegraph, a UK newspaper report about a new study in which “…researchers were surprised to see that participants showed more improvement in their reaction times and accuracy on cognitive tasks after yoga practice than after the aerobic exercise session, which showed no significant improvements on the working memory and inhibitory control scores.“

Here’s a link to the article: http://www.telegraph.co.uk/health/healthnews/10103581/Yoga-better-for-your-brain-than-exercise-study-finds.html?ll_leid=259&refer=3745

Image credit: <a href='http://www.123rf.com/photo_13906060_yoga-utthita-hasta-padangustasana-one-leg-balance-pose-by-woman-in-red-cloth-on-tea-plantations-in-m.html'>byheaven / 123RF Stock Photo</a>