My favorite brain tumor, cancer and traumatic brain injury memoirs

There is something about having a brain tumor that leads to interesting, provocative and brutally honest tales of brain tumors and injuries.

Here’s my top six. I’ve read every book on this list with the exception of Curveball, which I just got in the mail yesterday.  I like them all and, somewhat surprisingly, like them for different reasons.

Cancer Vixen by Marisa Acocella Marchetto brings unexpected glam and style to the genre. I found the graphic novel format powerful and emotionally involving. After finishing this book I wanted to have a beer with her husband who, for all his restaurant fame and fortune, seems like a really likeable guy. All the same time, it’s a bit “New Yorky”.

Curveball: When Life Throws You a Brain Tumor, by Liz Holzemer, is something I’m looking forward to reading. Her blog - http://wwwascrewloose.blogspot.com/ - is completely different from the usual brain tumor rant. I’m also a fan of her personal commitment to “give back” through her 501(c) (3) not-for-profit organization, Meningioma Mommas - http://www.meningiomamommas.com/donations

Gabby’s book, Gabby: A Story of Courage and Hope by Gabrielle Giffords, Mark Kelly and Jeffrey Zaslow - is at one and the same time horrifying and inspiring. You just gotta love her and her husband.

I also loved Suzy Becker’s book - I Had Brain Surgery, What's Your Excuse? - and her unrepentant honesty about her disease, her emotional roller coaster ride, her tenacity and her drawings. (I also have a soft spot in my heart for bikers and those who give back – and Suzy is both) She blends her writing and drawings into a complete story that words alone just couldn’t tell.

My Stroke of Insight by Jill Bolte-Taylor is, for me, the seminal work in the arena which combines personal journey with incredible scientific insights. I also want to start a fan club for her unbelievable mother.

Ms. Wisenberg’s blog and resulting book seems to have been on the vanguard of cancer blogs and, as you would expect given her literary background, creatively written. If you have a chance to listen to her speak in person, grab it. The time I saw her she brought the little statue/avatar her publisher made for her which, by itself, was worth the price of admission.

What have I missed?  What should I read next?  I’m interested in everybody’s comments, suggestions and recommendations.

My favorite therapists

I’ve been thinking about what makes for a really great therapist, because I’ve had two therapists that I thought were great: Ms. Violet Potocki and Ms. Beth Sullivan.

And as I think about it, it’s a tough job.  Most have the technical skills required for the job, i.e. what task to assign at what time in a patient’s journey given the issue they’re tackling. I found, and I think the literature agrees, that the task should be a bit challenging without being overwhelming.  I once had a therapist who gave me a homework assignment that was way above my ability – it took me five hours to complete one “find-the-words” exercise.

There’s also the coaching side of the job which is part street-smarts and part good listener and requires somebody with a pinch of empathy in their soul. They’re the type that knows that a smile and positive encouragement greases the gears. Just like in an athlete, if you think you can do it, you’re halfway there.  If you think your therapist doesn’t think you can do it, whatever “it” is, it’s a lot, lot harder.

This is another way of saying that I’ve also had the local equivalent of Nurse Ratchet proctoring me.  If you’re not familiar with Nurse Ratchet, try this link: http://en.wikipedia.org/wiki/Nurse_Ratched b

I’m also partial to therapists who know how to let you make an assignment fun.  While working with Beth, she gave me an assignment of plotting a cross-country trip from our house to the west coast.  She wanted to see if I could parse it into drivable chunks and figure out a route that made sense. I took that assignment and added an overlay of stops at Drive-in, Diner and Dive restaurants from the TV show of the same name. My first stop would have been Big Mama’s in Omaha because anybody who loves sweet potatoes and ice cream is alright with me - http://www.bigmamaskitchen.com/page/1h0l9/Home.html   

Beth genuinely liked that. She didn’t fake interest or somehow feel that it was frivolous.  I now use that example in my patient presentations because it hits on so many of the high notes that a good therapist weaves into her inspiring rehab song.

Some of the videos of Representative Giffords going through rehab also show a therapist who also seems to have all the temperament and vision and technical skills you’d love to have in your therapist. Here’s one example - http://www.youtube.com/watch?v=a16UBv9gEt0&feature=related

I’d love to hear more from everybody on this.

John

The Gabby Giffords Book Review

I read this book for two reasons. First, it’s a great story survival story of recovering from a gunshot wound to the head. Secondly, I feel that I have some kind of psychic connection with Gabby as we both have had significant pieces of our skulls surgically removed, albeit for different reasons, at very similar times.  And then we both had our cranioplaties - insertion of a prosthetic skull - performed the same week.

I am happy to report that the book works on many levels. It's an interesting story of the lives of two highly accomplished individuals - Congresswoman Giffords and Astronaut Mark Kelly. And it’s also an honest portrayal of the trials of rehab and recovery.

The book makes it clear that Gabby's injuries were horrifically acute, and her recovery has been slow and painful. It reports that she has lost 50% of her vision; that her right hand and arm are less than functional; that she wears a brace; and that she has continues to undergo rehab for aphasia (an impairment of language ability). Here’s a link to her Diane Sawyer interview which gives a good sense of her aphasia: http://www.youtube.com/watch?v=yqH5v-VVp28

Given where she started from, her recovery is nothing but miraculous.

At times I yearned for a bit more about Gabby and a bit less about Mark, but she's not really ready to talk or write much. And it’s clear that he loves her as you can see from this U2 video: http://www.youtube.com/watch?v=9ydz5-ecdpg

Importantly, the emotional storyline feels real and heartfelt. Said differently, if you don’t at least mentally tear up during some section of the book, it’s time to get your oil checked, because you’re not human.

Lee and Bob Woodruff and Gabby Giffords

Here’s two brain injury survivor stories for the price of one: Gabby Giffords and Bob Woodruff.

Gabby’s story needs little introduction.  I think we’re all pretty familiar with her story now that she and her husband have published a memoir.

My memory of Bob Woodruff’s injury was pretty vague.  In a Parade magazine article Ms. Woodruff reported that in 2006 “I learned that Bob, an ABC news anchor on assignment in Iraq, had been riding in a vehicle that struck a bomb. Shrapnel was lodged in his brain, and he lay in a coma. Doctors didn’t know if he’d survive, much less function normally.”

And while Mr. Woodruff was the victim of a bomb instead of a tumor, the consequences were similarly horrific: “Bob emerged from his coma on day 36. He opened his eyes and asked me where I’d been—just like that. But he was missing vast parts of himself, like slices cut from a pie. While he could breathe on his own and answer basic questions, he couldn’t name the president and at first didn’t remember we had twin daughters.”

What I like about this survivor story is that Ms. Woodruff doesn’t sugarcoat the pain and struggles of the rehab and recovery process, e.g. “My heart broke into a million pieces the time I saw Bob, a man who had a photographic memory, struggle to identify the word for 'broom' on a card. Even after he began making progress, for every two good days, he’d have a payback day and be overcome by exhaustion and pain.”

You can find the posting here: http://www.parade.com/news/views/guest/110306-coming-back-to-life.html

Rehab and Gabby and Mud

The Gabby Giffords interview is still rolling around in my head and churning up lots of thoughts.

One that I keep coming back to is the importance and challenge and sheer dreariness of rehab.

Upon returning home after my second brain surgery for meningioma, I decided that my new full-time job was rehabilitation.

But here’s the problem, rehab is a pain.  I’ll bet you dollars to donuts that everybody in rehab will tell you that there is nothing they like about rehab.

Rehab is hard, boring, repetitive, slow, exhausting and, in the short-term, not particularly rewarding. Perversely, though, it’s also incredibly important.

The videos of Gabby Giffords while she's in rehab are almost painful to watch – especially the bits where we see her flounder as she relearns facial expressions (like “sighing”) or relearns the simplest of words (like “Chair”).

It reminded me of trying to tackle a seemingly easy Sudoku puzzle while in the hospital and, after a half an hour or so, figuring out that I couldn’t figure it out.

One of my greatest fears about brain surgery was that I’d survive, but wind up as some smaller, less competent, slower version of what I once used to be. My early cognitive tests seemed to support those fears, which just terrified me.

As my fear drove me to tackle rehab like a dog with a rag, I realized that some days were good days and some days I looked at what I had done…and had to give myself a “D-“. 

I used to tell people that rehab was more of a marathon than a sprint because it took so long to get anywhere. But I was wrong.  It’s more of a steeplechase than a marathon.  Why?  Because while the race is long, every so often you have to jump a hurdle – e.g. a Sudoku puzzle or a therapist exam or a driver’s test. Sometimes you fall on your face in the mud – like Gabby trying to find the word for “chair” – and sometimes you clear the hurdle. Falling on your face in the mud, though, isn’t a reason for quitting the race. Like Gabby, you have to wipe the mud off, lift your head up and start running.

Gabby Giffords - My New Heroine

If you haven’t seen the recent Diane Sawyer interview with Representative Gabby Giffords, I highly recommend it. Here’s a link: http://abcnews.go.com/US/gabby_giffords/humor-determination-key-congresswoman-gabrielle-giffords-recovery/story?id=14944407#.TsLQP2HRaSq

 

Why do I recommend it? Because this program is the antithesis of a fake “reality” show. In contrast to fake drama, this is about the real drama and challenge and determination she exudes while trying to recover from the reality of being shot in the head.

If yesterday’s blog was all about “Fear of the Unknown” (see 11/14/11 blog posting), Gabby’s real-life situation is all about the “fear of the known”. 

Although in her case, “fear” is the absolute wrong word to use…because she and her husband Mark seem absolutely fearless to me.

To be clear, the program does not sugar-coat the extent of her injuries or the challenges of her recovery.  The early videos of Gabby learning how to “sigh” or “kiss”, let alone talk, speak volumes. 

The videos of rehab sessions with her therapist are especially poignant. When I saw her searching internally for a very simple word – “chair” – and could only say “spoon” instead, I physically winced.

Yet I don’t believe that she will be the same “Gabby” when she reaches her full recovery potential.

What do I mean, “Full recovery potential”? I mean when she maximizes the uses of the mental and physical powers she now has. Much like Jill Bolte-Taylor describes in her book, A Stroke of Insight, brain injuries of this magnitude change you…whether you like it or not, whether you rehab assiduously or hot, whether your doctor is great or not.

I found Ms. Sawyer’s interview, and Gabby and her husband’s determination, to be ridiculously inspirational...and I hope you do, too.