Holiday weekend with a good book

It is wonderful to have a three day weekend.  For me, it is an opportunity to catch my breath after a pretty hectic May so far.  I’m looking forward to resting with a good book or movie, but I also plan to get most of my teaching stuff put away and to sort through papers and to go for a long walk or two.

I had eight things on request at the library this month, and my turn came up on three of them within the last couple of days.  Great timing!  Two of the requests are movies (“Once” and “Juno”), and one was the book “The Last Lecture” by Randy Pausch.  I read most of the book in one sitting.  It is the story of Randy Pausch, who was diagnosed with pancreatic cancer in 2006 and who was invited to give a Last Lecture at his grad school alma mater and former workplace last year.  He chose to speak about living out your childhood dreams, which he had mostly done long before his life was changed by one medical diagnosis.  The book, based on the lecture but with a lot of additional content, is absolutely wonderful.  I relate so much to Randy Pausch as a person — he is a professor, a huge Disney fan, and a person who lives very deliberately and always has.  He tells stories of writing to Disney repeatedly to ask if he could be a Disney Imagineer — they rejected him many times but he eventually got to do it.  He tells of wanting to write for the World Book Encyclopedia and finally getting to do so once he became an expert on virtual reality.  I have a bit of that spirit in me, of pursuit of dreams and making them reality, but he’s got that dialed up to 10!  It was inspiring and validating to read about his journey.

 

Schuyler’s Monster

What are you doing reading my blog when “Schuyler’s Monster” is now published and ready for purchase and reading?  Huh?!

I bought my copy in person today and told everyone at the store what a complete thrill and honor it is to buy a book written by someone who I know and have spent time with (years ago) in real life.

I got home with The Book at 4:15 p.m. and didn’t move out of my rocker-recliner for six chapters.

* * *

Edited on 2/21 to add:  I finished the book last night.  It’s wonderful and heartbreaking and honest.

The Itsy Bitsy Updates

And on the 9th day of February…

… My cold is still hanging out but my temperature has come back down after five days of a low grade fever, and now I’m having bleeding issues again.  It’s just one thing after another this winter.  I’ll see my ob/gyn on Wednesday for ultrasound and exam.

… My “to do” list is about a mile long this weekend.

… I’m counting the days until spring break (just two more weeks!).

… My new research job is going really well, and my boss and I are two peas in a pod (both obsessive color coders!).  We have my first official “offsite meeting” with someone about our data on Friday, and the feds are coming to inspect us in April (eeeeek!).

… I got Richard Cohen’s book “Blindsided” about his diagnosis with Multiple Sclerosis (at age 25) and his journey since then.  He wrote the “Strong at the Broken Places” book mostly about other people’s stories with their chronic illness, but this other book is just his story.  I look forward to delving into it (hopefully after some of my “to do”s are “to done”).

Strong at the Broken Places

I finished reading Richard Cohen’s book, Strong at the Broken Places, last night.  It is a book that features stories about five people who live with chronic illness (all quite varied illnesses in fact, some progressive and fatal over the long run).  The book is excellent and powerful and full of hard truths that are often kept private.  So often, stories of illness focus on the silver lining and the aspect of overcoming the illness, but rarely do those stories also include so much detail about the difficult side.  People don’t want to read that.  It’s scary and uncomfortable.  They just want to get to the happy ending, right? When someone starts talking about the difficulties, other people — maybe people who haven’t been there — try to cheer them up.  Not so with Cohen.  He pushed for deeper truths, for the darkness to have a voice (which indeed is the only thing that takes away its edge).  I love that he took that approach.  In every story, there were truths that resonated strongly with me, many of which it would never occur to me that anyone else had experienced or felt.

If there is ever a lesson to be learned in this life, it is that no matter what you are going through, there is someone else who knows what it’s like and who understands.

Three things I learned this week

1)  You shouldn’t start reading a good book (“Strong at the Broken Places”) when you have a bunch of grading that needs to be done and your busiest social weekend of the season coming up!

2)  When you’re very proud of yourself for being ahead of schedule in getting a huge report done, you will find a thousand errors that need to be fixed when you don’t really have time anymore to fix all of them.

3)  If you’re trying to get a sense for how cold it is outside, asking someone who grew up in northern Minnesota is not a good plan.  She thinks a wind chill of one degree is “not that bad” whereas I think 20 degrees is “not that bad” but one degree is darn cold.

Back to Books

I am particularly excited to read two new books, one that was just published and one that will be published in one month.

The first is “Strong at the Broken Places” by Richard Cohen.  Cohen has MS and writes about five real people who live with chronic illness.  This is a rare topic to be covered in books or even in articles.  People are drawn to stories about very large battles against things that are curable, but stories of people who live fairly regular lives despite daily health challenges are not often told.  I saw Cohen interviewed the other day, and he said the same thing and that he wanted to give people with chronic illness a voice.  I love the subtitle of the book too.  It is “Voices of Illness, Chorus of Hope.”  Yes indeed.

The second book (to be published Feb 19th) is also a medical story but it happens to be written by someone I know.  My old friend Rob, who I met online in the mid-90s and met in person a few times, writes about his daughter who has a very rare disorder called congenital bilateral perisylvian syndrome.  He has always been someone who writes with such openness and honesty that just draws you right in.  I am so excited that his book will be published.  It is called “Schuyler’s Monster.”

A Reading Machine

I joined the local library’s adult summer reading program, and I am plowing through books now that my schedule is light.  If I read five books before mid-August, I get free stuff.  I like free stuff!  *giggles*

Earlier this week, I read “Letters to my Daughters” by Mary Matalin, which was very enjoyable.  I like how she writes.  I have one of the Peter Walsh’s books about organizing your life/stuff on hold at the library, and I’ve requested Elizabeth Edwards’ “Saving Graces” and Sidney Piotier’s autobiography next.  When I was young, I felt very bad about not enjoying fiction very much, but you know, books are books and people like what they like.  There’s not a thing wrong with preferring non-fiction.  I kind of wish any teacher had told me that when I was growing up!  And, even those darn GRE words show up in the non-fiction!  Ha!

P.S.  I added a link up top with my Reading List in case anyone is curious to follow those kinds of things. 

How Doctors Think

Last winter, in a time period of just a few days, three or four people told me I had to read this book called “How Doctors Think.”  It is written by a doctor about the process of decision making in medicine, which has a lot of faults driven by doctor’s personalities, their training, and a system that encourages seeing lots of patients in as little time as possible.

I finally got this book from the library last weekend, and I read about half of it yesterday.  The stories in the book totally resonate with me, as they tell of doctors who missed diagnoses and made bad decisions for any variety of reasons.  (If you like the show “House” and/or the documentary show “Mystery Diagnosis”, you would probably love this book!)  The doctor writes about doctors who don’t listen to their patients, who make decisions based on test results alone, who diagnose problems that “pretty much” fit instead of looking for the diagnosis that fully fits the patient’s symptoms.  The doctor writes about his own errors in thinking about cases, for example, when he felt bad for a patient and didn’t want him to go through a more extensive set of tests or physical exam because he’d already been through so much — and he thereby missed a major problem with the patient.

I read this book and nod, remembering the many doctors who made these errors in thinking with my case.  I remember doctors who decided before they even spoke to me that they knew what was wrong with me or, worse yet, that nothing was wrong with me even when I’m sitting before them overflowing with symptoms.  I remember doctors letting me tell about 30 seconds of my story before they cut me off.  I remember doctors acting like I was either neurotic or a total pain because I asked questions — how dare I actually want to understand what’s going on, why they are ordering certain tests, what they are looking for, and what I can do to help myself!

Fortunately, because I know I’m a rare case in every sense of the word and because we’ve always gotten to the bottom of every persistent problem I’ve had, I know better than to just accept a decision or judgment that a doctor has made when it seems off to me.  I sometimes want to say so badly, “Thanks for your opinion, but you’re wrong!”  But any doctor who didn’t listen to me and didn’t try to work with me on figuring out what’s up, would also probably be a doctor who would get irate when I said that!  And I’m not on this planet to make people mad, but I also don’t have to involve them in my care or let them guide my treatment either.   I know there are better doctors out there.  I have seen a bunch of them!  Instead of cutting me off when I tell my story, they ask good questions and want to fill in any gaps I leave in the story.  They let me in on what they are thinking and how we might proceed, giving me options and telling me about outcomes with other patients but also realizing I’m my own case and might respond better, worse, or just differently than other patients.  The four specialists who are actively involved in my case at this time are good listeners and good thinkers.  I really wouldn’t have it any other way.

As I Live and Breathe

I devoured another medical memoir this weekend.  This time it was a book I’ve been wanting to read for a long time, but the library lost their only copy and the book store said it was out of print.  Argh.  I finally tracked it down through a used book service (at a very cheap price!).

The book is “As I Live and Breathe” by Jamie Weisman, MD.  Jamie became ill with an immune deficiency in her teens and had a lot of struggles with infections gone wild in a body that had little ability to fight them off.  In her mid-20s, she decided to go to medical school and became a doctor.  She writes a lot about the experience of being a patient, making choices about career and having a family within the context of having a chronic illness that requires regular treatments and limits her energy.  Of all the medical memoirs I’ve read (and I’ve read a lot), this is probably the one I could relate to the most because it’s one of few where the person has a chronic illness.  Many of the sentences she writes — like “our illnesses can overwhelm us at the most unexpected times” — could have easily been written by me.

In an Instant

My tendency when I have a book to read is to either read a couple of chapters and then never finish it, or devour the entire thing in a day or two.  Rarely is there any in between with me.

This weekend I devoured “In an Instant”, the story of Bob Woodruff’s traumatic brain injury in Iraq and how that affected his family and others.  I thought it was excellent.  And being so engrossed in the book kept me from turning on the TV for 48 hours, so that’s always a good thing!  (Two researchers who study mental fatigue said the number one way to lessen fatigue is to turn off the TV.  Amen to that!)