Sunday, June 04, 2017

Weekly Inspiration: Honesty & Hope, Life & Death

I often feature either quotes from a book I've read or a TED Talk on Weekly Inspiration, as the source of my inspiration and a springboard for discussion. Well, today is special because this post features BOTH a book and a TED Talk - oooh!

Last fall, I read the best-selling memoir When Breath Becomes Air by Paul Kalanithi, a book that got a lot of (well-deserved) attention in 2016. The author, a neurosurgeon, wrote it while he was dying of lung cancer. It is a very open, honest look at his experiences, as well as the bigger subjects of struggles and joy, life and death. You can read my full review of the book at my book blog.

Although Paul had cancer, much of his experience with the sudden shift from wellness to illness struck a chord with me, like in this quote:
"Severe illness wasn't life-altering, it was life-shattering. It felt less like an epiphany - a piercing burst of light, illuminating What Really Matters - and more like someone had just firebombed the path forward. Now I would have to work around it."
          - When Breath Becomes Air by Paul Kalanithi

Yup, that's about it. I think "life-shattering" is a good explanation for how you feel after your diagnosis.

This observation equally moved me and felt perfectly applicable to life with chronic illness:
"Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day.
...If time dilates when one moves at high speeds, does it contract when one barely moves at all?"
           - When Breath Becomes Air by Paul Kalanithi

I'm sure that those of you who are homebound or bedridden can relate to that one. He also writes eloquently about his feelings when attending a medical school reunion at Stanford: "Yet being there merely heightened the surreal contrast of what my life was now" (that's just a short excerpt from a longer, very moving passage). I felt exactly the same way when I attended my 20th high school reunion, shortly after my diagnosis, tongue-tied as to what to say to my former classmates, how to explain the sudden, sharp turn my life had made, and how to reconcile my new limitations against what my peers were doing.

The whole book was excellent - very moving and powerful - and his wife wrote the last chapter, finishing it after his death.

So, I was immediately interested when I saw that Paul's wife, Lucy Kalanithi, had given a TED Talk: What Makes Life Worth Living in the Face of Death. You can watch the brief 16-minute video of her talk here:

I was equally moved by Lucy's talk as I was by Paul's book. As with the book, this isn't a depressing look at death but an insightful consideration of life, while recognizing that death is a natural part of life. Some of the topics Lucy covers in her talk that are very applicable to those of us with chronic illness (or anyone, really), include:
  • Resilience, an absolutely critical characteristic for those of us living with these rollercoaster illnesses.
  • Redefining your definition of success.
  • Honesty - being willing to say the truth out loud (I SO wish my extended family understood this).
  • Joy as a part of life, even in the shadow of death.
  • The importance of hope. I saw this first-hand with my Dad. Although he was diagnosed with Stage IV melanoma, his oncologist gave him hope for what might be possible. I also tried to give him hope, with a book that had helped me tremendously when I first got sick, The Anatomy of Hope by Jerome Groopman. As a result, though my dad was naturally a realist and not one to sugarcoat things, he maintained that sense of hope throughout his year of treatments. I sincerely believe he had a full year with us in part due to his sense of hope. I didn't see him lose that until the very last weeks of his life. It was an incredible gift that his doctor gave to him, as Lucy talks about here. Hope is also very, very important to those of us with chronic illness.
Although both the book and the TED Talk are about death, they are both ultimately uplifting and inspiring in their view of the meaning of life, how suffering is an integral part of life, and how to face your challenges without giving up hope and joy.

I hope you find these as inspiring as I did.

Have you read Paul's book yet? Did you relate to any of the quotes I shared here or anything from Lucy's talk?


Anonymous said...

I read the book last year and could appreciate the sudden change in his life but I found story more of a cautionary tale. On a practical level his approach to illness seemed inappropriate for ME/CFS (pacing anyone?) or really anyone interested in health. He repeatedly talks about not sleeping, not eating (or eating junk food), and otherwise ignoring his health and pushing his body beyond it's limits(including popping pain pills and ignoring the increasing back pain of his as yet undiagnosed cancer and almost passing out while operating on someone). I would have found it more inspiring if he had devoted as much effort to taking care of himself as he did espousing the all to common American attitude that one should ignore what their body is telling them and push through pain and fatigue at all costs.

Sue Jackson said...

You're absolutely right - certainly, there are plenty of aspects of having terminal cancer that are completely different from living with chronic illness. For instance, I'm sure that being told you only have months - or at most a couple of years - to live the rest of your life would definitely make you want to push past or ignore your limits. I can't even imagine.

His experience was quite different from ours in many respects, but when I read a book like this, I like to take what I can from it - and I found plenty of passages and quotes here that really spoke to me. I think we can find inspiration in many different sometimes unexpected - sources.

Thanks so much for taking the time to leave such a thoughtful comment - I appreciate it!

Unknown said...

I've really wanted to get back into reading. I just get bored super quick. Unfortunately, I'm a millennial kinda stuck in that short information/article/tidbits of news type of skim reading. However, for those that do read, that looks like an incredible book. I might get it for myself on the off chance I decide to read again, someday!

Sue Jackson said...

Hi, Danielle -

I LOVE to read - and so does my millenial son! If you feel like you have a short attention span, you should try some YA or even middle-grade novels. They are often shorter, fast-paced to keep your attention but some of them are really high-quality and excellent books. Or give audio books a try! Then you can listen while you walk, drive, or do mindless tasks like laundry, dishes, etc. That's what I do...and I often listen to YA and middle-grade novels on audio :)

A couple of recent YA/MG novels I loved that you might like (I also write a book blog):

The Hate U Give - AMAZING YA novel:

The Forgetting, a YA dystopian novel:

Oh, and all summer long, you can download FREE audiobooks - a mix of YA and other titles, 2 per week:

Hope that helps you get back into a little reading.

Thanks for stopping by and taking the time to comment!


Girl in Healing (Alexa) said...

I LOVED When Breath Becomes Air! Paul's perspective was inspiring and heartbreaking. I understand those similar struggles living with IBD. I have not come across Lucy's TED talk and I can't wait to watch it!

Sue Jackson said...

I also found the memoir both inspiring and heartbreaking - that last chapter was a tear-jerker!

Hope you enjoyed the TED Talk, too.