Everything Changes - The Guide to Young Adult Cancer

The fatigue of cancer treatment made it hard for me at times to watch a movie let alone read a book.  I also often suffered from cancer brain fog and a racing mind from thyroid hormone replacement.  I interviewed in my book, Everything Changes, young adult cancer patients who have ADD like symptoms from chemo brain.  Each of these circumstances can make it hard to follow the content of a great non-fiction tomb or a long novel, and lend themselves well to the cyclical, mind-numbing loop of facebook, youtube, and super trashy reality TV.  At first these can feel like a great salve.  Cancer brings so much stress and checking out from the intensity of life can feel healing.  But there is only so much quick fix social media and addictive reality TV I can take before I start feeling even more depressed about my brain turning into a trash can.

I am a person with intellectual inklings.  I like to read and learn, even when my body and mind aren’t in their prime.  Once while waiting an excruciatingly  long time for test results that would decide if I needed more surgery, I began reading short stories.  They have become my go-to reading ever since.  I have come to deeply appreciate the craft of short stories because every word counts.  No image, plot line, or detail is frivolous.  Everything matters.  This subtle sense of urgency in writing helps to keep my mind more engaged.  There are fewer avenues down which my mind can wander.  I like feeling this sense of focus.  It reminds me that my brain is not shot to hell; I can latch on to content and follow it through.  And, because a short story can be completed in only one or two sittings, I am more apt to remember the characters than if I am constantly picking up and putting down longer fiction.

Alice Munro is my favorite short story author.  Some readers complain that all of her stories begin to sound the same.  I agree, but instead of a detriment, I find it an asset.  I feel as though I am submerged in her world, and while living with the uncertainty and stress of a chronic illness, I am so glad to escape my world and join hers.  I almost cried when this year on my birthday it was announced that she won the Nobel Prize for literature.

If you are new to short stories and don’t know where to start, two very good collections are the O. Henry Prize Stories and the Best American Short Stories.  These are both published yearly and can often be found at your local library.  Also, if you know anybody who subscribes to the New Yorker, ask them to stock pile their old copies for you as each issue has a short story.  The New Yorker is weekly, slender, and the perfect light weight to carry in your bag to chemo or for an extra long wait at your next doctor appointment.

For more practical tips on handling body and mind changes that accompany cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I know I’m smart.  And, that I.Q. tests don’t prove a damn thing.  Still I took a cheesy online I.Q. test three years ago just to prove to myself that I’ve got brains.  There’s lots of talk about how cancer affects our body image, but what about how it impacts our mental and intellectual self-esteem?

Since cancer, my brain has become a sieve.  I feel inadequate at dinner parties when I can’t spit out cool facts from NPR.  I feel silly defending my positions in conversational arguments; I get one point out and the rest disappear. Forget about retaining facts I read in the newspaper, recalling plot lines of books, or being able to follow driving directions or recipes without rereading them 100 times.

I’ve mostly learned to cope with my fear of sounding stupid in front of friends, colleagues, or strangers.  It’s a matter of overcoming my vanity and not caring what other people think. (Do they even notice my mental short- comings or is the flashing neon arrow pointing at my brain just my own baggage?)

What’s harder are the limitations and frustrations my memory presents to me personally. I’ve thought about going to grad school or working on a PhD but my current brain function truly isn’t capable of the work.  Instead, I’ve satiated my intellectual curiosities in more manageable ways, like writing my book Everything Changes.  Organizing and retaining research information for my book was challenging, but it was an independent project that I navigated on my own terms.

I don’t put much stock in beauty, charm, or humor.  Compassion and intelligence have always been what I prize.  So it’s been a struggle making peace with my scattered cancer brain.  There’s some real sadness there for me.  But while my mind feels deficient, I’ve learned how to move beyond feeling like crap about it and started making the most of what I’ve got.  I’m still a stellar creative thinker and believe I’ve still got it going on in the critical thought department.

Next week I’ll write more about my tricks and tips for dealing with brain fog and forgetfulness.  But for now, I’d like to know your experiences.  Have you faced intellectual self-esteem issues as a result of illness?  How do you handle the emotions that go along with it?  We joke a lot about chemo brain in the young adult cancer community, but have you found a place to talk about how challenging cognitive deficits really are?

Enjoy the fruits of my mental labor!  Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.