Everything Changes - The Guide to Young Adult Cancer

My mom and dad drove to Chicago for an impromptu Labor Day weekend visit.  My mom sat by my computer this morning as I checked my email.  We began a conversation about Wendy Harpham’s blog post on “What doesn’t kill you makes you stronger.”

Cancer not only sucks for me, but it hugely sucks for my parents to have watched me go through it. I asked my mom what she says when someone tells her “What does not kill you makes you stronger.”  Her reply: “I’d rather be weak.”  I love my mom’s line of thinking here.  It is so her: bold, tactful, and humble.

I think and write a lot about ‘What is strength?’ ‘What is weakness?’  It seems to me the cancer community has blown out of proportion the concept of strength. My back has been up against the oncology wall many times when I’ve gone under the knife or swallowed a radioactive iodine pill.  I’ve surmounted these challenges not because I’m strong, but because the alternative means dying.  It is strange to have placed on me such lofty personality judgments and descriptors like strength, courage, and inspiration in response to having gone through situations that stink and about which I have no other choice.

In Everything Changes, I interviewed Jill, a 38-year-old breast cancer patient.  She said, “The last thing I want is people cheering me on because I had a disease that I didn’t want, was miserable getting through, and wish I never had.  That should not be my moment of fame.”

I agree with her.  I’m not saying don’t celebrate the fact that I’m still alive.  And I think it is great to honor cancer patients and recognize the challenges we face.  But don’t call me strong when I have no other choice.  It discounts the many nights that I sobbed alone into my pillow and felt cowardice in every inch of my body.  I don’t want to erase those moments with a clean sweep of ‘strength washing’; one of the best by-products of my  cancer is that it has helped me befriend weakness.  I no longer think of weakness as a negative term.  In fact, I’m pretty damn proud that I can let myself feel scared and vulnerable.  After all, cancer is scary business.

What is your response when someone says “What does not kill you makes you stronger?”   What do you most want to be celebrated for?  If you have a different illness, is there a lot of “strength talk” about your disease?

For more encouragement on finding strength through vulnerability, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Rick Gribenas is an artist and lymphoma patient quoted throughout my book Everything Changes. I’ve become friends with his wife Charissa since Rick’s death this past spring.  In addition to starting an organization, BRICKS, she’s been writing about her real time experience as a young adult widow.  Her first guest post was “How To Be A Widow on Myspace”, here’s more from Charissa:

“‘There are no rules for this,’ a very wise friend told me. And by ‘this’ she meant my mourning. She’s not a widow herself, but a level headed, tough-as-nails lady who knows a little bit about a thing or two. She’s the one who hopped in her car minutes after my frantic text message alerting her to the passing of my husband, and drove from Philadelphia to Pittsburgh so I wouldn’t have to spend those first few days alone. Of all the things people said to me over those awful, confusing days, this is the thing I have kept with me.

“I worried about my decisions, about facing each new challenge and how
I would deal with my own, chaotic emotions. There are no rules for this. No matter what, every decision I made was the right one, it had to be. I would know it was the right one. Whatever I felt in my gut was the thing to do, was. This was no time for second guessing myself, or doubting the validity of my feelings.

“Anticipating events and how I would handle them worried me over the following months. March turned into April, and suddenly my husband’s birthday was in front of me. I invited friends, I bought a case of his favorite beer and a cake he certainly would have approved of. We ate and drank and laughed and cried and it was everything it needed to be. The days got warmer and July was here, and I anxiously counted down the days to our 2nd wedding anniversary. I spent that night alone, in the foreign quiet of our house, feeling strangely at ease about the
whole thing. I realized that we celebrated every day, grateful for what we had found in each other, and the marker of the day we announced it to the world didn’t feel as heavy as I had anticipated.

“Some days surprise me with nearly unbearable misery, and others that I expect to be unbearable bring a peaceful calm. Either way, I fall asleep (eventually) and wake up to a new day. I get through it, and keep going. I take it one day at a time, and do whatever feels right for getting through it. After all, there are no rules for this.”

I’m curious to know how the rest of you cope when life is  hard and there are no rules. Is it comforting and easier knowing that it is up to you to forge your own path, or is it more challening to have no guide or reference point?

In 10th grade chemistry I created 40 phonetic spellings of my first name, chose Kairol, and it stuck. (I was born with the Mrs. Brady spelling. And yes, in 1987 you coul make up whatever name you wanted and slap it on a drivers license.)

So, I got curious when I recently learned Matthew Zachary, founder of I’m Too Young For This, is actually named Matthew Greenzweig. He developed Matthew Zachary as an alter ego after treatment. Here’s what he told me:

“When I was a senior in college, I was a concert pianist diagnosed with brain cancer. They said I’d never play again. I had horrific radiation, was so depressed, and thrown into the lion’s den of trying to figure out what happens to your life after treatment. That was the story of Matthew Greenzweig’s life and it was uncomfortable to be him.

I needed to reinvent myself. I taught myself how to use my left hand again and to play piano. I used my middle name ‘Zachary’ as my stage name. It was an identity created out of desperation; I was refusing to let cancer define me. My chaos, grief, and anger got channeled through the anchor of my pseudonym.”

Like Matthew, I messed with my identity during treatment by changing the way I dressed. I created outrageous pseudo-couture outfits from thrift store finds and wore CFM heels to the supermarket. It helped to feel more like Carrie Bradshaw and less like Kairol Rosenthal.  (Funny that my current wardrobe consists of sweatpants and hoodies –I should be thrown to Stacy and Clinton.)

As my cancer has lingered, I’ve switched careers from a choreographer and to a writer. Living with incurable cancer, I feel more comfortable holed up in the contemplative den of my apartment, living the writer’s life. If I had a choice, I would rather something less painful than young adult cancer as the catalyst for a career change, but here I am. And I’m pretty damn comfortable with my identity.

Illness changes many parts of our identity over which we have no control – becoming a bald woman, someone who can no longer work, who cannot conceive children… But, have you ever responded to illness with a temporary or permanent identity change that you do have control over?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to find out why Nora wore her Chrissy Hynde wig long after her hair grew back, and Mary Ann started dressing in outfits that made her feel like a lobbyist.

I’m taking a vacation from cancer.  And the rest of my life.  (That is why I have some great guest bloggers on this week!)  I’m eating low country boil and sweet potato pie on a slow relaxing Georgia trip with my man.  No computer access at all.  But when I learned that my interview about young adult cancer and health care in the United States aired on the friggin BBC radio, I just had to duck into a library, get online and listen to it!

I hear from so many people all the time who are young with illness and totally screwed by the system.  People think young adults are naive and don’t want health insurance.  Bull.  We just aren’t give much access, we fall through the loops, and it is completely unaffordable.

Listen to MY BBC RADIO INTERVIEW on health insurance and young adult cancer. Click the link and fast forward to minute 13.  Please forward and tweet this widely.  We need stories about the young adult health care crisis to be heard here in the United States, not just in England!

Hope you are all doing well.  Now back to my sweet tea and collection of short stories.

Over and out,
Kairol

PS - If you were interviewed by the BBC about health insurance - what stories would you have to tell them?  Is this story something you could write about concisely and try to get it into your local newspaper as a letter to the editor?  Could you call your representative and tell them about it?  Have you ever done either of these things?