August 28, 2009

Did You Reinvent Your Identity to Accommodate Illness?


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.

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  1. Michelle Says:
    August 28th, 2009 at 2:15 PM

    First, I love that you used the term CFM and I knew what it meant! LOL! Thanks for the laugh….

    Second, I don’t think that I changed who I am or how I see myself, and I certainly didn’t reinvent myself. Rather, I made a conscious decision to take the Michelle-Before-Cancer and incorporate that horrible C word into my life, making me Michelle-With-Cancer. I am proud of who I am and who I have become. I have definitely changed as a person, but it wasn’t a decision I sat and thought about – instead, I fought to just be ME.

    I am more confident now, and I am more aware of who I am and who I want to strive to be, but I am, when push comes to shove, me. I kinda like it.

    By the way, I also messed with my name in the 1980s, and went through life as Micki for a while. *shudder* :-) Just not a name for me…..

  2. Lori Hope Says:
    August 28th, 2009 at 2:52 PM

    Great question and topic, Kairol. I love who you are and love even more that you’re comfortable with your identity.

    I am, too, but wasn’t always, especially in my 20s and early 30s when I didn’t know who I was supposed to be, but found I’d become a depressed and workaholic documentary producer.

    About 8 yrs into my career, and 10 years before hearing, “You have cancer”, I reinvented myself, changing my last name from Van Kirk to my middle name, Hope. Why? It was time to give up my ex’s moniker 10 years post-divorce (long story), but instead of returning to my maiden name, Crasilneck, I went for Hope, which turned out to be quite fortuitous.

    I’d felt pretty hopeless after making 15 social documentaries, but my new name put hope front and center, making me the Hopeful One. Seems everyone I met commented about my meaning-full name.

    A few years later, after losing my job as a doc producer, I reinvented myself again as a freelance communicator. Terrifying and intoxicating.

    Flash forward a decade, one year after cancer blindsided me: I reinvented myself yet again, this time as an author, speaker, advocate, and compassion evangelist, after a publisher commissioned me to write a book about cancer.

    I’m waiting for the next identity shift. I just hope it’s one I control, and something in keeping with my name. Something that will inspire hope rather than despair.

    Thanks for your great post and giving us some savory thought food.

    Always hope, and always Hope ;) ,

  3. Erin Says:
    August 29th, 2009 at 8:28 AM

    I am actually having the opposite problem and am having a hard time letting go of who I was before cancer. My diagnosis came a week after I was married and with our one-year anniversary on the horizon I am having a hard time changing my name. I know this is never easy but it feels like the one last connection to my life “BC”, when I was happy and my life felt on track. Perhaps I haven’t come to that place yet where I accept Erin post-cancer but I don’t want to completely reinvent myself, its exhausting and I really did like “me” before this. I am trying to let go of what was, because it wont ever be the same again – easier said than done but its day by day I guess.

  4. Pat Steer (Gaelen) Says:
    August 29th, 2009 at 9:03 AM

    I don’t think I re-invented myself…but I did have to figure out what I was still capable of doing (training a dog, going to a dog show, camping, competitive cooking, teaching, writing) and what I no longer was comfortable doing (as cancer lingers, sometimes that list changes.)
    For me, who I am now (5+ years past dx) is a little different from the person I was in 2004…but I’d hope that as time passes I’d change a little (in a good way.) I didn’t become someone new — that would imply I’m finished developing, and that wouldn’t be true of me with or without cancer. The last five years have been more of an evolution than a wholesale re-invention. I might not have chosen the events that have affected my life, but I like very much who I’m becoming along the way.

  5. Kairol Rosenthal Says:
    August 29th, 2009 at 1:06 PM

    Anyone who is grappling with cancer and identity should read the comments above- you are all clearly thoughtful women who have great self-esteem. I think Pat’s comments give a lot of insight to where Erin is right now. Yes, we cannot go back to our lives pre-cancer, but it does not necessarily mean “wholesale re-invention”. I think in the heat of the treatment moment, when we are in acute care mode, it can seem like life will never be the same again. Perhaps life won’t, but I personally am much the same person I was before cancer. Yes, there are big changes, but I’m proud to say that I liked who I was a lot before cancer, many of those qualities served me well during treatment, and I carry them on in my life now.

    Erin, I am curious to know if you have considered not changing your last name? I chose to not change my name when I got married. It had nothing to do with cancer (although I did have a recurrence one month after my wedding.) I simply feel very connected to the person I have been all of my life and don’t feel like getting married changes Kairol Rosenthal into another person. My husband and I wrote our entire wedding ceremony – and one thing that he talked about during our ceremony is that he LOVES that I did not change my name. He fell in love with Kairol Rosenthal, not Kairol Fisk. Have you considered not changing your name?

  6. Pierre Says:
    August 30th, 2009 at 3:46 PM

    What a great topic for discussion! I was diagnosed with a brain tumor (Oligodendroglioma, grade 2) in 1984 at the age of 16. In July of 2008, I was diagnosed with a second tumor (benign, resulting from the treatments I had back in 1984–a scary thought). Even though it was benign tumor, after the Craniotomy I still had to travel the journey from wheelchair, to walker, to cane to…headstand (I returned to my regular yoga practice) With brain cancer you definitely become a different person. Underused parts of the brain take over to compensate for the damaged areas. One’s personality changes, as do one’s interests. After the first brain tumor, “Fred,” my IQ actually increased, much to my astoundment. But I found I was no longer interested in pursuing a career in mathematics or actuarial studies, but discovered a new ability to write and think analytically. After my second tumor, “Frank,” I am feeling more drawn to social work and/or the healing professions. And I am finding it very difficult to related to people who are petty or who have their identity tied up in climbing the corporate ladder. Perhaps the driving motivation toward social work is some kind of compensation for survival guilt. I have become more emotional after the second brain tumor and I feel a renewed passionto make a difference in the world today, not tomorrow. During my Gamma Knife Radiation procedure, part of the treatment for Frank, the radiologist told me that it is not uncommon for him to see people like me diagnosed with their fourth of fifth brain tumor. If that’s not a commercial for living for today, I don’t know what is! My frustration is that now at age 41, I am not sure how to redesign my life so that it aligns with some sort of social work mission. I do volunteer work with people in rehabilitation from a brain injury, but I am still at my mind numbing souless corporate job, where people ridicule some of the minor disabilities I acquired as a result of treatments. But as long as keep taking steps toward these goals, I am sure I will get there.

  7. Darrell Luke Says:
    September 1st, 2009 at 9:54 PM

    I started going by my middle name shortly after my second bit of cancer. Wasn’t that conscious of a thing at the time but it seemed to work well enough.

    Darrell was the man who would have been an Army officer. Guess he died mostly with the cancer. My family and old friends still call me Darrell. Seems like they are talking about someone else sometimes.

    Better and worse perhaps we are multi created, lost, and obligated roles

    “one man in his time plays many parts”

    “Pray for us now and at the hour of our birth(s).”

  8. Matthew Zachary Says:
    September 7th, 2009 at 3:16 PM

    Who the hell is Matthew Greenzweig?

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