Tuesday, July 21, 2009

My Routine: Working on Letting Go of Some Old Routines

Survivor GuiltImage by _william via Flickr

I admit that my response was to feel guilty when I heard that two of my high school classmates had died in the month of June 2009 from breast cancer. This guilt is a 21 year routine with a fancy name: survivor's guilt.

Truth be told, 21 years is a long time to feel guilty...

I think it started after my cancer treatment, when I read a letter my doctor had given my parents for the medical insurance company. My doctor wrote that I had only a 33% chance of surviving after my cancer diagnosis. I was shocked. Apparently no one thought to inform me of this fact at the time I was diagnosed with acute promyelocytic leukemia, which is very strange, given that I was 22 at the time of my diagnosis, an adult by society's standards. After being told I had cancer and would be admitted to the hospital that same day, I do remember my parents being taken aside by the doctors for a discussion behind a closed door without me. In retrospect, I believe the doctors informed my parents and they all chose not to tell me.

Why is this significant 21 years later?

At that moment I discovered just how close I was to being in the 67%, that is, not alive at that moment, I felt overwhelmed realizing that I had been so close to death. So remarkable and terrifying, this knowledge after-the-fact filled me with a fear of dying that I carry with me to this day. The information literally freaked me out. Then I got really angry that no one had told me this. After all, it was my right to know how grave my situation was. I'm not saying I would have done anything differently, I just feel I had been robbed of the opportunity to feel that fear in the appropriate moment and process it during my cancer treatment experience.


Fear after the fact is a strange beast indeed. I began to question why I was alive and why some of the young adult cancer patients I met and befriended were not. After all, there were no obvious differences between us. I did not see anything different, special or exceptional about myself that would entitle me to be a survivor over my friends. We all deserved a chance to keep living. I could not make sense of it; I wanted desperately to make sense of it.



As for my fear of dying, there may be hope for me yet. I recently discovered this quote:

"We can help those afraid of dying..
...but how do you help those afraid of living?"

--Plaidypus


Now that I live with chronic illness---chronic pain, chronic fatigue, dysautonomia, Hepatitis C infection and Type 2 diabetes, all late effects and complications of my cancer treatment 21 years ago---I wonder what my friends who didn't survive cancer would think. Would they have wanted to survive their cancers too only to go on to deal with a whole range of long-term and late effects related to the cancer treatment they received? Living with chronic illness can be a real ordeal and there are days when, for a few microseconds, I regard being a cancer survivor as not that much of a blessing. What I have gained in extra years of life has been paid for by losses, unrealized dreams, worries, struggles and disappointments. Thank goodness I am flexible in the face of change, otherwise I would be in a million little pieces by now...



My friend Julie, who lost her battle with colon cancer in 1989, used to say that cancer was like the sword of Damocles: you never knew when it would swing the other way and chop off another piece. Watching from her place in heaven, I think she would also say that life as a cancer survivor is an equally precarious situation in which chance delicately dictates whether further tragedy will strike.



Perhaps now I can let go of my survivor's guilt, knowing that cancer survivorship, like cancer, is also a double edged sword.





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2 comments

Colleen said...

Tagore wrote, "Let me not pray to be sheltered from dangers, but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it."

Selena, you may think you are a chronic babe, but what I see is someone who has personified this quote. Even when you share your struggles and disappointments, I see the incredible courage you have. You don't realize this but you serve as an inspiration to me. Thank you.

Selena said...

Hi Colleen,

Thank you for your kind words. I love the quote you included in your comment.

Being a ChronicBabe is about remembering embracing your inner babe inspite being chronically ill. It's a statement about overcoming and being all you can be. It's a concept espoused by the website ChronicBabe.com.

So saying I'm a ChronicBabe is an empowerment statement for me!

Maybe you're a ChronicBabe too?

:-)

Thanks for your comment! You inspire me to continue blogging with you comments.

Selena