Everything Changes - The Guide to Young Adult Cancer

Last week I started cleaning out my cancer closet.  This week I’m continuing the job.  In my filing cabinet, I discovered a list I made called 32 Ways To Spend My Time.  I wrote it while living in limbo-land after my first treatment.  I was well enough to get out of the house most days.  But I didn’t have enough reliable physical energy to start finding a job, get off disability, and tackle a normal work week.  I felt lazy, cabin fever stir-crazy, unproductive, and anxious to have a life again.  So I created a list of productive (and inexpensive) ways to spend my time.  My list included:

Update my address book * Visit my great uncle * Learn geography * Listen to new kinds of music * Find new and unusual museums to visit * Stretch * Reduce and donate my belongings * Do drop-in volunteer work * Find a dog that needs to be walked * Make thank you collages for people who had helped me out.

To other 28-year-olds, this list must have seemed elementary.  To me it was monumental and gave me purpose.  Many of the tasks on the list I could do even on days when I wasn’t feeling well.

When I interviewed young adult cancer patients for my book Everything Changes, the most frequent comment I heard was that life after treatment was the toughest part of the cancer experience.  After treatment is often the first time many of us have to stop and think about all that has just happened to us.  It was important for me to pay attention to these feelings, but I didn’t want to do it 24/7.  This list helped give me some focus and direction.  No matter how simple or how trivial the tasks, I needed to have a life outside of my sick bed.  How ironic that one of the items on my list was “Get a tape recorder, interview people, and make a project out of it.”

What was life like for you after a prolonged period of illness or treatment?  Did you find satisfying ways to spend your time?  Were you financially or physically limited by what you were able to do?  How did you handle it?

I got a tape recorder, interviewed people and made a project out of it called Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Check it out.

I’m under the weather today.  Trying to get comfy in bed with a fever on a hot summer day.  Trying to peel myself away from my computer and my workaholic tendencies.  Trying to take catnaps while reading Unaccustomed Earth – Jhumpa Lahiri’s most recent collection of short stories.  Wondering on days like today why I don’t have a TV.  I’d love some Law and Order right about now.

I can hear kids playing in a fountain in the park next to my apartment building.  As a kid, I grew up next to a private elementary school.  When I was home sick, I remember hearing the school kids playing during recess.  I always thought “Ha, I have the day off of school and youuuu doooon’t!”  Maybe I will try to adopt that attitude today.  I’ll think of all my friends slaving away at work while I get to chill in bed reading fiction instead.

If I spent the afternoon working, I’d complete an interview and put some hours into promoting my upcoming book reading.  So instead, I’m going to crank out a little blog post about it and call it a day.

Am I the only one?  Do you guys ever have a hard time prying yourself away from work when you don’t feel well?  Are you addicted to feeling productive?  I’m damn lucky that I am self-employed and can manage my own schedule.  Have you had to work during your illness because you didn’t have sick days or disability leave?

Find out more about Mary Ann and other young adults who decided to collect disability during and after treatment - Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I’m a geek. Just the word ‘library’ kind of turns me on. So imagine how enticing it was when I was recently asked to choreograph a site specific dance performance set in what was the circulation desk for the old main branch of the Chicago Public Library. And here’s the kicker…. It is for a festival where all of the work focuses on disabilities.

So the question is do I have a disability if I have cancer?

I think most people with visible physical limitations are immediately categorized as having a disability. (And some of us cancer patients do have scars, amputation, baldness as a visual cue of our disease.) But what about chemo brain, or needing someone to take notes for you because you have neuropathy, or missing work or class for radiation treatments, or having to take frequent bathroom breaks? Do these limitations make us disabled?

Cancer legal advocates fought hard to get cancer and even our long term side effects included in the 2008 addendum to the Americans with Disabilities Act. Wahoo! I say forget the stigma of the label ‘disability’ or if you wanna be politically correct then go for ‘different abilities.’  Young adult cancer survivors spend a lot of time with broken hearts, financial mayhem, and employment barriers because of the ways our bodies live differently with chronic disease.  I’m damn glad when our hardships are recognized, given some rights, and a little bit of performance space.

Do you think cancer is a disability? How do you feel being called ‘disabled’ -does this label help or hinder? If you don’t have cancer, have you ever considered it a disability in others?  The model in the pic has a heart disease that caused the deformation of her arm.  So if she had no arm and cancer, does that change the story?  If she had an arm and cancer does that no longer make her disabled?