Everything Changes - The Guide to Young Adult Cancer

By Jackie B-F

“What’s that scar on your neck?” I wasn’t even 20-minutes into the first day of orientation for my Master’s program and my scar had already been noticed. I have been debating the whole summer about how to disclose my cancer at my new school. I am proud of my diagnosis and I am happy to talk about my experiences with cancer, but I didn’t want cancer to be my first introduction to students and faculty. I’ve thought about some ways I can disclose my cancer at school:

I can choose to only tell some of truth. When asked about my scar at orientation, I was caught off guard and told the student about my cancer diagnosis. However, there are other ways to disclose my medical conditions that don’t involve the “C-word.” I could have said, “I had surgery” and left the conversation at that.

A wardrobe change might also be in order. I’ve accumulated a lot of cancer shirts and bracelets since being diagnosed, and I wear them proudly! However, I’ve chosen to set them aside for at least the first few weeks of school. That way I can disclose my diagnosis in a more organic way and not because my shirt says so.

I may not want to disclose to everyone at school, but letting my professors know can be very helpful. If I end up missing a lot of class, they deserve to know why, and some professors may be willing to help me catch up during their office hours. Professors are often supportive and can be a good advocate. I’ll probably let my professors know within the first few weeks of classes.

Ultimately, I have to do what feels right for me, and remember that I was accepted into school for my smarts – not my cancer.

We are asked to disclose our cancer in a variety of settings. How do you choose who to tell and who not to tell? Have you ever had to make up excuses on the spot to cover up your cancer?

To learn more about disclosure at school, your legal rights, and how the office of student disabilities can help you, read the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

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?