It has officially been ONE MONTH since I had my surgery to remove my glioma tumor, and what a month it has been! Quite the roller coaster of emotion and physical well being, as I’ve been both elated and devastated as well as been feeling miserable pain to high as a kite on medication to energized and healthy to exhaustion and back in the circle again. And backwards. And upside down; through the hall of mirrors.
But each day is a new day that I’m excited to experience and celebrate.
I had been talking with a family friend (who’s known me since before I was born) about some of my frustrations, as well as some of my ideas about using my experiences to help bring awareness to causes such as brain cancer and young adult cancers in general. I’m honestly not completely sure how this idea came to fruition. But I had been taking photos of myself to use in another art piece that I’m working on and thought this one photo would work here (so I didn’t have to take another one, thank goodness).
I put together this image quickly and then took some time to edit it a bit, move things around, etc, just being a little picky. Basically I wanted to associate a face and personality with the idea of young adult cancer. And I kind of based it off of what you would write for the smallest online dating profile ever – since dating and talking about (and revealing) your cancer is something that is more particular to young adults as opposed to children or older adults with cancer.
But then I thought, “ok, so here it is. Now…… what?”
What do I do with it? Where does it go? I’m not a part of any campaign or group or organization. What good is this?
I thought, “Well, I can post it on instagram, and on twitter. I could even print it out and post it in my coffee shop.” And then I had a strange feeling, as though someone punched me in my stomach. “But then everyone in my coffee shop would know that I have brain cancer. I have to SEE them. EVERY day.”
My body went numb. My heart raced. My breathing got faster. Nope, this was not a seizure, and this had NOTHING to do with my physical symptoms —
For the first time I felt the full body effect of possible stigma.
After my surgery, while I was recovering with a black eye and the fresh eyebrow incision that I’m still recovering from, I went to that coffee shop every morning. I was hopped up on medication. And the shop owner and his employees were well aware of my situation. I go there nearly everyday still, and we chat like family. The owner has even had me explain my situation to his other regulars. And I felt alright talking about it, revealing more than I know some other people are comfortable sharing.
And not only do I feel ok talking about it, I’ve also already posted online all about it. Not only here, but also on twitter. And of course that black eye photo I don’t remember taking that I posted to facebook as well.
So is it that I’m a perfectionist and I’m worried that my photo isn’t perfect? Or that my idea was thrown together and should be changed? Or that the websites I added should be different?
Or is it that I’m worried about the stigma attached to the words “I have BRAIN CANCER” that are so vividly attached to my photo, that is ironically the entire point.
So all of this made me nervous about sharing this photo with, well, anyone. But when I think that I don’t actually know how long I’ll be here living on earth – 5 years, 10 years, 20 years, maybe I’ll end up being 101 years old just like my great-grandma – I know that no matter what, I want to help and connect with others. So I decided to face my fear and share the way I originally intended to. I sent it to my close friends and family with my update email. And then I shared via instagram and twitter.
Given my life experiences – interning with non profits, working with the mentally ill, experiencing my mom’s death from ovarian cancer, having my own experience now with brain cancer – I feel like I have information and experience I can share with other people, and I’m open and always interested to learn from others. And the only way you can really do that is by taking a chance and putting yourself out there. Some people might poke fun or be unreceptive, but you won’t find the amazing people unless you give it a try. So….. I’m trying.