Ironically enough, given the public display of my inner most thoughts on this blog, I don’t wear my disease on my sleeve. I don’t walk up to people and say, “Hi, my name is Karyn and I have brain cancer.” I don’t have t-shirts that say “Ask me about my cancer!” or “My cancer is rarer than your cancer!” I don’t have a grey ribbon tattooed on my body. If people know and ask questions, I’ll happily answer them…clearly I have no issues talking about my experience. I’ll often point them to this blog, but I’m not exactly handing out cards to everyone I meet with the address and a snappy catch phrase like, “Everydayleft.com: My Cancer Adventures and My Hope for Semblance of Normalcy for As Long As Possible.” Ok, that’s not very snappy, but you get my point.
Since I went into ‘hermit mode’ for many months, I can honestly say I don’t know EVERYONE who was told about my Brain Surprise. I wasn’t in charge of telling them and there was a lot of time and memory lapses between my first seizure and when I was back in the routine of day-to-day life. There are people who I used to see almost daily that are in the dark. All they know is that last year in October, I disappeared for a while and my mom showed up to drop off and pick up my kids and help in the classroom on occasion. Then I showed up again – wearing a hat, moving a little slower, 25 pounds lighter. Then I’d disappear again from time to time. Some people stopped talking to me, or if they talked to me it was brief and usually about the weather. In my mind, they’re thinking I’m some crazy bitch who’s clearly got a drug problem or had a nervous breakdown. And honestly, they’re not far off – I take a handful of drugs daily and one of them keeps me from having a nervous breakdown. But in reality, most of those people are more likely trying to mind their own business or are fellow introverts.
There are those occasional awkward moments where I’ve assumed someone was told directly or through the grapevine and I get an odd look when I mention visits to Stanford, chemo, seizures, memory or something else related to my brain. I realize I have to give a brief summary of my situation and then I try to move on to topics that aren’t about my cancer. I could talk for days about the nuances of drug side effects or waking up confused in an ambulance or what it feels like to have your skull opened up with a drill and saw, but it can ruin the mood of a perfectly good conversation.
The tricky thing is meeting new people – do you come right out and say ‘So you know, I had a brain tumor removed in October. I just finished my last round of chemo unless it comes back. Essentially, I have brain cancer and am fighting a daily battle to keep it locked away. Would you like a glass of wine?’ Or do you pretend your life is pretty normal and you haven’t got all this other stuff going on in the background?
One of my fellow brain tumor survivors has just started college and is blogging about her experience. It’s probably therapeutic for her, but it will also be a good resource for other teens who start college after brain surgery or learning to live with a tumor. For those of us lucky to have no truly visible signs of brain injury (because that’s essentially what a large mass in your head, surgery, and treatment create – brain injury), it can be a challenge to explain why you start struggling to find words after a long night, why you record lectures instead of writing all of your notes down in class, why you’re napping while everyone else is getting ready for a party. Catherine’s blog (and her advocacy for brain tumor awareness) is eloquent and informative. She highlights the challenge of having an invisible illness and deciding who to tell which information, all while striving to have a ‘normal’ college experience.
Some people who find out you have brain cancer, have/had a tumor, and may have a seizure at some point really don’t know what to do with that information. It scares them (and if it scares them, imagine how we felt when WE found out). It can change the way they see you. It can change the conversations you have. It can change the relationship they may have had with you if they hadn’t found out. It can leave them in awe (according to them) of how you handle it all. We all handle it the best way we can – and honestly, even with all we’ve been through and continue to deal with daily, we’re just happy to be here, to have the chance to be a mom, a friend, a college student and so much more. To have the opportunity to make new friends, fall in love, have new experiences or do the things we loved doing before we entered the surreal world of brain tumors. Honestly, we’re just happy to be alive.
Navigating awareness: Balancing the need to be ‘normal’ and keeping people you meet informed. Just another day in the adventures of brain cancer.