DiversifYA: Veronica Bartles, part one
|April 17, 2014||Posted by Marieke under Disability and Illness, DiversifYA|
Today, I’m delighted to introduce Veronica Bartles for the first of two interviews she’ll be doing for us. Veronica was one of my fellow MG mentors during last year’s PitchWars, and both during contests and outside of them, she’s one of the kindest, most supportive people you’ll ever meet.
Veronica’s YA debut TWELVE STEPS, a story about sisters, sibling rivalry, and finding your own place in the world, was released last month from Swoon Romance. Find Veronica on Twitter, or read her blog here!
1. How do you identify yourself?
I’m a lot of different things. I’m a writer, a mother, a daughter, a recycle-knitter, a friend, a cook, a singer, a dancer … and though I don’t talk about it much, I also happen to have a brain tumor.
2. What is having a brain tumor like?
Well, I can only speak for my particular brain tumor. Because the brain is super-complex, and the location of a brain tumor makes a world of difference in the type of issues and problems it will cause. When I was going through radiation treatments, right after they discovered the tumor, I got to know the other patients who were also at the Cancer Center each day for radiation. None of us had the exact same symptoms, because even though we all had brain tumors, the tumors were in different parts of the brain. Some had issues with speech, others had gaps in their short- or long-term memories, and others had vision or movement issues. I got a lovely mish-mash of all the different symptoms rolled into one.
My particular tumor isn’t a fast-growing, malignant type. In fact, the lead doctor in charge of my radiation treatments once explained that mine is “as benign as a brain tumor can be.” If it was located in any other part of the body, they’d probably ignore it entirely, and I could lead a normal life, mostly uninterrupted with irritating tumor symptoms. Unfortunately, my tumor is located in the brain stem, so its mere existence causes all kinds of weird and annoying problems. This is also why it took so many years to diagnose. (It doesn’t act like a “normal” tumor, targeting one part of the brain.) Every signal from your brain passes through the brain stem, so a tumor there can interfere with every single system in the body. And I never know what to expect. I might stub my toe and get severe pain in my elbow. Or try to say “I love you” and instead I repeat the word “hi” over and over again (yeah, my family still teases me about that one). I sometimes even, literally, forget to breathe. (That tired cliché found so often in many of my favorite YA books, “she let out the breath she didn’t know she was holding,” seriously bugs me. I’ve never yet met anyone else who doesn’t notice when they stop breathing! Can we all just agree to let that cliché go?) But I’ve lived with these odd symptoms for as long as I can remember, so it’s all kind of normal for me. I often don’t even realize, until someone comments on the oddity of things I take for granted, that not everyone experiences life the way I do.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
One of the biggest challenges is that, when people hear about my tumor, they tend to treat me like a fragile porcelain doll, incapable of doing anything for myself. I remember when my third child was seven months old (about five months after the doctors discovered my tumor), I was visiting my family in southern California for Christmas, and we all went for a walk on the beach. I was strolling along beside the water with my daughter, enjoying the sand and the sound of the waves crashing on the shore, when suddenly my mom screamed, “Who let Veronica hold the baby?!?” Someone quickly snatched my daughter out of my arms, and despite my protests that I was totally capable of carrying her, I wasn’t allowed near my baby again for the rest of the day. Because we were WALKING, and didn’t I know that it was DANGEROUS? What if I lost my balance and fell? Never mind the fact that the doctors had determined that I’d had the tumor for years before it was discovered, and I had already successfully managed to cart around two children without killing them.
Ironically, the second big challenge is the exact opposite. Because a brain tumor isn’t a disability that you can easily see and identify, People sometimes think I’m just a major hypochondriac. Every time we move (my husband is in the military, so we move every few years), I have to fight with a new set of doctors to convince them that I actually have a medical issue that needs attention. Even with a medical file four inches thick, they are always convinced that there has to be some other explanation for my odd symptoms. It takes months to get established with new specialists, because the primary care doctors always want to treat me for depression and vitamin deficiencies, and run their own tests, before they’ll admit that I do, in fact, have a brain tumor.
The biggest perk of my brain tumor kind of disguises itself as a challenge. I can’t be around angry people. Yelling, high-pitched noises and any kind of contention or negativity (including gossip and complaining) hits some kind of trigger in my brain, and my body will start shutting down. I can’t raise my voice without running the risk of a full blackout. And I can’t be around people who are fighting either. I’ll admit, it’s super-frustrating sometimes. Especially since my kids have grown up with the subconscious knowledge that Mom shuts down if they throw a temper tantrum. (They’re getting better as they mature, but they all went through a phase where, if I told them “no,” they’d simply yell and scream until my body fully shut down, and then they’d go right ahead and do whatever they wanted to do in the first place, knowing I couldn’t do a thing to stop them.) But overall, my quirk has been a positive thing. I’ve learned to control my naturally-hot temper, people are always marveling about how well-behaved and “calm” my children are, and I’ve developed a reputation as a peacemaker, often jumping in to help people work out their differences before tensions run too high. And it’s not just external. My own negative thoughts are literally paralyzing. So I’ve developed a habit of looking for the good in people. And if someone hurts me, instead of dwelling on the hurt and anger, I’ll often invent a backstory for them, to explain to myself how they probably meant well and it just came out wrong. (I sometimes frustrate my friends, who call me to vent and let off steam, by putting a Pollyanna spin on everything, but it’s a defense mechanism I can’t function without.) If I can’t fix the issue, or change the subject, I’ll simply walk away. It makes life so much more pleasant when you’re not surrounded by negativity!
It’s also a great “get out of jail free card.” If I forget something important, or if I want to get out of something, I can always say, “oh, I really wanted to do that, but I have this brain tumor…” (Just kidding. I would never do such a thing. Really. Not ever.)
4. What do you wish people knew about having a brain tumor?
Not all brain tumors are created equal. In fact, there are many, many different types of tumors, each with its own set of challenges and issues. The American Brain Tumor Association (http://www.abta.org/) is an amazing resource for anyone who wants to know more about the different types of brain tumors. They offer support and resources for both the brain tumor patient and the friends and family who care for them. (I’m so glad someone told me about them when I first got my diagnosis!)
5. What are the biggest clichés/stereotypes you’ve seen?
Most people seem to think that brain tumor = death sentence. They act like a brain tumor diagnosis means a person has only weeks to live. Yes, that sometimes happens. But not always. My tumor was first discovered in June of 2002. Now, nearly twelve years later, I’m still plugging away at life. The only difference is that now I know why I have so many odd quirks. And unexplained symptoms become so much less scary when you have a reason why they’re happening, even if you can’t really do anything to stop them.
BONUS: What is your advice for writers writing diverse characters?
Remember that we’re all people first, and labels last. Every single person in the world has at least one something that makes them unique and different. And we all have plenty of things in common. Don’t be afraid to embrace the differences that make a person unique (we don’t all have to be the same to be united), but don’t put so much focus on the differences that you lose sight of the person behind the label. Once upon a time, I used to hide the fact that I had a brain tumor from everyone. I quickly learned that it wasn’t feasible, because I spent way too much time making excuses for my odd behaviors, like falling down for no reason, or suddenly losing the ability to speak coherently. But I would have kept it a secret from everyone forever if I could, because I was so tired of the pitying looks, the overprotective coddling, and the way no one even knew my name. I was just “the lady with the brain tumor.” In fact, one of my closest friends won my heart when someone introduced me as “this is the lady with the brain tumor. She’s new here,” and Anikai responded not with an overly-sympathetic smile, but with the exclamation, “Oh! My mom died from a brain tumor!” She was so embarrassed that she’d let that morbid tidbit slip out in our first conversation, but I was nothing but relieved. She wasn’t looking at me as some vague entity with a tumor, but as someone who could understand a part of her that she mostly kept hidden away from the world. And I knew that she could understand that part of me as well. Look for those moments of connection. And don’t be afraid to let a little bit of awkwardness seep into the conversations.