DiversifYA: Sarah Glenn Marsh
|October 5, 2015||Posted by DiversifYA under Disability and Illness, DiversifYA||
Today, we’re kicking it off with one of my wonderful fellow Sweet Sixteeners: Sarah Glenn Marsh writes young adult novels and children’s picture books. An avid fantasy reader from the day her dad handed her a copy of The Hobbit and promised it would change her life, she’s been making up words and worlds ever since. She lives in Virginia with her husband and four rescued greyhounds. When she’s not writing, she’s most often engaged in pursuits of the nerd variety, from video games to tabletop adventures and dungeon crawls. Her work is represented by Christa Heschke of McIntosh and Otis, and her debut YA historical fantasy, FEAR THE DROWNING DEEP, debuts from Sky Pony in September of 2016. Visit her online at www.sarahglennmarsh.com, and say hi to her on Twitter here.
1. How do you identify yourself?
I’ll start with the first words that sprang to mind: as an author.
I’m an adoring wife and rescue dog mom, a lover of all things nerdy, and a painter. I’m of French, English, Irish, and Scandinavian heritage, and as someone who’s very interested in genealogy, all of those places and people are important to me.
I smile a ton. I’m a friend. An animal advocate. A feminist.
…and I also have an autoimmune disease called type 1 diabetes.
2. What did it feel like growing up with type 1 diabetes?
I wasn’t diagnosed until age 19. However, my younger sister was diagnosed at age 5, so I’d grown up around type 1 (previously known as juvenile diabetes).
Unfortunately, I also knew that life would now involve one of my greatest fears: needles. A type 1 diabetic’s pancreas doesn’t produce any insulin. This means that each time I eat a meal, and even in-between meals, I need insulin to keep my blood sugar from rising to dangerous levels.
I was lucky in a way, because I didn’t have to deal with 6+ shots a day for long. My parents were quick to help me get an insulin pump, which is basically an artificial pancreas (it looks a lot like a cell phone!). The insulin pump is attached to me through a tiny piece of bendable plastic inserted into my stomach. I have to change out this plastic every three days, which involves—you guessed it—a big freaking needle.
Honestly, overcoming my fear of needles is an ongoing process even eight years post-diagnosis; my hands still shake and my mouth gets dry each time I use them.
Going through college with type 1 diabetes also felt isolating at times, as people tend to associate food with good times, and I suddenly associated it with pain and counting carbohydrates to know how much insulin I’d need. Many people I’ve interacted with outside my family aren’t familiar with type 1, which has led to misconceptions that embarrassed me. Also, I didn’t feel much like going to meals with friends anymore: At first, it meant having to run to the bathroom to take an injection. And after I got my insulin pump, it meant having to pull the phone-like device out of the garter I wear it in and explain that no, I’m not rudely texting. I’m taking medicine so I can enjoy this meal like anyone else.
Plus, knowing how many people share my dislike of blood and/or my fear of needles, I worried that I might make someone uncomfortable by doing things that are necessary for my survival, like checking my blood sugar or taking insulin in public.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
Challenge #1: It’s exhausting. Type 1 diabetes never takes a vacation. I have to monitor my blood sugar every day, multiple times a day to maintain control. (Note: that this is just my experience. Some type 1 diabetics, like my sister, don’t have to check their sugar as often because they’re more capable of feeling when their sugar is trending too high or low).
Challenge #2: The awkwardness of being attached to the insulin pump. Especially when it came to sexytimes with my now-husband, as having to be careful of the insulin pump’s easily tangled plastic tubing was (and still is) far from hot. Also, getting that tubing caught on doorknobs? Not good. Not good.
Challenge #3: Eating! I try to eat a diet that’s low in carbohydrates so I won’t have to take as much insulin at mealtimes. (Though I still enjoy the occasional doughnut like the next girl, I can’t eat nearly as much of anything sweet as I’d prefer!).
Challenge #4: The pain and uncertainty. High and low blood sugars don’t happen with much predictability, at least not for me. A low blood sugar makes me shaky, and forces me to sit down and eat something. High blood sugar gives me headaches and bad moods. One or both of these things happens at least once in a given day for me. Both highs and lows can trigger anxiety, too.
A perk: Living with type 1 has helped me to eat healthier. All my meals are portioned, as I have to count carbs, and I don’t consume a lot of sugar, which for me means no weight gain! And because being a type 1 means extra doctor visits, I’d like to think it makes me pay closer attention to my health overall.
Another slight perk: Regularly facing my fear of needles made me realize I’m capable of handling other difficult and uncomfortable situations as well.
4. What do you wish people knew about living with type 1 diabetes?
-That just because I don’t look sick doesn’t mean I’m not. High and low blood sugars have many unpleasant symptoms, but to an observer, I appear ‘fine’ even while my disease is waging war with me.
-That how type 1 affects the body varies by person, so my experience is unique to me. And this can make it an isolating disease (even if you have a cool sibling who also wears an insulin pump!).
-Type 1 diabetes is an autoimmune disease, so as with many autoimmune conditions, I’m more prone to catching anything contagious and I take longer to heal from injuries.
5. What are the biggest clichés/stereotypes you’ve seen?
Often times, people assume I got diabetes by eating too much sugar or gaining weight. To clarify: no matter how much weight I lose, this disease will never go away. Type 1 is caused by a virus, or so researchers think, that causes the body to attack its own immune system and shut down the pancreas. Type 1 diabetics make up a very small portion of the total diabetics in America, which leads to confusion between type 1 and type 2, which is far more common. Only about 1.25 million Americans have type 1, while some 27 million have type 2.
Another stereotype I’ve come across is people assuming I’ll die early. I’ve actually been told things like, “Oh, my grandma had diabetes. She died!” Modern medicine is awesome, and I may well live just as long as the lovely people reading this post! Please, please, please don’t share your horror stories about diabetes from years before medical advancements. I know you’re just trying to relate, but it does more harm than good.
BONUS: What is your advice for writers writing diverse characters?
Many people I admire have already given great advice on this subject, so I’ll be brief:
Remember, it’s so important for readers to see themselves reflected in the fiction they enjoy. I wish that, back when I was diagnosed, I’d have come across even a minor book character with type 1 so I could have felt less alone, acknowledged.
And of course, in addition to research, be sure you talk to people who actually embody the diversity you’re trying to portray on the page!