You probably don't know who Sabrina Shannon is, and I never had the pleasure of meeting her. Ten years ago this May, Sabrina was a precocious 10-year old girl who made a documentary for CBC Radio (Canadian Broadcasting) on life with severe allergies, called "Sabrina's Nutty Tale." Despite missing out on some basic pleasures--whether having a pet dog or sharing in the food set out at a Baptism party--Sabrina was clearly whip-smart and creative. In the radio broadcast, she has her friends "interview" her about her allergies.
"Have you ever taken a Lactaid pill?" one friend asks.
"What's that?" Sabrina says.
"It's what helps you when you can eat, like, stuff with milk in it."
"Um...Life isn't like that," Sabrina replies, audibly irked. "You can't do that."
How many times did I have similar conversations with well meaning friends who had heard about lactose intolerance and thought it the same thing as my allergies? Or friends who had heard Cool Whip was the "non-dairy" option (though it contains skim milk) and wanted me to try some, just a little?
Yet despite all the inconveniences of her condition, Sabrina kept her sense of humor. Another friend asks what allergies she'd be willing to keep, if she could lose the other ones. Sabrina replies, "I'd prefer to be allergic to spinach, and broccoli. And cauliflower. And that's about it."
Later in the broadcast, a friend asks what she would do if she had a sleepover with only one other person--someone who knows nothing of handling anaphylaxis--and had a reaction. You can hear, in this question, the friend's own fears; I wonder how many sleepovers Sabrina was invited to?
"Oh, I wouldn't really care because I know all about allergies," Sabrina answers, going on to detail how she would get our her EpiPen, take off the safety cap, "stab it in my thigh, count to seven Mississippis, and phone 911" to report an anaphylactic reaction.
The friend presses the point, asking what would happen if she didn't know how to operate the EpiPen, or if she didn't know the number 911.
"Well, I don't think about those kind of things, 'cause I know I know the number," Sabrina says confidently.
In 2003, Sabrina died after eating french fries in her school cafeteria. She had been responsible as she always was--choosing a "safe" food, making sure the potatoes had not been fried in peanut oil. But she did not realize that the tongs used to serve her fries had also been used to serve poutine, in which the fries are topped with cheese curds and gravy. Soon after lunch she began to wheeze but, believing she had steered clear of any allergens, she mistakenly attributed it to her asthma. She collapsed with cardiac arrest before before the ambulance arrived, and before anyone thought to administer the EpiPen she had left in her locker.
When researching Don't Kill the Birthday Girl: Tales from an Allergic Life, a tip from Maria Acebal at FAAN caused me to order the National Film Board of Canada documentary that introduced me to Sabrina's story. Though I've heard a lot of tragic stories associated with allergic reactions in children, this one stays with me.
She was so ahead of her age. She was trying so hard. You can hear the household's love in the conversation she has with her mother while making Sabrina-safe french toast (er, pancakes) in the kitchen, the careful reinforcement of smart allergy practices. They had all the latest understanding of the issues. She had her medicines, she knew what questions to ask. This time, it just didn't save the day.
So often I venture into the world assuming that because I trust myself, because I "know" my body after 31 years of living with these allergies, I'll be fine. But the truth is I just don't know. There's only so much you can plan for.
Later, the Shannon family crusaded to improve anaphylaxis and cross-contamination allergen awareness in Ontario schools, resulting in "Sabrina's Law." Take a minute and listen to Sabrina's broadcast. In her short time on this earth, she lent us so much light. I wish I could have met her.
I saw a post about her on Facebook today, but did not know her whole story until I read your blog after doing a web search. So very sad. I have an 8 yr old daughter who is allergic to peanuts and tree nuts and I know every day when I drop her off at school that she could possibly not make it home because of her allergies. Her school does a lot to help prevent her from being exposed, but things happen. I'm holding back tears as I type this. I try very hard to teach her how to keep herself safe, but I know the teenage years will be more difficult. I can only do my best and pray for her safety.
ReplyDeleteThanks for leaving a comment, Linda. Her story makes me sad, too--I tear up every time I listen to that radio broadcast, because her voice carries to much hope and energy. But her legacy (thanks to the tireless work of her mom, in particular) has been to help so many have better allergy conditions in their schools.
ReplyDeleteI managed to make it through elementary, middle school, high school and college with over a dozen major food allergies, many life threatening--and this was in an era when even less was known. There is hope! Even when reactions happen, and they will, there is hope. My book tells the stories of how we live, not how we die.
Your daughter has you, and that makes her lucky right there.
Cheers & best wishes,
Sandra