The boy in the back raised his hand and asked, “You said Calvin stops breathing during his seizures; can people die from epilepsy?” Soberly, I answered, “Yes,” and described how during prolonged seizures the body can shut down, the heart and lungs can stop working. I made sure to explain that there are rescue medications for these situations, but chose not to underscore that sometimes they don’t work.
“Do people with epilepsy die earlier than other people?” another fifth grader asked. I did my best to explain the definition of the term mortality rate and added that those with epilepsy have a mortality rate three times higher than the general population. Then I talked about epilepsy's history of stigma, of its misconceptions of being demonic possession, of being contagious, of being the fault of the person who had it. I mentioned how people with epilepsy used to be put in prisons and institutions, and that as recently as the 1970s people with epilepsy couldn't get married and were not allowed to have children (forced sterilization). I noted what appeared to me as surprise, not only from the children but from their teacher, who sat to the side behind a desk.
For thirty minutes the children peppered me with questions and comments about Calvin and epilepsy:
I told them that some people do grow out of their epilepsy and that in 70% of the cases the cause is unknown. I mentioned that epilepsy can be the result of genetics, traumatic brain injury, stroke or viruses like meningitis, and I underscored the problem with the drugs and their side effects. They asked if there was a cure. I said, “No,” and pointed out how the girl sitting in the front had helped raise money for Calvin and for epilepsy research at a carnival two summers ago.
That was yesterday.
Today I visited a third grade class and was happy to see a friend’s son along with several other children from Calvin’s past classes.
“How many of you know Calvin?” I began, and the show of little hands surprised me. “How many of you are his friend?” About half of those with raised hands kept them up. Two little boys sitting in front reminisced about my visit to their class last year and went on to tell the other students a bit about Calvin. Another former classmate of Calvin’s reminded me of the time she and her mother visited us bringing fresh berries for Calvin. One girl asked me if, in the event Calvin stopped having seizures, he might learn to talk. I said that I didn’t know for sure, but that I didn’t think so, and went on to explain the flattening of the learning curve as we age. They told stories about other disabled children they know, of ones who can’t talk or walk but can do sign language or use a computer to communicate.
When the questions dwindled I ended by saying how Calvin is the best person that I know, that he hasn’t a mean bone in his body, that he tries hard at everything he does and is a hero for persevering in the face of significant struggles with his health. I told them that they can be an example to the other kids in the school—even to the fourth and fifth graders—by treating Calvin with respect and by being his friend. Then the children came up to say thank you. Some of them reached in for hugs. A few gave me knuckle bumps. Others walked away shyly. I felt good, felt—as in similar class discussions—that I’d done something right, that perhaps I’d inspire these kids to treat others who are different from them with kindness and respect, reminding them, as I always do, that inside we all have the same heart.
“Do people with epilepsy die earlier than other people?” another fifth grader asked. I did my best to explain the definition of the term mortality rate and added that those with epilepsy have a mortality rate three times higher than the general population. Then I talked about epilepsy's history of stigma, of its misconceptions of being demonic possession, of being contagious, of being the fault of the person who had it. I mentioned how people with epilepsy used to be put in prisons and institutions, and that as recently as the 1970s people with epilepsy couldn't get married and were not allowed to have children (forced sterilization). I noted what appeared to me as surprise, not only from the children but from their teacher, who sat to the side behind a desk.
For thirty minutes the children peppered me with questions and comments about Calvin and epilepsy:
Can Calvin say any words?
Will he grow out of his epilepsy?
How do you get epilepsy?
I think my dog had seizures.
I stare off into space sometimes; is that epilepsy?
My grandfather's hands shake; does he have epilepsy?
I told them that some people do grow out of their epilepsy and that in 70% of the cases the cause is unknown. I mentioned that epilepsy can be the result of genetics, traumatic brain injury, stroke or viruses like meningitis, and I underscored the problem with the drugs and their side effects. They asked if there was a cure. I said, “No,” and pointed out how the girl sitting in the front had helped raise money for Calvin and for epilepsy research at a carnival two summers ago.
That was yesterday.
Today I visited a third grade class and was happy to see a friend’s son along with several other children from Calvin’s past classes.
“How many of you know Calvin?” I began, and the show of little hands surprised me. “How many of you are his friend?” About half of those with raised hands kept them up. Two little boys sitting in front reminisced about my visit to their class last year and went on to tell the other students a bit about Calvin. Another former classmate of Calvin’s reminded me of the time she and her mother visited us bringing fresh berries for Calvin. One girl asked me if, in the event Calvin stopped having seizures, he might learn to talk. I said that I didn’t know for sure, but that I didn’t think so, and went on to explain the flattening of the learning curve as we age. They told stories about other disabled children they know, of ones who can’t talk or walk but can do sign language or use a computer to communicate.
When the questions dwindled I ended by saying how Calvin is the best person that I know, that he hasn’t a mean bone in his body, that he tries hard at everything he does and is a hero for persevering in the face of significant struggles with his health. I told them that they can be an example to the other kids in the school—even to the fourth and fifth graders—by treating Calvin with respect and by being his friend. Then the children came up to say thank you. Some of them reached in for hugs. A few gave me knuckle bumps. Others walked away shyly. I felt good, felt—as in similar class discussions—that I’d done something right, that perhaps I’d inspire these kids to treat others who are different from them with kindness and respect, reminding them, as I always do, that inside we all have the same heart.
 |
| Calvin, two years ago, with his wonderful one-on-one, Mary |
What a wonderful gift you gave those kids. What a wonderful gift to Calvin. Keep it up Mom, you are awesome.
ReplyDeleteChristy, you do so many amazing, inspiring things, but I'm always especially struck when you write about class visits. It can't be easy to sit up in front of a class and be subjected to the blunt honesty and curiosity of young people. I distinctly remember cringing when a 3rd grader I was leading on a beach field trip ask with no hesitation, 'Why are your teeth so big?' That's such a meaningless thing, but it still made me squirm with discomfort. To have such a frank, open discussion about epilepsy - such an awful, terrifying force in your life - with young children has to be at times as excruciating as their hugs are heartwarming. And yet you do it, like you do everything, for Calvin and for a better world. Thank you for sharing with these kids and reminding them of the importance of compassion, empathy, kindness, respect. They are lucky to have you come in, and the rest of us are lucky that there are kids growing up with this wisdom.
ReplyDeleteHugs,
Aspen