calvin, epilepsy, civil rights, and seizures on day seven

Yesterday, I got caught in another deluge riding my bike to the junior high school to participate in Civil Rights Day. I’d been invited to talk with groups of sixth, seventh and eighth graders about Calvin and about epilepsy, about disability and civil rights. The kids, gathered around tables in small clusters, sat quietly attentive as they watched a photo presentation I’d prepared on my laptop. In it, I’d arranged photos of Calvin on good days, Calvin in the NICU on the day he was born, Calvin having a seizure, Calvin in the hospital, Calvin drugged up and feeling awful, and a smattering of photos of the drugs themselves, the special diets, the blood draws, the EEGs, more drugs and some beautiful green cannabis tincture I’d made to treat his disorder.

Some of the sixth graders knew Calvin. One girl piped that she’d been in art class with Calvin last year at the grade school. Their questions were thoughtful and diverse. They asked if Calvin had any siblings, wondered about his favorite foods and what he likes to do. They wondered, since he cannot speak, if Calvin makes any sounds, which made me chuckle because, as I explained, Calvin is one of the most vocal kids I know, cooing and chirping and screeching and howling and laughing and giggling. One child asked if Calvin would have epilepsy for the rest of his life. I answered, "I hope not but I think probably so."

A dark-haired boy near the front of one class asked several excellent questions. He wanted to know if it was difficult for us to go places, wondered if we went on vacations. I told him, yes, it was very difficult and that we didn’t really go on many vacations because Calvin has a special bed that he can't fall out of and it’s hard to pack up all of his foods and medicines and find a place that is close to a hospital and someone who can help us take care of him so that we can actually enjoy the vacation. I told him that we can’t take Calvin on an airplane because of his cannabis, since medical marijuana is illegal at the federal level. I went on to talk about the long list of drug side effects and the fact that the drugs impede his development and affect his well-being as much if not more than the seizures themselves. Then I told them about the cannabis and how, even though it is helping my son, the government insists on barring its legality, insists it is as addictive and dangerous as heroine and has no medicinal value. I told them that this wasn't true, explaining that the government has a patent on one of the plant's cannabinoids precisely for its medicinal value, a plant that has been used medicinally for thousands of years.

A cute brunette sitting behind me asked insightfully and politely, “Does having Calvin make you sad because he can’t do things?”

I paused for a moment before answering, then took a deep breath and told her it was hard and sad. I mentioned that Michael teaches photography at the college and that we both went to college and had hoped that our boy would have that choice, too. I told her that Michael and I had both been athletes, that I had been an NCAA swimmer, and that when I see the college boys playing sports it often makes me sad.

But then I went on to say what a rich life we have as a result of Calvin, and that even though he can’t do most things, he is loving and sweet and, because of him, we’ve met some amazing people we wouldn’t have met otherwise. I made sure the girl understood that I wouldn’t wish for Calvin to have to suffer nor for us to endure such hardship, and that, though I don’t believe things happen for a reason, I believe we have the power to find some good in things that are not so good, and so that is what I try to do.

A child in one of the classes asked if caring for Calvin is hard. Another asked, “Are you going to take care of Calvin forever?”

I told him that I wasn’t sure and that my husband doesn’t think I’d let anyone else do it. I went on to explain that if Calvin didn’t have epilepsy, and if I didn’t have to worry about someone else giving him the right amount of the right medicine at the right time I might feel more comfortable giving up the responsibility of his care when he is older, as long as he lived nearby, perhaps just down the street.

At the end of each of the classes, I explained how epilepsy relates to civil rights. I described epilepsy’s stigma, its history of witch hunts and burnings at the stake, its sequestration and incarceration, its assumed contagion and culpability, its false grounds for discrimination, public mocking and bullying. I underscored that not all people with epilepsy are like Calvin, that many appear perfectly healthy and “normal” and can accomplish a great deal, like DaVinci and Michelangelo and Emily Dickinson and Teddy Roosevelt and Van Gogh and Charles Dickens and Edgar Allen Poe and Lewis Carroll, all of whom the students knew of.

Next, I underscored the importance of advocating, for ourselves, for those we love and for others who need advocates from different camps. Lastly, I told them that Calvin is the best person I know because he hasn’t a mean bone in his body, and encouraged them to be kind to others who might look different, act different, sound different, come from a different country, live in a different kind of house, wear different clothes or have different colored skin, because inside we all have the same heart.

The rest of the day at home under dismal skies I spent reflecting on the children’s bright eyes and on the watchful faces of their teachers, and I hoped they'd help the world become a better place.

This morning, I awoke to Calvin’s curdling scream. I call it his seizure cry. I had a feeling it was coming, even though it is only day seven. I gave him 10 mg of homemade THC rescue medicine and the seizure stopped fairly quickly.

Yes, it is hard taking care of Calvin, of powerlessly watching him seize, and it’s even harder knowing it might be forever.

The video below taken three years ago, though important, may be difficult for some to watch. You can also watch it on You Tube here.