There is this really odd thing that has happened a bunch of times recently. I have had a number of people who, after hearing that my daughter has epilepsy, have told me–at moments lectured me–about their experience with their dog’s struggle with seizures (and occasionally other health issues).
At first I was confused. Then I got mad–like really, really mad. Then it made me concerned about this apparent epidemic of epileptic dogs. But finally it made me realize there is something here that needs to be written about…some fundamental confusion about disability and, more particularly, life with disabled children.
So permit me to get one thing straight: Comparing the my daughter’s experiences–which have been painful, life-threatening, and debilitating–to something experienced by a dog (no matter how beloved or special the dog) is extremely insulting to me.
I am familiar with the love a person can feel toward a pet that is more than a “pet,” but a friend, a member of the family. I get that people can love their animals very deeply, and I have no doubt that watching any creature experience a seizure is horrible. I am also willing to embrace the idea that the comparison comes from an attempt at empathy–however misguided that attempt might be.
But, that is about where it ends for me.
There is a bunch to be said here about what is at the heart of someone trying to empathize with a situation that is unusual and counter to what most people expect to experience in life. There is a confusion about the time and the place for empathy–and the time for sympathy. If I met someone who was battling cancer I would choose to not share my brush with cancer story…it was super frightening for me when it happened. And there is a time and a place to discuss those feeling–but talking to someone who is living the thing I was a afraid of would not be that time. My experience doesn’t offer anything to the person who is at the center of the difficult situation.
There is a time when trying to empathize turns the story into something other than what it is actually about. It makes the story about how I didn’t get cancer, which is, frankly, not what it is about. This is how empathy can, at times, be so very crass and insensitive–diminishing something that is truly incomprehensible even to the people involved–into something digestible.
This can be true of so many experiences in life that have the one-two punch of being incredibly difficult and unfamiliar to others. People want to understand, at least most of them do, but their attempts to empathize (and, often, demand your empathy in return) can wind up making you feel more and more isolated. If one thing is clear at the end of such an exchange it is that they have absolutely no idea what you are experiencing–and that they were so concerned with telling you that they do that they missed an opportunity to learn more about it.
So, since I have a captive audience, let me to explain clearly what Esmé having epilepsy means for our life as a family. First of all, epilepsy threatens Esmé’s life. She’s had thousands of seizures in her life…and a seizure could take her life in a number of ways–sudden death, pneumonia from aspirating during a seizure, or by slowly stealing away her abilities, her personality, to name a few. For Esmé, as is the case for a number of people with epilepsy, she doesn’t only have seizures. She deals with developmental delays, severe health challenges that threaten multiple systems, drug-reactions, and whatever else might be waiting as she grows. At almost four years old she is completely reliant on caregivers for all of her needs–including the virtually telepathic experience of communicating with her. She could not be cared for for even an hour by the majority of people she knows–let alone someone she doesn’t know. She is completely vulnerable.
She has around 20 different doctors in two states. She has experienced cardiac and respiratory arrest and chest compressions. Most parents can relate to the idea of waking up irrationally afraid their child isn’t breathing…for years this was a totally rational daily fear in our home. Considering her breathing challenges, history of aspiration, low tone, and seizures, it would not have been shocking for this to have actually happened.
When you plan to have a child there is typically an expectation that they will grow up, outlive you, and become independent people who lead meaningful lives…the alternative is, I would wager, universally accepted as a tragedy. For a lot of her life we have been unable to focus on anything other than Esmé being alive. Now that she has stabilized we can start to offer some movement toward independence…but we also recognize that what an “independent” life looks like for Esmé will be drastically different than is “typical.” We don’t worry about where she’ll attend college, or if she’ll marry someone we like, or have a fulfilling career. We hope for independent mobility, independent communication, independent toileting…all while not wanting to let go because we understand that as an individual with a disability she will have an astronomically higher risk for being mistreated, assaulted, or otherwise harmed.
I remain uncertain about what terrifies me more–outliving Esmé or not outliving her.
That’s the truth.
And I think this gets me to the part that I find to be the most insidious aspect of the drawing of a parallel between my daughter’s epilepsy and a dog experiencing a seizure: it is the suggestion that my daughter is somehow less than, that somehow her disability ranks her at a status that is not dissimilar to a pet…a cheerful mascot, rather than a full person whose life and safety is as valuable as any other person.
It is a reminder that I cannot trust others to see her, to stand up for her.
Sadly this is at the core of the additional risks associated with her potential independence–a misunderstanding of disability and a devaluing of the lives of those with disabilities.
Last week I mentioned the dog/seizure parallel experience to friends on Facebook after it happened earlier last week during a phone conversation. Unbelievably, a few days later I found myself in the same situation again, this time in person…I was shocked by the bizarre coincidence and unable to find the words to respond. I’m still not certain how I could have or should have responded to the situation as an opportunity to educate.
All I’ve got so far is: “Wow, maybe your vet can call our world-class epileptologists and make some drug recommendations?”
At the rate this keeps happening, maybe I can have some cards printed…