I love documentaries. At night, to wind down, I’m either watching a documentary, or, in full disclosure, if my brain has thought too many thinks that day, I’ll be watching reruns of Greek or some other brainless, cheesy ABC Family show. A couple of nights ago I was watching the documentary Gleason. It’s a documentary that follows the life of former NFL Player Steve Gleason and his battle with ALS. For those of you who somehow dodged the ALS Ice Bucket Challenge a few years back, ALS “is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord”, according to the ALS Association. This disease causes paralysis and atrophy of the muscles. Essentially, all the muscles in one’s body progressively stop working. Most people with ALS experience this atrophying over 2-5 years, resulting in an 80% fatality rate by 5 years post diagnosis.
Yes, this wasn’t the most uplifting of documentaries to be watching, but here I was. Watching as the Gleason family documented how this awful illness affects them.
One scene in particular stuck out to me. Gleason was speaking into the camera. He’d been confined to a wheelchair for quite a while and his speech was progressively becoming more and more slurred. He acknowledged, at that moment, that he would soon lose his ability to speak. To quote him, “I’m having a bad day. I’m an asshole to people, and I don’t care. I can’t talk. I think the last of my talking days are here . . . I want to punch something, but I can’t! The only thing I can do is scream!”
And one of the true horrors of this illness hit me hard. People who battle this disease slowly lose their physical abilities, but their cognitive abilities generally remain intact. I was overcome with sorrow for all the men and women who are trapped inside bodies that don’t work. Brains that have so much to communicate, but bodies that are betraying them. I could appreciate and have empathy for his frustration, his anger, his moments of sorrow and moments of rage. I cannot imagine how lonely and frustrating it must be to have so much to say and not be able to say it or be heard.
And in that moment, the compassion for my daughter and other 2E kiddos like her, grew. Please understand, I am not saying 2E and ALS are the same thing. We do not live with death looming over us (though, honestly, I believe we all should live our lives with the ever-present knowledge that our time is finite). But, my daughter and others like her do live with bright brains, desperate to communicate, and their bodies fail them. My daughter does love complex problems and learning the mechanics of everything, but her dyspraxia and sensory wiring limits her. It interferes.
No wonder she melts down when we can’t understand what she’s trying to communicate. It’s so clear in her brain, but she can’t get it out.
No wonder she has moments of sorrow and moments of rage. How very frustrating to know what you want to do and not be able to make it happen. To live with this day in and day out.
And to be visibly seen as “typical” by those around you. To have ordinary expectations placed upon you because you look ordinary. To have your extraordinary thoughts and creativity and humor completely missed because your other wiring hides it. To have your challenges and disabilities completely missed because your bright brain obscures it. How overly frustrating. It makes me want to meltdown just thinking about it.
So, the next time my daughter screams at me because I’m not understanding her, I will remember ALS. I will remember Steve Gleason looking into the camera, tears of rage, but eyes filled with so many thoughts, and his words, “All I can do is scream!”
This post is part of the Gifted Homeschoolers Forum April Blog Hop: Gifted and Twice-Exceptional: Revisiting 2E Issues. Be sure to check out the other perspectives on all things 2e!