Robin Williams visited Christopher Reeve in the hospital dressed in a scrub hat and a surgical gown announcing in a Russian accent that he was a proctologist who was going to perform a rectal exam on Reeve. In his memoir, Reeve wrote, “For the first time since the accident, I laughed. My old friend helped me know that somehow I was going ok be okay.”
The irony that Superman had become paralyzed and the most loved comedic nanny, genie, doctor, professor, and my personal favorite: Peter Pan, died by suicide is a level of irony beyond my comprehension.
Also now on my list of Irony Beyond My Comprehension is that one of my favorite Robin Williams movie quotes comes from Patch Adams when he says, “You treat a disease, you win, you lose. You treat a person, I guarantee you, you'll win, no matter what the outcome.”
Far Out magazine said, “Dr. Hunter ‘Patch’ Adams is a name that has become synonymous with unconventional and compassionate healthcare.”
Bangarang! (Insert mind-blown emoji) There’s a lot to unpack here. And I promise we’ll get there, but first I needed to understand what paralysis actually meant and what the conventional route was.
I was a 9-year-old at the time of Reeve’s accident, so my understanding of a spinal cord injury was surface level: he was in a wheelchair. To my 9-year-old self being paralyzed meant you couldn’t walk. It turned out to my ignorant 35-year-old self, being paralyzed still only meant you couldn’t walk.
All I knew about Christopher Reeve was that he fell off a horse and was in a wheelchair. I just thought he couldn’t move his legs.
By Friday night, Cody’s poor lips were swollen and chapped. He had not eaten so much as a crumb, nor had he sipped water in five days. They told us a Speech Language Pathologist would be coming to give him a swallow test.
Added to my ignorance: SLPs do more than help kids annunciate.
She came in with a Styrofoam cup of ice chips and a plastic spoon. First, she asked him to cough. He inhaled first as one does when coughing, and the only thing audible that came out of his mouth was as if a whisper and a cough had a baby.
I was confused by the sound and wondered why he didn’t cough like she had asked him to. It would turn out to be slow, but this was the first time the pieces started coming together for me.
It felt like my lungs were really weak. I wasn’t surprised by it though because I had already been laying in bed not able to move, so it was like oh, this is just another thing about my injury. I have to be careful laying in bed just breathing, and when I can eat and drink again, I have to be careful doing that, too.
She dipped the plastic spoon in the cup and scooped out a few ice chips. The look on his face was like the cartoon character who ends up stuck in a desert and sees a mirage of water. She explained he was a high risk for aspiration, and she needed to see how he handled the ice chips before he was cleared to drink water.
“What is aspiration?” I asked her.
She explained that because of his paralysis he was unable to swallow, so if he took in too much liquid, it could back up into his lungs causing him to choke.
She gave us a packet of thickener to mix into his water and said he was able to take a few small sips a day. I opened the packet, dumped it into his cup and mixed it up. It was lumpy like a Jell-O recipe gone wrong.
The packet came out of a box where the ingredients were listed, but they were not listed on the individual packet. The stuff is trash, and I would’ve struggled deeply with that being the first thing he consumed in five days. His mouth was so dry though, and we were so happy to have graduated to thickened water that it wasn’t on my mind.
They let me drink that jelly water, and I was DRINKING it. It didn’t taste like anything, and I was just happy to have water. They told me they would come back in a couple of days and do the test again. I was bummed I couldn’t eat, but I just thought, “Okay, in a couple of days, my lungs will get stronger…and they did!”
The concept was foggy still, but this is when I realized paralysis (in his case) meant a whole lot more than not walking.
I would go back-and-forth in the beginning not knowing to say if he was paralyzed from the shoulders down or the chest down. This is one of the best charts I’ve seen that shows spinal cord injury levels.
Cody is a C6 meaning everything below the C6 level was injured. You can see in this graphic that his biceps and wrists were spared. It appears his thumbs were also spared, but that was not the case unfortunately. He lost his triceps, hands and everything else below his shoulders and had only a dull sensation or ability to feel temperature below his nipple line.
But everything in the thoracic area? Where all of our organs live? That was all paralyzed. His ability to swallow and therefore eat or drink, his ability to cough, use the bathroom and basically every regular bodily function was compromised.
I can confidently explain spinal cord injury levels now, and based on this chart, you can easily answer where anyone would be paralyzed if I told you they were a C2, a T4 or an L1.
But as they say, ignorance is bliss, and I was still in denial. It’s not that I couldn’t visibly see or that I didn’t understand that he had no movement in his upper body, but for whatever the reason, it was only about walking again.
And while I always believed he would walk again, what I didn’t yet know was the long list of other things that came with having a C6 spinal cord injury, what the conventional route is, what the unconventional route is, that I would become a nanny overnight, that we would meet a genie, doctor and professor all rolled into one, and that when Wendy said, “Your adventures are over.” Peter Pan responded with my other favorite Robin Williams movie quote, “Oh, no. To live…to live would be an awfully big adventure.”
I've seen your short videos. Both of you are inspiring! Cody, I'm sorry you were injured so severely, but you both have persevered and others have benefited from your positive attitude and hard work. No one asks for the difficulties encountered in life, but you both are living proof of what can be accomplished by approaching difficulties with positive attitudes and hard work. One day at a time. Continue to stay strong and know you are helping others. Thank you!