Words fail me

I’m a bit of an early bird and that Sunday was kind of busy for me, I had spent the day announcing a cyclocross race in Delaware Park and jumped in one of the races myself, so by later in the evening I had one eye on the pillow. At this point in life, a phone call late in the evening isn’t going to be good news, and this one wasn’t. Months later, I made a FOIL request to the Amherst police department and secured body camera video to complete the story of that evening. Watching the video, I could see my sister, unsteady on her feet and somewhat unresponsive as the officer asked her questions and tried to quiz the neighbor who called me earlier in the evening. The officer wanted to know her name and what was wrong with her. He kept asking the neighbor what he thought was wrong. The neighbor became increasingly irate and told the officer she was having a medical emergency and how was he supposed to know what was wrong with her. Which was a valid question. At that moment, I saw her on the video presenting as she generally did in life, a tie dyed shirt and pants with a big floppy hat. She looks like someone you might not take seriously, an oddball. The officer apparently agreed with this thesis and was slow walking the ambulance call, trying to apply his non-knowledge of medicine to the situation. When the paramedics finally arrived, the officer told them to “take her to ECMC” in this dismissive way that still sticks in my mind. Implicit in his instruction was the fact that ECMC has the largest Psychiatric emergency center in the area and his non-knowledge indicated she was having a mental health issue. It was disquieting to watch the video much later with the realization that her brain was bleeding at that moment and a large part of the left rear area of her brain was dying due to lack of blood. While the officer dithered on the front steps. Because someone was dressed like a goofball. In a free country.

I have always been around words and language. I have read national newspapers since the Reagan revolution pretty much every morning. I read good books and like to write a little bit. I spent much of my professional life using words to make a living and help support my family. As my kids got older, we spent time learning to speak to adults, developing the words to get things done, writing letters, editing papers, all that. Words project our social class, education, our confidence, the degree to which we belong. We don’t mean to, but we size people up by how they use words, how they dress, and how they carry themselves in the world. They are the ticket to being human in many ways. Those words mean so much.

And so, the words were gone. The loss of part of the brain led to a condition called aphasia, a kind of broadly defined inability to communicate through words, through speaking, or reading, or writing. The first couple of weeks my sister was an inpatient at Buffalo General and my son and I would make the trip and hang out with her every day. It was a confusing condition, she was not able to speak much beyond a few phrases, was not able to track visually, and had some gross motor impairment. We made a word wall in the room with pictures of family and names of familiar things. We found that she remembered music that she enjoyed  so we incorporated that into the time. She seemed to be able to get out of bed and walk so we did a lot of roaming around, but still the language was pretty well gone. One thing I did was pick up the NY Times at the gift shop and spend some time reading stories every day. One day, I tried doing a guided reading like I did with my kids, I ran my finger along the text and read slowly, and was surprised that Elizabeth was able to read along, even on complicated words like Angela Merkel, she did fine. So, her vernacular and vocabulary was still intact, but she was unable to form the words independently or write much of anything. She seemed to be able to read and after her discharge she lived with us and would sit for hours reading. But she still couldn’t really say much of anything useful. Such a strange condition.

And then I was a caregiver one day. I had been thinking about retiring anyway, so it was an easy step. And sitting there in the doctor's offices for the endless appointments, and the therapy sessions and aphasia group meetings, I came to realize that I was part of a big group of people who gave rides, and helped with paperwork, and taught loved ones how to use the scanner at the supermarket, and generally served as the safety net. My sister did not have a strong social network and I was the last living person she could depend on. I was working to secure services as a backup, but the wheels were turning slowly. Staring up at the ceiling one night I asked myself who would provide care if I died. So, I may as well get up since it’s already 4:00 am.

I saw three examples this last year of people in the news with aphasia. Joni Mitchell did a set at Newport with Brandi Carlile including a beautiful rendition of Circle Game after her brain aneurysm. I suspect there were not too many dry eyes in that audience and she has expressed interest in Joni’s Jam II this spring. Randy Travis did his song Forever and Ever after suffering a stroke 4 months back. And John Fetterman has returned to public life following his stroke a few months back. In each case, I think we feel this hope in seeing someone we knew before a stroke returning to language, by no means perfect, but better. We know in our hearts the person they were once, and we forgive them of their present troubles.

But then, how do people react to a stranger who can’t speak very well? How do I react as a person? For many people, the assumption is that a lack of language is stupidity, a lack of humanity. In much the same way that some adults ignore a child and direct questions to a parent, I noticed Elizabeth sometimes cut out of conversations. People would often speak loudly and slowly. Sometimes people would simply display a kind of inpatient disgust. What a frustrating experience that must be, to be unmoored from the things that make us human. For the people who get it and were able to have the patience to make a connection, what a blessing. I put myself in those shoes and wonder who I would be without my words. I can’t imagine

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And speaking of words, I’m left to land this plane. I had hoped that a through line would emerge and allow me to tie the story up neatly. I guess I have some closure, a year later. My sister died in early spring after a second stroke. I still think about parts of the whole experience often, I still need to do something with that box of ashes and I’m processing stuff a little, truth be told. I got a good taste of being a caregiver and serving as a safety net and it wasn’t always pretty. I have resources and time and a spouse that provides, but even with many advantages it can be lonely, frustrating, isolating. The safety net for the most vulnerable Americans is utter rubbish. We thump our chest and call ourselves a Christian nation, but the resources we bring to bear on ensuring the well being of our people are meager at best. And even then, we moan about the costs and begrudge people we see as getting something for nothing. Because it will never be us. Never us who can’t talk to the bus driver. Never us who can’t remember the ATM code. Never us who can’t operate the telephone to order a meal. And it will never be us in the vinyl chair of the medical office, or sitting on hold for an hour, or writing the same crap on one paper form after another. Never us. And perhaps there is that through line finally. The thing that defines us as a great nation, our capacity to care for the least of us, for the broken, and the dirty, and those who will take more from their time on earth than they will contribute. How do we live our values as Americans? That’s the tough one, it’s not in our nature to lean in to people who are a bit off, or it’s not in mine at least. And maybe that’s where we need some guidance, perhaps people find it through service, or attending church, or caring for someone isn’t always going to say thank you. For me, I wake up a lot of days and wonder if this life came with an instruction book in the box that I somehow missed. But we put another brick in the wall and try to leave the place cleaner than when we got here.