Cancer Diary: When the Room Doesn't Respond
Emergencies don’t always come with flashing lights. Sometimes, they come with silence.
My son—45, living with CHARGE Syndrome—was eating in a booth at Fosters Freeze when he began choking. He stopped talking and sat perfectly still, rigid. A super example of hyperactivity, he does not know to sit still; this was not normal. Then, his body turned rubbery. His skin changed color. His eyes locked and rolled back. He wasn’t breathing.
We were the only customers. I asked twice—please call 911. No one moved.
And so, I stopped speaking. I stopped asking. I did what decades of caring for him trained me to do. I tried to save him.
He was wedged into the booth. I couldn’t lift him out—I couldn’t fully lift him at all. I managed to pull him partway out, enough to get his head hanging down over the bench. I hit his back, again and again, and waited for breath to return. It took minutes. I’m not sure how many—time doesn’t tick normally when your child is blue.
Eventually, his lungs began to work again.
At the ER, they confirmed a major event. His breathing was still affected hours later. They called it dyspnea. I called it terrifying.
But the terror wasn’t just in his body. It was in the room—the room that did not respond. That did not call. That did not move. That remained quiet. Support was absent.
I submitted a formal complaint to Fosters Freeze headquarters. I don’t expect restitution. I expect awareness. Training. Change.
Because when a caregiver calls for help in an emergency, silence should never be the response.
Maybe I should have expected a non-response in 2025. Something happened in this country during covid. Rooms where anyone would have jumped up to respond--I know, I have 45 years of experience with meeting emergencies and until covid being washed in help. Not so, now. After Carl's recent experience with cancer, perhaps I have been naive not to realize that these days I am alone, not because Carl has passed, but because people, in general, seem unwilling to help, to get involved.
The "room" was silent with Carl through the 5 months he struggled with Cancer of Unknown Primary. Home health care (in the beginning) showed up only weekly and wanted basically to talk to us, to look and assess, to tell us things we already knew about what Carl could do, and recommend, without demonstration or involvement, actions that I knew Carl would not take. He had not been physically active in health; he was not going to be physically active in illness. It was not help; it was information we already knew, that provided no more than a few minutes (20-30 I believe) of face time on one afternoon a week to deliver information that we could have -- and regularly did -- read, and included no physical help at all or suggestions for how to ease my burden.
Later, as more physical assistance became desperately needed, both Carl and I asked social services at the hospital for help, any kind of help, physical help, assistance with tasks, information of the type that Carl's Cancer Compendium now contains, anything to deal with this increasing burden. The hospital social services department promised again and again and again. But no help came our way. Near the end, we started cleaning out Carl's office in the hope of finding some live-in help (work in exchange for a place to stay), but it was the end of Covid and folks were fearful of other folks. And, in the end, Carl died before we found anyone.
Three weeks before he died, Carl ended up in the ER again. The hospital sent him to a subacute center, which was not much easier on me because it was far away and required daily trips while I was also trying to take care of two disabled adult children, one living independently and one living with me. Let me reiterate: it was Covid; no one wanted to help (not in a home new to them).
After ten days, the center sent Carl home on hospice. Alas, we ended up with the hospice from hell; they were so slow to act that it took five days (and state intervention) to get Carl his meds and hospital-style bed. Five days later he died.
We had switched to a better hospice three days before he died. The nurse had time to respond only twice--once to bleeding and then to confirm Carl's death.
As with the brief incident with my son, the room, for Carl, throughout his ordeal with cancer, was unresponsive.
For other Cancer Diary posts, click HERE.
Blog editor's note: As a memorial to Carl Leaver, MSI Press graphic arts director and designer, who died of Cancer of Unknown Primary August 16, 2021, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog carries an informative, cancer-related story -- and is open to guest posts: Cancer Diary.
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