Over the course of the last couple of years, I have met a few PALS who are mothers with small children. These women amaze me with their powerful will to live, to see their babies grow, to ensure their precious lives are as full of Mom as is humanly possible. Some have passed, others continue to be here, fighting, making a difference.
One of these women is Sarah Coglianese. She is one of these incredible women, filled with a passion to live for her daughter, for as long as she can be here. She wrote an entry in her blog, Speed4Sarah, the other day and it touched me so much I have to share it with you all here. These are her words; they speak for themselves.
Wednesday: We went to the emergency room because every time I coughed, I ended up choking and it was freaking me out. I couldn’t seem to get the cough out, only push it back where it came from and make myself feel even worse. It was a little like early labor in childbirth; I ignored it for as long as I could until it was clearly time to seek professional help.
Rob was on a work retreat, so my sister drove me to the ER, with Scarlett in the backseat running a constant commentary, and driving me nuts. I was concentrating so hard on breathing. When we got to the hospital, I went ahead, while Liz handed Scarlett off to her Uncle Rob. The ER was half-full when I rolled in, with one person ahead of me at the window. I felt awful. I knew I had to cough, but the prospect had become terrifying, like filling my throat with glue and then trying to breathe around it.
A Dr. walked into the room. “Mrs Copeland?” he said, looking around. I caught his eye and made the universal sign for choking. “Mrs. Copeland?” he said again, this time to me. I shook my head, indicating that I was having an emergency. “Oh,” he said, and walked away. “You’re okay.”
When Liz walked in, she dealt with a ridiculous check-in process, all the while trying to contain her anger as she kept repeating my sister has ALS and she can’t breathe.
They let us in and took my vitals, but they didn’t seem to know what to do with someone like me. We waited. I did all the breathing exercises I’ve ever learned, so substandard when your lungs and diaphragm are operating at diminished capacity. I tried to meditate, again feeling like I was going through the pain of childbirth, except this time hoping the “baby” would come shooting out of my mouth on one hot exhale.
I was in a lot of distress by that time, and I knew I just needed the strength to cough. Any ALS clinic knows what a cough assist machine is, but an ER does not, and given my heart rate and the grand choking displays I was performing, they decided to intubate me, meaning stick a vent down my throat. First they cut off my dress and bra, and I had a moment of sorrow, having just announced that morning that it was my favorite dress. But the truth is I badly wanted to be unconscious. Cut off my dress, I thought. Cut out one of my stubborn, hardened lungs while you’re at it.
When I woke up, it was too soon. I could hear people talking next to my bed, still right there in the ER. I tried to open my eyes and move my hands, but everything was paralyzed. I had no way of letting them know I was awake. I eventually succeeded in widening my eyes enough to get my sister’s attention.
“If her eyes are moving, is she awake?” I heard her ask. The answer: No, she’s definitely under. I worked harder until my eyes were open and blinking, and that’s when an ER doctor walked in and said, “Why is she wide awake? Let’s get her some more meds.” Then the bliss of nothing, once again.
Later in the ICU when Liz and I were recounting that story, and sort of laughing, our nurse overheard and was horrified. She sent a note to the ER team, and the next day the ER doctor came to my room to apologize. “That must have been horrible,” he said. Honestly, I told him, it wasn’t even close to the worst thing that happened. Getting extubated, when they have to lower your sedation for a long time, and do breathing tests to make sure you can handle breathing on your own, all while a hard plastic tube is dangling down your throat. Having a respiratory therapist stick a suction so painfully far down your nose that you think she might pop back up with your ovaries. Being afraid to cough. Getting pneumonia because your body can’t fend for itself. Those were the things that traumatized me. I didn’t say any of that to the doc, just thanked him for his concern.
When an ER doctor comes into the ICU, the nurses get all fluttery, and this one was tall, dark, and I suppose he had a hint of mcdreamy. But I only had eyes for one visitor, and she was on her way from preschool.
“Does my hair look okay?” I asked my wonderful nurse Charlotte, like it mattered.
“I can show you in a mirror,” she offered. I shuddered and declined. I didn’t want things to get that real.
Through a curtain and one glass wall, I had a neighbor named Walter. Though we never met, I could hear people talking loudly to Walter, about his feeding tube, about coughing, about how his day was going. Walter coughed pretty loudly, and he was at his finest, just hacking away, when Scarlett entered the ICU with Liz. But Scarlett seemed unfazed by everything, and was just eager to show me the balloon she bought at the gift shop.
“It’s for both of us,” she explained, holding it very tightly, “But I need to take it home with me.”
She thought the masks and gloves were the coolest things ever, and she climbed into bed with me just briefly before finding other exciting things to explore. She pressed her nose to the glass to look out into the hall.
“Walter’s goin’ on a walk!” she bellowed. Her indoor voice frequently experiences technical difficulty.
“Leave Walter alone!” I hissed.
She was in full entertainment mode, singing, dancing, and collecting as many rubber gloves as she could before it was time for her to head back to my sister’s for her third sleepover in a row. I could see her bouncing down the hall, blond ponytail and leopard-print headband. I lost sight of her after Walter’s room, and that’s when I started to cry.
After my last extended hospital stay, I left with a baby. This time I was leaving with a mass inside my right lung, a pneumonia. Scarlett’s entry into the world was all fingers and toes, perfection, first breaths, and natural feeding. Now I was looking around a room, full of devices to keep me alive, the place where amazing nurses were caring for my failing body every hour, and my wonderful husband had chopsticked sushi rolls directly into my mouth (which required the oversight of a nurse, lest I start choking on yellowtail and avocado.)
Same hospital, same hallways, same rooms, same dressing gowns. Except now, 5 years later, instead of delivering my baby, I’m fighting to live for her.
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