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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I cannot leave you after reading your post without saying something, thought I really do not know what to say. I always dream with opening your blog to discover that you are fine and ALS is out of the picture…
I’m so sorry you had to go through all of that, that must have been so scary. Hugs and prayers
So grateful you are OK. The story us harrowing but you are one tough gal. But then I guess you already knew that. aLS requires tough in a way few professional athletes will even understand. God bless you and your family
So sorry to hear you had to go through all of this. My whole family wishes you brighter days!! We’ll continue to pray and think good thoughts for you!
Holy Shit Sarah…. I’m traumatized for you!
Thank you so much for sharing Sarah, I know it wasn’t easy to endure or easy to share. Lots of love from Louisville…. always.Xo
I’ve been following you for a while now (since I was diagnosed with ALS) — and I’m sending you lots of good vibes. Stay strong.
So heartbreaking, I went through all of this with my sister…….it is so hard of others for whom no little of the beast that ALS is. My thoughts and prayers are for you.
Know…oops
So sorry to hear this sweetie. We’re all thinking of you and sending prayers and love! UJ
Sarah, it’s been a long time since we were really close, but I just wanted to let you know how much I love you and how often I am thinking of you. I hope you are feeling better, and that Scarlett is letting you have a turn with your balloon.
I just laughed out loud, Helen. I love you.
Hello Sarah,
I am so relieved you are out of the hospital after such an ordeal. Stay well, i send my love to you and Scarlett.
Hi Sarah,
There were so many times I wanted to stick a needle in someone’s eye, tie their hands down so they couldn’t pull it out, and calmly say, “look here, we are not dealing with an ear infection. When you realize that, I will pull the needle out of your eye.”
I know, kinda mean and not really something that would help the situation, but it made me feel better!
ALS is, well, there just aren’t any swear words invented for how I really feel about it, but let’s go with f*cked. I hate that you are living with it, and that you have to fight so hard. Sending you lots of love, a big hug, and virtual needles. xoxo
isn’t it amazing the love we have for our children and their unconditional love for us and that in any moment they can walk in with total innocence and a “balloon” and provide a respite through a hug or a smile. All the best a be sure to get your daily dose of hugs, they work wonders.
Sarah, your humor continues to shine through the trauma that is ALS. God bless you and your beautiful extended family. Your stories about your kids are heartwarming and so full of love. You are in my thoughts and prayers….sending love and hugs your way!
This is how I feel, too. I wish we could each come in, divide up your suffering and carry it away with us. I am praying for you.
Sarah,
My heart is breaking… To battle ALS and then battle to make sure the right things are being done for you. You are blessed with a wonderful family. You are in my prayers…. Every single day.
Sarah,
I filled up with tears and burst out laughing in the span of your dozen paragraphs– the (mad) tears for what you had to bear and the laughter for this line that captures the joyful spunk of your divine little girl: “‘It’s for both of us,” [Scarlett] explained, holding it very tightly, “But I need to take it home with me.’” I wish so much that we didn’t live on opposite coasts, or that I could beam myself to your doorstep to see you and Rob and Scarlett. Since neither of those is very realistic, I will settle for telling you that we love you guys dearly, and look forward to talking, video chatting, emailing with you soon. Biggest hugs– Donna
Sarah, keep fighting. Praying for you and your family.
Sarah – I have been following your posts and praying for you daily. You have such wonderful spirit and such a gift with words. I truly feel like I am living in your moment and with your emotions. My father was diagnosed with ALS in Spring of 2009 at the age of 69. He just celebrated his 75th birthday and is still living life to the fullest just like you are. I admire you so much and how you express your frustration but still enjoy everything life has to offer – concerts, dinners out, volunteering at your daughter’s school. I think attitude is a lot of the battle and you have such a great one!!! Thank you for sharing your life and I will continue to pray for you and your precious family!!! Jacki
Sarah, I think of you all the time – and want you to know how amazing you are. I am honestly speechless and want to send you love and more. You are such a fighter and impress me in your courage and strength. In abbraccio per sempre, carissima.
Sarah
How we look forward to your posts. You so cleverly mix the realities of this disease with a twist of humor. You continue to inspire us and Jason our son living with ALS who shares your attitude. Just love you Sarah.
Sarah, I am so sorry that you had to go through such an ordeal. So much of it was all too familiar. Thank you for being so open AND articulate. Talk to you soon!
Oh Sarah~ I’m so terribly sorry for all that you’re going through. Thank G-d for your wonderful & supportive family. They are truly a blessing. I’m sending you so much love & positive vibes from Elcio, Dahlia, & me.
Hi Sarah! Hope you are feeling better. Sending you a huge hug of strength!
I can’t imagine how horrible that must have been for you SC. Sending you big hugs from Kate, Lily, Gaby and myself… hug, hug, hug, hug!
I really never truly imagined how strong one must be to live with the effects from this horrible disease. And just fighting to live through a blasted cough!!! This scares me for my mom. No pneumonia yet but I know it is inevitable. Prayers for you and your family.
Amy
Amy, I don’t think it’s inevitable. If I had had a cough assist, I think I could have stayed healthier. Push for that for your mom if her cough starts to get weak. Big hugs.