Category Archives: Vanity

Three Nights

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. Read More>

|Categories: Doctors, Drugs, Life, Meditation, Parenting, Progression, Vanity | Tags: , , , , , | Permalink

Bad Behavior

Rob and I had an interesting interaction on Friday morning. It was a total ALS moment, where the frustration overtakes everything else and you realize that what is happening is real, and that you’re out there, traveling with no road map. It’s the definition of ALS: Good luck, keep driving.

Rob had returned from a trip to New York the night before. Our time without him had gone fine, thanks to help from my sister and my two assistants. On Friday morning, we were trying to get back into our routine. I couldn’t help but think about how simple it must have been for Rob that week. Getting himself—and only himself—ready to walk out the door. The luxury.

Some time ago, I decided to wear what is basically a uniform of maxi dresses, and I had recently purchased some new ones. So that morning, we tried on a new dress. Yep, I use the word “we” with zero irony here. It’s a group effort. Rob pulled the dress over my head. He adjusted the straps, kicked my footrest up and lifted me to allow the billowing material to fall towards the floor. “What do you think?” he asked. Read More>

|Categories: Life, Relationships, Vanity, Venting | Tags: , , | Permalink

Fake Conversations

From time to time, I allow myself to engage in imaginary conversations with people I see on the street. These conversations have no basis in reality, but they arise from an experience I have pretty regularly.

Scarlett and I wheel past a mom, carrying a baby or walking alongside a small kid, and she smiles warmly at us, but in that brief moment, I imagine all the things she might be thinking. Most likely, I tell myself, she is feeling a mixture of pity, curiosity, and uncertainty as to how one can possibly perform the functions of motherhood from the confines of a wheelchair.

I admit, I am—so far—not a mind reader. Maybe that other mom is just thinking about what to make for dinner. But there is something in those discreetly inquisitive eyes that lets me know she thinks the job is hard enough without the added layer of a disability. And if that is what she’s thinking, she definitely has a point. Read More>

|Categories: Life, Vanity, Venting | Tags: , , | Permalink