Day 1. I wake up in the worst possible way. I'm feverish, my oxygen has plummeted to 83, and part of my left lung has collapsed and is filling with fluid. Someone calls 911, but everything is a blur, and I just want to sleep. I don't care if I live or die. I actually … Continue reading Health Update Part 1 / 3: A Series of Unfortunate Events

I am on a ventilator, and I love it! However, I need 24 / 7 care for the rest of my life to prevent blocked lungs that could lead to a coma. If I ever taught your children in my life before ALS, and you were happy with the work I did ; if you … Continue reading Friends of Rachel

I told you that a long absence means a decline in my health. Read on for the most important health update I have ever posted over the years. When I heard the news that my pulmonologist wants me to go on a ventilator, I thought, "I'm not ready. I need more time free of a … Continue reading Winding Down

Evan, Evan, Evan! 2. The family, friends, and dogs who support me as I face the monster inside of me3. Every day without spasms 4. Every hour without pain5. My caregivers - they are remarkable women 6. The fact that ALS will never take my mind 7. Writing 8. Books 9. I will never lose … Continue reading My Gratitude List

it's Saturday night. I have been asleep for hours. My husband Evan is hard at work, though. He is sorting 25 medications into a multi-tiered organizer. He handles each of the 270 pills, placing them gently in the correct box, all to keep the failing machine that is my body going. He makes food move … Continue reading Kissing Teeth

I only just catch myself before I say something wrong. It's such a close call sometimes, my heart races and my stomach flip flops for minutes afterwards. Here are two examples: First, during a visit with my mom, we were listening to music when this beautiful song came on. It was so feminine, so pretty, … Continue reading Things I almost say

I cry as if someone is dying because someone is, in fact, dying. It's me. I am dying. Evan holds my hand, reminding me to breathe, which is good advice because now I can't get enough air. I would clench my hands into fists of desperation, except all but the middle finger on my right … Continue reading Part 2: Remembering

Lately I've been waking up in the morning with the feeling something is seriously wrong. No, that's inaccurate. I KNOW in my gut something awful has happened and I. Am. Terrified. I can't tell if it's a horrifying nightmare, or that something is wrong with the bipap (breathing machine) or the tobii eye gaze computer, … Continue reading Part 1: Forgetting

As you may have gleaned from the title, I wet the bed. I felt the urge to go. Now. So I hit my alarm to let Evan know there was an emergency, but it was too late. I was peeing. This disease leaves you nothing. The smell and my tears let Evan know what was … Continue reading In Which I Wet the Bed

2 It's hard to live in the present when the past feels as close as my shadow. I can't stop thinking about the things I have lost. I'm nearly immobile, so the things I miss most are physical. I miss my feet touching the ground. I miss the luxury of scrubbing my scalp with shampoo … Continue reading Stepping Out of the Past to Appreciate the Present