4 When I was diagnosed, I choked on fear beyond any I had ever known. It easily surpassed even the terror I felt when I was raped and almost murdered. At least then there was a chance I could make it out alive. At the moment of diagnosis, blood rushed to my face, making my … Continue reading The Blue Room
Sitting in my dark apartment, I watched the clock eagerly, biting my lip as I waited for 9:30. Because of my feeding and medication schedule, I rarely go out at night, but I was about to make an exception. Three more ticks from my kitchen clock, and I put my wheelchair on high speed, zooming … Continue reading Cloudgazing
When I was sixteen, a fortune teller at a fair predicted I would meet and fall in love with a man who would physically take care of me. At the time, I didn’t understand what she could possibly mean. Would I rely on my husband for money? I was hungry for independence and therefore a … Continue reading Fortune’s Fool
I hate crying - it's an uncontrollable language of pain, and I lack enough control as it is - but I was crying tonight. I've heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, "It's just sadness," then put … Continue reading Leaves in My River, Stars in My Sky
This morning I tried to buy opera tickets as a surprise for Evan (he is a major fan), and all accessible seats were sold out. I know it's not the end of the world, or even cause for tears. Operas are clearly a luxury. Still, incidents like this chip away at my loved ones' assurances … Continue reading The Opera and Mosquitoes
Warning: Excessive Marvel references ahead. This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn't care about plans. Like Loki in … Continue reading Welcome to the Helicarrier
Today is the Don't Talk-A-Thon, a fundraising event in which participants vow an hour of silence in support of those who are forever silenced by ALS. In honor of this special event, I am sharing a very personal and painful story about the first time that ALS stole my voice. Remember, for me and countless … Continue reading Don’t Talk-A-Thon: Part 1
Seeing my mom reminds me I am changing, though slowly relative to most other people with ALS. When she visits, there is always a lot for her to learn: the new way to help me dress, which silverware I can handle, what medicine I take at night. The list goes on. My sister and husband … Continue reading A Seat at the Table
I keep replaying last night in my head. A few hours after going to bed, I started feeling some muscle cramping and spasms. I tried to adjust my position to find comfort, but I could not roll to my side. This is becoming more and more common as the weight of a blanket becomes enough … Continue reading Up All Night
On June 10, 2015, I shared this message with my loved ones… “Dear family and friends: I am so sorry to have to tell to you that today I was diagnosed with ALS. I am sad and scared, but also hopeful that I will live longer than the average ALS patient because mine is a … Continue reading A Brave New World
How I Live Now: Life With ALS 