My enunciation is getting rough. The letter "s" is my particular nemesis. I slur and lisp so badly, I have stopped using plural forms, and I avoid contractions. This afternoon, though, my sloppy "s" saved the day. By 4:00, it felt like everything that could go wrong had already happened. A scheduling error left me … Continue reading Wheels
Category: Symptoms
A Pashmina For My Appendix
Today I bought shoes for the first time since my diagnosis. It was also the first time I bought shoes I would not actually wear for walking. My new sandals will just serve as a barrier between the soles of my feet and my wheelchair's foot plates. No more worries about arch support or gaping … Continue reading A Pashmina For My Appendix
Cough Assist
Recently, I got my Cough Assist breathing machine. It will help prevent me from getting pneumonia and exercise my lungs to keep them strong (you know, since I'm not doing yoga and cross training so much lately). It pushes air into my lungs and sucks it out, forcing me to breathe deeply as though running … Continue reading Cough Assist
Welcome to the Helicarrier
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
Don’t Talk-A-Thon: Part 3
"You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet" - Franz Kafka. Those of you … Continue reading Don’t Talk-A-Thon: Part 3
Don’t Talk-A-Thon: Part 2
Hello all! I'm already impressed, touched, and overwhelmed by your stories of how your hour of silence went today. I would LOVE to share your stories of silence; it would be amazingly powerful to have them all in one place. Please consider sharing your experience below. If you are not able to spend an hour … Continue reading Don’t Talk-A-Thon: Part 2
Don’t Talk-A-Thon: Part 1
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
A Seat at the Table
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
Love and Dirty Dishes
It's scary to show people just how sick I am. I let visits go way too long to avoid cutting people off or kicking them out, then end up exhausted with worse speech than ever the entire next day. I feel so guilty cancelling plans; after I do it enough times, I am sure I've … Continue reading Love and Dirty Dishes
Up All Night
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
How I Live Now: Life With ALS 