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Author: howilivewithals
When I was diagnosed with ALS at age 28, I lost my teaching career, my plans to travel, and the chance to start a family with my husband. I lost my future. I almost lost hope, but being surrounded by so many people unwilling to let me go, I stepped back from the edge. Now I am determined not to let a day go by without smiling, laughing, and fighting for my life. Follow me to learn about ALS and join the fight to defeat it!
Cathedrals: On Losing My Voice
"In my mind I am eloquent; I can climb intricate scaffolds of words to reach the highest cathedral ceilings and paint my thoughts. But when I open my mouth, everything collapses.” ― Isaac Marion, Warm Bodies
A Wind in the Door
Only two more days until my Tobii Dynavox comes. I cannot wrap my head around this. I'm getting back the ability to text and talk on the phone. I will be able to write emails and blog posts at a more normal pace (right now, my fingers are a total mess, so I type like … Continue reading A Wind in the Door
Bringing Brain Computer Interfaces Home
Technology is the answer until medicine cracks the mystery of ALS. I am thrilled with the Tobii Dyanavox I am getting, and I can't believe even more advanced assistive speech technology is on the horizon. My favorite part of reading this post, though, was discovering that even in the testing phase, outreach efforts are being … Continue reading Bringing Brain Computer Interfaces Home
The Opera and Mosquitoes
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
Wheels
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
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
Coping and Coughing
My new coping mechanism for the Cough Assist exercises seems to be a success. As soon as the mask goes on, I close my eyes, and I let myself sink into the whooshing sound. I pretend I need the mask because I am diving impossibly deep in a cold, dark sea. I won't see much … Continue reading Coping and Coughing
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
Remembering Who I Am
ALS doesn't just a destroy your body; it can also destroy your sense of self-worth. As I need more and more care, it is hard to believe I am not a burden. My sense of value is under constant siege. Fortunately, I have found that kind words often come when I least expect them and … Continue reading Remembering Who I Am
How I Live Now: Life With ALS 