I have a big mouth. I wasn't always this way. Somewhere along the line, though, I learned to talk back, something I'm especially good at when sticking up for loved ones. Even though I'm in a wheelchair and my voice is fading, I just had to say something when a man catcalled my sister Laura … Continue reading Loud Mouth
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!
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
Someone to Watch Over Me
Our dog Malka has always been a mama's girl, but my illness has made her much more attentive. Lately, she can even preempt when and where I am about to roll, and if I hit the "help button" on my power chair, she sprints to my side. I was about to accept her new ESP … Continue reading Someone to Watch Over Me
The Kingdom of Childhood
For some reason, this lovely spring weather makes me remember all the things I love about teaching: morning meeting and yoga, book club and literature circles, zumba and dance breaks every half hour to keep our energy flowing, writing workshops, and of course, just being with the kids. Listening when recess ended in tears, geeking … Continue reading The Kingdom of Childhood
Reality Check
"Honey, whether or not you accept help doesn't change the fact that you need it." I received this great advice from a nurse as I struggled to accept all the new braces I need to keep my feet flat enough to bear weight. As I try to maintain my independence, I know her words … Continue reading Reality Check
A Brave New World
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 