"People ask me often what it's like to live with ALS. It's a brave question because the answers are not very pleasant. But its also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person's world and allows us to understand what they're feeling and how they're hurting..."
Those are wise thoughts from Bo Stern who, in her own words, is "a mom, writer, speaker, pastor and world-class procrastinator." She was also wife, partner and tireless caregiver for husband Scott, who died of ALS in 2015.
If there are 30,000 people in the United States currently within the grip of ALS, then there are 30,000 stories about what that captivity feels like. What they tell you about living with A:S is the outcome of highly individual recipes for coping. For some determination is the main ingredient. For another anger may season and overpower the final product. For yet another, faith is the additive that matters most. Gratitude. Patience. Peace. Will power. Prayer. Creativity. Perspective. Humor. Support. Fear. And so many more.
Each patient adds or subtracts, sprinkles or pours in response to how quickly or how tightly ALLS squeezes. Every story is different but each on is real, precious and important. Because each is the story of someone's life.
Patrick has used heaping measures of motivation to help him cope with ALS: A DJ, Internet personality and filmmaker, Patrick was 30 when he was diagnosed. In response, he committed himself to sharing his story in a remarkable award-winning documentary.
I wake up almost every morning having dreamed of food...But the fact of the matter is, I can't eat. Or run or walk or even move my legs or arms. I'm lying flat in a bed and typing this with my pupils, which, along with my brain, are among the last functioning parts of my body.
...I've been filming every angle of this disease for the past 10 years...It was important to me that we get it down on film because ALS is a very physical disease. If it was going to steal my being, I would replace it with celluloid.
There's a bright side to ALS. I know that sounds twisted, but in a lot of ways ALS saved my life. Having a fatal disease turns the odometer of the soul back to zero. It reverses any evils done or done to you...
I live in a bubble. When it comes to ALS. I make it a point to not remember the gory statistics. ALS has not had any significant drug approval in the 70 some years since Lou Gehrig gave his "Luckiest Man on the Face of the Earth" speech. So I lie here...praying to the black dot on my ceiling...dreaming of the outside world.
Hollister is a 62-year-old from Richmond, VA, ALS used a very subtle mishap to announce its arrival. Focus your mind's eye on this: Hollister is an imposing six feet tall with a shock of bright red hair. She is smart, savvy and financially secure. Life for her has been about dealing with what comes your way head on with no excuses.
I was out visiting my cousins in California after my mother died. So that must have been the middle of late spring 2008, and I dropped my chopsticks. Now that doesn't sound unusual except that you know I grew up in Honolulu and could use chopsticks before I could use a fork.
What followed was a long period of tests and surgeries to address what the doctors though might be nerve problems. But Hollister's symptoms continued and worsened. In the last quarter of 2011 she was back at the University of Virginia for more tests.
The doctor finally came in and sat down. I thought he was going to cry. And he said, "I was really hoping I was wrong, but I'm not. You've got motor neuron disease." I said, "Is it ALS?" He said, "Yeah."
I'm Scottish-Irish. We don't whine much. It's not allowed. My mother actually had a sign in her kitchen that said, "This is a no-whine zone' Fix it, get over it and shut up about it. And so the only thing I could do was understand as much science as I can understand. It is what it is. We all started dying the day we were born. You know what the difference is? I have a greater probability of knowing from what than you do.
For Hollister, the coping recipe depends heavily on inner strength, practicality and common sense. Okay, Life, this is what you've dealt me. But now stand back and listen up, because this is what I'm doing and saying about it.