How we each can lift ourselves above the fray -- life's circumstances, negativity and excuses -- is the true message of Thanksgiving that I see. Because, if we're truly thankful, then we will know that our lives have a higher purpose, and our expression of gratitude is to live out that purpose.
In January, I had to get a tracheotomy so I now breathe through a tube. This means I can no longer speak, but it does not mean I am giving up. My friends give me strength and I will keep fighting. For myself. For others. For a cure. My voice is louder now that ALS took it away.
As Mark and I have gone through this journey and experienced a literal parade of personalities walk into our lives, we have come to realize that no one will ever be perfect. We also know our lives are changed forever and this is the new normal. Plain and simple, caregivers are part of our life now.
When you're on the side of a mountain in the middle of a range chock full of them, dusk turns to darkness in an instant. We were on hour six of our four hour hike, our large group of 25 people, all walking the same treacherous trail.
Ever since I was diagnosed with ALS (Amyotrophic Lateral Sclerosis), I have noticed that people are 100 percent confused about the deadly disease. I need to set the record straight: people with ALS (PALS) can see, hear and perfectly understand what you're saying.
For anyone out there who donates to find a cure, thank you! This is about living, taking the next step, beating the odds. Fifteen people are diagnosed with ALS every day. Don't let this disease happen to you or your spouse. Or your neighbor. Or your child. The cure is closer than ever.
On the most difficult stretches, I could feel the breath from every one of the men carrying me. Which made me wonder: if my body was tired, what did their bodies feel like? How did they have the capacity, the energy, the drive to continue to lift my chair over and over again?
During May, ALS Awareness Month, let's pay special tribute to my sister Nell, all the others living with this disease, and those who have gone before them. Think of them the next time you take a step. Embrace your child. Speak softly to your loved one.
It's odd to think of my autopilot life, the one before. Working at a job I loved and navigating the daily dance of sibling warfare, homework and appointments. Then one night I looked down at my left hand. "Holy shit," I yelped. "You need to go to the doctor," John said.
While my skiing days might be few and far between until we find a treatment for this disease, that's okay if, and only if, I realize the importance of harnessing that frustration and anger and channeling it into more valuable assets.
I was diagnosed with ALS, which affects voluntary muscles from head to toe, in February of last year. I could choose to feel ashamed or disabled when sitting at a dinner table and needing to be fed, or, as I now see it, I get to choose who feeds me!
It had only been a couple of months since I had been diagnosed with ALS, but I was constantly reminded of how few people have actually ever heard of the disease. To say this was frustrating is the PG version of my feelings toward the issue. This sparked the creation of A Life Story Foundation.
Every day is a challenge, even in a battle between my body and me. Don't get me wrong, I do have a choice in what I put in my body, but how my body functions or even appears is outside of my control because of ALS.
As if being diagnosed with a terminal disease (for the record, I have no intention of letting this beat me) isn't bad enough, it is a disease that the general public has never heard of or knows very little about.