A Life Derailed: My Journey with
#ALS
-
An athletic young professional, only a few years out of college, begins to feel something is wrong with his body. Unknowingly, he has already started a new and terrifying journey.
I have ALS. And most of the time, people have at least some understanding of what that means to me and my life. But sometimes, I just want to grab people, and shake them, and say I'M DYING! Don't you understand what that means?
#ALS
#ALSAwareness
#Terminal
#EndALS
I have a date tomorrow. And a date on Sunday! Two intelligent, attractive women want to meet me, a guy in a wheelchair with a terminal disease. How could this happen? What’s my advice? Easy. TRY. And keep trying.
#ALS
#EndALS
#ALSAwareness
#Vermont
#onlinedating
I hired my first caretaker today; a woman to hang out with me a couple days a month to give my parents a break and some alone time. I'm just now recognizing the milestone.
#ThisIsALS
#EndALS
It’s been more than two years since I was told my lungs were getting weaker and prescribed a biPAP and hospital bed. Last week I tested well enough that I still don’t need a machine to breathe at night.
#EndALS
I am proof that ALS can affect anyone, at any age. This flag at the
#ALSinDC
event on the National Mall was one of 6,000, representing the 6,000 people diagnosed with
#ALS
each year. Join us as we work toward an
#ALSFreeWorld
. Thank you
@iamalsorg
for all that you do.
#EndALS
"I feel the need to carry a picture of myself. When I’m introduced to someone new, I’d like to show them...I can make them believe that it wasn’t always this way. I used to look different. I used to be different. I have proof."
- A Life Derailed -
My Aunt Jayne died yesterday. Cancer. Fucking cancer. She made sure to grow our relationship after my
#ALS
diagnosis. I don't have a lot of family and I'll miss her tremendously.
I think our instinct is to draw conclusions about a person’s intelligence based on the sound of their voice. Try to resist the temptation. ALS has not and will not affect my intellect.
#ALS
#EndALS
#disability
#dontjudgeme
10 years have passed since I shared my
#ALS
diagnosis with the world, 18 months after it happened. Not an inkling of hope was communicated to me. I didn't consider if I'd be here today. I didn't hope and pray for a miracle. I still don't. It's too hard.
#EndALS
#ThisIsALS
A Life Derailed: My Journey with ALS has been checked out of my local library 17 times. (At least) 17 people have read one donated copy of my memoir, each of whom spent hours learning about
#ALS
. That's a win for
#ALSAwareness
.
#alifederailed
#ThisIsALS
#EndALS
#MND
Sometimes, when I'm riding in my chair in public places, being chauffeured by my mom, I'll have revelatory moments: Is this really me? Is this my life now? However inevitable, I really didn't see it coming.
#EndALS
#ThisIsALS
I'm unable to attend today's
#Vermont
#ALS
walk. My mom is in bed with a migraine and I haven't been able to make other plans. Yet another reminder of how reliant I am on her. Thank you to everyone who made a donation.
Around the time of my ALS diagnosis, I often traveled for work. Flying around the country, renting cars, and visiting branch offices. Always alone. It felt like a lot of responsibility, and trust, at 26. Looking back, all I can see is the FREEDOM.
#alifederailed
#ALS
#EndALS
“Twenty-seven years old, newly diagnosed with a terminal disease, I sat up alone in my apartment. I didn't think, This is the time to do something; I didn't think anything at all. I was tired and broken and hiding. That was all I had in me to do.”
ALD -
My 21-year-old brother died suddenly on a Friday. Dad and I worked our usual shift at the restaurant the next day: 8-8. I couldn’t leave Nick out of my memoir.
"…As a nurse for 40 years, I’ve cared for many
#ALS
patients. All I can say is that this book should be required reading for all medical and nursing students. I’ve read a lot, but never to this honest detail of what someone with ALS goes through."
-Carol
“People ask me if I like to write…the truth is...if I could walk and run and hike and ski and golf and had a career and a family and could travel on vacations; if I could do what I wanted, how much time would I spend grinding out words in front of a screen? Not much.”
#ALS
I bought a collapsible power wheelchair - the Majestic IQ-9000 from ComfyGo Mobility. It weighs 55 lbs and is designed to be folded and checked like a standard piece of luggage. Also, I'm going to Los Angeles at the end of April. More to come on that.
#ALS
#EndALS
#wheelchair
I approached a cab parked at Church and Main late on a Saturday night and told the driver where I was headed. He refused my fare, said I was too drunk, didn’t want me puking in his car. I was drunk, but it was undiagnosed
#ALS
. I walked the 3 miles home instead.
"I fantasize about getting it all back...I think of all the big things—where I’d work, where I’d live, how much money I’d have—and know none of it would matter in the least. I’d have everything I needed, just being whole again."
#alifederailed
#ALS
For most of my life, I treated hugs with my mom as a bit of a chore. They were for HER. At almost 40, I’m learning, they’re also for me. It’s too bad that boys are taught to resist such closeness and vulnerability. It’s harmful. We all need.
#alifederailed
#ThisIsALS
#ALS
#EndALS
Before
#ALS
"I've been on a few camping trips since...but that was the last time I could pull my own weight, that plans didn't need changing for me. In some ways, I might even say, that was the last time I felt truly alive."
From "A Life Derailed" at
We often drive by a house with a long aluminum ramp at the front door. Today I noticed a fresh set of stairs had replaced it. A single thought entered my mind: Somebody died.
#disability
#disabilityawareness
“The best account of living with ALS I have ever read. Will remember this book for a very long time, maybe forever.”
Jacqueline Ismay on goodreads
A Life Derailed: My Journey with
#ALS
, at
My therapist asked in what ways I'm proud of myself. It's not something I'd specifically considered. I listed a handful of things, but I can summarize them all: I'M PROUD THAT I KEEP TRYING. Fellow
#pALS
, take a moment to give yourself some credit: What makes you proud?
#ALS
I had a coffee date today with a woman visiting Vermont from Kraków, Poland. We met on Tinder. It was lovely. She was so sweet to me. Instead of fearfully asking, “Why?” I now ask, “Why not?” I recommend making this change. Openness and optimism over cynicism and fear.
"Although I know no one personally with ALS Nate has made me want to find some way to try to be of assistance to this group of sufferers. They are my heroes. Thank you Nate.”
This is a win. This is my goal. Thank you for reading, Amazon Customer.
#ALS
#EndALS
#Awareness
"Nicholas John Methot was two years my senior. He had fair skin, covered in freckles, blue eyes, and a head full of reddish-brown curls that tightened with age...We were always together—Nick and Nate, to the neighborhood kids."
Happy Birthday, Nick. We miss you.
I used to think I had thick thighs. I was actually embarrassed of them at one point. Compared to the other high school boys, I did. And they were glorious.
#ALS
#ALSAwarenessMonth
#ThisIsALS
#EndALS
Latest review of A Life Derailed: My Journey with ALS: "I read this book in its entirety in one day. I've never done that. This book is so important and has such a voice. It has really given me a lot to think about. Thank you for writing this, it matters!"
I've been asked about the key to my relative health and longevity with
#ALS
. Long periods of involuntary abstinence may have helped, but I wouldn't recommend that. 🤣
#EndALS
#ThisIsALS
The long-awaited arrival of
#spring
is a great time to share some pictures of
#winter
. I tried to get outside most days and get some light in my eyes. Also, there’s still snow on the ground in
#Vermont
; it’s really just the start of mud season.😂
#GetOutside
#DisabilityAwareness
You know when you see a commercial and think, “This really doesn’t apply to me,” and feel kinda left out. That’s how I feel about the whole world.
(I really need to get that palatal lift. To fix my nasal voice.)
#ALS
#EndALS
#ThisIsALS
I wrote my memoir so that people outside of the
#ALS
world might understand what it's like. But I'm humbled to receive messages like this. Thank you, Liz❤️
#EndALS
@a_life_derailed
@LaVonneRoberts
My son has very advanced ALS. I thought I understood all his emotional trauma. You have taught me so much more about his inner turmoil. Your book raises awareness in a way that communicates the very essence of ALS and the no hope message that often goes with it.
#Empathy
isn't a gene. It's taught. By parents and mentors, and by life experience. People don't have it because they were taught that the world is winners and losers instead of cooperative. Those people are ruled by
#fear
. Empathy takes
#love
.
#EndALS
"If ALS is the cause of every moment of my day, the things I do and like and my physical appearance―even, perhaps most powerfully, the thoughts in my head―IT IS ME. It's undeniable. I don't know who I am without ALS. I don't have a clue where I'd be."
Today I sold my 100th copy of the ebook (
#Kindle
&
#Nook
) version of my memoir. I'm so grateful for the support I've received on social media and from the
#ALS
&
#MND
community. Thank you for reading and sharing my story to help raise
#Awareness
.
One silver lining of dating with ALS: I always have a scapegoat. No one’s ever thinking: Love the ALS; hate your personality. 😂
#ALS
#EndALS
#DisabilityTwitter
“I replay memories in my head, little moments and lost conversations that feel more significant with the passage of time…I replace my words with something better...I always remember my feelings; if only I could’ve expressed them.”
My memoir is on sale on Amazon! I had no idea, but the internet seems to agree that it must be selling well and they want to promote it. There's no telling how long it will last; get your copy today!
#ALS
#EndALS
#memoir
#Amazon
#onsale
"The ideal male body type is Danny DeVito." - as seen in a
#Tinder
profile 😂🤣
Read about online dating with
#ALS
in my latest blog. This might be the best thing I’ve ever written. Enjoy!
I'm flying to L.A. for Vince's Race on April 29th! Put on by
@racing_als
, it's named for Vince Murray, who passed away just 13 months after his bulbar
#ALS
diagnosis in 2015. Check out and please consider a donation if you can.
#EndALS
“I grew up in the backyard, on the sidewalks, streets, and driveways, and in the half-dozen parcels of woods that made up the neighborhood…When I began to lose that pillar of my life, I did the only thing I could: I fought to keep it.”
1st and last line
A Life Derailed: My Journey with
#ALS
sold almost 90 copies in January!! Thanks to all of you for making it the best month since its debut in June. I’m so grateful to share my story. Find out more at .
#EndALS
I continue to search for meaning in this
#ALS
life. "A meaningful life can be extremely satisfying even in the midst of hardship, whereas a meaningless life is a terrible ordeal no matter how comfortable it is."
@a_life_derailed
Just finished your book. Discovered it searching for books to put in 15 area
@LtlFreeLibrary
to raise
#ALS
awareness in May for the nonprofit
@ActiveALS
.
Have lost 6 family members to ALS. Profound thx for sharing your journey in such well written, brutally honest vivid detail.