I Will Always Be Me
and can you wash bras in the dishwasher?
Hi Friends,
Writing is that thing at the eye doctor where they say “Which of these is better?” and you can’t actually tell but you pick one because you have to, but it’s for every sentence, always, for the rest of your life. It’s tiring.
Anyway. I, for one, think it’s nice that I only send these out every several months. I choose to believe it is a sign that I value your time and only want to tell you about the important things, and NOT AT ALL a sign that sometimes I forget I have a newsletter.
Mostly, I’m just out here living my life. Writing things that sometimes people pay me for. Googling “can you wash your bras in the dishwasher?” Insisting that mid-priced chocolates are almost always better than really expensive chocolates. Thinking about how Smurfette must have had a very hard life. You know, EXISTING LIKE A PERSON
But then we get toward the end of the year and I start to think about what I did in the past twelve months. And I realized there was one thing I talked about on social media but didn’t talk about here. I was reminded of it because very recently we lost a wonderful member of my family to ALS. I won’t go into details because it’s not my story to tell, but suffice it to say she was a light for so many people and should have had many years left.
(I know, how dare I lure you in with dishwasher-bras and then jump right to death and disease. That is 2022 for you, pals. I don’t make the world. I just live in it.)
But all that brings me to this: in whatever is the exact opposite of a “fun coincidence,” I actually wrote a book about ALS that came out early this year. And, while learning about the disease was both horrifying and devastating, working on this book might turn out to be one of the coolest things I get to do in my whole life.
The book is called “I Will Always Be Me,” and it’ll take a little explaining
First, a little about ALS (it’s called MND in Britain, which is where some of the information I’ll link to is written.) As you probably know, it’s a really devastating neurodegenerative disease that currently has no cure. It also robs patients of their voices, sometimes months or years before it takes their lives. Without going into gory details, it means that for some people whose minds may still be working fine, there can be a real sense of being trapped in your own body without a way to communicate.
THERE IS GOOD NEWS. We have technology now that allows people to “bank” their voices. It means that people can record their voice, have it synthesized, and then later if they lose the ability to speak, they can use a computer that speaks with their own voice and inflections. It’s honestly REALLY NEAT.
The less-good news is that voice banking can be an arduous process. It sometimes requires going into a facility and saying hundreds of random phrases into a microphone, which can takes hours and days away from someone whose time and energy are especially precious.
And I guess that’s where I came in. I was asked to write a book to help ALS patients talk about some of their experiences with the disease. Not a children’s book, but maybe a book that even children could understand.
Sometimes it’s hard to tell your friends and family what you’re going through over and over, and it’s helpful to have someone provide the words for you
.The title came when I spoke to a speech and language therapist specializing in ALS— Richard Cave. In our conversation, he told me one thing that ALS patients most want to say is that, while their bodies are changing, they can still think and hear and love. Basically “Everything is changing, except for who I am.” And so that became the book.
But I haven’t told you the cool part yet. The part that was totally unbelievable to me.
WHEN THE PATIENT READS THE BOOK ALOUD AND RECORDS IT, IT CAN ACTUALLY BANK THEIR VOICE. At home. On their own computer. In maybe less than 30 minutes.
So with a ridiculous amount of help from patients and speech therapists and the MND association, I wrote something. There were corporations involved with technology and money—Rolls Royce and Dell and Intel. There’s an ad agency that came up with the idea and a team that documented it. There were astoundingly funny and beautiful illustrations by Nicholas Stevenson. It all started when a man named Stuart Moss lost his father and started something incredible. And then it became a book.
You can read it, learn more about it, or even record your own voice here.
(I’m gonna put some disclaimers here that are important in case this is relevant to you: Anyone, anywhere, can read the book and record their voice for free. But at least right now, the program that synthesizes the voice for free for ALS/MND patients is only in Britain. There are American programs to bank your voice, but they aren’t using this book right now.)
Here is a wonderful video of ALS/MND patients using the technology. (WARNING: this video is both empowering and also heartbreaking. I cried a lot while watching it, and you should only watch it if you’re ready for that.)
And while I did other things this year, I think this is the one I’ll remember. This week, I donated to the ALS Association in honor of my family member, and maybe you would like to as well.
Also in case you are still wondering: you should not wash your bras in the dishwasher. I mean, unless you really want to. Are you gonna let an incredibly sporadic newsletter stop you from living your dreams?
If you like this newsletter, maybe share it with someone!
Kisses (metaphorical!),
Jill “The Zucchini Princess” Twiss
p.s. Buy my picture books here (hyperlinked):
A Day in the Life of Marlon Bundo
p.s.2. Follow me on social media here:
Twitter (for now)
Aw, I lost my grandma to ALS. It’s a hard thing to go through. ♥️