[Graphic from Speed4Sarah website.]
As my part of the #whatwouldyougive? fundraiser, I gave up my voice for a day. The fundraiser, started by Sarah Coglianese, raises funds for ALS research by having participants give up one ability that an ALS patient might/will give up in the course of their disease. (I had to start a day early because I thought I’d be driving west with 2 kids and a dog starting 8/1.)
One type of ALS is called bulbar onset and starts in the bulbar region.
Progressive Bulbar Palsy (PBP) – was originally described by Duchenne in 1860. In approximately 25 percent of people with ALS, the initial symptoms begin in muscles innervated by the lower brainstem that control articulation, chewing and swallowing. Sometimes the disease remains in this form for years, but usually it progresses to generalized muscle weakness, that is, to ALS. When the disease is strictly limited to the bulbar muscles clinically and electrodiagnostically, it is PBP, not classical ALS. (from The ALS Hope Foundation website.)
For people with Bulbar onset ALS, one of the first things to go is their voice. This must be very strange when an otherwise healthy looking person is out in public yet can’t respond verbally to normal conversation. This has opened my eyes to handicapped parking spaces and placards too. How many times have we seen a healthy looking person parking in the handicapped parking space with a placard? I’ve been like, “Oh yeah, you look REALLY handicapped!” Now I suspend judgment.
Last Friday I gave up my voice as part of the #WhatWouldYouGive? ALS fundraiser. Here’s how it went:
7AM I woke up first. Kids came down around 7:45AM and remembered I wasn’t talking. They enjoyed the novelty of it – were uncharacteristically shy and polite to me. They also made a game of trying to figure out what I was communicating to them through gestures. It was fun at first – trying to remind them of all the things I typically bark out on the mornings we wake up late. (OK that’s been every morning this summer.) They had camp at 9 so had to eat, get dressed and get hair brushed (on odd days). G hustled them out the door and then took off to sell a kayak. Being alone for a few hours made this challenge super easy. The only thing that came up was during my morning (ie. weekly) jog was when people said hello to me I could only smile back. Did they think I was a snob? Usually I find any reason to talk to people especially if it gets me a short break from running.
G got home around 11AM. When he came in he acted shy and quiet. He barely spoke to me. I sat in the dining room on my laptop and emailed him suggestions for the day’s plans to his laptop in the kitchen. Otherwise he pretty much avoided/ignored me. Did he think HE was participating in the challenge? If so, why hadn’t he started a fundraising page? Or did he think that since I wasn’t talking I also couldn’t hear?
We agreed to pick up the kids at 12:30PM and head to G’s favorite BBQ joint – 12 Bones here in Asheville. We rode silently in the car but I did think to bring a pad of paper and a pen in case I needed to tell him something. When we arrived at the art museum (where the camp is) I realized it was the last day of camp and couldn’t very well go collect the kids without saying thank you and good-bye to the teacher. G understood so I waited in the car and he went to get the kids.
When they got in the car they remembered I wasn’t talking. They were still excited about it. We got to the BBQ place and stood outside in line. Usually I figure out what to order for the kids. So I wrote on my pad what I was getting then I decided to let G take care of the kids for once. I wondered what people next to us in line thought about me answering everything via writing on a notepad. When we got to the front of the line G had to order. The guy at the counter looked at me expectantly but I remained awkwardly mute. G ordered (I thought wrongly) for the kids. I was unable to remind the kids to say “Thank you” when he handed them their cups. I went to get water at the soda machine. It was crowded and I tried to wrangle the kids in a line in front of me but since I couldn’t say “Excuse me” or even “Sorry” it was more difficult than usual. When we sat to eat Bea didn’t like her sandwich at all. I smugly thought, “I wouldn’t have ordered that for her.”
After lunch the girls and I made a bathroom stop on the way out. There was one woman in line in front of us but Bea didn’t see her and raced in front of her to the bathroom door. Normally I would’ve nipped that in the bud but I couldn’t! So Bea tried the door to discover it was locked, looked at me and I was able to gesture for her to come back to our spot in line. M told her we had to get in line. Once inside the bathroom, it was impossible for me to remind the girls to hurry up. So they didn’t. M sat on the toilet chatting for a while. I tried gesturing in a circular motion with my hands as I knew there was a line outside. Ay yi yi. When she was good and ready she finished her business. I couldn’t even tell the next person that I wasn’t the one who stunk up the bathroom!
Leaving the restaurant for the parking lot there was no way to remind the kids not to run across so instead I had to grab their hands. Usually I just remind them, “We’re walking across the parking lot so we need to be careful of cars.”
It was over 90 degrees out so we headed to the pool. When we got there we discovered I had neglected to put the girls’ swimsuits in the bag so we had to go ALL THE WAY home to get them. Back to the pool – G had to take care of the payment when we got in. I took the kids into the changing room. After hours of quiet disciplined fun at art camp, sitting at the restaurant and driving around in the hot car, they went haywire – running around screaming, dragging the clothes/towels through the puddles on the floor, opening the door to my changing cubical. I forgot I wasn’t talking here and yelled at them, “KNOCK IT OFF! YOU’LL BOTH LOSE TV IF YOU DON’T STOP THAT!” which was not only breaking the no talking commitment but also just as effective as it usually is.
In the pool things were fine until my kids refused to share their pool toys. You know the little weighted squids and rockets you drop to the bottom of the pool and then retrieve? Bea acts just like Root Beer at the dog park. He has no interest in his tennis ball unless another dog wants to play with it. Then he become ferocious and suddenly the most tennis ball loving playmate you’ve ever met. Bea is like this with pool toys. Normally this is a teachable moment which I use to discuss playing out in a public park and that if we take toys to the park then we need to share them. If we take sidewalk chalk and paint brushes, they are for everyone to use. But I couldn’t say anything and the other children who wanted to play with our girls looked at me in a way I took to mean, “Do something about this!” G was off in his head about something and once again NOT DOING THINGS AS I WOULD DO THEM. (I.e. doing them wrong.) The only other thing that happened was the lifeguard asked M to keep the snorkel out of the pool. When another dad heard that he remarked incredulously to me but loudly enough that the lifeguard would also hear, “Really?? You can’t have a snorkel in here? Why not?!?” Instead of responding I smiled and swam away. What could I say? (Also, the only reason M had a snorkel was because G had brought it and we’d already been told no masks were allowed in the pool so it wasn’t really much of a surprise to me.)
That night it got harder and harder for me to not talk. I felt isolated, powerless and frustrated with how things were being done. (Sorry G!) Also, at the girls’ bedtime I realized I couldn’t read “Island of the Blue Dolphins” to them. I had gotten really into the book reading it to them now as an adult. I went downstairs to collect G so he could read it to them. G and I watched “Unbroken” after the kids went to bed. This was the most challenging part of the day in some ways as one of my favorite things to do is talk through movies and tv shows!
At 12:00AM I started talking immediately.
Reflections: During the day whenever I felt frustrated/challenged by being with family and strangers without my voice, I couldn’t help thinking about the reality of ALS – even Bulbar onset – being that the slurred speech/loss of speaking would be coupled with other losses. Would I even be able to eat at a restaurant or drink water? That jog I took in the morning, running down the stairs first thing in the morning, making a cup of coffee for myself, brushing my girls’ hair, hugging them goodbye.
It was a big challenge not using my voice but I had all my other abilities AND i knew I really did have my voice to use if I wanted to. I missed the deep sadness that would’ve been coupled with a true loss of my voice – knowing my kids wouldn’t remember what I sounded like unless I recorded it before it was gone. Some people don’t have time to record their voices since it’s the first symptom of ALS for them.
Thank you, Sarah for coming up with this fundraiser. It gave me just a fraction of understanding and empathy for what ALS patients and their families are going through. That is why I am writing this blog – to pass along what I observed to other currently healthy people who could be advocates for pALS (people with ALS).
We are still accepting donations for this fundraiser! $10 is a great amount and deeply appreciated if you can. Thank you to Andrew & Allison Cox, Libby Raccio, George Fitz, Lyn Bradford, Dina Vineberg, Lindsay Dietrich, Veronique Marachet, Mandy Sorenson, Kathleen O’Clock, Janice Reid, Lucia Quinn, Caroline Murphy and Jess Clapp Hennessey for your generous donations and support! Thank you also to an anonymous donor – it means so much!
**While typing this I asked G why he seemed to stop talking to me. He said, “I’d probably always be silent if you quit talking so much.”**
Every 90 Minutes : foundation started by pALS Jay Smith who is was diagnosed with Bulbar onset ALS in spring 2014.
Anthony Carbajal’s Facebook page : this young guy was diagnosed in 2014 and actually has fALS (familial ALS which is inherited through a genetic mutation). He was on the Ellen Degeneres show and had a well-known Ice Bucket video last fall.
Rob Becker’s #WhatWouldYouGive? blog : he will use a wheelchair for an entire day as part of the fundraiser and documents his prep/experiences here. He is a friend of Sarah Coglianese’s.