When to Back Down and When to Turn Down my Hearing Aids: Awkward Conversations About ALS and FTD
I was recently in DC at an ALS Summit. The great thing about showing up to events like this is that I get the opportunity to meet people I’ve only seen on Zoom. ALS and FTD can be very isolating, so being able to put my arms around an old friend feels fantastic.
At dinner, I was sitting next to someone I knew well from the ALS community Zooms, and we chatted about meeting with senators to talk about genetic ALS and FTD. We’d both been trained by the ALS Network and I AM ALS on how to persuade representatives and their staffers to pay attention to the genetic carriers of neurodegenerative diseases. We were united in a cause – to increase funding around ALS and FTD, and I felt like I could speak freely about my concerns.
As we waited for our drinks to arrive, I expressed my deep frustration at the Trump administration’s drastic cuts to ALS research. Not only was the new president cutting research funding to universities because of their DEI policies, but he was also cutting the NIH’s money. Without funding for research, people at genetic risk of developing ALS or FTD – who are already often overlooked by the medical community – will have no way to prevent disease onset. And ALS patients on experimental drugs will die much faster.
My friend looked at me skeptically. She said, “Well, the NIH is really bloated. It needs to be defunded.”
I didn’t know what to say. Here I was, sharing a meal with someone who I thought I respected, and she was defending a politician I detest. We hadn’t eaten yet. I felt trapped. I didn’t want to ruin this meal just because of what was clearly becoming a political debate. Jeez, it was just the first day of the conference, and I was already pissed off!
Instead of popping off or getting into it with her, I said, “We’ll just have to agree to disagree on this.”
Mercifully, the drinks arrived, and the server asked for our orders. Once he departed, I excused myself to go to the bathroom. It allowed me to take a few minutes to compose myself and come up with a calm answer, should our conversation go in a hostile direction.
I lucked out when I returned to the table. My friend was on the phone as I sat back down. Dinner was peaceful this time, but it doesn’t always go that way.
I do have friends and relatives who are antivaxxers. As someone who relies on science and medicine to save me from getting a fatal neurodegenerative disease, I’m all about disease prevention. These people rub me the wrong way. Their conspiracy theories about how the government is trying to harm us by vaccinating us against contagions that can kill us drives me nuts. It’s sometimes hard to remember that they’re friends and loved ones and not enemies.
In the last five years since the Covid pandemic, I’ve been told, “A vaccine killed my brother,” and “They’re microchipping us,” as well as “The Covid pandemic is a government-manufactured way to control the people.”
I’ve worn hearing aids for the last two years, and because I have a particular sensitivity to people trying to ruin my dinner, so sometimes I just turn down my hearing aids. It’s a cool trick, and I can control my hearing aids with my cell phone, so when someone’s telling me that the MMR vaccine causes autism, I check my phone and turn the damn things off. This has saved more than one meal at the dinner table.
When I can’t get to my phone in time, I just say, “I love you, but I really don’t want to talk about this right now.”
The problem is that sometimes it serves as an invitation to more debate. And often, the whole table gets into it.
Another thing that rankles me is this common misconception among my family members that if they don’t talk about or test for the C9 mutation, they won’t get sick with ALS. Once, a family member told me, “If I don’t go looking for trouble, I won’t find any.”
Actually, that’s total bullshit. Not like I tell them that, but factually speaking, you can carry the genetic mutation for the C9 expansion whether you test for it or not. If you get a genetic result that says you’re a carrier, it doesn’t make you sick, but it does make you aware. And it gives you the option to do something about it. You can enroll in research to find a cure. You can donate to places that help genetic carriers.
I’m not saying that everyone in my family should know their genetic status. Some people just can’t handle the stress of it. And I get it. Sometimes bad news can be depressing. And other people in my family don’t really care if they bring kids into the world who may be destined to die of ALS or FTD. But at least don’t blame the genetic test for making something like ALS come to pass.
This denial of science will never come between me and a loved one, even if it changes our opinion of each other, but there will be a time when a relative may get so sick of my activism that they don’t want to talk to me anymore. I’m okay with that. Activism is baked into my character. It’s never going to change. When they develop their first signs of ALS or FTD, I’ll be here to educate them. I’ll point them in the direction of promising research and will still love them.
To read about my journey with science and optimism leading the way, please read my new book, Last Nerve: A Memoir of Illness and the Endurance of Family.