“I WALK & TALK FUNNY. NOT DRUNK (UNFORTUNATELY). ALS AWARENESS.” That’s what the back of my T-shirt says as I’m working a shift at Bar Goto on Manhattan’s Lower East Side. I still work three nights per week, making Japanese-inspired craft cocktails at this awesome little drinking den, even now that it’s nearly a year since I received just about the most “holy shit” type of diagnosis you can get—ALS.
On May 7, 2018, my neurologist told me I have amyotrophic lateral sclerosis, a neurodegenerative disease that attacks your brain and nerve cells, breaking you down physically with a rapid and unyielding progression. I was told that with braces, I would have a year of mobility but that then I would be confined to a wheelchair. After that, I could expect to have a feeding tube and ventilator. I would be totally dependent on the care of those around me, and overall, I was told that my life expectancy was about three years.
When I first heard, “Hey, you have this motor neuron disease called ALS,” the first thing I saw in my mind’s eye was an image of a debilitated Stephen Hawking. I want people to see, rather, that there can be humor and strength associated with this condition; it’s not just—and God bless Hawking’s soul—someone sitting in a chair drooling on themselves. There’s more to it than that.
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We all have bad days, but when you have ALS and have a bad day, it’s something entirely different. And sure, I have days when I just can’t get it together. But you know what? The next day is almost always awesome.
After all, I’m still mixing drinks three nights per week! It might not be easy, but it’s the best medicine I have. People have to consider the idea of the human spirit, because the human body and the human spirit are really, really powerful. For me, that’s what I hold on to. Because—make no mistake about it—this is daunting.
Bartending as Refuge
Being at the bar is really important for me on so many different levels. The bar is a refuge. ALS physically turns you off, but for me it’s more of a mental craziness. Because physically—okay, it is what it is. But mentally, you’re like, “I would love one day, 24 hours, not to think about it or even deal with it.”
I’ve said it before and I’ll say it again: I’m very lucky and blessed. And I love working for Kenta Goto, Bar Goto’s owner. He’s not only a badass behind the bar, but he’s a really amazing human being. And he’s done nothing but show that he’s an awesome boss.
There are many people with ALS who don’t have the kind of support system that I have. Kenta has just allowed me to be me, and not to worry about anything else. It’s been liberating, and when Kenta says to me, “Don’t worry about them—just be you,” that’s pretty amazing to hear. And the look in his eye is that he means it. It’s not like, “Oh, poor Chris Reed”—it’s not that. It’s like this: Fuck them. You do you. That’s it. At times I make it sound a little silly because humor—laughter—really is the best medicine.
Kenta’s view on all this is really amazing. Not to sound corny, but he’s a very special human being, as is Mathew Resler, the other bartender I work with. Both of them will just say, “Tell me what you need and we’ll make it happen.” Usually Mathew does all the talking, and I just make drinks and try to be quiet. I might sound a bit rough right now, but I sound worse than I physically am—you should see me working behind the bar! And I mean all of you: Please come down to visit me so I can make you a cocktail and share a laugh. I love this business.
Even with my I WALK & TALK FUNNY T-shirt on, it bothers me that I can’t do as much as in my head I know I can for Bar Goto. But sometimes that T-shirt also sparks a conversation with a guest who has a grandmother or a friend who also has ALS. Those are the types of moments that make it worthwhile.
My Public Turn
Kenta and Mathew started a GoFundMe page for me in February, and they’re handling all the social media stuff that goes along with it. It’s been really amazing and powerful. The outpouring of support has been, in turns, shocking, inspiring, and thrilling. I mean, the money is something I need, sure, but the love, the positivity, the community, everything—it’s really been truly amazing. It’s so funny because I’m not a social media person. But now I’m living this very public life in some ways. It’s all a part of what I’ve been referring to as this wonderfully crazy period, and I’m more appreciative than words can truly express.
Even though I’m still working now, I recognize that there will likely come a time when I’m no longer able to, and that my medical expenses will pile up. I’ll fight that off for as long as I can, though. The equipment and the direct, hands-on care I may need in the future are major costs that can financially ruin many people with ALS.
I’ll give you just one small example of what it’s like dealing with my insurance, and ironically, I actually have great health insurance through my wife’s work. Even so, getting the right coverage has been a hassle, to say the least. There are a couple of different pills nowadays that are supposed to give you two to three more months of life. Okay, that’s what I’m fighting for. But I tried them, and they made me so sick that I told my wife, “You know what? If this is all there is, then fuck it. Because I feel like ALS times 10 when I take them.”
I feel better taking my supplements and eating healthier. My neurologist, who’s awesome, also put me on B12 shots. I give myself two shots per week, and it really makes me feel much better. Those shots cost $250 per month out of pocket because insurance won’t cover them. Meanwhile, they are willing to pay $1,200 per month for those pills. They’re willing to pay for medicine that doesn’t help—this overpriced crap—but they won’t pay for B12 shots that make me feel better. I’m like, I’m no genius, but I’m actually saving them money. And I feel better, so isn’t that a win-win scenario?
The Bar Industry Needs Health Care
This is all a part of why I say that health care in this country is a hot mess. That’s for everyone, but when it comes to the bar industry, many of us are even worse off, classified as part-time employees or contractors, with no benefits at all.
But when people come together, we can get more done. It just takes time and effort. After seeing all this amazing support and outpouring of love, I believe that whether it’s through the United States Bartenders’ Guild (USBG), or we start something here in New York City, we can remedy health insurance.
The idea would be to address health benefits for all of us. The bar industry is this wonderful, tight-knit group of smart, funny misfits. There has to be more that we can do as a community to make sure we’re all healthy and wealthy. And I believe it’s possible, and with GoFundMe and the support I’ve received, it makes me want to do it even more.
When you have a big-ass corporation, you need a lot of people to keep premiums affordable. So why can’t we? I don’t care if you are a competing bar. You know, it’s nice to win awards and accolades—it is. It’s an ego boost. But when it comes down to it, I don’t care who wins the awards. I want every bar in this city to get together to make one tight-knit community.
Maybe we can use the existing USBG organization as a springboard for the whole bar industry: bartenders, barbacks, servers, everybody. Then we would have this massive “corporation,” and everybody could have insurance and benefits.
And while we’re at it, I will also fight for the idea of preventive maintenance. I think you spend less money and people are healthier if you do a little bit here, a little bit there. Don’t wait until the shit really hits the fan. We have to change the way people think, and if everyone in the industry is motivated to take action, I know we can make positive changes.
I’m Not Afraid of Death
All of this has been nuts—the support and the outreach. If any of you were here with me right now, you would see I have goosebumps on my arm. It’s so crazy. I can’t even put into words how amazing everybody has been.
Money is just green paper. I need it, sure, whatever. But it’s the joking and the good energy that I really need. Whether you believe in God, Allah, Buddha—whatever—the prayers and everything have all been really special for me.
You have to stay positive. For me, that’s the core of this. There are a lot of people that are alone in this fight against ALS, and it breaks my heart because I have all this amazing support. I want everybody in my shoes to be able to experience that. I want to share everything. I want them to have these amazing human beings in their lives like I have.
For anyone who knows someone who has this blasted disease—and not only ALS, but any motor neuron disease, like Parkinson’s or multiple sclerosis, it’s all nasty—help them any way you can. Laughing, good energy, prayers, all that stuff—help them any way you can. I want people to know that someone is there for them.
I’m not afraid of death. I feel very lucky because I turned 50 in February. I was living hot and fast all the time when I was younger, and I thought I was going to be dead by 25, that I’d die young and leave a pretty corpse. So I’ve already had 25 more years than I thought I might. Now May 7 is coming up. That’s the one-year mark from my diagnosis, and I hold on to that. I’m not going to be in a wheelchair. I’m still walking, and I’m still working behind the bar.
The truth of the matter is that I would be dead already if I did not have what I’m blessed with: friends, family, and the bar industry. I feel like I sound corny all the time, but it’s really from my heart. I just hope that nobody else goes through this alone.
—As told to Jake Emen
Dispatch
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Christopher Reed is a bartender at New York City’s Bar Goto. He moved to New York in 1999 to study acting and began bartending just to pay the bills. As time went on, however, he found the community he’d been looking for in acting, in the bar business instead. Despite his ALS diagnosis in May 2018, Reed will continue to work at Bar Goto as long as he’s able.
