Birthdays Are Important
Twice a day for two years, Sarah Langs drank a bitter, brown sludge-like concoction that she called “her potion” in the hopes that it would extend her life by at least a few weeks. Sarah has ALS, a condition that is causing her body to rapidly calcify itself.
The potion she drank to give herself and those around her a little more time turned out to be a medical bust1. The potion wasn’t going to change her lifespan, and it certainly wasn’t going to alleviate her condition.
The sludge saga is the only time I’ve seen Sarah show visceral frustration with the cruelty of her condition. She’d swallowed a bunch of hope that tasted like garbage — a frustratingly disappointing endeavor that was worth it to her because Sarah loves being alive more than anyone I know.
But it wasn’t her own experience with the sludge that really moved her: She was enraged on behalf of women who had decided to take this experimental medication that prevented them from breastfeeding, robbing them of an important bonding experience with their children. They are women who hoped for just a few more months to spend with their children. In the end, they had sacrificed some of the most precious moments of their lives for no benefit.
She worried that the failed experiment with the potion would make the FDA more reluctant to invest in future potential ALS treatments, pushing a potential cure even farther away. At least she was done drinking the sludge.
This is Sarah, my compassionate friend who was struck with a cosmically unfair disease during what should have been the best years of her life. Today is her 32nd birthday. She wishes for two things: That you, her friends and readers, would value birthdays the way she does now — and to raise awareness that ALS is not incurable, it’s just underfunded.
“Birthdays are important,” Sarah says every year. It’s a position that predates her ALS diagnosis; she really, really loves birthdays. She posts countdowns to her own birthday on her Instagram stories. She does this not as some guilt-trip reminder to the rest of us, but in the way a kid crosses off days on a calendar before their trip to Disneyland. She loves your birthday, too. She loves birthdays in a way that I can’t understand — I hate the annual reckoning with the passage of time!
But Sarah is right. We’re all on the clock, and celebrating the mere act of living is something worth doing. I heard Sarah’s voice in my mind during my recent 35th birthday (even though I forgot to respond to her happy birthday text, whoops). I sulked around Manhattan, wondering what to do with the rest of my life. But to create misery out of a milestone would offend my friend’s innate optimistic sensibilities and do a disservice to my love for her.
I celebrated the day in my own way: Taking a stoned nap in a public park before seeing a strange surrealist film2 that ponders on the concept of community and the idea that a human life has some innate meaning that we could one day be lucky enough to find. I got a little bit sunburned. I slept until 4 p.m. the next day.
It’s not the way I think Sarah would spend her own birthday, but she encourages everyone around her to embrace the simple satisfactions in the great project of living. Do you know how much I have to respect someone to act on their advocacy of optimism?
ALS is not a chronic condition, as it is sometimes described by writers and reporters whose careers are supposed to be built on linguistic precision. It is a terminal illness. There is no cure for ALS yet. There is no cure on the horizon. A cure — or even a significant means of intervention — is even farther off now. The Trump administration is making financial cuts to scientific research that is meant to preserve and extend lives.
Sarah knows that a miracle is unlikely for her. But she hopes that she can at least advocate for scientists and doctors to continue searching for a cure — and that people understand that ALS is not just a disease for older men who have already had a fair run of a good life. I’ve watched her physically deteriorate over the span of just a few years. My liveliest friend, stuck in a body that is atrophying.
I want to sling arrows into the sky, attempting to pierce the soul of some omnipotent power that decided to inflict this disease on a person I love. I’d detonate a grenade at the injustice factory if I could make it real. I wish material harm to every person in big pharma and the federal government who is failing at their responsibility to give me more time with my friend. But there isn’t a grand conspiracy against Sarah, who is a bright beaming light in the lives of everyone who knows her. She’s just a statistical outlier.
This description of Sarah isn’t some pre-eulogistic fluff. There are many mean, annoying, and stupid people who get cursed with a terminal illness. It’s a truth that gets written around in obituaries, but I have the great fortune that my friend is sincerely and firmly not one of them.
Sarah is the most exuberant baseball and statistic loving dork anyone who knows her has ever met. She has a sterling reputation amongst literally every person who has worked or interacted with her in an industry full of embittered and self-serving people. She spreads passion and enthusiasm in a world full of criticism and cynicism. The only part of Sarah’s circumstances that amuses me is that when it comes to baseball, she absolutely loves a statistical outlier.
Sarah loves celebrating surprising human feats and the experience of witnessing something unexpected. For this, she chose the right profession. Baseball is a sport full of hijinks and unpredictable outcomes. When one of these events occurs, she rushes to search the entire history of the sport to see if, or when, this event has happened before. She loudly celebrates people beating the odds.
Sarah’s passion for baseball and numbers (dork) is accompanied by her love for her equally enthusiastic parents3, her partner Matt and her longtime friends, a good pair of Air Force 1s, and maybe some red velvet cake. She also loves dogs. She used to love running half-marathons.
ALS advocacy is a responsibility that does not come naturally for someone who is most comfortable helping others look smart and informed. Sarah mostly sticks to boosting the voices of other women suffering from this disease. She doesn’t take to the internet to complain about her condition or the physical and emotional pain that comes with this wildfire of a terminal illness. I don’t know what she feels in her body every day, but I see its effects and all the things it takes from her.
My ideal process for writing this piece would be to interview Sarah over the phone — it is her preference, too. But her voice has weakened to the point where she reluctantly has to answer my questions over text. It’s a cold medium for two chatty girls who love to connect. You should also know that Sarah would never write this piece, but is gracious enough to allow me to be pissed off in print.
I want you all to know what the fuck is happening to one single person who has been cursed with this fatal disease. I want you all to know that her scary smart mind is being censored by the cruelties of ALS. I want you all to know that those of us who love Sarah are always in an active state of grief and frustration at our collective powerlessness over ALS.
Long before her diagnosis, Sarah encouraged those around her to be open and earnest about the love we hold for the other people in our lives. She led by example, walking around like some bizarre alien of kindness while the rest of us stifled our sentimentality.
“Tell people what they mean to you” is a Sarah catchphrase that I finally acquiesced to when her own circumstances made it more of a parable than a suggestion.
I now intentionally tell people what I think makes them special. Or at least, I try to do this — I spew plenty of criticisms, too, so my earnestness probably seems like some manic deviation from the norm. It often makes people uncomfortable. Telling people why and how strongly you care about them is an unusual way to behave. It tends to challenge their innate insecurities. I don’t care if they squirm, they have to hear it.
When they squirm too much or protest or ask why my Eeyore ass is being earnest in public, I tell them the truth: My friend is dying, and sincerity is one way that I can honor her spirit now and forever.
Describing my friend as dying only heightens the discomfort of the interaction. It’d be more palatable to hear “my friend has ALS.” The two phrases mean the same thing. But Sarah has to grapple with not just the emotional reality of ALS, but the psychotically cruel physical symptoms of it, too. The absolute least we can do is be explicit about what she’s experiencing.
Sarah’s diagnosis has changed how frequently I get to see her, or how easy it is for her to explain her dork statistics on a podcast or on television. But she’s still just my friend, not my sick friend. In some ways, her physical ailment has made it easier for us to tease her and her humility.
A highlight of my own life was seeing Sarah at Yankee Stadium on Lou Gehrig Day a few years ago. The docent at the museum inside the stadium placed one of Gehrig’s game-worn old wool Yankees hats on Sarah’s head. It was objectively kind of bizarre, and not the way museum people tend to treat antique artifacts.
But her partner rolled her into the center of the big group of people there for Gehrig Day and parked her wheelchair. He laughed as he walked away, knowing she couldn’t make her own escape. It’s sort of the way we have to operate as Sarah’s friends: She’ll only accept being the center of attention if you trap her into it. It’s a really fun game to play when your friend’s strongest traits are service and generosity.
In the years since her diagnosis, Sarah has frequently been described as “an inspiration,” which she is in many ways. She’s inspired me to try to be a little bit kinder, a little bit more appreciative of the many things I take for granted. But those have been her values throughout our friendship. That’s just Sarah.
Her experience of enduring ALS is not something I find inspiring. The social need to turn adversity into a sign of character and strength doesn’t sit right with me. Sarah has strength and character, but it’s not because she has ALS. It’s because she’s always been a remarkable person who now is stuck with remarkable misfortune.
Writing a long essay about Sarah is probably the worst way to honor my modest friend on her favorite day of the year. But that’s too bad, because it’s my blog and I have some serious shit to say. ALS is not chronic, it’s fatal. The people who experience it are rarely given reasons for hope, and sometimes that bitter, sludge-like hope is determined to be medically ineffective.
So now it’s my turn to say the Sarah-isms that she had to repeat consistently for years to get them to stick in my mind. Celebrate your birthday. Tell people what they mean to you. Don’t do it just because my friend is sick and I’m threatening to haunt the consciences of people who shield themselves from the cold reality of terminal illnesses.
Do it because Sarah has demonstrated that being an earnest dork can actually be cool. She’s a statistical outlier there, too.
The Holy Mountain (1973)
Hi Liise-anne!
That was really beautiful. Happy Birthday to Sarah, baseball is the best!