Growing up, my brother was a real jerk. We grew up in a loving home in Eugene, Oregon. He’s one and a half years older than me, and we were one year apart in school. He was handsome and on the football team. I had acne, headgear, and pretty poor social skills. He was brilliant, and I would, as a non-genius, call him a genius. He could skim a chapter from a textbook, never do his homework, and ace the test while at every chance consciously making the teachers feel like idiots. He chose a very happy life consisting of daily doubles followed by eating hordes of McDonald’s in a frenzy with his teammates, then maybe a quick taunting of me and my friends while we huddled to share our (really good) poetry (freestyle super-inventive stuff — I can post if anyone’s interested lmk).
When he was 17, he started to have some tingling sensations in one of his legs. It would bother him when he drove. Then it progressed to numbness. He ignored it for as long as he could and then eventually asked to go to the doctor.
The doctor asked him some vague preliminary questions, and after they did an MRI, my brother confidently asked, “Do I have multiple sclerosis?” Baffled, the doctor asked how he even knew what that was. Naturally, my brother had read a little bit about it in a textbook once.
The tests came back a few weeks later, and we found out he had over 40 active rotting lesions on his brain due to multiple sclerosis. Goddamn genius jerk diagnosed himself. (Whatever. I’m smart in other ways.)
That’s when my brother’s life started to end. Yep, that was dramatic, but I’m writing this, and I’m an artist, so shut up.
Multiple sclerosis is an autoimmune disease — when your body gets confused and tells its immune system to attack itself. We hear about a lot of people having MS leading great, normal lives and “staying strong.” But that just wasn’t his story. Males get MS less often than women (one out of every three), but they usually have a much more aggressive form. But the very few rare males who have MS in their youth don’t stand a very good chance at all.
I grew up fast and had a life to live, right? I moved across the country to go to some New York City art school where I could huddle with even more sweaty acne-faced poets and pretend like I was going to experiment with my sexuality, which I definitely chickened out of. I would go home for holidays to a shattered and sad family that revolved around making sure my brother was okay. And I wanted that, too. I wanted it so badly that I would jog back to the airport and hurl myself on a plane so I wouldn’t have to think about it until goddamn, fuck, it’s Christmas already?
He wasn’t okay. After his diagnosis in 2005, he quickly lost all his youthful football-player muscles. By 2007, he couldn’t walk without a cane. And even then, he couldn't walk far. Soon he couldn’t even stand for more than a minute. His eyes were sunken in, he lost over 40 pounds, and that once-rowdy teenager looked like an old man. It broke every single one of our hearts every time we looked at him. Hundreds of times a day our hearts would break into a million pieces hidden inside our chest and behind smiles that said, “Pfff, you’re FINE. Let’s go see the new Star Wars.”
We tried everything, all the medications, the ones that poisoned him and made him sick every day. And for what? He was just getting worse. Rapidly. More rapidly than all those stories we read of people being FINE. It made me furious. FUHHHck those people! Sorry sorry, good for you, but still.
By 2010, he had stopped taking any medication. He was the first of us to come to terms with his dying. He had accepted that he wasn’t going to live a full life; he was only 24 and very soon going to be in a wheelchair full-time and then after that he would just wither away. So why not start now?
Over the next three years, he slowly deteriorated while watching me flourish into a snobby New York City hipster. I was doing so well! I discovered soup dumplings! I had great friends and a fearless life full of grand new experiences every day. He never once felt jealous. He would only ever tell me how impressed he was and how stupid my clothes were. And there was that quavering smile again: “Shut UP! Let’s rent a Die Hard.” At the first chance I would run away and get on that plane back to my wonderful life that I was convinced I didn’t deserve.
Somewhere along the way, we all gave up. We stopped reading articles, stopped talking about it, we just kept living right next to this leaching demon and tried to ignore it. I know that’s not what you want to hear. But it happened. It was too hard to hope, too defeating to try, and just easier to grieve and slowly let our broken heart pieces wither away with him.
My mom remodeled an apartment to be entirely wheelchair accessible, equipped with one of those sad weird bathtubs you can sit upright in. She thought he would live there the rest of his short, unlived life. She came to terms, and knew in her broken heart that she would one day bury him.
Then, in 2013, one of those people with multiple sclerosis who were doing FINE reached out to my mom to tell her about a treatment that could stop MS. This entire time we had only ever tried to just slow it down. We’d never even dreamed of the word “stop” or “cure.” That was bullshit.
Turns out it was REAL shit! There was a doctor in Chicago at Northwestern University’s Feinberg School of Medicine taking around 80 or so patients a year for a treatment called HSCT. The treatment was already FDA-approved to treat certain cancers, but it was discovered that it also worked to stop MS and over 50 other autoimmune diseases in their tracks: scleroderma, rheumatoid arthritis, CIDP, and more.
You can look it up, but here’s the non-genius explanation: The HSCT procedure starts by extracting stem cells from the patient and storing them for later use. Yes, adults still have stem cells, which are essentially blank-slate cells that can grow to be any kind of healthy cell in the entire body. The patient then undergoes chemotherapy, which eradicates the immune system. When the patient has zero immune system (therefore zero autoimmune disease), the stem cells are reintroduced into the body. These stem cells breed healthy cells and rebuild the immune system from scratch. Then the body simply has no memory of the previous MS. It’s like rebooting the entire immune system. Boom! You’re a healthy person.
My mother relentlessly called the doctor’s office 24 hours a day for weeks at a time until they agreed to see my brother. The fact that he even got a spot in the program was a miracle. The fact that his Medicare covered it when it would cost 150K otherwise was an even bigger miracle. But it was still hard to convince him to do it. Imagine finally coming to terms with slowly dying for the rest of your life, and then someone tells you about something like this. Well, we were all a little hesitant. It was hard to muster hope after losing it little by little over 10 years.
But we did it. He was in Chicago for three months getting chemotherapy and living out of a hotel room with my mom. He lost all of his hair and was honestly a frightening sight. I came for Thanksgiving to sleep on the couch, and our feast consisted of the leftover free breakfast we had hoarded from the lobby that morning. Not for financial reasons, just because we’re lazy, and OMG Chicago is cold! Does everyone know how it gets FREAKING COLD there?!
He had arrived in a wheelchair, and after three of the hardest months of his overall pretty shitty life, he walked out of the hospital and didn't have MS anymore. Six months later, he was jaunting to the gym for his weekly physical rehab. He goes back to Chicago every year to make sure his it hasn’t returned. But it’s been four years, and he still has no signs of MS. He no longer looks like a shriveled ghost; he’s gained 30 pounds, stands up straight, and, at 31, resembles a grown-ass man for the first time in his life.
So why doesn’t everyone know about HSCT? Why are only 80 people receiving this treatment a year? I love to rant extremely non-genius conspiracy theories about how HSCT receives little funding from the National Institutes of Health because it has to compete with Big Pharma and the creation of new medicines — medicines that cost about $5,000 per month and must be taken indefinitely. And as the people who receive HSCT no longer need to buy medication for the rest of their lives, this treatment takes money away from Big Pharma. I don’t think it takes a genius to see the conspiracy...
In other parts of the (less-corrupt) world like Canada, Germany, Singapore and Israel, the treatment is catching on like wildfire. But here, my brother was one of fewer than 300 people in the US at the time who had received this procedure for MS. Four hundred thousand people in the US have MS, and 300,000 people have scleroderma. These are just two of over 50 deadly diseases HSCT can stop. We’re talking about millions of lives.
To put that into perspective: We saw what the Ice Bucket Challenge did for ALS research. ALS is considered an “orphan disease,” as only 30,000 people in America have it. And yet they raised more than $100 million to fund research for a cure that doesn’t even exist yet. Yes, people who suffer from ALS need help too. I’m not a monster! But HSCT is real right now, and there are millions of people in the US whose lives can be saved right now. Where’s our $100 mill?!
With every accomplishment in my life — graduating, getting a job, moving in with my boyfriend — my first fleeting afterthought was always, My brother will never feel this. Then sadness and guilt would set in. Now he’s finally starting his life. Going to college, outsmarting his teachers, and dating. And it feels like my life is starting, too.
I’m excited to fly home to see my family now. Over the last four years, our hearts have slowly mended as we watched my brother get better; walking, laughing, and hoping for the first time. My brother and I walk to smelly breweries where people know his name. We go shopping and do Tinder photoshoots. He still lives in that apartment meant for that dying person and we make fun of it. We laugh and joke to ward off the ghosts that still haunt us and scare us and make us uneasy in this new life. Man I hate looking at that weird, ugly, dusty bathtub.
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