Today would have been my brother John’s 55th birthday. Somewhere around September 6 of 2006, he felt flu-ish and asked his neighbor for some chicken soup (this can still be done in parts of New Hampshire). He went home, cooked the soup, ate some of it while seated on his couch, and then died of an aortic aneurysm. It was not soup-related.
John had a condition called Marfan Syndrome, which is a disease of the connective tissue. In both his case and my father’s, the aortic wall was compromised. When my father died of congestive heart failure, the condition definitely played a part but I also thought the result of his having worked in mills for a significant portion of his life, raising six kids, and not drinking enough were a factor. He was also diagnosed later in life, didn’t eat particularly well, and was fairly sedentary. I was diagnosed with Marfan Syndrome when I was 16. My father died at 71. I remember thinking that a lack of active cotton mills in my own lifestyle would probably give me at least 20 more years than he’d had.
That is why my brother’s death, the month before his 46th birthday, shook me up. I thought I’d lost at least 25 years. Without getting too deep into John’s history, though, he didn’t eat well, either, and was an underemployed recluse. He’d had a good job at New England tech pioneer Wang Labs in his twenties — he’d even bought a house at 24 — but when that company folded he couldn’t find a salary that compared. I think there were stressors in his life that he didn’t get a lot of relief from.
Me, I’m swimming in stress relief. Sometimes I have more relief than stress. Every morning I wake with a gratitude and hopefulness that has nothing to do with the thousands of dollars I’ve paid to Scientology. I eat plentiful, inexpensive produce here in California that I find having bought rich, expensive gas. One of my favorite pastimes is to turn on the water in the sink and then just leave the house for a few days. My children are delightful, each job I have is weird and challenging and, well, I have a lot to live for. My only, constant worry: Will the world stop buying what I’m selling? I suppose I could go back to washing dishes if that happens, but I don’t want to make my hobby my career.
As my own 46th birthday approaches, I turned to a website that caters to my interest in dates and OCD matters to find out how many days John had lived. I beat his record yesterday.
Naturally this does not mean I’m in the clear, but I admit that I was worried as the date approached. Marfan Syndrome is a spectrum disorder. Some people have it worse than others. It is speculated that both Abraham Lincoln and Osama bin Laden had it, and you know what happened to them. People with the condition tend to be unusually tall and long-limbed. They may have poor eyesight due to lens subluxation. Their feet may be weird (mine look like something Seth Brundle accidentally sent an extra time through the telepod). There are also aspects of the disorder that missed me (and my long-limbed, nearsighted children) entirely, like scoliosis, sleep apnea, and pyrokinesis.
When I or my kids check in at a hospital for something routine, the treatment team knows all about Marfan Syndrome. It’s not a rare condition, but they get excited. As humans are not a collection of free-floating orbs, connective tissue plays a role in everything. Sometimes the doctor will bring medical students and scholars of the occult to check out the bony spider family. Other times, like when my son injured his leg this summer, I made the staff at the tiny island hospital look up the condition, just in case, because no one had heard of it. I am asked to watch my cholesterol, keep stress down, monitor the size of my aorta with regular EKGs (it’s fine), and not play tackle football (mostly because getting an NFL franchise back to Los Angeles has been very stressful).
But mostly people think my children and I are just tall and have bad eyesight, and that’s fine. I rarely talk about Marfan Syndrome because I have other ways of drawing attention to myself. Also, it’s likely that complications from it will be the way I die, At 100. With proper care (and — I don’t know — crystals?), people with this condition, to the degree I have it, can achieve a statistically average lifespan, which I have every intention of exceeding.
Still, sometimes I feel that having this is like crossing the river with a scorpion on my back.
Marfan Syndrome has not prevented me from lifting, folding, walking, biking, fathering, breathing, swimming, sharking, or having a good time. And, despite my outlandish appearance, there has been no shortage of curiosity seekers willing to date and/or fall in love with me; I can make heavier women feel tiny. I can hold someone’s entire butt with one hand. My high palate, lack of Massachusetts accent, and Emerson College scholarship allows for a resonant, well-modulated speaking voice.
And so I think of my brother today. We look somewhat alike, but he was a handsome devil, with prematurely gray hair and a dress sense that I try to emulate. He was into gadgets at the dawn of DIY consumer electronics and built his own CB radio. We shared a room for a few years and I learned to love the Beatles as he’d play them while doing his homework. I don’t know what I’d do without The Beatles. Sure I would have heard them elsewhere, but I’m grateful to John for introducing me to them. I always think of him when I hear the first few bars of “Dear Prudence,” especially as the plane noises of “Back in the U.S.S.R.” fade away on the White Album. I remember opening and closing my eyes as a 6-year-old, watching him solder things under a reading lamp, late at night.
He was nerdy before it became cool to be nerdy. He was nerdy in a Getting A Box Full of Parts from Radio Shack kind of way. He was nerdy when it was still tolerated in school bylaws to beat people up for it, and he had been.
I think he had a tough childhood. Mine was less so because he showed me what to avoid.
Nevertheless, he got me my first Sanyo portable cassette player, cautioning me not to call it a Walkman (“The Sanyos are better than the Sonys but Sony has the patent on the word ‘Walkman,'” he said. “Just like when you call a flying disc a Frisbee even though Wham-O didn’t make it”) and taught me how to record an album onto a tape so I could listen to it while I rode my bike. The first album I did this with was The Who’s “Hooligans.” Upon hearing “Slip Kid” over the car radio during this fraught week, I got a little misty.
Once, when I got something in my eye and I couldn’t get it out, John had an idea.
“I’m going to throw you forward,” he said, “and when you land, it will hurt, and you’ll cry it out.”
“O.K.,” I said, warily.
He picked me up, threw me forward a few feet, and I started crying when I hit a tree. Whatever it was came right out.
“Thanks, John!” I said, sobbing.
[I redacted something here, upon request.]
John and I didn’t talk much as we got older. He never met my girlfriends, my children, or visited me in any of the cities I’ve lived. When my other brother, Andy, called to tell me John was dead (“We lost our brother,” were his words), I looked around at the room I was in — some ridiculous entertainment industry-adjacent job — and I thought he had missed out on the fun I was having. Maybe by birth order, maybe by temperament. I regret that he didn’t have the leverage to do the occasional ridiculous, soul-expanding thing.
There are little checks on my mortality each day, going in either direction. I remember pretty well the state of affairs in my life when I was my daughter’s or son’s age (I even have Facebook friends to remind me). They are much cooler people than I was at 8 or 11. On the other end, I’ve still got a few years to go before I am the age my father was when I was born. In terms of things lost as I’ve aged, I don’t look forward to eating my kids’ leftover Halloween candy as much.
To counteract any feelings of decline, I always have little projects going, like making the Costco chicken carcass currently in my refrigerator into soup (chicken soup) before it rots, and my spokesperson duties for Spay the Whales.
There’s people who die whom you’re close to, and then there’s people who made an impression before drifting out of your life, dying years later. John was like that for me, I lost a childhood friend this year, and I imagine I am that person to one or two people. I’m certain that if John were here today, he’d like my dog and be uncomfortable with everything else in my life. It would still be really nice to see him, though.