An accident stopped my brother-in-law in his tracks, and inspired us to keep pushing forward
My mother says the same thing every time our family toasts a special occasion. Whether it’s Thanksgiving, Christmas or a birthday, she’ll say, “We’re so lucky that we’re all healthy and that nothing really bad has happened to any of us!”
That luck ran out on Jan. 13th, when my brother-in-law — who has been married to my twin sister Anne for 18 years — had an accident. He was taking his bike out for a test run after getting some new parts installed; Juan is an avid cyclist and always wheeling and dealing for new gear to add to his bicycles. This one was a pro-grade, lightweight model that he’d had for about a year. The seat, brakes and a few other parts had been upgraded.
If it wasn’t for the nanny pushing her stroller down Hillside Terrace that day, we might never have known what’d happened. She saw him coming down a long, shallow hill (“He wasn’t going that fast,” she told us later, when we met her at the crash site), and then suddenly it was as if he “hit an invisible wall.” The bike flipped over his head and he went face down onto the pavement. He was instantly knocked out.
She called 911 and the ambulance arrived minutes later. After getting an urgent call from a hospital social worker, Anne called me — stuck in LA traffic on a Monday afternoon and panicking. All they told her was that it was “serious” and that she needed to get to the hospital immediately. I stayed on the phone with her until she got there.
They say life changes in an instant, and while I’ve always had a healthy sense of this, nothing can prepare you for the moment it happens to your family.
For the next three weeks, Juan remained in a coma. Although he was wearing a helmet, he suffered a type of Traumatic Brain Injury (TBI) called a Diffuse Axonal Injury (DAI), which — if you make the mistake of Googling it — is the most severe kind. Lying in an ICU bed, he had tubes everywhere and a brain catheter to monitor for secondary swelling. Apart from his DAI, he had a protruding black eye, a fractured cheekbone, a split eyebrow and lip, a fractured clavicle and a small fracture in his spinal column. My sister stayed with him every night for the first week, sleeping (or not) in a chair that converted into a small bed.
Within a day of the accident, she set out to learn everything she could about TBIs and DAIs. I did the same. As Juan is a well-known musician (he played bass in The Mars Volta and is the current bassist for Marilyn Manson), my sister decided to post about his accident on his Instagram, mainly in an effort to get the word out and source more information. Within hours, TBI survivors, neurologists, trauma doctors and many others with experience in brain injuries reached out. She put together folders on Google Drive and we started storing the information we collected; from studies on fish oil and its impact on brain healing to lists of the best brain trauma rehab facilities in California, we documented everything.
TBI survivors and their families have been the most valuable source of information. While many of their injuries and stories are different, there are a few consistent themes, the most significant being that we will need to be Juan’s loudest, pushiest advocates if we want to give him the best chance at recovery. Emails from family members of those who not only survived his type of TBI but also have managed to live full, whole lives are often the only thing that gets my sister through some of her darkest days.
While she’s remained remarkably positive, there are many moments of anguish and “gut punches” that leave Anne feeling helpless. The pain creeps up sporadically and without warning. A game of Catan, which her friends organized as a cheerful distraction, triggered a tearful meltdown in the bathroom. Maybe it was because she’d argued with a nurse earlier or because it was Valentine’s Day. Or maybe it is because everything about this whole experience is utterly overwhelming.
No two brain injuries are alike, which means no two recovery stories are either. Neurologists are understandably hesitant to offer a specific prognosis, especially this early in the recovery process. “We don’t provide any statistics,” one neurologist told me and my sister, “because I’ve seen people who, medically, I would have said had no chance at recovery who wake up and start speaking normally.” Of course, for every story like this, there are plenty of grim tales of how many never recover beyond a vegetative state. Managing expectations seems to be the order of the day, no matter how positive the progress may be. The standard response from medical doctors is one that ensures you’re always acutely aware of the worst-case scenario.
This has become more apparent over the last couple of weeks, after Juan was discharged from the ICU. The only option my sister was given by his insurance provider was a skilled nursing facility, one that seems designed more for those in the final stage of their lives (most of the patients are quite elderly). While it has a rehabilitation unit, and well-meaning and professional staff, it doesn’t have a focus on brain trauma patients. The care Juan receives is good, but generic. We keep reading about how specialized therapies and treatment during the first 2–3 months is critical for TBI patient recovery.
My sister has found a temporary solution by paying out-of-pocket for a physical therapist from the UCLA Brain Trauma Center to come in twice a week and has pushed to include a specific type of fish oil to be added to Juan’s daily food. Still, the small but significant challenges of an old, decaying facility clearly lacking in funds can eat away at the soul. Yesterday, as I watched a staff member wrangle and wrap duct tape around a broken air conditioning tube in Juan’s stuffy room, I looked at Anne and we both just knew. We have to get him out of here.
That’s the project for this week; my sister will be the squeaky wheel (she’s become very good at it!) and push his insurance provider for other options. She’ll tap her newly formed network of neurologists and TBI survivors and healthcare professionals for advice and guidance. She will continue her fundraising efforts, knowing she’ll need to supplement the cost or even pay it all out of pocket. I’ll make phone calls and get brochures, feed the cats at her house, run errands and do whatever she needs to help her with the process. I imagine there will be tense phone calls and strongly worded emails and certainly some tears of frustration. It’s a hustle, but we’ll get there. We have to.
It requires more than simply staying positive; it’s about keeping our eyes on the prize, which in this case is the image of Juan being home, talking, walking, playing with the cats and being happy again. It’s about maintaining forward momentum, no matter how sluggish. It’s about celebrating the little wins, like when Juan turned his head and looked directly into Anne’s eyes for the first time or when he reached up to scratch his chin, showing “purposeful” movement. And it’s about not letting the system and all the red tape and the general clusterf*ckery of it all get us down.
The support of family, friends, colleagues, the music community and complete strangers has kept the train from skidding off the tracks on more than a few occasions. There are the heartfelt comments fans from all over the world have left on Juan’s social media accounts, and the many emails of support my sister has received from people with useful insights, doctors’ referrals and messages of hope. There is also the close circle of friends — Anne and Juan’s tribe of about a dozen people — who play music for Juan, take Anne out to eat after long days at the facility and who pick me up at Burbank airport, even early on a Sunday morning. My manager has been incredibly flexible about letting me work remotely so that I can be in LA with my sister. And my husband and dog have been holding down the fort in Portland, Oregon during my many weeks down south, with no complaints. This is the village people talk about, and strength they provide is immeasurable.
While this is the worst thing to ever happen to our family, I know that things could be worse. A week after Juan’s accident, a 29-year-old colleague of mine with a young son lost her cancer battle. Just 13 days later, Kobe Bryant, his young daughter and seven others who were loved and cherished by their families, perished in a helicopter crash. And one of the friends in the aforementioned tribe broke the news to my sister two weeks into this that he had been diagnosed with thyroid cancer but didn’t want to tell her as she already had so much to deal with.
We still have Juan, and while his gregarious spirit is hibernating for now, we’re confident he will emerge eventually. My coffee-swilling, globe-trotting, hip-hop-obsessed, sushi-loving, loud-talking brother-in-law will be back. It may take a while, but it will happen.
“I can already hear him complaining during rehabilitation,” said his best friend Nick, laughing.
I can’t wait for the day.