An accident stopped my brother-in-law

in his tracks, and inspired us to keep

pushing forward
76

Clare Kleinedler Follow

Feb 17 · 7 min read

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.
76

(L-R): My husband Cormac, me, Anne and Juan on New Year’s Eve 2019.

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

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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.

(L-R) My sister Anne, Juan and me at my wedding rehearsal dinner, 2012.

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
76
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

Me and Juan, when the Mars Volta played Hyde Park in London in 2012.
“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.
76

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.

 Traumatic Brain Injury Juan Alderete Di use Axonal Injury Coping Strategies

Cycling Accidents

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