An advocate’s fight across the finish line: learning to live with multiple rare conditions and the trauma of the Boston Marathon bombing
Lynn Julian Crisci has faced multiple health challenges, from birth onwards. In 2013, she was caught up in the Boston Marathon bombings. Here, Lynn reflects on her journey to physical and mental recovery and explains why her advocacy efforts—for many different organisations—have been an important part of her healing process
By Joe Rumney
The star in the darkness
Lynn Julian Crisci faced many different problems with her health, including hypermobility from birth and migraine from puberty, but until well into adulthood, she remained “not fully diagnosed and highly symptomatic”. It was not until her 30s that she was diagnosed with fibromyalgia and chronic pain.
While living with the symptom burden of these several conditions, Lynn launched a singing career as Cookie Cutter Girl, a “21st century pop superhero”, in 2005. With little money to fund a successful pop career, she found managing her career difficult, but her hard graft performing on local radio stations and compilation CDs eventually led to—“a small miracle”—an appearance in Rolling Stone Magazine. There she was dubbed “Nashville’s version of Fiona Apple” (a Grammy-Award-winning American singer-songwriter).
However, Lynn’s rise to fame was cut short during her first big show. The stage was a “dangerous environment”, she says, and not long into the gig, she slipped, banged her head and lost consciousness”. The accident left Lynn with severe head injuries and perilymph fistula (a defect in the small, thin membranes in the ear)1 and she needed to use a wheelchair to get around.
“I was forced to refer myself to my own specialists for diagnosis, after six months of not being able to lie down, or eat, without provoking vertigo.”
As Lynn slowly learned how to walk again over the next five years, she contended with other unexplained health problems. Despite living in Boston, which is well-served by teaching hospitals, Lynn needed to travel to three different states before being diagnosed with migraine in 2007 in Chicago, Illinois, and craniocervical instability (CCI) and occult tethered cord syndrome (OTCS) in 2021 at the Medical University of South Carolina. She was unofficially diagnosed with inherited hypermobile Ehlers-Danlos syndrome (hEDS), a rare disease, in 2019, after advocating for herself with specialists since 2012.
The Ehlers-Danlos syndromes (EDS) are a group of related disorders caused by different genetic defects in collagen, a strong, fibrous protein that is a fundamental building element for connective tissue.2
“I just kept doing my own research and joining organisations until I found specialists who I could present my symptoms to,” she says of her difficult path to these diagnoses. “I deserve an honorary degree for 15 years of unpaid medical research!”
Remarkably, as Lynn faced these many health challenges, she started performing in local acting projects, featuring in about a dozen short films.
The impact of the Boston Marathon bombing
“Mere months after I was walking without a cane, I became a survivor of the Boston Marathon bombing.”
Lynn moved to downtown Boston in 2009, and every April after that she revelled in the celebrations of the world-famous Boston Marathon. “It was like a million people having a party in my backyard,” she says.
Lynn would normally “fight for a space” on the corner of Boylston Street, where the race ends, and stand among the crowds to watch the large screen displaying the finish line. But on 15 April 2013, ten years ago, with her mobility still limited, she decided to take residence outside a restaurant.
“It turns out there was only one table where you could see the finish line. I had my heart set on that table.” She arrived early and waited for her friends.
Tragically, at 2.49pm, two terrorist bombs detonated nearby, with devastating effect. Three people were killed: two young women and an eight-year-old boy. More than 260 others were injured, and more than a dozen people who were closer to the bomb than Lynn needed amputations. For Lynn, the explosion caused serious injury to her brain, neck and back, along with permanent hearing loss.
Although Lynn was in severe pain, she waited to go to the emergency room until the next day—she didn’t want to take away services from anyone that was bleeding. After a long wait, a doctor diagnosed Lynn with anxiety, but Lynn knew this was wrong. “The symptoms were the same as before. I knew I had a head injury, but yet again, I didn’t get diagnosed.”
Although Lynn was in severe pain, she had to undertake her own research and refer herself to specialists until the next year to get diagnosed with brain injury.
Fighting across the finish line
The diagnosis resolved Lynn’s fears and questions, but it also brought unexpected problems. She knows many survivors from the bombing, who were closer to the bomb than she was and who lost limbs. These are her “second family”, she says. Unfortunately, however, some survivors didn’t believe Lynn had a brain injury.
This was, in part, due to international press about a woman who falsely claimed she had a brain injury from the bombing—she was lying to try to obtain money from a fund set up to aid survivors.
“One woman’s lie made everyone question the validity of every brain injury survivor from the Boston Marathon bombing,” Lynn says. “That was hard to deal with, knowing that people in my community had turned against me.”
Lynn began to struggle with her mental health and she was diagnosed with complex post-traumatic stress disorder (C-PTSD). Just getting through the day-to-day was exceedingly difficult at times. “Most people with PTSD are scared of guns, violence or terrorism—my brain is scared to get a coffee because the barista might challenge me about my order.”
Lynn found solace in her membership of a support group for survivors, whose spirits were lifted by an expected announcement. The group was offered free entry to run in the 2014 edition of the Boston Marathon.
The keen runners in the group were overjoyed and were “cheering and hugging” at the news—it was something they could do together to help them in their recovery from the terrible events of the preceding year. But Lynn, with so many conditions holding her back, including her brain injuries, could not see herself joining in, and that saddened her. It felt, she says, like “one more way to be excluded… I just skulked off to the bathroom and cried by myself.”
Over that weekend, Lynn concluded that she was “too stubborn” to let the opportunity pass. Taking part would be extraordinarily challenging, with her brain and neck injuries, partially dislocated shoulders, herniated disks, hearing loss and complex PTSD, but she felt that she almost had no choice: “I knew if I didn’t do this, I would be angry forever,” she says.
As the Boston winter turned to spring, race day approached. Before the event there was a great deal of talk of the bomb, and this triggered distressing memories for Lynn. But, on the day of the race, she was there on the start line ready to prove to herself that she was not defined by her many physical and mental health challenges.
The clattering of helicopters and the strobe lights from the trucks that led each group of runners did little to ease Lynn’s anxiety as she made her way along the 26.2 miles of the course—the emotional strain was as great as the physical one.
“I had a dissociative panic attack, on the final stretch, mistaking the cheering crowd for people screaming in panic. A running rep from Nike, Sarah Reinertson, had to patiently talk to me, through the last half a mile, to get me to cross the finish line.
“I kind of blacked out, but I remember crying a lot,” she recalls. With pride, she says, “I fought my way out of that wheelchair, and I fought my way across that finish line.”
A message of hope
Lynn’s example of perseverance is an inspiring one for others affected by rare or chronic conditions. For those with brain injuries, she has a message of hope: “If you’re newly diagnosed, that is not always going to be your life. The brain is a magnificent, miraculous adaptive organ. The first year is the worst year, but it’s going to get easier.”
In 2023, Lynn celebrates her tenth year as a volunteer patient advocate. She advocates for many different organisations. These include the Rare Disease Legislative Advocates (RDLA), via the Everylife Foundation; Headache on the Hill, via the Alliance for Headache Disorders Advocacy (AHDA); the Lyme Fly-In, via the Center For Lyme Action; Ravel Health; Strength To Strength, which supports victims of terrorist attacks from around the world; and the US Pain Foundation. She campaigns for better protection for hired workers in workplace safety laws and has also spoken at Harvard about chronic pain treatments.
“Advocacy gives my life a sense of purpose… like I’m making something good come from all the bad. Sharing your story is a form of therapy… it gives you control over the narrative… the power to advocate for yourself and to make a change in the world.”
References
[1] Perilymph Fistula. Vestibular Disorders Association. Accessed March 14, 2023. https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/perilymph-fistula/
[2] Ehlers Danlos Syndromes – Symptoms, Causes, Treatment | NORD. Accessed March 14, 2023. https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
