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Surviving The Boston Marathon Bombings While Facing TBI and Medical Gaslighting

“As I literally lived on his couch, with my port-a-potty in his living room, my partner eventually applied for permanent disability status for me. But, even the doctor gaslighted me, told me I was physically able to work, and reported the same to the government. In reality, I was so dizzy with vertigo, this same doctor refused to let me walk to and from our car, by myself, fearing I’d fall and sue!”

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Hello! Who are you?

I’m Lynn Julian Crisci, and I am an injured survivor of the Boston Marathon bombing, living with permanent brain injury, hearing loss, neck and lower back injuries, and severe complex PTSD. This terrorist attack permanently affected me, my neighborhood, Boston, Massachusetts, the US, and the world forever.

But, I’m always one to try to find the “silver lining,” of every event, in order to have something for which to be grateful. I truly believe that gratefulness is the key to happiness.

One of the ways I use this event to change my life and that of others is by becoming a Patient Advocate/Ambassador. I’m celebrating 12 years volunteering for many international organizations, helping others with Traumatic Brain Injury (TBI), chronic migraine, hearing loss, PTSD, terrorism survivors, and my 8 rare diseases/conditions. Telling my story gives my life a greater sense of purpose, and is a huge part of my resilience and recovery, from a wheelchair to walking to running the Boston Marathon.

What is your struggle and when did it start?

After a stage accident in 2006, I was left disabled, in a wheelchair, due to a “mild” brain injury, and two undiagnosed Perilymph Fistulas in my left ear, in addition to suffering from undiagnosed Hypermobile Ehlers-Danlos Syndrome (hEDS) and Fibromyalgia.

I stepped on a cord, slick with fried food grease, fell backward, and was knocked unconscious. My injuries left me undiagnosed and bed-bound, for years. I suffered from chronic brain fog, daily migraine, vertigo, nausea, vomiting, neck and back pain, irritability, tearfulness, tinnitus, and light and sound sensitivity.

All of these are classic symptoms of concussion, which is a brain injury. Yet, my doctors did not diagnose my Traumatic Brain Injury (TBI), and insisted I was just “depressed”. They gaslighted me and left me untreated. These new medical challenges, on top of undiagnosed hEDS, left my body too weak to walk, unable to lie flat to sleep due to vertigo, and too nauseated to hold down food… until I was eventually hospitalized.

How did this struggle make you feel at your worst moments?

It took me nine months of sleepless nights, daily vomiting, and sheer torture before I finally got a diagnosis of TBI. As a result, I never implemented the “Concussion Protocol,” which prevented my brain from healing.

As I literally lived on his couch, with my port-a-potty in his living room, my partner eventually applied for permanent disability status for me. But, even the doctor gaslighted me, told me I was physically able to work, and reported the same to the government. In reality, I was so dizzy with vertigo, this same doctor refused to let me walk to and from our car, by myself, fearing I’d fall and sue! 

After finally getting diagnosed, a year later, seeking medical attention, and personally raising the money to pay for it out of pocket, I learned tough lessons about “pre-existing injuries” too.

Since I had sciatica previously, even though my lower back was not in pain at the time, my new lower back injury was not initially considered a result of the bombing. The same fallacy was applied to my new brain injury, due to blast force trauma. It was not considered “new,” even though previous TBIs, and Ehlers-Danlos syndromes (EDS), both make you more vulnerable to new TBIs.

A doctor even claimed my sudden onset, permanent hearing loss, resulting in hearing aids, was due to EDS, and not the bomb that immediately preceded it. 

Internal “invisible injuries” are the hardest to diagnose, and even harder to heal. I researched and advocated until I was properly diagnosed. Yet, I continue to be treated as if I’m on trial, guilty-until-proven-innocent, trying to validate my injuries to every new specialist I’m forced to see. I have no scars to show medical professionals, or the media, as evidence of my injuries. My injuries are invisible to everyone but me.

I later learned that sustaining a brain injury, in and of itself, leaves you much more vulnerable to sustaining another brain injury. 

Having hEDS, although still undiagnosed, left me with “broken” collagen and a softer, more vulnerable brain too. Despite my injuries, or because of them, I trained to run for the 1st time, having never run at all in my life, struggling with daily, severe, chronic pain and panic attacks. I finished the 2014 Boston Marathon and was named one of the “Most Inspirational Women to Ever Run The Boston Marathon” in 2014 by Self Magazine.

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Was there a moment when you started to turn things around?

Six months after my stage accident, I finally found a female doctor who believed me, and diagnosed my inner ear fistulas. She referred me to a surgeon willing to repair them.

Waking up from that surgery was like a dream. I ran to our car, literally spinning in circles with joy! Unbeknownst to me, my joy would be short-lived. I was given Cipro Floxin antibiotic ear drops, which sent me into several months of excruciating head pain, resulting in what I now know to be symptoms of a Cerebral Spinal Fluid (CSF) leak. 

I also now realize these holes may have happened due to broken collagen from hEDS. This medication now carries a black-box warning not to prescribe it to anyone like me with a Connective Tissue Disorder (CTD).

Four months later, on one of my frequent-flyer trips to the ER, a major Boston hospital admitted me and did a spinal tap. I was curled up on the ER floor, overwhelmed with pain, and they thought I had an infection going to my brain. 

Only due to my own advocacy and research, I now think I suffered a Cerebral Spinal Fluid (CSF) leak due to that procedure, which is common for folks with EDS. But, I was undiagnosed. I spiraled into the worst “Rebound Headache” of my life, for two weeks in two hospitals.

But, again, I went undiagnosed, got gaslighted, and was accused of “attention seeking.” The hospital had never heard of anyone getting a Rebound Headache after a spinal tap. Rather than checking for a CSF leak, they ran expensive tests, decided I had post-concussive syndrome and depression, and transferred me to a rehab hospital. Ignoring, rather than treating, my Rebound Headache directly contributed to hard-wiring my brain to magnify and repeat pain signals. I now live with severe, daily headaches, chronic migraine, and SUNCT headaches.

What steps did you take to overcome your struggle?

I saw a geneticist, a self-proclaimed, Boston EDS expert, who made it abundantly clear to me that he did not like that a mere dermatologist diagnosed me with possible EDS.

Seemingly as a punishment, for three years in a row, he reported to my medical specialists, “She has no known connective tissue disorder.”

What I did have was the following: multiple organ prolapses; chronic pain, from hypermobile joints that subluxed daily (partial dislocations); a dislocated jaw; daily headaches; chronic migraine; Mast Cell Activation Syndrome, severe allergies and intolerances to various foods and everyday items; and velvety soft, stretchy, almost hairless skin.

I finally found the courage to go to a random geneticist, at MGH Boston, who immediately diagnosed me with hEDS, claiming I was a “9 out of 9 on the Beighton Scale,” which is the official test.

The lesson? Do not stop advocating for yourself until you get the help you know you deserve! I knew that petty man was gaslighting me, simply because his ego was bruised by a dermatologist diagnosing me before him. Solely because of his retaliatory behavior, I suffered, needlessly, for three more years, without a diagnosis, treatment plan, or support of any kind.

Since there is no cure for EDS yet, I’m often asked, “Why do you need a diagnosis?” Being fully and correctly diagnosed in your medical records validates your symptoms and protects you from the “Medical Gaslighting” I endured.

Have you shared any of this with people around you in real life?

I am a habitual “over-sharer” of even my most intimate medical moments, on social media and in person. This is not always well-received by family or friends, as it makes people uncomfortable because they don’t know how to help.

I say to them “You just did…”

By listening and making me feel seen and heard. That’s all anyone really wants. It’s 18 years after my stage accident, and I’m still not fully diagnosed. I’m labeled with 8 rare diseases and conditions: hEDS, Mast Cell Disease, SUNCT Headaches, craniocervical instability, Occult Tethered Cord, Nummular Eczema, Tarlov Cysts, Burning Mouth Syndrome, and CYP2C19 poor metabolizer.

I also live with Fibromyalgia, Brain Injury, Chronic Migraine, daily headache, Dysautonomia, Long Covid, occipital neuralgia, asthma, IBS, EBV, FND, PTSD, Arthritis, Raynaud’s Syndrome, Livedo Reticularis, eczema, hives, osteoporosis, alopecia, allodynia, hyperacusis, photophobia, exercise intolerance, hearing loss, nystagmus, and vision loss.

I still struggle with the same symptoms after the same situations: airplane flights, driving through the mountains, barometric pressure changes, sneezing fits, coughing, vomiting (due to migraine), and anything that creates pressure in my head.

I’m still the same fierce female fighter I’ve always been. I am chronically empowered to be the change I wish to see in the world!

If you could give a single piece of advice to someone else that struggles, what would that be?

My grandmother taught me that there are no mistakes, only lessons. What did you learn from it? The lesson from my story? Be your own patient advocate, and don’t stop advocating until you get the medical help you deserve!

Do not tough it out alone either. Find a national organization that supports your cause and diagnoses, and find strength through their guidance and support.

What have been the most influential books, podcasts, YouTube channels, or other resources for you?

Chronically Empowered by Jessica Cassick: I am one of 60+ exceptional, worldwide Chronic Illness Warriors, who contributed a chapter, to describe how they embrace their chronic illnesses while providing educational information about them along the way. Influential Artists, Entrepreneurs, Advocates, and more celebrate how they have been able to adapt to their limitations and overcome their adversity, describe what they love most about themselves, and share advice for other warriors. Collaborating to paint an extraordinary picture of what it truly means to be resilient, and thrive beyond a diagnosis through passion and advocacy.

Outrunning The Demons: Lives Transformed Through Running by Phil Hewitt: A chapter of the book details my personal survival story from wheelchair to walking To running the Boston Marathon! Each chapter features one survivor’s story of how running healed both their physical injuries and PTSD.

Surviving Brain Injury: Stories of Strength and Inspiration by Amy Zellmer: I wrote a chapter of the book with lessons learned of resiliency that can be applied to hard times of change in everyone’s life.

Where can we go to learn more about you?

I believe in strength through unity. You can find me on my own website, LinkedIn, Instagram, YouTube, Facebook and Twitter.

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Hugo Huijer AuthorLinkedIn Logo

Founder of Tracking Happiness, with over 100 interviews and a focus on practical advice, our content extends beyond happiness tracking. Hailing from the Netherlands, I’m a skateboarding enthusiast, marathon runner, and a dedicated data junkie, tracking my happiness for over a decade.