Boston strong, she’s become a fierce advocate.
Label for Article: Survivor
On Patriot’s Day, April 15, 2013, Lynn Julian walked a few blocks from her apartment to join the thousands of people lining the streets to cheer on the Boston Marathon runners, as she had done for years. She sat on a metal bench, basking in the comradery that overtakes the city.
Lynn was sitting less than 50 feet away when the first bomb blast occurred. Miraculously, she had no outward signs of injury. The damage lied within, invisible to those around her.
Knowing the hospitals would be overflowing, Lynn waited until the next day to go to the emergency room. Shortly after the blast, she had severe head pain, vomiting, confusion, and back pain. Her hearing felt like she was underwater. She explained to the doctor that her entire body ached from the impact of her body bouncing out of the metal chair and slamming back down.
Many of Lynn’s symptoms pointed to traumatic brain injury and potential damage to her spine. Yet, she was brushed off by the emergency room doctor because of “pre-existing conditions.” Lynn was sent home without a diagnosis, medication, treatment plan, or even a referral for a follow-up.
In 2006, Lynn was a professional singer and actor in the Boston area. During a performance, a cord that ran across the stage floor had been neglected to be taped down, a standard safety practice. Lynn’s foot rolled over the cord; she fell backwards and was knocked unconscious.
The accident left her bed bound… for years. She had constant vertigo and vomiting, chronic neck and back pain, and developed chronic migraine. Prior to the accident, Lynn dealt with fibromyalgia and Ehlers-Danlos Syndrome (a connective-tissue disorder, or CTD). This combination of medical challenges left her body too weak to walk, and she rarely left the house.
Yet Lynn was determined to take control of her pain, even though she faced many challenges. After much hard work and finding the right doctors, she began to venture out of her bedroom, using a wheelchair. Five years after the accident, she was able to rely less on her wheelchair and transitioned to using a cane. The following year, she was walking on her own, had established herself as a “Boston Actress” in over a dozen short films, and was accepted to college to complete her B.A. in theatre arts.
Chronic low back pain and sciatica
Soon after Lynn began walking unassisted, she realized there was one area of her body she had been ignoring—her lower back. The other symptoms had dominated her life, yelling at her and demanding her attention. Only after they had quieted down was she able to focus on the damage in her spine. After seeing a specialist, her doctor determined Lynn had a bulging disc at the L5 vertebra.
For the first time, Lynn experienced a bout of sciatica—a painful medical condition that occurs when the sciatic nerve becomes impinged through contact with the surrounding discs. Painful flare-ups are usually triggered by a routine movement such as lifting a heavy object or even stepping off of a curb. Sciatica pain can radiate from the low back all the way down one or both legs. It can be burning or tingling, and creates feelings of weakness, numbness, and difficulty moving, sitting, or standing.
Lynn had been walking on her own for less than a year when the bombing occurred.
When she entered the emergency room the day after the attack, the doctor saw her history of a previous traumatic brain injury, chronic migraine, and vertigo, along with an MRI taken two months prior showing a bulging disc. Lynn explained the bulging disc caused her low back pain, which had previously resolved. Her new pain radiated all the way down her right leg and foot. Still, many attributed her new symptoms to her prior accident. Lynn knew that was wrong.
In the days and weeks that followed, Lynn’s existing conditions of vertigo, chronic migraine, and low back pain intensified. Hearing loss, tinnitus, cognitive impairment, and post-traumatic stress disorder (PTSD) were new conditions that developed after the bombing. Clearly these were not related to her “pre-existing conditions.” Just as she had advocated for herself after the stage accident, Lynn set out to find answers. However, answers are not easy when it comes to invisible illnesses.
Doctors were dismissive, blamed her pain on depression, insinuated to others that she was “attention-seeking,” told her to “learn to live with it,” and even labeled her as a “non-compliant patient” in her medical records. Lynn didn’t give up even when others had.
After a year, she finally received the correct diagnosis of traumatic brain injury (TBI). This diagnosis is typically associated with a forceful, direct blow to the head. Lynn was not hit during the explosion, but the shockwaves from an explosion can impact the brain just as severely (also called blast force trauma).
Due to a year gap between the bombing and diagnosis, Lynn laments, “my brain was further traumatized by not following ‘concussion protocol’ for the first two months after my TBI. Also, since my treatments were delayed, this minimized their benefit.” To treat her entire body, she required speech therapy, occupational and physical therapy, cognitive behavioral therapy, vestibular therapy, and ocular therapy. Because of her injuries, Lynn was forced to drop out of college and put her new acting career on indefinite hold.
She has tried over 100 prescription medications, eventually finding out that her body is incapable of metabolizing certain medications, creating a toxic build-up and leading to side effects. She has found medical cannabis to be quite effective in managing her illness. It helps her back pain and relaxes her muscles, reducing the frequency of sciatica episodes.
“I think of my pain as separate from myself… like a twin that lives within me,” she says. “My pain also breaks down into various parts of my body. I refer to each of these as my ‘children,’ and some can act like a two-year-old throwing a tantrum at times. Some days, the ‘kids’ are fighting for attention. Others, we’re one big, happy family.”
The life-changing effects of chronic pain
Lynn feels that she s often misunderstood, a sentiment shared by many who have invisible illness. “I wish the general public understood that no two types of pain are alike. With that in mind, no two people with pain are alike either. For many people, no two days in pain are even alike.”
The road to acceptance of living life with chronic pain and being comfortable in your new “normal” is different for everyone. “As crazy as it might sound, you need to learn to love your pain… or, more specifically, love yourself—a person living with pain.”
Purpose in pain
Lynn thrives despite her pain. Over time, she has been able to put her pain into perspective and focus on living around the pain instead of being stuck in it. Her advice is to “invest in whatever you discover helps you lead a life with purpose.”
Lynn has found that belonging to support groups helped to validate her pain and realize she is part of something larger than herself. Beyond the personal benefit she receives, she finds it incredibly rewarding when she can help someone else in the group. She says that’s the reason why she became an Ambassador for the U.S. Pain Foundation.
“Being a patient advocate has given my life a greater sense of purpose by giving me a way to pay it forward.”
U.S. Pain Foundation: uspainfoundation.org
Strength to Strength: StoSglobal.org
Ehlers-Danlos, Marfan and Related CTDs New England/MA Support Group: facebook.com/groups/211190148990266/