April 15, 2023 is the 10th anniversary of the Boston Marathon bombing.
I may *look* healthy outside, but I’m an injured survivor, living with permanent, yet invisible, injuries: brain injury (chronic migraine; photophobia; allodynia; hyperalgesia; loud tinnitus; hyperacusis; functional neurological disorder/FND); hearing loss (hearing aids); neck/back injuries (chronic pain; CCI); severe post-traumatic stress disorder (PTSD)… plus fibromyalgia, IBS, and nine rare diseases/conditions.
I wish to congratulate all survivors, and their families, on a decade of accomplishments since that terrorist attack forever changed our lives. Personally, I’m celebrating 10 years volunteering as a patient advocate for many organizations supporting people with my injuries and conditions. Sharing my story, as a featured speaker on “The Secret To Resilience,” and as a patient advocate with Senators, gives me a sense of purpose. It drove my resilience and recovery from wheelchair to walking to running the Boston Marathon. I fought my way to regaining mobility and across that finish line. Here are “10 Lessons I Learned in 10 Years.”
1. You do need support and it’s not “weak” to ask for it.
Find a therapist with whom you connect. This is an intimate relationship, that only works if you‘re vulnerable. Therapists specialize (trauma, addiction, etc.) to help connect with their patients. I wasted my first years of therapy with the wrong providers, and my progress was delayed.
2. There is “strength through unity.” Find your community.
For me, that was terrorism survivors. I found my “survivor family” in New York-based, international group, “Strength To Strength.” Through this priceless nonprofit organization, I was able to connect with others like me. Outside of Strength to Strength, I resort to “toxic positivity,“ pretending to be OK when I’m not, so that others won’t feel uncomfortable. Within, I’m free to express my pain and anger, knowing they will provide me unconditional love and support. I now volunteer on their advisory panel.
3. “The first year is the worst year.”
Your first time learning to do anything will likely be most difficult. My first day of physical therapy was the most physically challenging. My first time returning to the sight of my attack was the most mentally challenging.
4. Invisible injuries are hardest to diagnose and often toughest to heal.
Neither of my brain injuries, from both the Boston Marathon attack, and my stage accident, were diagnosed in time for me to follow concussion protocol, and prevent further injury. After 4/15/13, I left the ER, without treatment, and a single word on my discharge paper: “anxiety.“ I felt gaslighted, and invisible… just like my injuries.
5. Every person, and every injury, are unique.
I couldn’t metabolize my first medications, which is why they made me worse, not better. Sadly, doctors are taught to diagnose and treat by following mental flow charts. Not every test catches every problem. Not every treatment works for every injury.
6. Be your own patient advocate.
No one cares as much about you and your loved ones, as you! I foolishly did not choose my own doctors, or research my medications, resulting in misdiagnoses and life-threatening reactions. Go to medical appointments with a list of three to five questions. Research your diagnoses, medications, and tests. Do not assume doctors are God-like creatures who are all-knowing. Doctors are simply human beings doing their best job… sometimes in only 12 minutes.
7. Caregiver burnout is a serious problem.
My partner and I learned this the hard way… after multiple break-ups. Even trained professionals can suffer from “physician burnout.” Make sure your caregiver has their needs met, and their own support group. Those who love you are only human, and may become exhausted by the “new you.” They may expect the “old you,” your role in their relationship and your contributions to their life. The “new you” may not be able to take care of yourself, let alone, fulfill your old roles.
8. Resilience is a skill for restoring balance to your body, mind, and spirit.
You cannot fully heal until all three parts of you do. The resilience you build in the face of adversity will serve you for the rest of your life. “What doesn’t kill you makes you stronger.” I survived a disabling stage accident, which ended my music career as an award-winning Pop Superhero. But the lessons I learned, and resilience I built, helped me retrain as an actress… and survive a terrorist attack.
9. When you are ready, pay it forward. If not for others, for yourself.
Volunteering gives me a sense of purpose, and I get to be part of something greater than myself. Becoming a survivor of terrorism inspired me to give back: STS advisory panel; Massachusetts Ambassador for the U.S. Pain Foundation; migraine expert and support group admin; patient advocate for the American Migraine Foundation (AMF); legislative advocate for Alliance for Headache Disorders Advocacy; rare disease legislative advocate for the Every Life Foundation for Rare Diseases; legislative advocate for the Center for Lyme Action.
10. Speak Up… Use your voice to “be the change.”
Everyone has “the power of one,” to help or to harm. I’m helping others heal from trauma of all kinds, as a featured speaker on “The Secret To Resilience” (LinkedIN).
On April 15, 2013, the Boston Marathon attack permanently injured my brain and body. Undeterred, I trained to run, having never before, despite daily, severe, chronic pain, migraine and endless panic attacks. Stubbornly, dragging my left leg, I finished in 2014, and SELF magazine named me one of the “Most Inspirational Women to Ever Run the Boston Marathon.”
I hope “10 Lessons I Learned in 10 Years” inspires you to share your story!
