On the very hot early morning of June 19, 1995, I was 33 years old and talking about my upcoming wedding with my best friend Jane as we jogged on Crescent Beach in Cape Elizabeth, Maine. With absolutely no warning, I had the sensation of an axe splitting through the center of my forehead, continuing into my brain and down the back of my neck. I told Jane I had a headache (an understatement!) and urged her to run ahead. As she jogged away, my left side went numb, the sunlight became blinding, and I knew something was very wrong. Somehow, I managed to get myself to the nearby bathroom of the State Park and was violently ill.
Jane soon found me and, with the help of some park rangers just arriving for work, an ambulance was called. I was taken to a nearby hospital and was initially wrongly diagnosed with heat stroke by an insistent resident in the ER – luckily, an attending arrived, and thanks to him recognizing my continued photosensitivity symptoms, a CT was ordered. The imaging showed a massive brain hemorrhage, and I was immediately rushed to Maine Medical Center.
Testing to find the source of the bleed was inconclusive for a couple of weeks, and I continued to fail, but my neurosurgeon, Dr. Bill D’Angelo, was convinced I had an undetected aneurysm and talked us into exploratory surgery. Many hours later, he found a bi-lobed aneurysm a few inches behind my right eye, swirling with blood and somehow holding itself together by just a filament of tissue. That the aneurysm blew on the beach and resealed itself was a miracle, but it was also a miracle that I was blessed to have the luck of the draw that day and be put under the care of a brilliant neurosurgeon who kept fighting for me. Amazingly, at my post op appointment, he told me that if he had not been to a recent conference on finding hidden, buried aneurysms, he would not have found mine, and I would have likely died within three months. My additional blessing was that I survived the surgery with no deficits!
“It took months to wrap myself around what had happened to me and to feel like Amy again.”
— Amy
Like many aneurysm patients, the road to recovery is a journey. In my case, it took almost a year for all the blood from the massive hemorrhage to reabsorb. I experienced fatigue and crackling noises in my head, and often felt overstimulated by noise, high-energy people, and crowds. I sought comfort in quietness. I have often told people that having a brain “injury” is not like breaking an arm or having an appendix removed. It is hard to describe, but it feels as if your core sense of self has been wounded. It took months to wrap myself around what had happened to me and to feel like Amy again. Since my recovery many years ago, I have found being a brain aneurysm survivor and being in the presence of other survivors very meaningful. There is an unspoken and powerful understanding and bond of a difficult shared experience known by few.
What happened that day on the beach thirty years ago has been profound for me on many, many levels. On a personal front, it has served as a source of strength many times to remind myself when challenged by life that I can get through anything after surviving my brush with death and brain surgery.
Another takeaway is the importance of knowing one’s family medical history. As an adoptee, who just a few short years before this medical emergency was found by my birthmother, it is vital and could be lifesaving to have information that might point to an increased risk of aneurysms. As it turned out, multiple members of her family had brain aneurysms, and several did not survive. I am very proud to serve as a member of the Board of Directors of the Maine Aneurysm Awareness Committee and to passionately promote our work to increase public awareness for early detection and treatment, support the brain aneurysm community, and fund education and research. Education and continued research for developing new technologies and techniques in the neuroscience arena are of special interest, given that my fate would have been much different if my neurosurgeon had not just attained a special new skill set!
Your Stories Matter
Every journey through a brain aneurysm is unique. We invite survivors, family members, and advocates to share their personal stories of hope, resilience, and recovery. By spotlighting these narratives, we not only foster community but also inspire others facing similar challenges. Your voice can make a difference.