My Nonprofit Reviews

Performing without a Net!

It sounds like a cliché but it really was a dark and stormy night in the city of Boston on November 8, 1996. After a long week of training at my company's headquarters in Philadelphia, I flew up to Boston to meet up with a friend to take in the sights of this historic and vibrant city. Little did I know that my world would change hours later in completely unexpected ways for these past 19 years.

Since the weather had not been cooperative, we decided just to order in a meal of seafood chowder and a bottle of wine while taking in the movie, “Courage Under Fire,” which is pretty ironic giving the fact that a few hours later, without warning, my brain exploded. Now I was the one whose courage would be under fire! Having been resuscitated after a grand mal seizure and respiratory arrest, I woke up an hour later in the ER at the Tufts/New England Medical Center with a circle of staff in scrubs peering down at me and firing off too many questions for my now damaged brain to comprehend. As an ICU nurse, I knew immediately that I was in real trouble.

The next month turned out to be one of the difficult of my life, dealing with recovering from the craniotomy to clip the aneurysm, with complications from the surgery (including my ability to speak for some time), and ultimately the overwhelming task of beginning a recovery process. There was no real support to be found anywhere, except among my former colleagues who understood perhaps even better than I did, how incredibly fortunate I was to have survived this. My own maternal grandfather had died of an aneurysm at 42 years old; I had been 43. It was the beginning of a very long and often lonely journey over many years...

Gradually, I educated myself by doing research about aneurysms. Initially I had been diagnosed with a second aneurysm that was still quite small and was to be monitored for signs that it was growing. The thought that this could happen to me again was terrifying and the only way I knew to combat that terror was through knowledge and education. With what I had learned, I truly wanted to work towards educating others but there were very few platforms on the internet of the day for sharing my experience with anyone. One of the most critical elements of recovery is a source of support and education for survivors, their families, their caregivers, friends, and employers. Then one day, I found a central, credible organization with of all kinds of information and tools on the Brain Aneurysm Foundation's website at http://www.bafound.org/. It was a defining and very positive moment in my journey from that day forward. I no longer had to perform without a net!

Over time, I became involved as a volunteer and donor with the Foundation and began to find ways of reaching out to others in order to help raise awareness about this frequently silent killer of almost 30,000 Americans a year. Although I was no longer able to work as a clinical nurse due to some of my cognitive deficits, working with the Foundation was a way for me to continue wearing my nurse's cap by participating in support groups and attending the BAF Lobby Congress day each May for the past several years. This opportunity has allowed me to have a real voice, meet other survivors, meet the families of so many who have either lost loved ones to this condition or the caregivers of others who have survived but live with lifelong deficits and disabilities. This has been so very gratifying on many different rewarding levels.

My dream is to one day fund a research chair for the Brain Aneurysm Foundation to advance research on improved detection and treatment of aneurysms. Of great importance to me is creating a better national protocol for first responders and Emergency Medicine professionals to properly triage and diagnose aneurysm events in a more timely and consistent manner. Once diagnosed, the choice of treatment must be determined expertly. Sometimes this means transporting a patient to a facility that has the experience to treat brain injuries to effect the optimal outcome using “best practices” standards for care. Sadly, we are not there yet in the current healthcare climate and too many lives are lost as a result.

By entering the 2015 Giving Tuesday competition, I am designating my non-profit organization is the Brain Aneurysm Foundation, whose url is http://www.bafound.org/ . A grant to BAF, whose staff and Boards have worked so hard “Raising Awareness. Ending Fear” as their motto states, would be money very well spent. I am happy and humbled to be a part of these efforts. What was initially a devastating and life-changing event, my own story has evolved into a positive contribution to the collective whole of our community of survivors to further the mission of educating the general public to the dangers of brain aneurysms. It is humbling work that I will continue with a sense of true purpose for all my time to come.