Even when confronting the direst of circumstances, every single one of us has the opportunity to leave a legacy in life, something that indicates that you were in this world — that you were an advocate for change and used your life to create a better world for those who followed in your wake. In the wake of #ALSicebucketchallenge, I want to tell you the story of one such individual, a person who has left an indefinable mark, not just in spite of his illness and disability but because of it.
Today, I want to tell you about my uncle. His name is Dr. Neil Brourman. He was diagnosed with Amyotrophic Lateral Sclerosis (ALS), which is a progressive, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. At early diagnosis, he was given just six months to live.
Prior to his diagnosis, he worked as an ophthalmologist in Beverly Hills and was a much sought after physician. Although he had to sell his practice due to the progressive nature of his disability, his desire to help others increased in the wake of debilitating illness. In a quest to advocate, help and be a beacon of hope to the disabled community, he enrolled in law school. He became an advocate for disabled individuals by fighting for patients’ rights.
He loved his family, never cursed the wheel of fortune and fostered hope in bleak circumstances. “Our lives have been fortunate because we have been surrounded by love-and that is the meaning of life,” he said. “While money might make the world go round, I noticed from a young age growing up in Beverly Hills, that some of the wealthiest people were also some of the unhappiest. I have met rich people who are happy and poor people who are happy. What they share is love.”
He was the engine behind the establishment of “The Neil Brourman, M.D. ALS Research Fund”. Its purpose is to hasten the development of more effective therapies and a possible cure for ALS. “It is very important for the treating physician to be compassionate toward the patients and help them in any way possible — not just to dismiss the disease as incurable,” he stated, “I have a new perspective in that a patient can be so vulnerable and dependent on his physician. A physician’s demeanor, diagnosis and caring ways are very important to the patient. Compassion is very important. It is important for doctors not to give false diagnoses, and the primary care physicians should be more aware about ALS patients. They should be aware of the initial signs so that they can refer the patients to a neurologist.”
He also created public awareness about ALS and for the individuals with a diagnosis of ALS. “Many people do not understand that there is nothing wrong with the brains of ALS patients. In fact, they are very intact,” he said. “Also, some people think that ALS patients do not hear. The public needs more education — [they have to know] that it is only muscles — not brain power — that is affected.”
Courageously, he fought for other patients with ALS, trying to educate, and at the same time, struggling with his body. At the end, despite being unable to speak, he was full of joy, hope for the future and a sense of advocation that I still try to mirror. “I feel like the luckiest man in the world,” he said echoing the immortal words of. “I am blessed because I have loving parents, a dear sister and brother, my friends, my dear and loving wife, Gina, and our fabulous children.”
I do believe that my uncle Neil left a profound and joyful mark in every person that knew him. Although, my uncle succumbed to his disability, he used his illness to fight for change, advocate for himself and leave a lasting legacy.
So, next time you feel depressed or down by your illness and perhaps feel stagnant in the face of daunting diagnosis, please remember: that legends are when ordinary people do extraordinary things. You are here to leave a legacy.
On August 31st, we will celebrate my uncle’s life and legacy, I hope as you learn to advocate on this blog, you will remember that we can all by an advocate for yourself or others even in the bleakest hour.
What is ALS?. The ALS Association. Retrieved from What is ALS?