A Personal Story and Celebration of Life
I am writing you all to relay the recent events in our family’s life to you for future consideration.
On November 20th we received a phone call that my dear brother, 44 years old, had died while in the hospital. Having been diagnosed with Epilepsy over three decades ago, he had suffered his entire life trying to control the chronic seizures that gradually destroyed his brain. His life was a difficult one and when we look back at his years of misdiagnosis and insufficient medical care, it’s very hard to not become angered.
We were told he had died of cardiac arrest and his death would not be investigated. This did not satisfy us and we arranged for an independent autopsy. We also contacted the Autism Tissue Program due to the fact several of us had registered for donation. We were then directed to the Harvard Brain Bank. My brother’s diagnosis was disclosed along with the fact that he was the uncle of our eight year old autistic son. They informed us they would accept my brother’s donation and gave us the name of the only physician that does the harvesting in our state. When they gave us the name we knew we had made the right decision because it was the same doctor we had hired to perform the autopsy. It was amazing also that our entire family agreed this was the proper thing to do. When there’s always a couple of us that usually don’t see eye to eye on things, it was unusual to get such a response so quickly from everyone.
We celebrated my brother’s life at mass and many of us were able to do so feeling better with the knowledge he will continue to contribute, assist others, and possibly even help his nephew with his donation. It was also decided within our family that all monetary donations be contributed to the MCC/ASA and dedicated to his nephew. The memorial has reached five hundred dollars and continues to grow.
I’m telling you this story because of what each of us face daily. The possibility of an unexpected death in the family, discussing things at a very difficult time and then having to act on them when time is so important. I know we all have different feelings regarding organ donation and participating in the Autism Tissue Program. Religious beliefs guide many of these decisions and being a Catholic family, this was a very difficult decision for many of us. But when we informed of the magnitude of Harvard’s studies and neurological research, it made our decision seem as though it was the only one possible.
I ask you all in the celebration of the New Year to think about my family’s plight. To consider what you may do when faced with a similar decision and to possibly prepare for these events prior to their occurrence. It did help that we knew about the Autism Tissue Program and we were able to contact someone right away. When my sister passed away nine years ago we learned from that experience. When my niece, my sister’s only child, was killed in an auto accident a year later, at the age of sixteen, we were a little more prepared and she was able to assist others still living through organ and cornea donations. Our family has suffered great losses, but we have celebrated our loved ones by knowing they are continuing to help others.
I hope I have not offended anyone in writing about these issues. I only hope you realize I’m sharing this not only to help myself and my family deal with the loss, but also to let you all know we can each help in ways we may not have thought of. I look at my autistic son as not having suffered a complete loss at the death of his uncle, who loved him dearly, because he may one day benefit from the research enabled by his uncle’s contribution.
Thank you for understanding,