A Sad Footnote

While we were getting the good news I wrote about in my last post, another member of the cholangiocarcinoma community, Sarah Bennett, was entering home hospice and dying. Today, September 22, we went to her funeral, about an hour from our home in New Jersey.

Every death from illness is a matter of sorrow, but Sarah’s was especially so. She was the creator and guiding force behind the Facebook patients’ group for people with this illness, the Cholangiocarcinoma Warriors. This is a difficult group to lead, because the members are going through a very wide range of different experiences. Some are at early stages and can report successful treatment (a few can do so even at later stages); some are ill and suffering; some are dying. I personally felt guilty about reporting my own recent good news when I was aware that Sarah was rapidly declining. But the Warriors group under Sarah’s leadership set out to be a home for all these different people, as welcoming to those expressing confidence as to those feeling despair. Sarah accomplished this almost impossible feat largely by giving to the group her own tremendously strong commitment against the disease and its impact, and her close personal connection to all the group’s members. It was impressive and inspirational.

If the impact of this disease had anything to do with what people deserve, she would have beaten its onslaught, and would still be on the scene helping to inspire and remember other patients. I should add that I don’t say this to challenge anyone’s religion. Some of the members of the Warrior group do respond to events in their illness in very religious, mainly Christian terms; but some don’t. All are welcome. I don't know exactly how religious Sarah herself was;  certainly she could swear up a storm, and members of the group took that in stride too.

Deaths like hers are hard for anyone from any system of belief to come to grips with. Her eloquent family, however, brought her to life for us during the service, and we learned that in the course of the service and two days of visitation, approximately 1000 people had come to remember her. Some had traveled many hours to attend. That effort by so many reflects Sarah's exceptional contributions. And those must have gone well beyond the Warriors group, since there aren’t close to 1000 active participants in this group – cholangiocarcinoma is a rare disease. Nothing she did in her 35 years, however, seems more remarkable than the effect she had on this patient community during the four years that she herself fought against this disease, and helped so many others to fight their struggles too.

To our great sadness, she is no longer with us.