They say death is the great equalizer because regardless of your income, nationality, gender or age every human being still has that one thing in common: we all die. But illness is not an equalizer, neither is the dignity we show to the ill or to their exhausted and overextended caregivers and families.
I once lived in a community where there was a boy with a very rare and debilitating disease who fought for his life. Both he and his mother were often covered by the local news highlighting his condition and their determination to beat the odds. It was a feel-good story. Fundraisers happened on a regular basis, the local radio celebrities and sports teams got involved, networking events and small businesses all pitched in to help fund experimental treatments far from home. He passed away at the age of 17 this past month and it was all over the local news and in the newspaper and all over social media, celebrating his heroic battle with an outpouring of love for a mother who never left his side.
In that same community, one of my closest friends was a foster mom to a boy with a rare and debilitating disease who fought for his life the whole 16 years that she got to raise and care for him. They were not in the news because of confidentiality issues. There was no news coverage, no community uproar, no sports teams getting their pictures taken with him. There was a rally by a local network of small businesses to get a very necessary wheelchair accessible minivan. That’s it. This amazing boy made it to the age of 18, he walked across the stage to a high school diploma, celebrating every precious milestone. His passing devasted my close friend who had to learn to live again outside of the caregiver role. There were no news articles about his passing, no citywide call for support for a grieving mom.
How many people are there that suffer horrible diseases and die without fanfare? How many mothers have buried their children this month without a citywide outpouring of love? I can’t help but see the inequity. I don’t think that it’s fair that a child who dies from cancer somehow matters more than a child who dies from Idiopathic Pulmonary Fibrosis. Every time I see a fundraiser for a particular individual or their family I can’t help but see how unfair it is that one gets what everyone needs and deserves.
I know the media has its own agenda for showing us sensational stories that move us. I know they can’t show us every human being that is fighting a disease on the news every day. But as a society, maybe we each need to go up to someone who is suffering and tell them that we see their battle, we hear their cries of pain, and their time on this earth, no matter how long or short, matters. Maybe instead of sending $25 to a GoFund Me campaign we can adopt a family with a critically ill member and sit with them as they battle every day for dignity.
I know one thing for sure, we all want to be seen, heard, and know that we matter. All of us. So how can we as a society make sure that every single one of us feels that? How can we make love the great equalizer?
I dedicate this to my friend, Kim. I see your grieving, I hear your pain, you matter.