A Celebration of Life Is a Reminder of Deep Grief

I sat in a hotel ballroom with hundreds of people who gathered to pay tribute to their loved ones. The names and pictures of the dearly departed appeared on giant screens at the front of the room. Many people had their cellphones ready, anxiously waiting to capture the image of their loved ones’ names as they appeared on the screens.

As I waited for my brother’s name to appear at the Hemophilia Federation of America’s 2022 Symposium, I noticed something about the atmosphere. I felt an extreme, uncomfortable heaviness weigh on me. I have attended this service in previous years and never felt the depth of the grief of our collective community the way I was experiencing it.

I heard individuals share about those they lost. Parents who lost their sons, daughters who lost their fathers, and sometimes numerous people in the same family are examples of those who grieve. But there was another group that my soul heard.

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There are individuals in our community who question why their lives were spared when the lives of their family and many friends were not. According to a 2021 article by Michele Carroll, a writer at the University of Southern California Suzanne Dworak-Peck School of Social Work, “In the 1980s nearly 90% of people with severe hemophilia … contracted HIV from tainted blood products used to treat their disease and half of the people with hemophilia in America died.” How do the 10% who didn’t contract HIV feel?

The loss of our beloveds is tremendous. It can be too much to bear, no matter how many years or days have passed since they died. I want those struggling with why their life was spared to hear something from a mother of two sons with hemophilia.

I want to thank you.

Thank you for not only sharing stories of the loved ones who passed, but also your stories. The younger generation must know the stories of the past. These are tales of a terrifying truth that must never be repeated. If the men with hemophilia who lived through the 1980s were not here, keeping the memory alive would be more difficult.

To my beloved blood brothers, I am so grateful that you are here to stand up for those we lost. I think it is wonderful that the story did not end and that we are all here to add to the legacies of this fantastic community.

Unfortunately, many do not attend this annual celebration because they do not have a personal connection to someone who died from complications of a bleeding disorder. The truth is that community members do not need a traditional familial connection.

A bleeding disorder connects us.

Perhaps if we stand together as a community, we can all share the grief and carry one another’s burdens. We walk as a family, sharing stories of loved ones whose lives were cut short. We acknowledge our loved ones and maintain their hopes and dreams by continuing to make a difference in our world.

And may we never forget.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.