Audio Remembrance Quilt

A little over a year ago, my friend Tanya went to an MBC retreat in Upstate New York.  She came back excited and full of stories about a special memorial ceremony on the final day to remember those who had died from MBC in the past year.  I am not doing it justice, but suffice it to say that it involved a memorial tree and stones with the names of the deceased.

My friend was 37 years old.  She very much wanted to have children, but knew that  with the MBC diagnosis this was not to be.  Over the two years of our close friendship, we had many long heart-to-heart chats. We talked about trivial things and deep philosophical issues. We talked about living with a terminal disease, fear of death and dying. I remember her saying one day, “I am not afraid to die but I am afraid that I will be forgotten.” She was not alone in that fear.  I think I can speak for all of us, our legacy is something we think about often. How will I be remembered?  What piece of me will I leave behind? It is only natural that these thoughts are more acute and timely for those living with a terminal disease. 

In the spring of 1992, I was  working  in one of the buildings of the World Financial Center (now called Brookfield Place). The Center has spectacular river views and is known for its beautiful and expansive glass-domed Winter Garden Atrium.  Although located in the heart of Ground Zero, the complex survived the 9/11 attack. One morning I walked into the building and there laid out across the entire floor of the Winter Garden, was the now famous AIDS Memorial Quilt. I was used to the atrium housing cultural and art projects, but was totally unprepared for what I experienced that day.  Of course, I was aware of this horrible disease raging through the country.  “Angels in America” which had recently opened on Broadway was receiving rave reviews. But with the day-to-day pressures of work and family, I didn’t really have any sense of connection to the devastation and suffering that AIDS was afflicting on an entire generation.

In a matter of moments, those simple pieces of cloth laid out on the ground changed everything. I was overcome with emotions—raw and visceral— unlike anything I had ever experienced. The enormity of the tragedy became  crystal clear.  I forgot about my job and spent several hours transfixed  before the quilt.

The quilt is composed of more than 48,000 individual 3-by-6-foot memorial panels, sewn by hundreds of thousands of friends and family members of those who had lost their lives to AIDS. I went from one panel to the next, reading about lives with so much promise and talent cut short.  It was heart breaking and real. No longer dry numbers, these were people just like me, my family, my friends and the stranger in the elevator who smiles and says good morning and brightens up your day.  

In the beginning of this year, pre-COVID, my son and I went to see a Broadway play by Matthew Lopez, “Inheritance.” Inspired by the novel, Howards End, by one of my favorite writers E M Forster, it is a complex play, but the main theme is pretty straight forward.  It is about the new generation of young gay men who have to find  their own way without the benefit of the wisdom of those who had died in the AIDS epidemic.  My son and I were sitting in the audience heavily skewed towards older gay men. At the end of the play, there is a scene where a young protagonist while staying in a house  that had served as a hospice for those dying  of AIDS, is surrounded by their souls.  One by one, they leave the stage until it is just him. Perhaps not subtle,  but very powerful… We could hear audible sobs around us and I was crying too, but for a different reason.

I am finishing my seventh year living with MBC.  I have lost and continue to lose friends to this horrible disease.  Every night before going to sleep, I used to recite their names, but the list has gotten so long now that I am beginning to forget. The scene in the play was my reality too. 

But I digress, I was talking about my friend and her wish to leave something tangible behind, a piece of her that would be there when she is gone.  I told her the story of the Quilt.  She was a young kid back in 1992 and knew nothing about the quilt.  She was so taken by the idea of an MBC Remembrance Quilt, that she  immediately started planning on how this could be done.

She did not have enough time to make it a reality.  My friend died in July of 2020.  Had she lived longer, I have no doubt that she would have pulled it off.  We launched this podcast at the end of July and almost from day one started thinking about how best  to remember our friends who are not here to listen to our podcast: Emily Garnett, Rebecca Timlin Scalera, Renee Seman, Cherie Jack, Jasmine Charles (our beautiful Jazzy),  Shanna Joseph, my friend Tanya Raisch and so many more.

Even though I love the idea of the physical quilt, it is probably not very practical, and in the 30 years since the AIDS epidemic, there are other ways to memorialize our friends, sisters, brothers, husbands, wives, parents and children who are gone, but not forgotten.  Our podcast is the right tool.  I envision a symbolic audio MBC Remembrance Quilt .  

So here is what I want you to do right after you finish reading this blog.  Take out your iPhone or whatever recording device you use and share with us a name or names of those who died from metastatic breast cancer this year, last year, ten years ago.  Send your voice message to ourmbclife@sharecancersupport.org.  If you like, you can record your  message directly from our website ourmbclife.org and the tab Connect.  It does not matter how you do it, just do it.

During our special JustGottaShare episode on October 26th, we will play your messages.

Once spoken, their names will take on a new life as sound waves — out there in the cosmos forever.