Stories worth remembering. . .

7/10/2019

Last night I attended an event at the Quatrefoil Library in Minneapolis in which community writers shared their essays that reflected their memories and primogeniture from the age of AIDS.  In particular, they were remembering the year, 1981, the year we identified the virus at the root of the AIDS epidemic.  Each of the writers had been touched in some way by that virus and its aftermath. Most were old enough to have lived through the “Age of AIDS” but there were also younger gay people who spoke to the continued marginalization, the ongoing issues their community members face just finding their way to be themselves.

1981 brought a lot of things to our attention beside the identification of a virus.  America’s Iran Hostage Crisis ended, Anwar Sadat, the Nobel Peace Prize-winning president of Egypt was assassinated, the Space Shuttle Columbia took its first flights and we heard the word, internet, for the first time when Microsoft released their MS-DOS operating system. Also that year, Lady Diana Spencer married Charles, The Prince of Wales. It was a busy year.

The evening at Quatrefoil took me back to my own experiences in the early eighties. I did not arrive in the Twin Cities until 1985, and by then, the AIDS epidemic was in full swing.  I found myself drawn to the overwhelming needs that I saw in my new community.  I worked for the Ramsey County AIDS roster as a public health nurse. I volunteered for the AIDS Project when it was just an answering machine in a closet. And later, I helped to establish the AIDS Emergency Fund, Every Penny Counts, to financially assist PWAs (People with AIDS) meet basic needs.

My own “stories” from the early 80s came to mind.  Some of the names the writers mentioned were men that I remembered too.  It was good to be reminded of those days – not because they were good times, but because they were life-altering times.  The events we all experienced during the Age of AIDS changed us, and the world around us, forever.

I remember being invited to address an audience of family caregivers, over 100 people arrived, ready to listen to the nurse who would teach them how to manage the home-care needs of the people they loved, the people who were dying in front of them, from a disease we barely understood. I had not, at that time, ever been a family caregiver, but I knew the home-care routines they’d need to adopt and those things I could teach them.

Now, I see myself immersed in the awareness of how being a family caregiver changes us – and being one myself – and I realize that the writers in front of me last evening are still carrying the burden, the pain, the residual grief that defined the whole of their lives nearly forty years ago.  Caregiving changes you. It moves you outside yourself and brings out the best (and often the worst) in the family member who carries out this work.

We often define family too narrowly.  Back in the eighties, I learned about family of origin and about family of choice.  The people we love most, even if we share no blood or DNA ties, are our most beloved family members – with them, we share our heart. 

Who do you include in your family of choice? How are you showing up for them? What do they need from you? What do they provide for you? How can we be our best selves, especially when care is called for?

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About Paula

I help other caregivers – both professionals and family caregivers – acknowledge their pain and learn to practice the many small skills of self-care that can sustain them through the challenges of wholeheartedly caring for others.

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