Guest Post: How the AIDS Crisis Taught Me an Enlarged Vision of Family

By Maureen Edgerly

December 1st is the 30th anniversary of World AIDS Day with the theme to “Know Your HIV Status.” I saw an internet thumbnail pop up of Prince Harry having an HIV test, supporting this cause. His mom would be proud. Princess Diana was an HIV/AIDS advocate, visiting and embracing those experiencing this illness.

I graduated from college/nursing school in 1983 and immediately went into oncology. I remember a day in 1984 when I was floated (sent to a nursing unit where one normally doesn’t work) to the Infectious Disease unit and assigned to care for a young person in isolation with a rare disease. I was afraid. In 1985, the unit I worked on enlarged its focus from strictly oncology to include adults with AIDS and AIDS-related complex (ARC). This was before the Human Immunodeficiency Virus (HIV) had been isolated. This was simultaneously my first introduction to gay men. Up until then I had no friends who were gay, or at least I didn’t know they were gay, if they were gay. I had lived a fairly sheltered life.

In the 90s I worked in a Pediatric Oncology Clinic. The physician-director was a forward-thinking leader who expanded the clinic to include children with HIV/AIDS. Back then the field of HIV/AIDS didn’t have its own specialists, or at least not very many. Under this leader’s direction our clinic was instrumental in conducting many clinical trials that led to drug approval and successful treatment of children with HIV/AIDS.

What I remember most from those years in pediatrics was the children and their families. The majority of these children contracted HIV from their mothers and some from blood transfusions.

What I saw in that clinic redefined what family is and can be. I saw mothers who were sick, caring for their children who were sick. I saw aunts who were raising their deceased sister’s children, bringing them to their clinic appointments. I saw fathers caring for their children after their wife had died. I saw grandmothers in their 50s, 60s and 70s raising their grandchildren after their own children had died. I saw many, many foster parents, many of whom were gay couples, fostering and/or adopting these children, giving them a home, giving them love and providing care. It was a beautiful place of service and love amidst the constant grief.

I saw strange and unbelievable things. I saw strength and reserve. I saw courage and fear. I saw despair and hope. Most of all I saw love for our fellow human beings, especially our children. In the early years of this epidemic I was afraid of things I didn’t understand and had no experience with, both medically and socially. I am so grateful for the experience and opportunity to know these wonderful people who taught me an enlarged vision of family.

 

Maureen is a nurse.

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7 Responses

  1. Thank you for sharing this sacred experience with us.

  2. I’ve heard a number of stories recently about the AIDS crisis in the 80s and 90s from people who were close to those with the disease. Feeling grateful for doctors, nurses, and others who pushed through their fear to come to a new understanding of the disease and how to treat it. Thank you for being part of that.

  3. LMA says:

    Thank you so much for sharing this and being a part of the work that was helping women, children, and families before people really understood it. That is so sacred and lovely and powerful.

  4. Violadiva says:

    Thank you for this tender perspective. Family can be who we’re born to, and who we choose, and sometimes both.

  5. Wendy says:

    “What I saw in that clinic redefined what family is and can be.”

    Love really does make a family. Thank you for this stirring post and for your service for the vulnerable in a time fueled by fear and the unknown.

  6. Emily Clyde Curtis says:

    I went to a hemophilia charity event yesterday. The pain of this time lingers on.

  7. Maureen says:

    Yes it does. I worked w many hemophilia families during that time in the 90s. It was devastating then and the absence of these people in families today is a palpable hole in the family fabric. They suffered/suffer greatly.
    Even all these years later I remember the children’s faces and the mother’s heartache.
    Hemophilia gene is carried by women but affects males. So many of these women had lost brothers to AIDS and now were caring for their sons who were sick. The emotional trauma experienced in these families was/is tremendous.

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