The Recollectors

December 18, 2018 3:20 PM

The Recollectors features the memories and stories of “children and families left behind by parents who died of AIDS”. Max Mueller remembers growing up with his mom Cookie Mueller, who was one of the John Waters’ Dreamlanders and a frequent subject in Nan Goldin’s photos.

Ian Richard Barnes talks about the difficulties his family faced when his minister father came out as gay, and HIV+. Retired WNBA athlete Candice Wiggins on how her father’s death from AIDS related causes has shaped her life. Alexis Danzig discusses her role in ACT UP after her father died of AIDS. Sam McWilliams defines the word “nelly” and shows off a great photo of her and her father. Eric Wright Jr. shares memories of his father, Eazy-E. The website creators, Whitney Joiner and Alysia Abbott talk about losing their fathers to AIDS, and the impetus for starting the website. At this time the website seems to feature people exclusively from North America, but they are still soliciting stories.

posted by Cuke (7 comments total)

Oh man. Some of these are very hard for me to read, but maybe not for great reasons. I was 10 when I found out he had AIDS (though there had been months of my fearing it was AIDS and then telling myself it couldn’t be, they would tell me if it was) and 11 when he died 9 months later. He never lived with us (my bio parents had an arrangement but not a relationship) and I didn’t have time to develop the kind of relationship with him that I would have wanted. He died relatively late in the crisis, just before protease inhibitors hit the market, but well after most (all?) of his friends died.

But mostly what fucked me up, besides the obvious, was that I was still a child stuck in a frozen, unhappy, and fundamentally neglectful family as this went on. For years. I didn’t get the goodbye or the community that some of these recollections describe; I do remember the stigma, the shame, and the bullying.

But the other day I found a letter he typed up to a circle of remaining friends and family as he was starting to get worse, and the personal letter he’d written to me on the backs of the pages. He was a great writer, but an even better man, I think. I don’t really know, obviously; all I have are a few scant memories (not enough; other stuff was going on, too, and my brain just...didn’t record a lot of stuff), some stories, some photos, and this letter. But it’s a hell of a letter. I get paranoid about sharing personal details on the internet (even though, truthfully, that ship has long since sailed on metafilter), but reading this again...it feels like something to be shared.

Within the last few days I've realized that I don't want this letter to be yet another installment in a too long litany of suffering, disease, losses, complaints. Every time I am tempted to write, that is precisely the direction my mind took me in. So the letter wouldn't come, and I grew increasingly puzzled by the block.

...

And now to the central point of this letter. I find writing it is a necessity because I can no longer contain the joy and the awe I have come to feel. I think I might explode if I don't share the incredible wealth of happiness that fills me. To be sure, I've lost a very great deal. To be sure, it has hurt--major change usually does. But I've also gained. I've gained back my innocence--a far more precious gift than the ability to perform physical tasks. I've always heard that, once lost, innocence is gone forever. Not true! It can be regained with a great deal of meditation and prayer, and I am living proof.

The return of innocence. It begins with an end to what I would call "world weariness." That feeling that each of us is carrying an enormous weight, exhausting us, sapping our strength and constantly challenging our will power. That common feeling that nothing is right or wonderful for us at the moment, and that the time to relax and to enjoy and to be happy is always somewhere just around the next corner. Out of reach. Thank God this false and crippling understanding is gone.

I feel light inside, open, no longer choked off. And this new openness isn't simply an empty feeling. I can once again really hear the laughter of toddlers in the park, the way they squeal with delight when something catches their beautiful eyes. ANd confronted with their enthusiasm and boundless enjoyment, my fears and resentments simply dissolved. And I can again hear the noise of the animals in the little zoo -- at times an overwhelming symphony of howling, clucking, crowing and chirping as the various creatures strut and preen. I also witnessed with the new eyes the most glorious spring I think I have ever seen. The fruit trees were a virtual riot of color and delicate texture and the early flowers were simply magnificent.

I can once again treasure the sight of a small child stoppign to go eye to eye with an equally curious duck, and I am filled with gratitude when I can coax a radiant smile from one of these children. After all, they know nothing of disease and loss. And this is my new goal. To open up to the beauty and perfection of life to such an extent that I no longer remember things like disease and pain and loss. To become in essence a little one again. Someone in whom there isn't any room for negative illusions. Even the attempt to reach such a state makes me tremble with anticipation and exhilaration. I am re-birthing myself at the ripe age of 39, and I have a disease to thank for it! Halleluia!

Recently, I traveled to Manhattan to attend an AIDS-related support group that had been of tremendous value to me when I lived in NY. This group kept me going in more ways than one at a very crucial time in my life. For nearly a year now, I have tried to make this trip. And always the effort was frustrated--by fevers, by headaches, by vomiting, by something. I missed my friends there and I missed the safety of their support. With my new vision in place, I realized I might wait forever if I was going to wait until I felt better. And I realized that attending the group again was in fact worth the risk of provoking some unpleasant reaction in my body. So I went to NY.

Perhaps 75 people were there--all ages, races, sexes. The only common thread bringing all these people together is that HIV infection has directly touched their lives. Some folks spoke of facing imminent eviction because of their ill health. Many spoke of extremely painful betrayals by friends and family at precisely the time they needed the most support. One gentleman tearfully asked for prayers for his recovery from a crippling infection. Tremendous pain and fear was evident throughout the room. Utterly tremendous. And yet with my new eyes, I couldn't see it. I knew all too well that it was there, but what I saw wasn't the despair--it was the extraordinary heroism of everyone in that room. Every person there is conducting an epic struggle than none of them has chosen. And no matter how bad it becomes, they go. They persist. They may get knocked down and even knocked out, but they don't give up. The quintessential characteristic of a true hero. And on top of this they bring themselves to a meeting and share their agony and their anger in an effort to be helpful to others. Such compassion in the face of such odds is simply awesome. No other word even comes close.

ANd now I know why it was so important for me to get to this meeting. And why my trip was delayed. With my new vision I realized that I no longer need that meeting to help me go on. I can and do draw inspiration from everyone and everything I can see and hear and sense. I don't need a far off place anymore, or far-off people--no matter how special they may be. But it still fills my heart with joy to know that groups like these are there. And I learned up front that my change of heart is reflected in my perception of the world around me. And that makes me deliriously happy.

This is a letter, then, about limitless happiness in the face of any distress. If I could, I would shout out the good news from the rooftops--I am re-born! I invite each of you to share my joy, my serenity, my peace. And I thank you all for sharing this journey with me. Your love and support and prayers humble me.

In closing, I want to quote from a panel of the national AIDs quilt that I saw for the first time recently. Dedicated to a young man who had died of AIDs, the legend read, "Angels can fly because they take themselves lightly."

May we all learn to soar with the celestial ones.

His handwritten addition to me is a very sweet attempt to explain to an 11 year old that beauty can grow out of loss, though the loss remains. This was what he wanted people to take from his death, and it was how he wanted to die. My guess is that it's part of how he'd want to be remembered, too.
posted by schadenfrau at 4:29 PM on December 18, 2018 [34 favorites]

Oh, Schadenfrau, thank you for sharing that.
posted by thivaia at 7:54 PM on December 18, 2018 [3 favorites]

Alyssia Abbott, who conducted these interviews, wrote a beautiful book called Fairyland about her relationship with her father, who died of AIDS in the late 1980s.
posted by pxe2000 at 3:43 AM on December 19, 2018 [3 favorites]

As a teenager my best friend's dad died from AIDS and the resulting decades-long impact that has had on her and her family has left me forever carrying this torch and making sure this is never forgotten.
posted by nikaspark at 11:06 AM on December 19, 2018 [2 favorites]

That is beautiful, schadenfrau. I’m so sorry it happened, but I’m very glad to have read that.
posted by Songdog at 5:17 PM on December 19, 2018 [2 favorites]

Thank you for sharing that, schadenfrau. Also:

all I have are a few scant memories (not enough; other stuff was going on, too, and my brain just...didn’t record a lot of stuff)

Stephen King noted once that he couldn't write an autobiography because there was a lot of stuff in his childhood (which was pretty traumatic) that he didn't remember. I could relate to that; I think that the mind often protects itself, not by burying memories, but simply throwing them away.
posted by Halloween Jack at 5:57 PM on December 19, 2018 [3 favorites]

Thank you, Schadenfrau. That is some amazing wisdom you shared from your father.

This year on World AIDS Day, members of The Recollectors were among those who gathered in the AIDS Memorial Grove in San Francisco.
posted by larrybob at 7:32 PM on December 19, 2018 [2 favorites]