At home or in the hospital, find ways to make the days your own
Late last year, Kevin Frazier was hospitalized with blinding headaches. Diagnosis was difficult. By December 22 (he remembers the date exactly), he was starting his fourth week in Roosevelt Hospital, and still his parents had not called. Frazier, who is assistant director of the AIDS Theater Project in New York City, got the news he'd have to wait in the hospital for a heparin injection until his doctor returned from his Christmas break.
That was the last straw. "There was no way I was going to be in that hospital while the rest of the world was heading home for the holidays," Frazier recalls. He insisted he be released by Christmas. His treatments were started, and Frazier's partner, Francis Blacklock, brought him home on Christmas Eve. "It was nice," Frazier allows, "but I had to let go of a lot of my ideas about the holidays. They've always been family time to me, but my parents won't welcome Francis into their home."
Frazier's experiences typifies how AIDS intensifies usual holiday stress. Psychotherapist Michael Shernoff finds that whether or not you go home, "in the United States, many of us have expectations of Norman Rockwell holidays." Compared to this ideal, the reality of our actual family may provoke diappointment and resentment.
For those who have symptoms, the holidays can cause anxiety and even stigmatization. If we go home, family members may be shocked by the reality of AIDS, with its infusions, round-the-clock medications, lesions, diarrhea and other less-than-festive trappings. Relatives who don't know our status may have to be told, or we may be part of an effort to hide the truth. Either way, those nearest and dearest may have a hard time dealing with the fact that we're sick just when we need them the most.
"Even though I knew their not calling was all about my parents' denial of AIDS, it still hurt, especially at that time of year," Frazier says. This Christmas, he and Blacklock will visit Blacklock's family in rural Ireland. "They are amazing," Frazier says. "In the middle of nowhere, with no AIDS education, they took me in-virus, homosexuality, brown skin, dreadlocks and all.
Dr. Robert Remien, a research psychologist at the New York State Psychiatric Institute's HIV Center, advises taking charge and "reframing" the way Frazier did: "You can't predict what the virus is going to do, but you can control how, when, where and with whom you spend your holidays."
As you prepare for the holiday season, remember that you can make it reflect who you are now. Concentrate on people and activities that make you whole. Ask for help if you need it. Many communities have resources to assist with buying or making presents, or preparing meals. Support groups and 12-step programs can provide tremendous strength. Michael Shernoff encourages his clients to expect the holidays will be bittersweet: "That way we're no knocked on our butts by surprises-grief, loneliness, conflict with loved ones-and we can figure out how to deal with these emotions."
If the conventional holiday rituals don't allow room for all of your feelings, reinvent your celebrations. For Mary Hanerfeld, a New York City activist, her first HIV-related sickness became and epiphany. "Always the dutiful daughter and mother, and painfully aware that our holidays together are numbered, I knocked myself out trying to make the perfect Christmas every year," she says.
After three months in bed, Hanerfeld was just starting to feel better last Thanksgiving. She promised herself the holidays would be different this time. Although her parents have never met her new "families" from recovery and AIDS support groups, Hanerfeld was determined to share Christmas with everyone who had been there while she was sick.
For the first time, Hanerfeld treated herself lovingly, too. "I didn't shop and cook for 40 people. I chose the caterer and the cleaning service, too!" She also made sure everyone talked about the family and friends they've lost, so those people could also have a kind of presence. "I was all about love. My parents got 30 new children," she says, "and I was actually there to enjoy the party, not running around taking care of others."
Shernoff says putting ourselves first this way "is the greatest gift we can offer ourselves and those who care about us."
An HIV diagnosis has led many of us to embrace life more consciously. Without expecting Hallmark-style peace and joy, we can bring this same approach to the winter holidays and enjoy their pleasures. All we have to do is share and honor our true selves.