social services

Shelia showed up at the doorstep of the Duke Street brownstone holding a paper bag full of nightgowns. She asked simply, “Can I die here?”

The answer was always yes.

From 1990 to 1995, York House Hospice always said yes. And it provided a place of comfort and dignity for the 95 people who died there.

Sitting on her front porch, Joy (Ufema) Counsel, founder of York House Hospice, and Dr. David Hawk, its medical director, sit side-by-side on a swing recounting their time in that home. Listening in, it seems like an intimate conversation between colleagues – friends – who may have over time forgotten the impact they had.

Back when the hospice opened, both recalled York was around third in the state when it came to AIDS. “Others weren’t doing as much testing,” Hawk recalled. “The need was there.”

With a $1 down payment on a house and a promise to pay property taxes, Counsel opened York Home Hospice to feed that need, and brought on Hawk as the medical director. “The drive was there, the fire in the belly,” Counsel said.

Back then, there was fear, prejudice and misunderstanding, the two said. But their role was to offer comfort. Dignity. Joy. A place to “carry our brother,” Counsel said, referring to the fact that they did not have an elevator and rather chose to carry down the sick and dying.

For Counsel, the work was a continuation of her years working as a nurse with death and dying. For Hawk, it was different. “As a medical professional, it was hard to not be able to help,” he said. “It was a real learning experience,” he said turning to Counsel. “You taught me a lot about death and dying. And I’m thankful for that.”

Often times, it was in moments they couldn’t be sure were even real. But for the patients, it was. Counsel spoke of Bernie and how the day before he died, he called her to his bedside. He called out “Do you see them, Joy?” She admitted she could not. But said, “They’re here for you. You can go with them, you’re safe.” The next day, she brought Hawk to his bedside and asked if the others were still there. Bernie mustered all the strength he had to get up on his elbows and look to the left. “No, they’re not here now.”

“That was the first time for me as a medical person that I thought, there really area things we don’t understand about the dying process,” Hawk said. “… It was an invaluable experience that we offered … to be there. ”

The two go on, speaking of other patients – a 5-year-old named Booboo; Shelia and those nightgowns; Steve and the day of his death. Counsel turned to Hawk saying quietly, “I think we made a difference, don’t you?” “Yes,” he answered. Five years in, the need started to dwindle for hospice services. The two thank education, and said that while people were still living and dying with AIDS, families and loved ones understood it more and were willing to care for them at home. “We had a good thing going,” Hawk said.

Before then, there was just so much fear, they said. Hawk spoke of nurses who said they would walk off the hospital floor if an AIDS patient was brought to them. It was hysteria, Counsel said. There was a reluctance to believe public health officials. The president didn’t even address it or speak the word AIDS.

“This was such a wonderful learning experience for me,” Hawk said. “There were living things going on right before my eyes that I never saw in medical school.” For many doctors, Hawk said, when someone is told they’re going to die, the doctor’s job is over. In that Duke Street brownstone, it was just beginning. “We just didn’t have all the arrows in our quiver,” Hawk said.

“That house was a place of joy, respect,” Counsel said, wavering off.

“Comfort,” Hawk replied. “Yes, comfort,” Counsel said. “Comfort and dignity,” he said, gazing off onto the farm.

And when the AIDS Memorial Quilt came around, Counsel said it changed the game when it came to grieving. “None of us wanted our loved ones forgotten,” she said. “This was mine.”

“It’s remarkable from where we’ve come,” Hawk said. “Wouldn’t it be nice if we got here sooner?”

The pair continued talking of the old days, with Counsel’s partner, Linda, whispering later that she worries that after their retirements, the two lost sight of the work they’d done – the lives they changed.

When 12 panels from the AIDS Memorial Quilt are hung in Marketview Arts this month, Counsel and Hawk know they’ll see some of their patients. They know they’ll see some of those family members they helped then – who the quilt is helping now as their sons and partners come home once more.

What do they want those loved ones to know? The two sat quietly for a moment with only the sound of the birds and buzzing bees.

Slowly, Counsel formed her thought: “It was a horrific plague that we couldn’t stop. And that their deaths had meaning. It was almost their deaths paved the way for learning about the disease and treatment.”

Hawk smiled at her, looked up, and with tears in his eyes, said, “I just hope that they remember their loved ones and … that we did the best we could.”

Video and photo by Randy Flaum, York Storyman.

John was diagnosed with AIDS in 1984 at a time when many people – even doctors – still struggled to understand the disease. At the time, many were still struggling with people being gay.

In fact, when John called home to tell his parents he was gay, they took him to a doctor in Harrisburg. His mom, Ruth Schmidt remembered the doctor saying simply – “He was born this way.” There’s nothing to do or change. From that moment on, Schmidt said she accepted it and moved on. It was her son, after all. “He and I had a connection,” she said. “I supported him in anything and everything.”

Sitting in her home at the Cross Keys Village, Schmidt held the framed image of the quilt in her hands trying to remember. After John’s death, she thought about making a panel for the AIDS Memorial Quilt. “Early on, I was quite taken with the thing,” she said. A lot of friends wanted to help out to fill the six parts.

Her finger lightly touching the image, she ran through the list. Golf – from the two ministers from church who took him golfing. (None of them were any good, but they had fun.) A photo of all four of the Schmidt boys. A painting John did that was used in his memorial service. The St. Joseph University pennant – he finished his degree there and loved the school. A Trojan for his high school band. Jazz – he loved jazz. A hand done by one of Schmidt’s grandchildren who wanted to be a part of it. And that hat. John always wore that hat. And it was usually backwards – “typical John,” his mother said with a laugh.

The two were close. “We were buddy-buddy rather than mother and son,” she said. John came 10 years after Schmidt’s third son. “He was quite the surprise.” With the other boys older and moving on in life, it left the pair plenty of time to get into some trouble – usually shopping. They would shop then grab some food. He was a great dresser and loved clothes. Any time he picked something out for her, she just had to try it on.

John started out school at Penn State University. It was within that first year there that he was diagnosed with AIDS. By then, he had decided to move to Philadelphia, where his mother said he flourished. It was his happy place – great apartment, great friends, and a great job. He started working at a law firm and loved it there. He worked there until he got too sick to work anymore.

In Philly, John also had a great doctor, she added. For awhile, medication kept his symptoms at bay. But eventually it didn’t help anymore. That’s when he came back to York. He spent his last two or three weeks in the hospital, Schmidt said. “It seemed like it dragged by then, but now, it really flew by.”

Schmidt has seen her son’s quilt twice since she mailed it away and she’s excited to see it once more here at home. She’s even planning to stay in York with a friend so she can go a few times.

“It’ll be wonderful,” she said. “It’s a connection you have. It’s the only connection I have because he’s ashes … It was a hard road, but we managed.” Back then, there wasn’t much support – for those living with HIV/AIDS and for the LGBT community.

Even at the end, John was making plans. He wanted a guide dog. He made some calls, tried to pull some strings. Schmidt laughed recalling how much she didn’t want him to get that dog. She didn’t want to be taking care of it.

“He was hoping to get better. To get a cure,” Schmidt said.

Join Family First Health for a three-day AIDS Memorial Quilt event and see John’s quilt. For more information, click here.

(Photo and video by Randy Flaum, York Storyman.)

In celebration of Caring Together’s 15 years and Family First Health’s even-longer commitment treating and preventing HIV/AIDS, we are proud to bring 12 panels from The AIDS Memorial Quilt to be on display from June 23 to 25. We want to pause and remember those we’ve lost and reflect on what more can be done to support healthy and long lives for those diagnosed and prevent transmission whenever possible. We acknowledge that there’s still work to be done and ensure that history will not repeat itself.

Twenty-five years ago, Family First Health saw a national crisis impacting our local community – HIV/AIDS was devastating communities and a local response was necessary. Those initial efforts to do something when so many were doing nothing evolved into what we know today as Caring Together – a partnership between Family First Health and WellSpan Health.

Today, nearly 600 people receive medical care and supportive services through Caring Together’s dedicated team of professionals. Caring Together’s work shows Family First Health’s commitment to getting people access to care when they need it.

HIV/AIDS impacts our community today. In the last year, Family First Health identified 21 new diagnoses. In the last five years, we’ve had 138 diagnoses. Locally, the age group with the highest infection rate is ages 25-29. That falls in line with the fact that in 2013, AIDS was the leading cause of death nationally for those aged 25-34. Awareness and early diagnosis is key. Community health centers like Family First Health play a vital role in helping identify the 1 in 5 Americans living with HIV who are unaware of their infection and get them into high-quality, continuing care.

AIDS Memorial Quilt Events

• The AIDS Memorial Quilt will be displayed at Marketview Arts Dale Brougher Exhibition Hall, 37 W. Philadelphia St., York. It will be open to the public Thursday, June 23 from 5 to 9 p.m.; Friday, June 24 from 11 a.m. to 9 p.m. and Saturday, June 25 from 8 a.m. to 4 p.m.
• Thursday, June 23: Opening reception York’s Central Market from 5 to 9 p.m. Groups will be led to view The AIDS Memorial Quilt on the half-hour. Opening remarks will be at 6 p.m. Light food and beverages will be provided.
• Friday, June 24: Free screening of the movie “Philadelphia” at 7 p.m. at the Strand-Capitol Performing Arts Center.
• Saturday, June 25: Full “Bloom” AIDS – Sponsor and plant your own perennials at the Serenity Garden of Hope at Albermarle Park from 11 a.m. to 2 p.m.
• Free, confidential HIV testing will be available at Marketview Arts.

Family First Health has partnered with York College of Pennsylvania and the IMPACT Arts and Culture Conference to bring this weekend of awareness to York. WellSpan Health and the York County Community Foundation provided funding to make it possible.

For more information, contact Family First Health’s Director of Development Courtney Lewis at 717-801-4808 or email clewis@familyfirsthealth.org.

Arlene Bubb remembers the conversation vividly. She was sitting at the kitchen table talking on the phone to her son, Brian. “Do you have AIDS,” she asked, holding her breath while inside her body was screaming “please say no.” “What would you say if I told you, yes,” he asked quietly. Bubb was trying to think of the right thing to say. What came out was the words of a mother. “We certainly would love you and take care of you and have you home here with us and do whatever we needed. I mean, you’re our son.”

Nothing else was said. Brian also never told her he was gay. But she said she always knew. The day she first heard about AIDS, she was cleaning the bathtub and something came on the news. She listened prayed that Brian would never get it. “I thought, you don’t have a son who hangs out in gay bars. … But it was always in the back of your head.”

Bubb sits in her favorite chair most days with a prime view of who’s walking by outside. Over her shoulder are two portraits. One, her daughter Diane. The other, Brian – the photo they used to use of the tie designer when he was in magazines. He was one of the top 10 in the country, she said. Proud of the boy who worked for Perry Ellis and then started out on his own. A clip featuring him in Esquire has the handwritten note from Brian “It’s tough being famous and good looking.”

That was him, she said with a laugh. “There were a lot of things I do to do that I wouldn’t have gotten to do without Brian,” his mother said. Trips to Paris, Milan.

Brian died on July 8, 1993. It was his sister’s 40th birthday. Since his death, Bubb got involved with The Open Group – a group of mainly mothers who put on monthly dinners for those living with AIDS. And then one day, she heard Brian was on the AIDS Memorial Quilt. One of his industry friends did it, she said. It’s Brian’s own self-portrait – a caricature, his favorite. Simple. Funny. Brian. “That’s Brian,” she said. “He had such an amazing sense of humor. I think it also helped to cover up a lot of hurt in his life.” They say funny people are hiding pain, she said, sadly. “I wasn’t there to help or understand. There are so many things I wish I had known then that I know now.”

Bubb has seen the quilt a few times over the years. She road the bus down to Washington D.C. when it was on the National Mall. “Those quilts, they’re just incredible. To see what people put together and about their lives and how they were loved.” Standing there, Bubb was amazed at the vast display of quilts. “There were so many there … and they all had families. It just broke my heart. We sent a man to the moon. We have medicine now. It just came too late.”

Sitting in her chair, Bubb sorts through things that remind her of her son. An Absolute Vodka ad he did – “Absolute Bubb.” A box is full of ties he made. Once he died, she ended up bringing home a suitcase of them. She couldn’t bear the thought of them just being given away or thrown out. Several ties are sown into a throw that sits on the chair opposite hers – like it’s holding his space.

When Brian’s quilt comes home, his mother knows she’ll be bawling her eyes out. But she wants people to think as they remember. “I want them to know that it’s still here. AIDS is still here. It hasn’t gone away. I’m thankful that people now have been able to get on medication. Know that you can live with this. But be careful. Don’t be stupid.”

Join Family First Health for a three-day viewing of the AIDS Memorial Quilt and see Brian’s quilt. Click here for more information.

(Photo and video by Randy Flaum, York Storyman. Story by Kate Harmon.)