By Roberta Binder
The back story …
Sometimes minding our own business references our own inner personal business. Pam Siekman, President of the Board of Directors of WNCAP (Western North Carolina AIDS Project) began her walk into an unexpected journey many decades ago when she was working for Digital Equipment Corporation, also known as DEC. Digital was part of cutting edge computer technology back in the 1980s and into the 1990s, a time when America was just beginning to hear about HIV/AIDS, then known in medical circles as Unknown Patient Disease.
The early 80s found her living in Atlanta, Georgia working in the executive offices, “I found myself watching a friend and colleague’s body going through subtle changes. One day he confided in me that he was HIV positive.” Pam begins her story.
“DEC was very progressive, so we had this training come down from the corporate offices; paper was put on the conference room windows. Management was being trained all about the fears of this new disease.” Fear and certain death were all people knew at that time. As Pam sat through this training with her friend and colleague Sam, she knew his quiet pain. “In the end only about three of us, who were all colleagues, went to his funeral – his family wouldn’t say what he died of. This was my first experience with the stigma of AIDS.”
Pam received a call from another dear friend she hadn’t seen for a while, she had known him from working together in Florida and later in Atlanta. He said his parents were coming to take care of him. She instinctively went to visit him immediately. “Mark had never told his parents he was gay. When I arrived to visit Mark’s parents were already there. I was holding Mark’s hand as he weaved in and out of awakening. His father came in and said, ‘You know you really shouldn’t touch him. They don’t know about this disease.’ [Mark] was like a brother to me – I held his hand, kissed him and stroked him, rubbed lotion on his feet,” Pam recalls. His father chain smoked while pacing in the driveway outside blaming himself.
Soon after Mark’s death, Pam was transferred to DECs main headquarters in Boston. Pam shared an apartment for sometime with her best friend Nick who was another gay man. “I was telling Nick about Mark’s death in Atlanta and said, ‘You’re healthy right, you’re healthy!?!’ The look on his face told me the answer and I just said, ‘No.’”
Nick responded, “Yes, I’m HIV positive.”
We are now in the mid-1990s. Pam and Nick remained best friends and were roommates for about a year. Nick worked full time; he was an executive at Digital with excellent health insurance benefits. Then he slowly started to get sick, his numbers started to shift and he became full blown AIDS. He had to resign and go on disability. Nick lived for another year.
Pam continues, “I watched a really smart group of professional people remain still attached to stigma and discrimination. It really always bothered me; I just couldn’t and still can’t stand it. These people, important people, that I have really loved in my professional life; so I decided that when I didn’t work anymore, I would work for change. At that time my position was Organizational Design and Development and Change Management. So I really helped bridge a gap between employees and management communications through change management and strategy.”
These were the boom years in the computer industry; it was in constant rapid change. And it was an exciting time to be involved in the opportunities within this growing world of technology that were taking place. It was a time of being a part of a technology family that was growing and learning together. And yet, even within this tightly knit family, we threw aside those we couldn’t understand and were unable to release the stigma attached to HIV/AIDS.
“Nick, who was so admired in the business community, asked me to tell some of the senior management team he was going out on disability … they ran away. And I said, ‘No, run back. No, this is wrong. This is affecting a whole group of our work force, our employees and you have to accept and make it okay.” You can still hear Pam’s frustration in her voice as she shares the story. “Nick was 43 when he died – so young. All these people died way too soon.”
On to retirement …
Time went on. Pam made a commitment to NEVER forget. She met the ‘wonderful man’ who is now her husband. They have been married for twelve years. They moved back here five years ago. It was coming on November and Pam started looking around for what was happening for World AIDS Day (December 1). “Wherever I lived there was always some event and acknowledgment.” She couldn’t find anything.
That following spring, 2008, Pam saw a poster for Dining Out for Life and realized that there was in fact an AIDS agency in Asheville. Pam knew this was the group she had been searching to find. A friend put her in touch with Harry Brown, a volunteer and special events coordinator for WNC Aids Project (WNCAP).
WNCAP services 18 counties in WNC through a dedicated group of individuals who provide HIV/AIDS related services including client support, case management services, prevention education and outreach activities in a collaborative and financially responsible manner.
Over that lunch as Harry and Pam shared stories, Pam proposed doing an event for World AIDS Day – bringing panels of the Names Quilt to Asheville and thus Pam found her voice and her home. “What I love about the quilt blocks is that sometimes you have the Mom’s who lost their sons, who made quilts. That first year, I had three Moms who lost their boys. We were able to bring their panels. Each year we bring 20 blocks. Every year, prior to requesting the quilt blocks, we put a call out to the Asheville area to people who have made quilts to step forth and we will try to bring the block with their quilts.”
Each year in March, Pam brings together a group of people who would like to make an honoring quilt. You don’t have to sew; there are many people who are happy to help with the sewing. You don’t have to be especially creative: a loved one’s name, favorite t-shirt, special picture … memories don’t come with a specific design and there are no requirements, only suggestions. It is the work of the heart. The new quilts are honored in an induction ceremony each December 1 during the AIDS Day vigil, always a moving experience and precious story.
WNCAP has over 500 clients. With the downturn in today’s economy, HIV/AIDS is becoming more and more a disease of poverty. The client base added 95 new clients this year. Our communities still need education.
“We are once again seeing a growth within the teen population, pregnant women and the elderly. There is a definite upswing in the 13 to 24 year old age group. HIV/AIDS at this point has crossed over to the heterosexual community. We are seeing a high risk in women in their 60s and 70s. They had a monogamous relationship and their husband has died. I was talking to a group of women one time and a woman came up to me and said with some astonishment, ‘My daughter told me I have to use a condom. I’ve never used a condom’!” Times have changed since these women grew up in the 1960s and 70s – the era of free sex for everyone. Actually, times have changed since HIV/AIDS was on the consciousness of Americans; it has become once again something that happens to “others”.
Pam welcomes the opportunity to speak to women’s groups. She also notes that caseworkers will ask her to visit with women who are in the hospital. “I remember one woman I visited. Homeless, estranged from her family who had disowned her because she had AIDS. I walked into her room and she was reading her Bible. She was being released in a few days with nowhere to go. Can you imagine being in the hospital, going through so many tests, the hospital has totally depleted you [as has your health challenge] and you are going to walk out in a few days with no home to go to?” WNCAP got her into a shelter where she died soon after, peacefully in her sleep.
I asked Pam what can we say to the female community at large that can support them on this topic?
“I love the power of women. Women can make things happen. If women could really get together, women could help in the fight against AIDS in education, prevention and advocacy. Women are great advocates when we put our minds together and we get energized. We could go to Raleigh and really advocate for change. And I think women could step-up and educate other women and their children and stop the stigma. Changing the stigma is so important, to peel back those filters and see that we are all just people, we have differences and that is okay. So I think the stigma is huge. I would love to engage more women – to use their voices. We would love to engage women’s insights, energy and passions to help our work at WNCAP move forward here in Asheville and especially in the outer regions of WNC. We have many volunteer opportunities that they can find out about them by calling me or through WNCAP.org. I’m happy to speak at woman’s groups or luncheons.
“We send our staff educators to boys and girls clubs and after school clubs for kids. We provide age appropriate educations including elementary school. Another project that offers volunteer opportunities is through Loving Food Resources, which delivers food to people in need. Driving clients to their doctors’ appointments is another opportunity, especially in the outlying townships.”
Pam laughs easily, her personality is warm and welcoming, and she knows when to open those loving arms to deliver a hug as needed. Last year was the 30 year anniversary of what we now know as AIDS. The pain of losing loved ones to AIDS never goes away. There is one thing all of us who have walked that path know for sure: We will NEVER forget. We’ll never forget AIDS is a disease that still doesn’t have a cure. AIDS is a disease that still comes with great stigma. We hope for the day when this continuing epidemic is over.
Pam Siekman has made it her business to continue her dedication to the memories of Mark, Nick and so many other loved ones she has lost through her commitment to ‘NEVER forget’ which has brought her to the WNCAP Board. She considers it a great honor and a never-ending passion that she plans to embrace for many years to come. Her professional background enables her to fill her position with knowledge and a positive action plan. Her light shines and will continue to shine in Asheville and throughout Western North Carolina; know you are always welcome to join her and there are many opportunities open and waiting.
This year World AIDS Day vigil was closed by Rev. Sara Wilcox. She reminded us all that, “The work is not done. We need to Share Our Stories. We live in a community that cares for its people. Keep that light burning …” I hope to hold her words in my heart and tell the Story when the opportunity arises of those I’ve loved and lost to AIDS, and I truly realize through the honor of writing and researching this article, AIDS has touched ALL of our lives. We will NEVER Forget.
You can reach Pam Siekman through www.WNCAP.org or email her PamSiekman@earthlink.net. Pam photo was taken at the December gathering of the Names Quilt by Frank J. Bott, photojournalist.
Roberta Binder, Facilitating Clarity through Mindful Editing at RobertaEdits.com. She is also a writer and photojournalist who enjoys all her writing adventures with WNC Woman – Women Nurturing Change!