Ruby House served as a home for people with AIDS. It was home for people recovering from acute infections, adjusting to chronic conditions, and a place for people to die. The home opened in Winston in 1988 and moved into Roseburg in 1991. It served the community until 1998.
During this time, 110 people lived at the home, 87 of whom died there. They ranged in age from 21 to 72. They came from all walks of life, concert pianists died alongside homeless. The older men and women had relatively peaceful ends. Most of the young died hard, their hearts beating, their lungs sucking air long after there was no hope left. All we could do was keep them clean and relatively comfortable.
In those early years, the dying years, people succumbed to opportunistic infections: cancers and microbial diseases that normally do not harm people with a healthy immune system. Most common was a pneumonia, PCP, caused by a one-celled animal and a rare, relatively benign, cancer which normally occurred in elderly men of Mediterranean ancestry, KS. Less often a flesh eating microbe, MAC, literally ate people alive. If you want to learn more about a subject, Google the acronym with HIV or AIDS.
A typical scenario was that families took care of their own. The person living with AIDS slowly deteriorated to the point where they could no longer be cared for at home. For a young white person that period was usually 18-24 months. By comparison, a black woman living in New York City had an average life span after diagnosis of just three weeks.
A local youth was placed with us when MAC ate through the roof of his mouth into his sinus cavity. His loving parents had cared for him at home for two years. They were exhausted. They couldn’t take any more. He lived another six weeks at Ruby House. In the end, he drew breath through the breach.
KS usually began as tiny purple spots on the lower legs, often spreading to the upper body, head, internal organs, and joints. One Winston man had football size lesions on his back. Lacking circulation, the inner tissue became gangrenous.
A Eugene man had a lesion on his ankle joint. Before he died the lesion almost totally separated his ankle from his foot. Another moved into Ruby House when the lesions destroyed his digestive tract.
PCP, the pneumonia, slowly suffocated its victims.
Besides being the worst health care crisis of our lifetime, it was extremely politicized. GAY Related Immune Deficiency (GRID) was its original name. Then it was AIDS, ARC, SIDA in Spanish. The Virus was first identified at HTLV-III. Now it’s called HIV. No one was immune from the politicizing.
A culture of fear and misinformation permeated the times. The worst among us called it God’s Wrath. Many blamed homosexuality and/or drug use. Some even blamed the Haitians! This was the 1980s. Politics and medicine made queer bedfellows.
It wasn’t all horror. There was a strong sense of solidarity at the house. It served as a community center to a mix of clients, family and volunteers. People laughed and loved.
Volunteers from the local homosexual community were first to volunteer at Ruby House. There was a Gay & Lesbian Community Center in Roseburg. It was the only one in the State at the time. Volunteers were recruited from its numbers.
UCAN (Umpqua Community Action Network) was the first social service organization to support the AIDS home. They provided funds to help clients keep a roof over their heads. Mercy Medical Ceter soon followed with financial and nursing support.
Mainstream churches made commitments. Besides volunteers, the church groups brought home-cooked meals, transported clients and offered moral support. Students from UCC joined in. The Psychology and Sociology programs gave students credit for volunteering at local social service agencies. Nursing and theater students also participated.
Volunteers started making presentations to community churches, college classes and high school health classes. The message, backed by the reality of Ruby House, was well received. A group of students from Roseburg High School came out and cooked lunch for the residents one day. During the holidays, carolers filled the house with song. There was always something going on.
The home put a face on AIDS. It was no longer something exotic and far away. By example, the volunteers educated the community about HIV transmission.
The powerful combination of medications introduced in the late 1990s had redefined HIV disease. It is no longer an imminent death sentence. Now most people living with HIV, like most people living with chronic conditions like Diabetes, have to take medication for the rest of their lives. They have to live a healthy lifestyle, no excessive drinking and drugging. And they have to be in the care of a physician. Medications for HIV disease cost, at a minimum $20,000 a year. It’s an expensive illness. But most important, HIV is still contagious.
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