This August, two fat lesbians who were part of LAGAI’s and other queer communities in the Bay Area, died in Olympia Washington.
Hilary was born in Texas on January 1, 1949. Her father was a civil rights lawyer who was killed in 1958. Hilary moved to the Bay Area, where she was involved in the radical politics of the 1970s, and in martial arts. Eventually, she attended Cal-State Hayward, and became a registered nurse. One of her first jobs as an RN was the oncology unit at UCSF, where she met Lin, who had been working as a nurse for several years.
Lin, a motorcycle-riding gender queer butch, was born in southern California on October 28, 1951, and grew up around the LA area, where she was severely abused as a child. She entered nursing school soon after high school. She started working at UCSF in the 1980s, where she was one of the nurses who volunteered to care for people with the disease that came to be known as AIDS. Both Lin and Hilary continued to be involved with AIDS patients throughout their careers. Both also were Buddhists, and lived at the San Francisco Zen Center on Page Street for several years. They fought to have their relationship recognized within Zen Center, and eventually won the right to live together in one of the apartments. The conflicts at Zen Center caused Lin, who had been ordained as a Buddhist monk, to give up her robes.
Both Lin and Hilary worked briefly for Sutter Health at Home, and were part of the unsuccessful attempt at forming a union. Hilary went on to do home health nursing for the SF Public Health Department, where she became a shop steward in the SEIU. She was on the negotiating team for the SF contract, and among other things won parking concessions and reimbursement for cell phones for home health nurses.
Lin worked as a nurse case manager in an HIV program for drug addicts in Marin County, for a contractor doing medical case management for people being released from California prisons, and after graduating from a masters of nursing program at Holy Names in Oakland in 2002, was hired into a pilot program at SF General to provide better continuity of care for people with serious chronic medical issues. Lin was in pain throughout her life due to injuries from childhood abuse, and later from a motorcycle accident in her late twenties. In the 1990s she developed a degenerative spinal disease, which caused her great pain and disability. For the rest of her life, she struggled, mostly unsuccessfully to obtain sufficient pain medication.
In 2003 Lin had spinal surgery at Alta Bates, during which the dura was torn. She was hospitalized for over a month, and had a serious infection. She was unable to attempt to walk due to deterioration in her hip, which the Alta Bates orthopedic team refused to deal with, since she was fat. She eventually sent her records to Stanford Hospital, which agreed to do surgery on her hip. She arranged to be transferred there by ambulance. About six hours after the grueling ambulance ride, Stanford decided they couldn’t do surgery because she was fat, something they really could have known from her records and phone conversation. That decision meant that Lin would not be able to walk again. She then arranged a transfer to Herrick hospital in Berkeley, in order to get occupational therapy to learn to live in a wheelchair. She retired from SF General in 2005, but continued to live in their Berkeley condo second story loft, with the aid of a chair lift, and some pretty complicated logistics involving chairs at the top and bottom of the staircase. Lin and Hilary rebalanced household chores, so that Lin did the grocery shopping and cooking, while Hilary took on tasks that required greater mobility. Hilary also had a number of serious health crises during that time.
Lin, who had become a transit disability activist, joined the BART Service Review Advisor Committee in 2011. Hilary remained working until 2012. They then looked for an accessible living situation. They eventually took all the money they had from selling their condo, and savings from their years as nurses, and “bought into” the “non-profit” panorama community in Lacey, Washington. Panorama, a large “continuing care” 140-acre retirement community advertises itself as:
Life in our Continuing Care Retirement Community (CCRC) ensures you’ll always have access to health care at Panorama. Should your needs change over time, you’ll have the confidence of knowing we offer Assisted Living, Rehabilitation and Skilled Nursing in our Convalescent and Rehabilitation Center
After they moved, Lin joined the Intercity Transit advisory board for the Olympia area.
And here’s how capitalism killed our friends.
Hilary was diagnosed with an aggressive breast cancer in March. She was scheduled to have a mastectomy in May, but the day before the surgery, her oncologist urged her to start chemotherapy first, because a drug to which her tumor had tested sensitive, had just been licensed, but only for pre-mastectomy treatment. This drug, and the two older chemotherapy drugs she was given were known to have significant effects on the intestines. Following both the first and second treatments, she was very sick. The doctor actually lowered the dosage for the third treatment, but did no tests prior to that treatment, and did not arrange to monitor her more closely after the treatment. A few days after this treatment she required emergency surgery for intestinal perforations, resulting in both an ileostomy and a colostomy. She was in critical care for ten days, and almost died. When the doctors thought the crisis was over, another hole was found in her intestines. She declined further surgery, but after another almost two weeks of supportive therapy she was able to eat a small amount, and was considered recovered enough for them to consider moving her to a skilled nursing facility (SNF), which, “fortunately,” Panorama had one of.
When Hilary began treatment, Hilary’s sisters took shifts in Olympia to help out. Lin and Hilary decided it was time to move to a unit in the assisted living part of Panorama. I was in Lacey helping Lin out during Hilary’s hospitalization, when the administrator for the assisted living facility came by to “discuss” whether the facility was appropriate for her. She circled around the issue for 20 painful minutes, and then said that they couldn’t accept Lin into assisted living, because she wasn’t “ambulatory”. Lin said, what is the definition of “ambulatory?” Lin explained that she could transfer herself into the wheelchair, and was doing so currently. The administrator said that even if Lin were admitted to assisted living, she wouldn’t be allowed to go into the basement (which has 3 elevators for access). Lin informed them that she and Hilary had been attending art classes in that basement for 5 years. They asked Lin, “What is your Plan B?” Lin said, Panorama was their plan B, as they had been assured by the salesperson who sold it to them, that assisted living and skilled nursing would be available. The administrators said they’d talk to someone else, and get back to Lin.
Let’s be clear. When Lin and Hilary applied to Panorama, Lin was in a wheelchair. Panorama put them through an intake process to ensure that they could “meet their needs,” including an evaluation by an RN. Panorama modified two existing units to create an accessible bathroom, kitchen etc. A couple of days later the administrators returned, giving Lin a copy of a portion of a licensing regulation, which said that assisted living facilities couldn’t house residents who were not ambulatory, unless the fire marshal had approved the facility. So, Lin called the next higher administrator, and asked whether they had applied to the fire marshal for approval, and if not, whether they would now. We started looking into lawyers.
The hospital was eager to discharge Hilary, aided by the knowledge that they had reached the Medicare ceiling for payment. Hilary was transferred to the Panorama SNF on Tuesday, August 15, about 48 hours after the hospital had installed a feeding tube into her stomach.
Meanwhile, on August 17, Lin had a number of symptoms, including difficulty breathing and disorientation. She was placed in a room in the Panorama rehabilitation facility. It was not a private room, and it was not licensed for skilled nursing. She may have had a short visit with the on-site primary care physician. Lin later told her friend Diane that it was awful there, and that she would prefer to die in the hospital than return to that unit.
And then, on August 19, Hilary had some sort of catastrophic event. Like most SNFs they could only call 911 for medical emergencies. By the time paramedics arrived, she was unresponsive. She had made her wishes clear, that she did not want resuscitation or intubation. The cancer didn’t kill Hilary, but typical medical inattention may have, particularly because Hilary had a history of blood clots, and had been bed bound for over a month. Lin spoke at the memorial on August 24. Two days later she was in the emergency department of the hospital, and she died on August 29. She had told her friends that she did not want resuscitation, intubation, or any exploratory surgery. As a Buddhist, Lin talked about “entering the karmic stream.” But Lin didn’t make that choice freely. She had come to the end of the line. She was in pain, and the “pain clinics” repeatedly put her through humiliating lectures to obtain less than half of the medication she needed. Before I left on August 15, we had talked about how she might get help dealing with Panorama, but without Hilary, she had no acceptable home to return to.
Hilary and Lin had no wills, although they were each other’s beneficiaries on their pensions and retirement accounts. Lin had no immediate relatives, and Hilary died first. That means that either Lin’s newly discovered cousins, or Hilary’s siblings, will have to fight it out with the state. For now, Panorama has their money, is denying access to the apartment, and is charging rent against the estate.