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We Live in the Shelter of Each Other

Tim, a long time resident of Bailey – Boushay House, in Seattle’s Capitol Hill neighborhood, shared his Friday with three classes of young ladies at a Seattle area private high school.
Tim was diagnosed with AIDS some years ago.
Tim wants to reach out with his story so young people, and others, will give a bit more thought to the choices they may tend to make a little faster than they should. The focus of his talk is around loneliness, isolation and abandonment that are often the not so silent partner to this disease.
Should questions come up about HIV/AIDS he will field them in an appropriate fashion depending on the audience.
His years in nursing, combined with his fight to stay alive, have made him, and others that are infected, experts on the disease.
As he will share with his audiences, “Sufferers of AIDS are living longer, though not necessarily better.”
Tim is generous of his time, though he pays a price for that generosity.

A day before a scheduled visit to a school, business or social organization Tim goes off a number of his meds. He discontinues them because the side effects require him to be close to a bathroom at all times. Vomiting, diarrhea, confusion, tremors and feelings of exhaustion are his constant roommate.
Insulin and morphine, along with a few of the thirty-six pills he takes a day, are all that he allows himself prior to a visit.
He stays in bed for most of the previous day trying to bank the energy required to stay focused physically and mentally as he makes a presentation.
Because it is impossible to get his motorized wheelchair into my car he struggles with a walker.
Drugs, and the unrelenting disease, have him sporting braces on his legs. It is difficult for him to manage walking but he is determined to get from his room to the car.

This particular visit required that he walk about a city block from the parking area to the schools main office.
He needed to stop twice to rest along the way.
I tried wheeling him in his walker but that just left the two of us howling at the impossibility of it all-

Tim sat on his walker as he spoke to each group of kids.
Chairs were drawn in a circle to give a more welcoming feeling and to minimize any separation that might be crouched between Tim and the kids.
For some this was their introduction to a gay man.
For many this was the first time they had ever been around anyone with AIDS.
The kids were surprised that Tim looks so “healthy.”
That observation allows him to share some of the realities of “dying by inches.”
If one can measure silence this is one of those moments.

Tim shares what people’s reactions to him being sick have been over the years. He has had friends and relatives walk away from him fearing they will become infected.
The kids, those who know how one is infected with the virus, are surprised that anyone, here in Seattle, would be afraid.

In one class Tim broke down as he spoke about people who told them they could no longer be around him. Through tears he shared with the girls the story of a couple, who essentially adopted him, when he became so terribly ill he could no longer work or support any of the usual life expenses.
They took care of him in their home for over a year. They insisted he move with them from Kentucky to Seattle.
One young lady took this moment to give him a hug.
Hopefully she will know some day how much that meant to him.

Tim’s sense of the absurd, combined with perfect timing, allowed many laughs to accompany his story. 
He is realistic, hopeful, determined, courageous and beyond all extremely generous.

When I got him back to his room he collapsed on his bed.
He will go back on his drug regimen spending the next two days in bed to recover. As I was leaving his room he asked me when we could do another presentation-

Thanks Tim-

 Bailey – Boushay House

“In 1987, Acquired Immune Deficiency Syndrome (AIDS) cases were mounting in King County, as they were in the rest of the U.S. At that time, the disease was considered fatal. Hospitals balked at the prospect of having to handle all the potential cases, while individuals, government medical programs, and insurance companies cringed at having to pay hospital costs of $600 to $800 a day. Yet for more and more people, AIDS was becoming a part of their lives. Friends or family members were diagnosed; children were born with AIDS; loved ones were dying; and people’s hearts froze when their own blood tested positive for HIV.”

“…Bailey-Boushay House specializes in the complex nursing care needs of people with severe AIDS and HIV-related diseases, with a staff-to-patient ratio not provided in other facilities. Our intensive nursing care model also serves people with disabling conditions not related to AIDS, including:

  • Cancer
  • Amyotrophic lateral sclerosis (ALS)
  • Huntington’s disease
  • Kidney or liver disease, and others

In addition, outpatients suffering episodes of acute illness may enter residential care to regain their health and return to outpatient care.

Bailey-Boushay House functions more like a home with nurses than a traditional nursing home. Around-the-clock care is not only focused on the needs of patients, but on the important people in the patient’s life. Partners, friends and family members are included in creating treatment plans as trusted allies in the patient’s care. Social and cultural diversity is respected and honored by our staff members, who actively participate with families and loved ones to honor special wishes and needs during the patient’s stay.

The residence’s 35 private rooms can be decorated to help every patient feel at home. A living room, dining room, meditation room, greenhouse and four solaria offer open community spaces unique to our facility. Services for residents are designed to help patients with the most complex care needs feel well and engage in restorative activities. Services include:

  • Treatments by occupational, physical, and speech therapists to increase function and wellness
  • Individual and group counseling by experienced social workers
  • Opportunities to exercise, make art, enjoy music, and socialize under the guidance of recreation therapists
  • Spiritual guidance from a pastoral counselor
  • Nutritional counseling and flexible food program supported by a dietician
  • Psychiatric care from an in-house psychiatrist and dedicated social workers

Clinicians at Bailey-Boushay House treat the whole person, not just the diagnosis. Residents facing the end of life are supported in all ways; medically, emotionally and spiritually. In our nurturing environment patients can know the pleasures of living, and experience more comfort and ease at life’s end…”

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