I am a writer and an activist. Because I have exercised my birthright to speak and write, I have been held in an isolation room in Crouse Hospital for 82 days.
The room I have lived in these several months was designed to isolate a person with a communicable disease. I have no such disease. The room is about ten feet wide and twelve feet long. The bed is placed in such a way that I cannot see into the hallway. Between my room and the main hallway there is a short hallway that can be closed with two doors.
There is a very large window in the room. The view is entirely filled by the brick façade of the physician’s office building across the street. I cannot see any trees, people or traffic. I cannot see the sky. One block away from me is the Newhouse School of Public Communications, which espouses freedom of speech. I cannot see that either.
On May 24, 2013, I was ambulanced to Crouse Hospital. I have chronic fatigue immune deficiency syndrome. The immune deficiency aspect of that makes it impossible to take any medications to treat my other illnesses: diabetes mellitus, chronic kidney disease, nephrogenic diabetes insipidus, depression, severe obstructive sleep apnea and half a dozen lesser ailments. My doctor had told me that there was no hope. I was going to die.
At Crouse, I was admitted to a semi-private room on 6 South where I was treated for two urinary tract infections, and nursing home placement was sought. During the five weeks that I was on 6 South, I had several different roommates:
• An 80-ish woman with a broken shoulder and two adult daughters. We enjoyed each other’s company. They liked the music I played on Pandora and asked me to turn it up. We rested in companionable silence. When it came time for my roommate to go home, I was able to provide very helpful information about service providers and medical equipment vendors. They expressed their gratitude.
• A younger woman who was detoxing from drugs prescribed by a physician for pain. She had become a pill-seeking drug addict. She, her husband, and I became close as we worked to get her to face up to her addiction and agree to go into rehab. Her husband was particularly grateful for the way I stood up to his wife’s manipulations. He declared himself liberated from those manipulations and began to stand strong to get his wife the help she needed.
• A woman who was born the same day that I was. We both had most of the same illnesses, except in different proportions. She came in on a Friday and had repeated crises over the weekend. She tended to think of them as anxiety attacks but I didn’t think so. We talked quietly all weekend. She told me the stories of her life—marriage, family, work, sickness. She hurt all the time and told me she was ready to die. On Monday she was taken to the cardiac catheter lab, and died. I was able to tell her family that she had been at peace and welcomed death.
• A middle-aged housewife who’d had back surgery. She was on the phone telling her husband how great she was doing, until the doctor walked in. Then she claimed to be in a lot of pain and to need drugs. I didn’t know what to do. Say nothing? Say a few words to someone on the medical team? I chose the latter.
Shortly afterwards, she was moved out of the room. Since that day, I never have been allowed to have a roommate and a semi-private room at Crouse Hospital.
At the end of five weeks, I was moved to the Iroquois Nursing Home rehabilitation unit. It was a lovely place and I was happy—except that the doctor would not see me to prescribe pain medication. I followed the nursing home directions and filed a complaint. He responded by faking the need for a psychiatric consult, having me ambulanced back to Crouse, and then refusing to readmit me.
This time Crouse admitted me to my first isolation room on the fourth floor. I accepted it without objection because I was busy dealing with the Iroquois business. I filed for and got a hearing in which a NYS Dept. of Health administrative law judge ruled that the Iroquois had not done a discharge that met the requirements of law and so they had to take me back. After three weeks at Crouse, I was moved back to the Iroquois however, instead of putting me back on the rehab unit, they put me on the palliative care unit.
Palliative care is a land of breathing corpses. There were thirty-nine other patients and not one could carry on a two-sentence conversation with me. Most of the aide staff were from Bhutan and did not have conversational English. The Iroquois illegally took away my power wheelchair, thereby trapping me in bed. My roommate had dementia and could not use the call bell. One day she cried out for help eighty-one times in forty-five minutes. The Iroquois notified me that I did not need skilled nursing and was being returned to independent living in the community without any supports. I took an overdose of medicine to end my life, but failed.
On September 11, I was admitted to Room 5008, another isolation room, at Crouse Hospital. The law requires that neither a hospital nor a nursing home can discharge a patient without an acceptable discharge plan. I called for another hearing, the result of which was that a different administrative law judge from the Dept. of Health ruled that, again, the Iroquois had not done a proper discharge plan. The judge ruled that the Iroquois had to find a proper placement for me. I told people that the Iroquois was my legal residence but I was living off campus.