Abruptly, I decide to try the empty apartment where I still have a lease but no heat, lights, emergency telephone or furniture, except a bed. I leave the Crouse Hospital waiting room, go outside and wheel down the hill. The sidewalk is covered with icy snow and I’m petrified of sliding. The cold is killing me. Halfway down the hill, it occurs to me that I could go to the Genesee Grande hotel a block beyond my apartment. Stevie the Wonder POA and I have put me up there several times when the power failed in my apartment building.
So I get to the Genesee Grande and proffer my credit card to the night clerk. She asks for a photo ID. I have none. People in wheelchairs rarely have driver’s licenses. I dig through my pockets and come up with enough cash to pay for one night. (I had intended to take two of my friends out for Christmas dinner at this very hotel.) The night clerk says no, she has to have a photo ID.
Isn’t the purpose of a photo ID to verify your signature on the credit card? And if I am offering cash then why does she need a photo ID? I tell her that I’ve been here before; she checks her records and can’t find me. I tell her that I might have been signed in under Stevie’s name, but she can’t find that either. I debate calling Steve but don’t want to wake him: it is after eleven o’clock.
I leave, remarking as I go that she is certainly lacking the spirit of Christmas only 24 hours past. In these last three days I have often thought of there being no room at the inn.
I wheel across the parking lot to my apartment building knowing that I do not have the fob to open the front door. But, by the grace of God, a man comes out of the parking lot, fobs himself into the building, and I follow before the door closes. He was my only chance: it is late and the first floor is deserted.
I wheel up and into my apartment. There is trash littering the floor every place. Only the hall light is burning. The temperature is 60 degrees and my first action is to turn both living room and bedroom thermostats up to the full high of 80 degrees.
The electric bed is still there because it belongs to Franciscan Medical Equipment, not to me. I take the shower bench out of the bathroom, put it next to the bed, then set the auto BiPAP on it. There are sheets and blankets piled on the floor. I lie down on the bed fully clothed—including hooded winter jacket and shoes—pull a couple blankets over me, and put on the BiPAP mask.
I am home.
Too tired to sleep, I lay there quietly. Thoughts form and a plan develops. There will be no more hospitals or nursing homes. The American medical industry, confronted by an immune disease that prohibits the use of medications, has nothing to offer me.
I am out of American medicine. Now I understand that alternatives are not just little things that make me feel better: they are the core of the treatment that is needed to treat chronic fatigue immune deficiency syndrome (CFIDS). Twice a week, I will get acupuncture, massage and psychotherapy. There will be homeopathy, Reiki and chiropractic.
There will be no more formal complaints and fair hearings. The Year of the Beast, now past, will be allowed to slip into darkness. The American system of medicine does not work. I, a single woman who is poor and sick, have challenged the multi-billion-dollar behemoth that is big government and big medicine and it has left me homeless in the freezing cold and dark of the streets. There will be no more of this. What there will be, within a year, is a book entitled Exit Screaming that details the journey through and out of American medicine.
Instead, I list all the positive things that now will make up my life: lightbox, prayer, Lightning Process, Reiki, the sea starflower, psychotherapy, chiropractic, church, physical therapy, homeopathy, massage and acupuncture. And there will be a slow, steady plod through American medicine to the extent of the immunologist, neurologist, endocrinologist, rheumatologist and pharmacologist/psychiatrist.
I neither am looking for nor expect anything from the American medical industry. I saw the immunologist ten days ago. Five of the tests he has ordered have come back abnormal. My next appointment with him is scheduled for six months hence. First, alternative therapies; second, American medicine.
I drift off to sleep, waking more or less every two hours. On one awakening, I am shivering. My hands and feet are warm but in the trunk of my body I am shivering. I go back to sleep. I awake in the morning knowing that I have had the best sleep in a year.
Upon awakening, I take off the auto BiPAP mask, sit up, and my nose runs down my face. For my entire adult life—49 years—I have slept with a box of Kleenex beside my bed. Now, functionally living in a homeless shelter, there are no Kleenex so I do what human beings have been doing for thousands of years: I wipe my nose with my hand. In the bathroom, I discover that I’m down to the last few sheets of toilet paper. In the kitchen, there are still paper towels so I use them for my nose.
I use the cell phone that is running low on power to call Steve. “Where are you?” he asks.
“In the apartment,” I tell him. I am back home, however minimal it may be.