This is another story from a collection called the Anorexic's Cookbook
I look to the sea. I have floor to ceiling windows in my living room that look west to the Pacific Ocean. I can see the towers of downtown Seattle and the China Gate of International District where I live. On good days I can smell the ocean. On good nights I hear the train whistles. Most of the weather forecast consists of five different varieties of precipitation: drizzle, sprinkle, showers, rain and soakers. I love them all. I can face the storms and greet them like a happy warrior and still see sunlight through my windows. I love my compartment.
But now it is summer and the sun has stalled in the summer sky, beating in my floor to ceiling windows like an oven set on broil. The bedroom off the living room is the only room with a working air conditioner. It’s a small window unit with two settings, Alaska and off. This is where I seek refuge from the current heat wave. I choose the Alaska setting and huddle in a recliner shivering. Only when it’s no longer possible to ignore my thirst or hunger do I venture into the oven.
Today I can wait no longer. I push through thick waves of pulsing heat, much like the portal in a Stargate movie. The hot dry air makes it feel like I’m breathing sand. I notice the temperature in the living room is 89 degrees. I am sweating on the inside. Grabbing coffee, apple juice, yogurt, sliced turkey and cheese, I turn the wheelchair to high and speed out of the kitchen. Halfway back, I run into the bi-fold door to the washer/dryer closet. I knock it off its hinge and it falls on me. The joystick is jammed and the chair stalls. I lift the door with one arm and drop the apple juice with the other. It spills into my lap, drips down my legs and pools under my feet. I turn the wheelchair off hoping to reboot. Its battery is charged but the joystick seems to be shorting out. I close my eyes, take a deep breath and choke on sandy air. Finally the chair moves and I creep along leaving a trail of liquid and food behind me. I turn the corner to the bedroom only to find that my oxygen tubing is tangled around the wheels of my wheelchair. I’m stuck again halfway between the Baked and Alaska.
I attempt some complicated back and forth maneuvers, much like getting unstuck in snow. Ten nerve rattling minutes later I finally make it to the bedroom recliner. I grab for the nebulizer but it’s too late, my throat spasms and the asthma attacks. I can not breathe. Tears stream down my face and I wet my pants. Slowly I center myself and mentally go through the list of cures for the spasms. A sip of hot coffee is the wrong choice and coffee sprays on the only part of me not already covered in juice or pee. It is one hour before I am calm and breathing again. By this time I’ve forgotten about being hungry.
I suppose I should explain about the wheelchair and the oxygen. Twenty-five years ago doctors told me that I had end stage lung disease (severe emphysema and asthma). I don’t know if it was the genes I inherited from my father who died of emphysema, growing up downriver and downwind from steel mills and chemical plants in Detroit or smoking a pack a day for 30 years that caused my disease. Maybe it was all of them. The first doctor gave me two years to live. So I went home and sat in my recliner and waited. At the end of the two years I moved to Seattle, got a new recliner and changed doctors.
Regardless of the location, I have lived like a prisoner for most of those twenty-five years. Along with lung disease, Multiple Chemical Sensitivity (also called Environmental Illness) makes me ultra-sensitive to chemicals in the air. My asthma is triggered by the chemicals used in manufacturing "fragrance” and fragrance is now everywhere. It’s in perfume and body sprays but also fabric softener, dryer sheets, laundry detergent, cosmetics, lotion, soaps, shampoos and other hair care products. It’s also used in air fresheners, scented candles and garbage bags. They are all hazardous to my health. The world is toxic to me and growing more so each day. I am that boy in the bubble. If you come within 20 feet of me with scented lotion, my throat closes and I’m suffocating and coughing at the same time. You are killing me.
I pay dearly for this disease. My compartment is my sanctuary. It is where I can breathe without fear. I rarely shop or venture beyond my sanctuary. If I do I wear a mask and I have a fully charged electric wheelchair to escape any danger. I haven’t been to a movie since Christopher Reeves was Superman. I haven’t been out to dinner in this century. My friends have disappeared and I have few visitors.
What I do have are caregivers. Medicare pays for home health aides to visit me and help care for me. I often say that my caregivers come from Central Casting. I've had Muslims dressed from head to foot in black Hijab. I’ve had a former Thailand model, whose ten year marriage to a rich American businessman ended when he got a younger model. She came to work in 4 inch stiletto heeled boots and pants so low rise that her couchie was showing. She couldn’t clean house or cook and her main activity was eating lunch and talking on her cell phone.
There was also Koo, who was like the grandmother character out of a Korean drama. She was over 80, often forgot how to use the stove but always remembered what I needed. She would shop on her days off and bring me gifts. She gave me a tea pot, a pair of Chinese slippers and a brass bird to match my brass egg. Once she honored me by making porridge out of pine nuts to heal my broken body. In Korea only the upper classes eat this porridge. Unfortunately it tasted just like pine nuts.
Then there’s Ruth who worked for me until she got pregnant. She cared for me like a loving daughter and often baked her special bread just for me. She is from Eritrea an island of Christianity surrounded by Muslim extremists. Eritrea is so dangerous that the US no longer has an embassy there. Ruth like a Bible heroine, traveled back and forth several times while pregnant to bring her children here to Seattle. She was planning on having them fly out of Cairo. Then the anti-Muslim film incited protests and attacks on Coptic Christians and it was not safe for Ruth’s children in Egypt. The result of a film mocking Islam was that Christians died. Finally a few months ago they arrived and she is busy being a mother.
Until recently Judy was my caregiver. I call her my sister wife because she is stuck somewhere in the 1950's. She dresses in mid-calf skirts, shirt buttoned to her chin and black loafers. Her hair is long and kept tightly braided and in a bun and she wears no makeup. She tells me that she is a member of a church with no name but some people call them the Two By Twos. Her first day I took out my rosary beads and it looked like she’d seen Lucifer himself. She ran onto the back bedroom where I found her on frantic prayer. One day Judy commented on the George Zimmerman trial that it was a waste of money but “we have to do it or those people will riot.” I rather vigorously reeducated her. She quit the next day.
Finding a replacement for Judy has become the search for the Holy Grail. There are layers of bureaucracy that must be conquered to find a suitable caregiver. First there is the case manager at the government agency that oversees aging and disability services. Instead of hiring caregivers and assigning them to specific cases, they hire agencies. These agencies in turn have a staff that turns it over to another case manager. This person does the actual hiring of the caregivers. There is a separate agency that is hired to actually make the payments. The government oversees a collection of private contractors who supply the caregivers and make the reimbursements. At each step these contractors take a cut and pass the responsibility on. Solving problems is like doing so through Congress.
In the past I’ve had case managers who were true advocates. My very first case manager literally saved my life. He researched programs and organizations that dealt with my specific needs. If I was troubled he was a phone call away. Not just maintaining but enhancing the quality of my life was his goal. I owe him an enormous debt. When he found out about a pilot program for independent folks, he thought of me and suggested I try it out. That’s why when I got a new case manager who was at best incompetent and at worst negligent – it took me awhile to believe it. The people who do the refinancing of home mortgages must have taken lessons from her. Paperwork takes weeks to process and then I’m told it’s lost or see needs more information. Phone calls go immediately to voice mail and are never returned.
When the agency that sent Judy called to tell me she was quitting I was very upset. I couldn’t believe it. I was convinced that God sent Judy to me so that I might save her racist soul. Her leaving meant I had failed. The current heat wave coincides with Judy’s leaving and I wonder whose side God is really on.
Over a decade ago I remembered that I’m a Catholic and found my way back to mass. I was blessed to find the best Catholic Church on earth with the largest collection of great souls outside heaven. David is one such soul. He’s mid-70 and works taking care of elderly Jesuit priests at a Catholic University. David also spends one day a week with a Buddhist mediation group and for the last fifteen years he has spent every Thursday with me saying the rosary and giving me communion. He has seen me through some dark days. He not only brings me communion, he brings jazz, books and cheeseburgers from Dick’s Drive In when needed.
A few months ago I started saying the rosary every morning before coffee and cable news. It lifted my spirits. Not long after that I had some fantastic dreams. One night I dreamed I was being baptized in a river. It was a glorious feeling and I woke up feeling redeemed. When I told David about the baptism dream, he said, "Jesus says unless you are baptized with the spirit....." He stopped mid-sentence and gulped. Then I told him the next dream. In it I was wading into a mountain stream with my pants rolled up. The water was cool and crisp. As I stood there, I noticed a story come floating by...a woman in the supermarket was pushing a basket. I was intrigued but it rushed past too fast for me to grab it. Then another story, a man bent over an automobile...I grasped but it was gone. Another... a child waking up in a crib, a girl waiting for a bus, a doctor alone in his office. They rushed past one after another - all the stories of people’s lives - rushing past me as I stood there in the river. When I woke I thought "Oh! Stream of consciousness" but David said, "Fisher of men". As he left that day he said, "You never know where the seeds will sprout". I don't think he means to nominate me for sainthood, but I think he believed I had sprouted. I was hoping to sprout a pair of wings. I thought in the words of the immortal Joni Mitchell “I’d get my gorgeous wings and fly away, only a phase these dark café days.” I was praying the rosary for me. I wanted to be released from this prison; I wanted an end to my dark café days. I wanted to fly away. But I did not get my angel wings, it’s more like Icarus and I’m melting in a heat wave. I am no longer saying the morning rosary. I am raising a fist to God and shouting “Why?”
Without a caregiver I’m alone trying to take the garbage out with a wheelchair that stalls. I called the Medicare authorized wheelchair repair. They replaced the battery even though I told them that wasn’t the problem. The problem is the joystick. Fully charged and set on high, the chair crawls along at a snail’s pace. Sometimes it stalls out halfway to my destination and I have to wait for it to agree to move again. Sometimes you get one foot from you destination and then it’s supercharged. I’ve run into every wall and every appliance in my compartment. I’ve almost crashed into the bathtub, flipping out of the chair and into the tub. But repeated calls offer no relief. I’m told to make sure my battery is charged. I called a different service provider and they asked to speak to my caregiver. I explained the caregiver works for me; they need to speak with me. She asked, “Who else has authority to sign on your behalf if you are indisposed?” I told her “No one. I do not suffer from dementia or Alzheimer’s. I run my own affairs.” It still took another five minutes to convince her that I was not going to put an adult on the phone. I hung up.
People always nod and tell me they understand my fragrance allergy and then walk into my apartment wearing scented shampoo. They say, “oh I didn’t thing THIS would bother you. It smells so nice.” When they leave they don’t take their fragrance with them. It stays here. I use fans and air conditioners and air purifiers to get rid of it, but it stays. Sometimes it hides in a corner and when I least expect it the fumes waft through the air catching in my throat and causing a spasm. This is intensified by the heat wave. The air is not moving. It hangs in my living room like thick fog. I put a fan in front of the bedroom door to protect me but it doesn’t help.
After two weeks of interviews where I’m the guinea pig, my lungs are full of fluid and my COPD is exacerbated. My breathing is so labored that answering the phone has become impossible. I am limited to bathroom trips. I could go to the emergency room but I learned long ago that the ER is not like the one on television shows. George Clooney no longer works in the ER. Dr. House will not diagnose my condition and find ways to alleviate my symptoms and McDreamy will not do surgery. It’s more like trying to get a note from the nurse to get out of gym class.
Then I remember a movie I saw called “One True Thing” with Meryl Streep. In it Streep is dying of cancer and her estranged daughter comes home to care for her. As the disease progresses, Hospice is called in to help. The Hospice women bring brightly colored quilts, baked goods and pots of tea. They are cheerful women who help mend the fracture in the mother-daughter china. In my mind I think of Hospice that way. I wanted those tender women would come and pamper me. In that wistful daydream, my daughter comes to my bedside and discovers that I too am a “one true thing”. Then my wandering son shows up and the two of them become siblings again and there are brightly colored quilts, baked goods and pots of tea. Sadly I have discovered that Hospice is more like the subprime banker. This is the new pool of government money “entrepreneurs” are waiting to exploit.
First I met with two intake workers from Hospice, a social worker and a nurse, in the lobby. I went through a tedious process and explained in detail my sensitivity to fragrance. I told them it’s not a preference, it’s an asthma trigger and exposure to it is deadly for me. They assured me that they were both fragrance free and the social worker had even worn a covering on her head to be safe. After a while I relaxed and allowed them in my house. They are not angry or upset about being force to wait, instead they smile and nod and say they understand. I stay on the other side of the room and invite them to sit on the sofa. As they speak, I move closer. They tell me that its company policy and they have no problem accommodating my fragrance free environment. The social worker leans forward and tells me in a comforting tone, that they have so many helpers for me; a Chaplain, a Social Worker, a bathing technician and of course my own special Nurse. They assure me that they are all Fragrance Free. I feel rescued and redeemed and I happily sign the stack of papers without even reading them.
That changed a few days later when a fragrance wearing Chaplin refused to leave. She kept walking towards me saying, “Oh yes, I DO UNDERSTAND!” and holding out her arms. The next day a nurse who "has other clients who are sensitive to fragrance" so she knows all about it - had used scented shampoo the night before. When I told her it was creating a problem, she argued with me because she knew better than me. After that a series of people visit me, all of whom (in my Mother’s words) smell like a French whorehouse and treat my requests as the ravings of a mad woman. As the temperature rises, I spend days with acute asthma attacks. My own special nurse turns out to be more like Nurse Ratchet from “One Flew Over The Cuckoo’s Nest”. Later she calls to continue telling me I was wrong. Then she told me "we can't tell our workers not to use scented laundry products or shampoos" because it infringes on their rights. Hum, but you do tell them not to smoke.
The next thing I realize is that they have taken over my medical equipment. My brand new $1500 oxygen concentrator is replaced with an older model that sells for half of that. Part of my prescriptions will be delivered by their pharmacy that’s 40 miles away and the rest I will still be responsible for picking up myself. They deliver a special bag of medication to be kept in my refrigerator. It’s sealed tightly but I’m a nosey person. I check out this special bag. It contains none of my medicines but does contain morphine and a bottle of Haloperidol. I feel as if I’ve seen a rat or a gun in my refrigerator. I gasp. Haloperidol is the punishment drug of the lunatic asylum. It creates zombies, compliant stumbling zombies. Thirty years ago the Soviet Union was universally condemned for using this drug to break the will of imprisoned dissidents, and now it’s in my refrigerator. The label says, “For agitation”. Nobody thinks this is a drug suitable for the treatment for an elderly patient. I know I’ve got a killer Twitter but just when, I wonder, when did I become a Russian dissident?
But sitting in a pool of pee and apple juice, weighing whether or not to answer the phone that’s just started to ring, I know the cavalry is not coming. It’s Hospice. They want in. They know I’m alone and helpless and if only they can “calm me down” with Haloperidol, then we can forget all about my silly threat to cancel the contract and they can ignore my “imaginary” fragrance allergy. I am not answering the phone. I am not letting them in. I will stay in my apple juiced, peed state. I have decided to fire Hospice or die trying. It is like trying to get out of a prenuptial agreement. I should have read those papers. I called again. The form had not been mailed and they wanted to come discuss it with me in person, a two person team. I said no.
When I asked how much I would be billed for the two weeks of my time they wasted, she told me I wouldn't be paying Medicare would. Which really irritated me. "Who do you think paid into Medicare for 50 years to make that possible?" I said. It's not some other person's money that pays their salary. I'm not getting a free service. It’s MY MEDICARE that I paid into and if they are discriminating against me because of my disability then Medicare should stop paying them for any respiratory patents. I told them that if they could not accommodate my needs then they would be unable to service any patient with respiratory problems. Medicare should not pay them for discriminating against respiratory patients. I hung up the phone and another week passed.
At this point I thought, “Can it get any worse?” As soon as the question entered my mind I knew the answer, “Yes it can.” I could be the government employee who just got 80 new clients and all of them think they’re special. I could be Ruth, one baby on my lap and one in my belly, a religious minority in a land of violent revolt. I could be and elderly Korean woman working for a thankless American woman. I could be a fading beauty queen learning to earn a living at forty. I could be a woman whose God it relentless in his demands. I could be a girl held captive in an Ohio basement, a child dying of hunger in Africa or a homeless man on the streets of Seattle. It could be so much worse.
I do not know why a good God allows suffering. I don’t know why good people allow it either. But we do. With all the best of intentions we become petty and small minded and we harden our hearts to each other. Myself included.
God does not send the Cavalry. God sends us. God is not the destination, God is the journey. Or as Ram Dass says, where the mind clings is suffering. I am suffering. I must change my mind. I should have remembered what Jesus said. Ishouldyave remembered what my friend David said. I should have been fishing.
