My diagnosis of Nonhodgkins lymphoma didn’t hit me with the same sense of dread that an AIDS diagnosis would have. But I certainly noticed an absence of support systems and wondered where that social safety net was located that Bill Clinton used to praise himself for salvaging from the Republican congress. As ugly as it sounds, I found myself almost envious of the attention and sympathy shown to the PWAs. If it weren’t for the help of family and friends I don’t have any doubt that I’d be dining out of dumpsters by now and making up stories about why I need change for the bus from total strangers.
The 95/96 academic year had been one of the least stressful in a decade. Marginal involvement in LA County’s quagmire of public school districts had been an emotional strain. By September of 95 I was teaching only adults – high school diploma preparation in the mornings and English as a second language at night.
Although ”young adults” can radiate plenty of attitude, they don’t have to be in your class if they don’t want to be, regardless of what their probation officer says. There are no referral slips to the Dean in a community adult school. There are no conferences with irresponsible parents either.
I didn’t do much when the swelling under my jaw first appeared at the beginning of May. I didn’t want to spend the money. Working less than 20 hours per week for each district meant that neither district was obligated to supply me with a medical insurance plan.
The swelling didn’t disappear as friends suggested it might. Other symptoms developed. I began to feel listless in the evenings. I slept a lot. Strange aches and pains made themselves known.
By the first week of June I was running low grade fevers occasionally. The joint and muscle aches were stronger now – hot and throbbing sensations usually associated with inflammation. Hefty doses of Ibuprofen became my salvation.
I was grateful for my negative HIV test report. It was a well spent 20 bucks. The private clinic in W. Hollywood had provided courtesy and friendly treatment as well as a cartoon band-aid and a nice lemon lollipop. The mystery only deepened however.
A highly recommended surgeon took a look at my neck. After sitting in his majesty’s waiting room for close to an hour beyond my appointment time, he touched the lump and laughed, insisting that it was probably a dental infection. The visit lasted no longer than three minutes. I was told by his nursing staff that 80 dollars was a special fee for the uninsured. Boy, wasn’t I the lucky recipient of this man’s generosity! Fortunately I saved the receipt. I was later billed for the remaining 70 dollars of his standard consultation fee.
The back of my neck throbbed one night waking me and sending me stumbling to the bathroom cabinet for Advil. Other days the pain was in my shoulder or elbow. Finally after 10 days of sore throat pain and fevers topping out at 101, I gave up, and withdrew 200 dollars from my summer savings for a visit with a general practitioner.
The M.D. was a man close to my age, conscientious but a little naïve. I remember his eyebrow rising slightly when I told him I did teaching for a living. Did he think gay men were all waiters, hair stylists, and sex industry people ? He examined me carefully, took x-rays, and ordered a full blood work-up. The x-rays were clear. Everything appeared to be normal in my blood except for high levels of a protein called LDH (Lactate Dehydrogenase) which the good MD said could be attributed to several things.
He told me emphatically that the lump had to be biopsied. I pleaded poverty. He pointed me in the direction of LA County USC Medical Center, the infamous art-deco structure seen at the beginning of every episode of “General Hospital” on TV.
As I walked up the hill toward the imposing structure on the first of July, I could almost begin to feel the sucking motion of that vortex of bureaucratic incompetence that afflicts public agencies in so many U.S. cities. Nine hours later I found myself clad in a hospital gown and wheeled up to the eighth floor.
The medical personnel in the emergency room had had a field day with me. Half a dozen young doctors asked me the same questions over and over. They were invited to take a look at me by friends and colleagues who swished and gossiped and buzzed around me like a swarm of excited bees throughout the day. They took more blood, x-rayed me again, and discussed me in whispered tones from a distance.
A heavily accented doctor was assigned to me on the eighth floor. He acted as patriarch for a diagnostic team of young interns who looked no older than some of the high school students I used to send to the Dean’s office. Paternalism permeated his demeanor. He seemed to be intimidated at the prospect of treating an English teacher.
When he found out I was gay, he immediately assumed my case was a case of AIDS. My precautions in that area over many years meant nothing to him. The negative HIV test results which came back in a few days prompted a gleeful thumbs up signal as if to say, “How about that !” I resisted the temptation to say, “I told you so.”
As time dragged on it became apparent to me that I functioned in the hospital as both patient and educational prop. The young interns took turns drawing blood and administering tests intended to rule out other possibilities. Lymphoma was considered the most likely diagnosis from the very start.
There were six beds in my hospital room. They were never empty. Drunks and drug addicts vomited for hours throughout the night. My paternalistic doctor lectured them about their lifestyles and behavior during the day. A man with an intestinal infection was continually hallucinating in the bed next to mine. He was in leather restraints but managed to fall on the floor one night, his legs still attached to the bed posts. He claimed there was a police dog under one of the beds growling at him. I suddenly remembered that I have a snoring problem.
One afternoon an attractive competent-appearing woman came to visit me as I lay waiting for another test. She addressed me formally and said she was from some social service agency within the hospital itself or was it the billing department ? She handed me the forms to apply for Medi-Cal and assured me that even if Medi-Cal didn’t come through I would fall under the County Hospital’s ability-to-pay plan which would mean if I had no income and no property, I would not be charged for my medical care. That sounded good to me. Before she left she told me to be sure to get my bank statements to her office by the end of the month. I might receive a bill in the mail if I didn’t. I did it. Months later I was billed anyway. The clerical vortex was just beginning to suck me in.
It took over a month to arrange for the surgery needed for a biopsy on my neck. In the mean time I suffered at home and took Ibuprofen. The fine needle aspirations were inconclusive. One morning I was called in to the hospital for surgery. I was dressed in a gown, stuck with an IV, and ready to be rolled into the O.R. when my surgery had to be canceled due to an unforeseen emergency – a throat slashing or a gun shot – a ten second blurb on the evening news but a week’s delay for me.
After surgery and a conclusive diagnosis of aggressive nonhodgkins lymphoma, I became a hematology patient at the Hematology Clinic of County USC. This feat was accomplished with the help of my surgeon who did some heated verbal arm twisting over the telephone with more clerical people who wanted to wait a few weeks. I sat in a cubicle overhearing it all. I feel grateful to him now.
Labor Day weekend of 96 I lay in another bed on the 14th floor of the same hospital. Four months after I first began to show symptoms for a type of lymphoma that kills people in a span of six months to a year, I was finally about to receive my first dose of chemotherapy. The CT scan showed numerous small tumors in my liver, deep under my arm, and near my heart.
The chemotherapy went well that weekend. There was no nausea. The lump in my neck disappeared within 48 hours. I can remember dreaming about cool clear water and swimming in pools and fountains. These dreams may have resulted from the air conditioning rather than the effect of the chemotherapy drugs.
While lying in my bed one afternoon a cheerful middle aged woman paid me a visit. She was another social worker. She exuded sympathy and spouted a lot of upbeat jibber-jabber as she made claims that her independent organization would help to speed the process of applying for Social Security Supplemental Income. I filled out forms for her, and signed other forms which she claimed her organization would fill out for me.“You need to concentrate on getting better” she said with a smile. “Let us worry about the rest.”
I heard nothing from this organization for two months. My hair fell out. I lost my teaching jobs. I lost the house I was renting with roommates. I had a few possessions in storage and nothing else to my name. I couldn’t collect disability because neither district had been putting any money into the pot. At age 36 I was living with Mom and Dad. The only thing that seemed to be working in my favor was the chemotherapy.
When I finally heard word from the outfit that was allegedly advocating on my behalf it was to ask me for basic information such as my social security number. They hadn’t even filed an application yet !
At about this time (end of October) I received a phone call from a representative of Medi-Cal. She was calm and reasonable. She was calling to find out if I existed or not. Apparently at that time the County Hospital claimed to have no record of my hospital stays in July or September.
Eventually I got a response from the Social Security Administration. They didn’t consider me to be disabled. I wouldn’t receive a cent of SSI. Medi-Cal later denied me any benefits on the basis of the S.S.A. decision. I can still vividly recall the sound of my doctor screaming, “What!?” on the other end of the telephone line when I informed her of this. She was amazed. “Have they examined you? Did they look at your biopsy slides?”
I understand all too well now why there are so many AIDS advocacy groups out there with full time case managers on their payrolls. What did people with AIDS do before these groups existed ? Public agencies are a veritable tornado of bumbling clerical incompetence. Private medical organizations too often seek to squeeze as much money as possible out of the sick and dying. I’m glad for organizations like APLA, but where do you go when you’re HIV negative ?
Welfare seemed to be my only viable option. I called the Welfare office. They told me that I needed a particular form saying that I was ineligible for Unemployment benefits. I visited the local E.D.D. office to get the form. The EDD office told me I was eligible for Unemployment insurance benefits. I wasn’t sure if I were hearing correctly. I was weak, pale, and bald. I told them I was undergoing chemotherapy. They answered that I had been declared “not disabled” and if I had been replaced at work for medical reasons I was eligible to collect U.I.B. I didn’t argue.
I began to collect some money until an infection landed me back into County Hospital for a solid week during the last week of December. Anything even remotely out of the ordinary on a biweekly claim form sends the E.D.D. into a tizzy. A stay in the hospital is a major red flag. Sure enough, a computer printed letter soon told me to be at home on a set date for a period of four hours so that an EDD representative could hold a telephone interview with me. Naturally it was the same day that I was scheduled to go in for a blood test.
I tried to reschedule the date for the interview. No, I was told that was impossible unless I wanted to wait for two more weeks. What about right now while I was on the phone ? Couldn’t I talk with my dutiful EDD representative right now ? “No,” the crotchety voice replied. I would have to call on the appointed date for my interview because that was the way things were done.
The appointed date arrived. I called in the morning from a hospital pay phone only to be told that it wasn’t acceptable. I had to call during the appointed four hour segment of time that afternoon. My doctor finished conferring with me during the appointed four hour segment of time. A five minute prepaid phone card was my only means of paying for the call. I called. As I listened to a synthesized rendition of “Raindrops keep falling on my head”, a recorded voice announced, “You have two minutes of calling time remaining on this card” My EDD representative finally picked up the line. I was momentarily relieved. “Well, let me get your file.” He said. “What was your social security number ?”—More synthesized movie theme music followed. “I’ve got the file now.” The recorded voice I heard earlier while on hold interrupted my representative, ”your calling time has expired. (click, dial tone)”
The next day an EDD “supervisor” canceled my unemployment benefits while I talked with him on the phone. Discharge papers which labeled me as “fully ambulatory” and “under no medical restrictions” were insufficient. He wanted a letter from my doctor saying that I was not medically disabled. In the meantime he told me to seek help from state disability and SSI – yeah right !
I couldn’t ask my doctor for a letter stating that I was NOT disabled since she had already composed a lovely letter stating that I was disabled due to chemotherapy so that I could reapply for SSI and Medi-Cal. She had recently filled out detailed forms on my disability and photo copied my medical records in order to get the student loan people off my back. I had to wait a few weeks and then reopen my unemployment claim before I could begin collecting any money again.
My last dose of chemotherapy was in mid January. I reapplied for SSI, but never received a word in response. A Medi-Cal card finally arrived in the mail in December of 97 almost a year after the last chemo dose. This meant that I could at last afford a consultation with another facility for a possible bone marrow transplant. Hopefully that won’t be necessary, since I’ve been in remission for over 18 months at the time I am writing this, but what if I had relapsed before the Medi-Cal card arrived ?
Trying to get back into the job market was another nightmare. It’s amusing to me how Cancer support group facilitators love to sing the praises of the A.D.A. (That magical piece of legislation which was supposed to safe guard the rights of persons with disabilities by, among other things, forbidding prospective employers from inquiring into one’s medical history). A gapping hole in one’s work history is a screaming siren and indirect questions about it eventually leave one with the option of either revealing the illness or lying in a job interview.
In spite of precisely appropriate credentials and experience, I was forced to give up on the hope of getting back into the community adult school system. I have no doubt that in at least two cases, year-long teaching contracts went to healthier candidates. I played the resume game with classified ads for employment in other areas. It was futile. After being turned down at the welfare office for G.R. because of money in my California State Teacher’s Retirement Account, I made the highly reluctant decision to do regular K-12 substitute teaching. It wasn’t such a bad decision after all.
Baby sitting kids in public schools as a “sub” is a familiar routine for me. I supplemented my income as an ESL teacher this way for several years. In many ways, therefore, it’s actually less stressful for me than it is for starry-eyed recent college grads with fresh credentials. Sweet idealistic education majors are never prepared for the messiness and absurdities of public schools. After everything that I’ve been through, the Long Beach Unified School District almost seems like a model of orderliness and efficiency. Not only that, but I feel a sort of kinship with the urban kids in the class rooms. Like myself, these kids are society’s throw-away items – victims of broken promises and hopeful sounding propaganda, yet survivors nonetheless.
Looking back at this point in time, I must say that I have great admiration for the majority of doctors and nurses at County USC Medical Center. In spite of understaffing and managerial incompetence they dispense necessary medical attention to overflow crowds of people spilling out into the hallways, coughing and moaning like characters from the literature of Charles Dickens.
I’m glad to be a single gay male. It makes me shudder to think of the possibility of children being economically dependent on me. Although it may sound almost too self evident for mentioning, I can’t help but caution people not to take too much comfort in a negative HIV test result. So many other things can go wrong with one’s body. If something does go wrong, you’d better pray that your medical and disability insurance are in perfect order. We may have some of the best medical care available, but God help the uninsured citizen who gets seriously ill in the United States of America.
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