The Somebody Done Somebody Wrong Song

Pandora is playing “(Hey, Won’t You Play) Another Somebody Done Somebody Wrong Song” sung by BJ Thomas.

It is a hot summer day and we are having a drink in a little bar out in the middle of nowhere in Upstate New York. We were supposed to be on our way to a big family weekend campout at my brother’s place, which was out in the middle of nowhere, but we got lost and couldn’t find Nowhere so we stopped at the bar.

And sitting at the bar, “Another Somebody Done Somebody Wrong Song” came on the juke box. John and I, without comment, saluted each other with our beers, grinned, and began to sing along. John and I were not so much lovers as survivors.

He and his second wife had left California—she was pregnant—and moved back east to live with her parents in a ritzy little community on a nearby lake. He opened an employment agency and was working hard to make it a success. Then she miscarried the baby and blamed him.

One night he came home from the agency, they all had supper, and then she said she was going out to the movies. Shortly thereafter, two deputy sheriffs showed up at the door. They served him with divorce papers and escorted him off the property with little more than the clothes on his back.

The love of my life was a Marine Corps fighter pilot. On Thanksgiving Day I mailed him a letter saying that I would be joining him on base as soon as I could make arrangements. On Saturday his plane crashed, his parachute didn’t open and he died. After the funeral, my letter was returned unclaimed. He died without knowing.

And so, in a cool, dark bar in Upstate New York, John and I sang the Somebody Done Somebody Wrong Song. We knew all the words.

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To My Friend, a Physician

I don’t know how to approach you, what to say, what not to say. I want to be friendly, cheerful, optimistic. I want to be a valued asset in your life, even though I feel that I have absolutely nothing to offer. It was a beautiful and wonderful thing that you spent two hours sitting by my bed and visiting with me last weekend. A lovely and blessed gift from you to me, and I can’t imagine why. How am I worthy?

We talked of politics and whether Hillary would win, and basketball and when the coach would retire, and other such things. You said there was really no way to diagnose the recurrent pains in my left abdomen, and whether I was going to live or die. No one knows. And then you left. You paused before you went out the door and searched for words, for something to say. Finally, you settled on wishing me a safe journey. What else could you say?

I am terribly, terribly sick again. Nobody knows what myalgic encephalomyelitis is, or how to treat it. United States medicine is driven by Big Pharma but, in the case of myalgic encephalomyelitis, there is little or nothing that pharmaceuticals can do because the disease affects the nervous system and the immune system. The immune system pitches a fit whenever pharmaceuticals are introduced, so there’s nothing you can do to treat.

Medical schools only teach diseases where you can give medicine. Myalgic encephalomyelitis cannot be treated with medications, so physicians do not learn anything about how to treat these patients. There are alternatives but physicians won’t use them and insurance won’t pay for them. So here I lay, gently bleeding from several body orifices, and with nowhere to turn for help.

After three days and multiple phone calls from my physician, the director of the aide agency, and my Power of Attorney, the county nurse has increased my aide service from 12 hours per week to 20. Every time I get out of bed, I get worse. In England, there are people with myalgic encephalomyelitis who spend up to a year in hospital. I spent more than 104 days in hospital here but, since the staff knew nothing about the disease—and would not learn—it only made matters worse. Since the disease is in part neurological, I asked to see a neurologist. The hospitalist said, “You don’t have a brain tumor and you haven’t had a stroke, so you don’t need a neurologist.”

And so I am in despair. Where do I go now? What do I do? My glucose, which is supposed to be below 120 and has been averaging around 450, now is averaging around 525 and going over 600 every day. Additional blood work says I’m at extraordinarily high risk for a heart attack. I should pray God to be so kind.

I don’t know what is happening or will happen. I have no appetite but eat anyway; I lost eight pounds last month. I sleep or not; I never know which is going to happen.

I wake in the dark to go to the bathroom. Lurch unsteadily back to bed. Try to go back to sleep but am overwhelmed by the remembered horrors of 2013, when I spent eight months shuttling back and forth between the nursing home and the hospital. I press the button to raise the head of the bed, put on the LED lights, and try to write.

My aide will not be here for another two hours to bring me juice and coffee, then breakfast, then get me dressed to go to the doctor’s office, where he will do acupuncture and provide me a few hours of relief. I dread the trip. I cannot endure sitting up. Last time, I went by stretcher but that was awful, too. The Medicaid drivers placed the stretcher beside my bed and then just stood there and looked at me, waiting for me to move from bed to stretcher. I can’t. They wouldn’t help. They wheeled me down the hall, banging against the railing. They claimed they couldn’t get the stretcher into the elevators at either my apartment building or my doctor’s office building. They just stood there shrugging helplessly, making no attempt to find a solution to the problem.

Today I will try to travel by wheelchair, but it is torment. I am too tired to sit up. People with myalgic encephalomyelitis know this, but I have never met a fellow sufferer here, and no one in the medical profession knows anything about this. The acupuncture will provide sweet relief, but at what cost? Is it worth it?

The homeopaths will call this afternoon. They have, three times, prescribed too high a dose of the remedy, which has left me tormented by depression. They tell me I have to go through this, and they can give a follow-up remedy that will help me move through it. No, I don’t think so. To spend two or three days alone with acute depression? No. I won’t do it. Shit like that leads to suicide attempts and I won’t go there again. Committing suicide is not within my skill set, and attempting to do so only makes matters worse.

The flowers on my windowsill are dying. Lucky them. I used to go to the grocery store every Thursday and include flowers in my grocery purchases. I am now too sick to go shopping and there is no one to shop for me. I don’t know what is to become of me.

I will remain in my bed, be gently cared for by my kind aide, and then—hopefully—sleep a little. I will not go to the doctor’s. Yesterday I went to a different doctor and that is why I am in such despair today. I do so look forward to my morning juice and coffee but wonder what we will do when we run out.

Posted in chronic fatigue, Depression, disability, drugs, Government Services, homeopathic, Medicaid, Medical care, Pharmaceuticals, physician | Leave a comment

Arresting Annie?

So I went out my apartment door around 9:15 a.m. on Saturday morning and saw a medium-sized carton sitting in front of my neighbor’s door. My neighbor hasn’t been in residence for months so I went over to take a look at the carton. UPS had delivered it. The carton was marked, “Rush—refrigerate—rush” and marked for 24-hour delivery and had a red sticker that said “SATURDAY delivery.”

Well, huh. Maybe the neighbor was planning to return that day and had had something sent on ahead of her. I went about my business, but kept that carton in mind. Something was sitting in my hallway and degrading. A couple times later in the day I knocked on her door but there was no answer.

I was getting pretty fed up with this neighbor. The manager had told me—a long time ago—that the tenant had a son in New York City who she frequently visited. Multiple letters from management and attempted-delivery notices from UPS had gathered on her door. About a week ago, her smoke alarm rang off-and-on all night. When the police and firemen entered her apartment they found her bedroom window standing open during the coldest February on record.

Around 6:00 p.m. on Saturday evening, I brought the carton into my apartment, thinking that maybe it was from the Fruit-of-the-Month Club or something. I would have taken it to the management office but that was closed all weekend. When I opened the carton, I found that it contained $2000 worth of insulin.

Well, huh. The insulin packages were about the size of two half-gallons of ice cream (I am extremely conversant with ice cream containers and can measure small things in terms of them) and, although it wasn’t a comfortable fit, I could get them into my refrigerator. The insulin sat safely in my refrigerator for the rest of the weekend, and I knocked on the neighbor’s door a couple more times—no answer.

On Monday morning two things happened. First, my blood sugar was over 600, which puts it in the “Oh, Jesus” zone. Nobody can explain why it is so high, or figure out what to do about it. And insulin makes me sick. And with blood sugar that high, one gets irritable, can’t think straight and tends to fall over a lot. Also, at 600, you become at risk for a coma.

The other thing is that I called CVS Pharmacy in Pittsburgh, which is where the insulin was sent from. I thought maybe they would like to come get their $2000 product and take it back, since they had not yet been paid for it. And who was the payor? Medicare/Medicaid—i.e., you, the taxpayer? And who and when was this shipment ordered? And why didn’t they send it “signature required” to ensure that it wouldn’t sit out in the hallway for, like, forever?

CVS treated me to a computerized list of telephone choices, none of which fit the problem, and none of which included “other,” “customer service,” or “please hold for a live human being.” After about five minutes of fiddling with this, I chose “check on delivery” and was electronically told I’d have to wait in line for eight minutes. Actually, twice that long.

Then I got a nice young woman, we exchanged pleasantries, I told her what was going on, and she didn’t know what to do about it so she asked me to hold again. After ten minutes, I hung up. You just don’t expect a person who has no stake in the matter and only is trying to be a good neighbor to hold for more than half an hour.

Then I checked my blood sugar again and it was still over 600. It’s never been that high for that long during the morning.

In the paper work that accompanied the delivery of the insulin was the name and phone number of my neighbor so I called her up—apparently a cell phone—and told her what was going on. She replied, “First, how did you get my private number and, second, take the carton to [the apartment building manager].” And thank you very much, my dear; so glad you’re being helpful and catching my $2000 insulin delivery.

So my aide and I took the carton down to the office, where the administrative assistant repeatedly thanked me for my efforts. And that was the end of that.

Well, not exactly.

At 12:10 p.m. a Syracuse Police Officer showed up at my door. I did not want to let him in but I was too wobbly to remain standing, so I backed into my apartment and sat down. The police officer followed me in. He kept firing questions at me, demanding that I answer him. I was fully occupied in trying to figure out which buttons to push to save my television show and turn off the sound. With a brain full of simple syrup, that’s an overwhelming challenge. The cop is standing by my wheelchair, seeing me with an indwelling catheter, and not making any reasonable accommodation for my obviously disabled condition.

So I tell him the story, simply explaining what happened from when the carton was delivered to my neighbor’s door to when I delivered it to the management office. He tells me that I had no right, and I’m guilty of misdemeanor malicious mischief, and I’ve “contaminated” the product.

No, I didn’t, I say. It’s a bunch of insulin pens, sealed in boxes, sealed in plastic bags, and all I did was put them in my refrigerator to keep them fresh. The cop basically says, tell it to the judge, then says, “I’m going to get a warrant for your arrest then get another police officer and come back in twenty minutes to arrest you and take you to jail.”


The cop leaves me in a state of total terror. I’ve never in my life been arrested, and I don’t know what to do—not to mention that my brain, gorked out on high blood sugar—is not much use. I call my Power of Attorney, who doesn’t answer. I call Joe Lipari, administrator for the Citizen Review Board, and we discuss it. My homeopaths come to visit, offer Reiki, and leave. I take a nap. I don’t get arrested.

Now I’m going to file a complaint against that little bully-boy cop who abused his power and terrorized me. Put a uniform on a street thug and what do you get?

A Syracuse Police Officer.

Posted in disability, drugs, HUD-subsidized housing, Pharmaceuticals, Poverty, Power, Powerlessness | Tagged , , , , , , | 2 Comments

Dana, Bed Bugs and Related Management

    Dana Natale, manager, McCarthy Manor

Ms Natale was an exemplary manager. Her job put her in the middle between HUD, with its enormous load of regulations and ever-increasing number of forms to be filled out, and 176 tenants, almost all of whom are disabled, poor, old, emotionally unhealthy and not very bright. I think it’s an awful job but Dana handled it with grace and efficiency. She was kind and whenever there was wiggle room in any situation, she would decide in favor of the tenants.

Now, Dana is abrupt, secretive and withdrawn. Some tenants think it is because she has a mild case of multiple sclerosis but the MS is not new. I think that Dana’s extreme change in behavior is a result of the new owner, Related Management’s, corporate attitude.

In 2014, she shut down the Community Room. When I asked why, she snapped, “Because I said so.” The talk going around the building was that she’d shut it down because
(a) A tenant had died there; in fact, he’d died in his apartment.
(b) “One of the schizophrenics” was throwing feces.
(c) Homeless people were sleeping there at night.

In fact, the Community Room had been shut down so they could spray for bedbugs. Had I been told that, I would have shrugged and said, “Oh, okay,” knowing that Dana was on top of the situation and taking care of business.

McCarthy Manor’s Bedbugs

McCarthy Manor’s policy was that after you load all your belongings on a moving van and before you unload them at McCarthy Manor, the van has to be fumigated. It’s a good plan.

The bed bug problem at McCarthy Manor may have started with a tenant who had an adult tricycle with a big basket on the back. He rode the streets and picked up various articles from the curb where they’d been deposited for trash pick-up. He may have been bringing in the bedbugs and distributing them around the building.

Bed bugs have been with the human race forever but between 1930 and 1980 they largely had been wiped out by the use of DDT. In 1939 Paul Hermann Muller got the Nobel Prize for DDT; since its ban in 1972 there has been a comeback of the bald eagle, peregrine falcon and common bed bug. Between 2000 and 2005, the incidence of bed bugs increased 71%.

It became a national problem and a national television network did a story on it around 2010. A McCarthy Manor tenant saw the story, called the local station, and McCarthy Manor—which probably was no better and no worse than any other local property—found itself in the news.

Dana, the manager, knew she had a problem and was dealing with it as best she could. Among other things, she had a pesticide company on retainer. If you reported a bug problem to the management office, within about 48 hours your apartment would be visited by the pest patrol. The problem, as Dana explained it, was that tenants were not self-reporting.

The working theory is that tenants would not self-report because they were ashamed: they thought that some uncleanliness on their part had caused the bed bugs to infiltrate their apartments. In fact, bed bugs are not drawn to sugar, grease, or any kind of filth in your apartment or on your body. Bed bugs only want blood: the little bastards are coming after you. The reason they are called “bed” bugs is because every night they can count on finding you laying still in bed for eight hours, where they crawl all over you and suck your blood.

In warm weather it is really easy to tell who has bed bugs: you ride the elevator and notice who’s riding with you wearing short sleeves and has red spots on their arms. You’d be surprised at how many people get nasty when you—only meaning to commiserate—comment on their bed bug bites.

Anyway, the bed bug problem remained out of control until Dana announced that the pest control company would inspect every apartment every four months. There were no exceptions or exemptions. Management took over, started on the eighth floor and worked their way down. On the first inspection, about 75% of the apartments were found to have bugs of one sort or another. The pest control company was in here twice a week until they got the problems under control.

Periodically I would ask Dana how many apartments were infested and she would reply “five” or maybe “seven.” Seven out of 176 is excellent and as good as it’s ever going to get. For example, some 80-year-old has accumulated a lifetime of treasures and has them all jammed in a little two-room apartment. The pest control company cannot get into all the nooks and crannies to spray. You get a social worker involved, family if there is any, and work slowly and steadily to get the apartment clean. What else can you do? Throw the old man out on the street? Sure, Dana had the authority to evict any tenant who wouldn’t work with her, but she wasn’t that kind of woman. Eviction was way down at the end of a long road.

What happened most recently was that an old man got bed bugs and didn’t report them. Then he was hospitalized for some unrelated reason. Without him for their nighttime feeding, the bed bugs started moving to other apartments on his hallway. Other tenants, not knowing they were carrying bed bugs, would go sit in the Community Room and deposit the bed bugs there.

Dana moved aggressively to clean the bed bugs out of the sixth floor apartments and the Community Room. The Community Room was kept closed for several days in order to break the cycle of bed bugs being circulated. All of this was sensible and sufficient. What made no sense at all was Dana snapping at me that the Community Room was closed “Because I said so.” The treatment of bed bugs had ceased to be a reasonable scientific process and had become about one person’s rude use of power.

Except that later Dana told me that she had been told by Related Management that she was not to mention the bed bug problem. Instead, the tenants’ rumors about death, feces and homeless sleep-overs were to go unchecked. Related would not let the manager speak truth to the tenants.

Posted in disability, Government Services, Housing, HUD-subsidized housing, Poverty, Power, Powerlessness | Tagged , , , , , , , , | Leave a comment

Centro and the Smoke Alarm

This morning I learned that in November 2013 a palliative-care nurse practitioner testified at a hearing that with my glucose level as high as it was, I would be dead within six months.

Here I still am.

I’ve been counted dead so many times that a friend sent me a cartoon: cat standing at the heavenly gates, waiting while St. Peter punches another hole in the cat’s nine-lives card.

My glucose, which should be below 110, has been over 350 for four years, and over 500 for a couple of years. The medical expectation would be that my kidneys would be failing—they aren’t. In fact, without pharmaceuticals and with homeopathy they are getting better. My eyesight should be failing. In fact, since I got off the oxycodone it’s getting better. By now they should have started cutting off parts of me—toes, feet, legs. Nope, still got all my parts.

Every so often my friendly doctor asks, “Why aren’t they studying you? Why aren’t they trying to figure out why you are doing so well despite your high glucose?” I think that’s a good question. I think the medical profession only can see sickness, not health.

Anyway, did I tell you that the United States has again changed the name of my major malady? First, they called it chronic fatigue syndrome (CFS), which doesn’t begin to suggest how serious it is. Then they called it chronic fatigue immune dysfunction syndrome (CFIDS), which is my preference because it puts the immune thing right out there where people—even physician people—have to see it.

Then an international consortium of physicians said, “No, no, it’s myalgic encephalomyelitis.” It’s an autoimmune disease that affects the nervous system and the immune system, and is probably caused by a virus gravitating to the brain. Um, yeah, a strep infection when I was 14.

Last week NPR reported “a 15-member panel of the Institute of Medicine, an independent government advisory body with a lot of clout” has decided to call it “systemic exertion intolerance disease, or SEID for short.” The characteristics are:
• “Profound fatigue lasting at least six months;
• “Total exhaustion after even minor physical or mental exertion that patients sometimes describe as a “crash” and is known medically as post-exertional malaise;
• “Unrefreshing sleep;
• “Cognitive impairment (aka “brain fog”) or a worsening of symptoms upon standing.”

Yeah, I’ve got “profound fatigue” lasting, um, let’s see, 54 years. When I was in 12th grade I used to take a nap every day when I got home from school. For the last 11 years I’ve needed to use a power wheelchair—is that fatigue that is “profound” enough to qualify?

“Total exhaustion . . . patients describe as a ‘crash’ . . .” Well, let me tell you about it. Last week I went to a hearing at City Hall regarding Centro and Call-a-Bus. The bus couldn’t drop me at City Hall’s wheelchair accessible entrance because it was on the wrong side. The temperature was, as one news anchor put it, “a blistering 2 degrees.” The woman in the wheelchair parked in the aisle in front of me wouldn’t get out of the way so I could speak. Channel 9 News, the Post-Standard and NPR local news all recorded quotes from my testimony. I found myself accidentally sitting in front of Centro’s Executive Director Frank Kobliski.

I gotta tell you this one: Frank and I got to be friends—I thought—after I went to him and explained that Call-a-Bus was substandard. Frank and I exchanged emails and phone calls. We had meetings in his office and at my home. He wanted to get me in with his wife’s cardiologist. We worked together to upgrade Call-a-Bus. When he wouldn’t spend the money necessary to get the job done right, I filed a complaint with the FTA Office of Civil Rights and got Centro investigated.

Meanwhile, I had pressured Kobliski into recreating Centro’s accessibility board, which is mandatory under the Americans with Disabilities Act and which Centro had discontinued. I was the only one on the board who actually used Call-a-Bus as my primary mode of transportation. All the other “stakeholders” (as defined by Centro) on the board were talking about plans for 2018 and the design for a new grant application.

I was talking about the old man on the Southside who would leave his weekly meeting at 9:00 p.m. and then have to sit on an upturned bucket in a garage in below-freezing weather and wait an hour for Call-a-Bus because CAB wouldn’t play by the rules and pick him up after he got out of the meeting. I finally got mad, quit the board, and went to the newspaper.

Frank Kobliski never spoke to me again.

So there I was in the Common Council room at City Hall on Thursday night and I moved across the center aisle to get out of the way and found myself sitting in front of Frank. Well, I just grinned up at him. I mean, really—what’s he going to do about it? And he totally ignored me—looked over my head and refused to acknowledge that I existed. So I continued to sit there and grin at him.

After while I had to move to let someone else out and I ended up sitting next to Frank. And I kept on grinning. I hoped somebody, somewhere was taking a picture of us. The man is such a hypocrite. Among other things, he dyes his hair. I have this on good authority from his special assistant Betty Petrie. One day at Centro headquarters we were both in the restroom when she decided to go all girlish and confidential and tell that he dyes his hair.

I don’t know whether I was more shocked that he did it, or that she was so disloyal as to tell me.

Anyway, after I got home, to bed, and to sleep, my (absent) neighbor’s smoke alarm sounded for 90 minutes and I was awake half the night. Centro and the smoke alarm caused “total exhaustion . . . that patients sometimes describe as a ‘crash’ and is known medically as post-exertional malaise,” so I’ve been wrecked for nearly a week.

Posted in Call-a-Bus, Centro, chronic fatigue, disability, Transportation | Tagged , , , , , , , , , , | Leave a comment

$71? You’ve Got to be Kidding.

It is 7:25 a.m. and the sun is peering bleakly through a haze. The temperature is eight but feels like -12. It is predicted to go up to a blazing 11 degrees this afternoon. “Niagara Falls freezes over” is today’s headline. Beneath my window one of Syracuse University’s big CATs is plowing snow and using its loud backup horn. (The afore-mentioned “haze” was an oncoming snow storm, which is now falling hard.)

Last night the S.U. vs. Louisville basketball game tipped off at 7:00 p.m., which is also about the time that fat snowflakes started to fall. On my way to bed at 9:00 p.m., I noticed a car in the parking lot with its parking lights on. Oh dear. Somebody’s going to come out of the game and find a dead battery. Should I call S.U.’s Dept. of Public Safety? Ask them to check out the car with its lights on? Broadcast it in the Carrier Dome?

You see, an activist is not a hairy fellow carrying a protest sign with nasty words on it. Activism is a lifestyle that says “I’m mad as hell and I’m not going to take it anymore.” I’m going to do something about it. I am going to act. An activist is one who takes action, contrary to all the folks who sit on their butts, look at the world passing by, and do exactly nothing.

So while I’m debating making the phone call, I see another car with its lights on. And another. And lots of dark figures streaming down the hill, remotely activating their car lights. The game is over and the fans are coming into the parking lot, which has been snowed on for two hard hours. They open their car doors and trunks and wave their arms antically as they sweep off snow. Have you ever seen, from above, a parking lot full of people all simultaneously cleaning snow off their cars? It looks like a cover on The New Yorker.

At night, I turn the thermometer in my apartment down to 72 degrees; in the morning it registers 65 degrees. I had been asking tenants to bring their National Grid bills to the Tenants Action Council meeting last night.

The first problem with this is that all the notices about the meeting were taken down. Related Management’s state supervisor said she could stop that problem. She said she had directed our manager to write a letter that would go to all tenants today or tomorrow. Yesterday our manager said, “That’s news to me; I know nothing about it.”

So the turnout at the meeting was very low. I was the only one there who could read the National Grid bill and find “Account Activity: Current Charges” and “Summary of Current Charges: Total Current Charges,” the two being the same number. You have to understand, dear reader, that people in low-income housing are not smart. If they were smart then they’d have an earned-income high enough to keep them out of poverty.

Further, in low-income housing for people who are elderly, the tenant’s mental faculties have been dummied down either by various illnesses that reduce brain acuity or by the drugs used to treat those illnesses. In this building, there are 176 tenants, 91% of whom are disabled.

It is hard, if not impossible, to get an accurate reading of how many HUD-subsidized high-rises there are in the city. (The difficulty, in part, is that on the Internet “HUD homes” is a euphemism for houses, apartments not included.)

A rough estimate is that there are about a dozen of the buildings, with an average of about 200 tenants in each, so we may be talking about 2200 people living like this—although that is probably a conservative estimate. (Give me a couple hours to do the research and I could give you a more accurate number, but I don’t have a couple hours. My aide is in the kitchen and I have to go cook with her as she doesn’t know how to cook.)

The problem of interpreting the National Grid bill is further complicated by HEAP and the Budget Plan. The Budget Plan used to be an average that was figured once a year; it no longer is. My bill says that my budget plan amount is $94.00—and it “will change to $175.00 effective with your next bill.” That’s some average, isn’t it? I do pay my bill every month.

HEAP is the Home Energy Assistance Program for people below the poverty line. In November we are told that we will get $400 but we are never told when it will go to the electric company. One tenant says her HEAP payment does not appear on her February bill; mine is not on my January bill. Last year, later in the season, we got an additional $50. The year before, it was $100. On my bill, which is characteristic of the rest of the tenants, it says “Accumulated Budget Plan charges -594.00” and “Accumulated Actual Charges 731.81.” My $400 from HEAP will be completely wiped out the moment it reaches National Grid.

And what of Related Management’s state supervisor, when we tell her that leaking windows are taking all our money? Well, for starters, she doesn’t believe the tenants. She asks us to trust her but she doesn’t trust us. We are angry; very angry. When I ask her for specific names, dates and actions, she says, “I don’t know; I don’t know.” Then she gets defensive, then angry, then asks why I am so angry. “Because I live in your property” I am tempted to say, but hold my tongue.

She says that she has referred it to her Compliance Department, which ten months ago reviewed our heating bills and gave an allowance of $71/month.

Posted in activism, Government Services, Housing, HUD-subsidized housing, Poverty, Powerlessness | Tagged , , , , , , , , | Leave a comment

A Day in the Life of an Activist

It is 7:23 a.m. and the sun is rising over Syracuse; the temperature is zero. I always find zero a particularly dispiriting temperature, rather like a flat line on an EKG: everything has come to a halt; life is over. Underneath my window a front loader is shoveling snow into a dump truck for transport elsewhere. I live over the corner of a Syracuse University parking lot and they have been pushing the snow into the corner for weeks. Now they have to truck it out. But wait! S.U., if you want to save money, just let the snow sit there. The parking lot is rarely even half-full; there’s plenty of room for the snow so why waste the money and man-effort to truck it out?

With the thermometer in my apartment turned up full to 85 degrees, the temperature by my bed is 68. The temperature at the windowsill is too low to register. That hasn’t changed, nor will it in the foreseeable future. Yesterday, on the elevator, a tenant told me that he is heating his apartment by turning on his oven and this month’s bill from National Grid is $300. His apartment—all our apartments—are 540 square feet, about the size of a two-car garage. My heating bill this month is $179. Last night a man—a normal, healthy, working man who doesn’t live here—said that his apartment is 1200 square feet and his heating bill is only $119.

I told the man in the elevator to bring his National Grid bill and come to the Tenants Action Council meeting tonight. He has no way of knowing about the meeting because on Monday, per the manager, we posted notices on every floor about the meeting—and in less than 24 hours other tenants took down all the notices. We suspect that members of the Tenant Association are taking down the signs but we have no proof. It’s childish, and it’s the way things go here at McCarthy Manor.

At last week’s meeting with the state supervisor for Related Management, she said that was no problem, she could put a stop to the signs being removed, so yesterday I called her and told her the signs were down—what was she going to do about it? She said that she and the manager were creating a letter that would go to all tenants and tell them not to take down the signs. Really? A letter? I’m so not impressed.

The reason we can’t get another tenants group started in this building is because of Sharon Sherman, executive director and only employee of the Greater Syracuse Tenants Network. (See also She has a HUD grant, through the City of Syracuse, which used to be to work as an advisor to tenants in low-income housing. The grant was re-drawn to work with the homeless. Nevertheless, Sherman is coming into our home to the Tenant Association meetings, where she chooses the president, sets the agenda and runs the meeting.

I have called many people over the years to try to get Sherman out of our home, but have been unsuccessful. So, yesterday, after calling the Related Management supervisor, I called City Hall and talked to the guy who takes the HUD money and funnels it to Sherman. Four times, I asked him when Sherman’s grant comes up for renewal. After twenty minutes, he finally told me, but first he told me that if we wanted her out of our building then we should get the manager or the owner to ban her.

Fact: HUD’s rules are very clear and emphatic: Owners and Managers CANNOT in any way, shape or form do anything to constrain tenant organization or activity. Sherman presents as a tenant advocate and management won’t touch her. Sherman has fewer than two dozen supporters in this building and the Tenant Association president is an old, hard of hearing woman who is on oxygen and sits silently for forty minutes while Sherman runs the meeting. The president of the Tenant Association is also the treasurer on Sherman’s board.

So I move on to a phone call to the director of the HUD field office in Buffalo. I do not call the project manager because he is useless. If I file a complaint, all he does is forward it to their subcontractor CGI, which always decides in favor of management. If I request information, he says he will get it and call me back: he never does.

The director listens to me as I tell her that all our money is going to pay for heat that is going out the window. She asks some reasonable questions and then says she will get back to me later in the day. She doesn’t.

Then my aide and I get on Centro’s Call-a-Bus to go grocery shopping. The bus has four single seats on the right and four double seats on the left, which can be folded up to allow for wheelchair tie-downs. My aide sits on the right behind the only other passenger on board. The front two seats on the left are empty and I ask the driver to raise one of the seats so I can move forward and talk to my aide about the shopping trip. The driver refuses.

There are two reasons why some drivers do this: first, they want to flaunt their power and “put me in my place”; second, they are lazy and don’t want to have to bend over again. I have the right to sit in any vacant place on the bus. The last two drivers to pull this on me were both black men. I have said, “Don’t you remember Rosa Parks? She refused to sit in the back of the bus because she was black; I refuse to sit in the back because I’m in a wheelchair.”

It makes no difference; the driver ignores me. He is not a nice man and my aide and I have repeatedly had trouble with him. I pull out my cell phone, call Centro and file a complaint against the driver while he sits there and listens.

The state supervisor of Related Management, the City Hall commissioner, Sharon Sherman, the HUD director, and now this. Yet to come: a tenant who is mad at me, another go-round with the Related supervisor, and a third visit from the wheelchair repairmen because his company is demanding a serial number that doesn’t exist.

You tell me: where’s the joy? Where’s the happiness? Where’s the love? Where is there anything in all of this that makes life worth living?

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