Morning Most Difficult: Impressions of Loss. 3-3-13

Dry Tree Silhouette

I open my eyes. I am in a box without light. I hear a woman sobbing uncontrollably. She has forgotten I am here. Awareness scratches its filthy claws across my face. The day dawns once more, slashing hope. I exist in a world without tomorrow. Today is too much to bear. Yesterday is a recurring nightmare that will not fade. Mangled memories are soaked in sewage and tears. I follow walls, perimeters, around and around, looking for an exit that is not there.

I am a little girl sitting on the freezing cold curb in front of a forest-green house caressing a rotting teddy bear without eyes. I finger tiny, slivered fragments strewn across the pavement, that are mangled furniture, belongings, my past: bull-dozed into oblivion by the County. Crushed! My hands bleed into the mutilated soil: wasteland of my legal address. Splinters fester. Cars race past, without slowing, without seeing: having someplace to go, a destination. Their dust chokes my bloodshot eyes. I shiver with reality.

We stand long outside the entrance to our homes, afraid to turn the knob. We know! There is nothing inside: nothing we can touch! There is a terrifying landscape of obliteration, mixed with sweet memories. There is a wound in the floor that sucked the life from this place, and will not heal. It festers and grows with each passing day. Time is our enemy: mold flakes and floats from walls that will not dry, without money, There is a divide growing. Apathy brushes past invisible survivors: we become a class apart. It is so difficult to walk amongst the rubble, but impossible to turn away. Others judge us unkindly for seeking restoration.

The coastline is decimated: with cars hanging from telephone poles, and water gushing out of windows of houses. Beaches were sucked out to sea and flung into the streets: creating new channels, destroying transportation networks. Structures turned to tinder. Neighborhoods were devastated: homes burned down and floated away. Sewage washed through bedrooms. Babies were torn from mother’s arms. Young men were crushed. Life is lost! Communication was severed. Essential functions shut down. Food ran out and gas caused panic in the streets. I could not hold back the waters or keep the cyclone from its deadly path: it was too powerful. It was armageddon: apocalypse! Loss is stark reality!

Memory is chewing glass. Tomorrow is running across hot tar.

FEMA Shock! 2-25-13

Emergency Preparedness Checklist

A hotel room is traditionally a small space with cheesy furniture, stiff white towels, and multi-colored indoor-outdoor carpet that looks spotless but harbors microscopic critters. It is a facade, an appearance, a caricature of home. However, for a person who has lost everything, a hotel room is comfort, warmth, security, a link to independence, sanctuary. It is the only stability left. FEMA calculates hotel room space in time of disaster by price points and enforceable codes, and people as movable pieces on a game board that expires every two weeks.

It was almost four months to the day since I became a vagrant: roaming through the bowels of hell, searching through sewage for my treasures, a pawn in FEMA’s game of unrecoverable life. I was holding it together. But I was hardly all right. I entered the covered walkway to my hotel room, at the hour when waning winter sunshine brings a subtle chill to the day, returning from a day in the yard of my mold infested home. My clothes were shabby and stained, hair unruly, and my hands were vile. I was exhausted from crying. It was a typical post-Sandy day. I just wanted to go inside and scrub the day off.

A man in blue jeans approached me in the distance. I was unable to see his face, but he had grey hair and glasses. We met at the bottom of the black stone staircase, just outside my door. He had a tattered, desperate look. I immediately recognized him. He was one of us, the survivors – those who had lost everything in the SuperStorm of 2012, Hurricane Sandy.

He rounded the last post of the iron fence to the parking lot, looked me straight in the eye with compelling urgency, and said, “You’re FEMA aren’t you?”

I was startled by his recognition of me, and flattered. He had looked at me, not through me. I responded quietly, “Yes.”

We, each of us, understood the bond.

He was was obviously frightened. “FEMA’s paying for your room?” he said without introduction.

I understood his urgency immediately. I said, “Yes.”

“I have to leave. I got a call from FEMA.”

Everything that he was feeling, I had felt: the desperation, the fear, the vulnerability, the sheer terror of being told that you don’t belong, that you can’t stay, but you have nothing to go back to and no place to go forward; that empty, gut-wrenching reality that you did everything right, and now everything is so wrong. His fear triggered the advocate in me. It was 1970, when I saw a man in a wheelchair locked out of the public library on a cold rainy day.

“Was your house damaged?” I said.

“I lost everything.”

“I am so sorry,” I said. “Well, you are covered. They will pay for your hotel room.”

He repeated that FEMA had called to tell him he had to leave the hotel. “I have no place to go.”

“On Friday they extended the Transitional Sheltering Assistance (TSA) Program, the
Hotel Assistance Program, until March 10.” I said. “It is o.k. You lost your house. You can’t go home. You are covered.” I was so sure. It was the right thing.

His face was blank, unbelieving. Insecurity was so much a part of our lives now.
“Where did you live?” I inquired.

” Lindenhurst. Cuomo was standing right in front of my house.” he replied.

“I’m sorry.” I said sadly. I knew Lindnhurst was really bad. But we all had really bad stories and really sad hearts. Oddly, none of us felt sorry for ourselves, just sorry.

“Listen to me,” I said, being pushy, “You don’t have to leave!” I was now an authority, giving out permissions.

He moved nervously about, looking for something solid to hold onto. “An insurance inspector who used to be a FEMA inspector told me early on, FEMA is going to deny you and deny you, and you have to keep appealing. Just keep appealing. And you will eventually get what you should.”. I told him. I had learned by dealing with FEMA that this was the truest advice anyone gave me.

But, he wasn’t convinced. He wasn’t ready. He was too much in the moment. We stood there together, him and I, trying to find some measure of security in fragments of information, success and failure, each of us had.

I told him to call FEMA, go to the FEMA website.

“Go to the American Red Cross.” I was running out of viable suggestions. They were sparse.

“The Red Cross told me they would help me, except, I am not working. If I was working, they would help me,” he explained. He told me he was a utility worker who did not work for two months each winter because of the weather. He said he was going back to work on March 11. He only needed the hotel room until March first.

“I don’t work,.” I insisted, like it would help. “I am disabled.”

“That’s different,” he explained.

I asked him what the FEMA caller said, because I knew they are all over the place, in professionalism, accuracy, and purpose. I knew that their communications were haphazard, confusing: lacking transparency and clarity.

He said he wasn’t sure. She wasn’t clear. He couldn’t understand her. That sounded right! Even the messages FEMA left were difficult to decipher. The letters were ludicrously unclear. They were an unfocused, transient bunch of people from all over: jabbing facts at you, impossible to locate afterward, moving on to another location before clarity or resolution, never following through. FEMA was an odd collage of documents and disorder: frustrating, accomplishing little. I suspected that he was a victim of FEMA shock, the trauma caused by the actions FEMA takes against the Hurricane Sandy victims, and its inaction.

I told him that it was announced on television on Friday that the Transitional Sheltering Assistance (TSA) program, the Hotel Assistance Program, was extended. That was the way it had worked. Every two weeks everybody covered by the Hotel Program was under threat of being thrown out into the street with no place to go. So far, at each two-week deadline it was announced that the Program was extended. Rumor is that this will continue until it is warm enough for people to live in their yards. Hearsay is that people in Breezy Point are living outside in tents in the winter cold. We each know people who were forced to go back into their homes without walls, without floors,without heat or kitchens. We each lost confidence in the system because of the way it treated us and those around us. We have watched FEMA consistently ignore, abandon, and devalue the survivors of Hurricane Sandy, and convert Recovery into a National Tragedy and the survivors into disbelieving, wandering refugees.

I told him the television said they were supposed to call each person to notify him that he was extended. I said maybe that was the call he received that was unclear. I never got a call.

I suggested that he call FEMA to clarify what it was about. He said he would go into the FEMA Headquarters in Lindenhurst tomorrow to get an answer.. That seemed like a good plan. I suspected that the call he got was really to inform him he was covered for another two weeks.

Sadly, I heard little that FEMA did that was positive, helpful or kind. I heard only terrible experiences of people being rejected, denied, devalued, depersonalized, threatened, dismissed, and thrown out. There was a current of frustration and hostility toward FEMA circulating among survivors. And there was misunderstanding by the public of the reality of the Recovery process. There was a strong bond among survivors for each other: for we were a new class of people, middle-class homeless people by natural event, looking for a way back, for stability, security, help, support, equity, justice; receiving nothing but indifference and callousness; supporting, maintaining and helping each other.

“Nobody is helping us.” he said. “Nobody cares!”

“I know,” I said.

Because that is the way it feels: everywhere you turn, a door slams in your face. You are told the money is gone, you can’t stay, you don’t belong. That is the experience of the survivors I meet! It doesn’t matter if they have no place to go, or small children, are sick, cold, or broke. I know that there are caring people out there. I just can’t see them..

There is little help, aid or support within the Recovery System: the systems are disorganized, unfocused, illogical, and uncaring. The media reports that each Sandy homeowner victim is receiving $30,900 in aid. I have met not one person who received such a grant. And, if you had Flood Insurance and paid premiums for that insurance, FEMA deducts that amount from any repair grant they allow to fix your home. People who had no Flood Insurance, received immediate pay-outs that far exceed those of insured survivors. So, instead of benefitting from being responsible, homeowners wait months longer than the uninsured, and receive a laughable pay-out.

But the most disheartening, is the public’s indifference to the plight of Hurricane Sandy survivors. This was a “massive event.” And, agencies and ordinary people are hiding behind that catch-phrase to go on with their lives and not be inconvenienced by those who are hurting and abandoned. There is so much gut-wrenching suffering among survivors, so much sadness, loss, and longing. And, the world went on without us. Nobody cares!

Locally, I see a divide at Merrick Road. The people below Merrick Road on the south shore of Long Island sustained loss and devastation in varying degrees, depending on how high their house sat on land. Some, lost basements and furnaces; some lost playrooms and garages; first floors; living rooms, kitchens and bathrooms. People who lived directly on the water, some of their houses were totally spared and some actually floated away. Many people, either because they lived on the water, or, like me, lived nowhere near the water but lived by a Sewage Treatment Plant and had a massive sewage surge throughout the house, lost everything. The survivors have an unspoken bond, and watch out for each other.

But sadly, the people north of Merrick Road never looked back. They prepared for the storm like the rest of us, but when their homes were spared, they watched the news, and then went on with their lives. A few took in friends or family who lost their homes, and they are heroes. But most went on, preparing for Thanksgiving and Christmas, and left the churches to feed and house the refugees, with no thought of what the holidays must be like for us. Christmas was the same as it always was for them, because a geographic quirk spared their homes from the “post-hurricane cyclone” that gobbled up our lives. I can only observe what I see.

So here we sit: the utility worker from Lindenhurst: the couple next door from Point Lookout with three screaming children; the 30-something couple on the other side of me, hiding their Yorkie under the covers when there is a knock on the door; the woman upstairs from Long Beach who fell in the shower and broke her wrist and ribs; the elderly church worker from Nassau Shores with an old car filled with carefully-wrapped antiques; and me from a Seaford sewer surge, who listens to their stories. We are each here, living in a hotel room begrudged to us, clutching a bag of our tiny treasures, in FEMA shock.

The utility worker walked past my room this afternoon and told me that FEMA did indeed throw him out: unemployed, with no place to go, refusing to give him any explanation. Everyone who leaves like this, takes a little piece of my heart with them. And I know that there, but for spinal cord injury, goes me. And I wonder if I am next!

Empty Eyes. 11-8-12

Lonely tree and bench

I was alone, living in my car, not eating, not sleeping, not wanting to go on. I was walking around day by day in a fog, isolated, numb, consumed by reality: looking into the eyes of the world, seeing nothing, feeling nothing but grief. Not realizing I was one among thousands, I validated my loss. For during Hurricane Sandy I was cut off, we were all cut off, by massive power outages: from the visuals, from the overwhelming truth, the destruction, the drowning, from the suffering of thousands. So, in those first days before I met the others, the ghosts of the lives of other survivors, I was wandering around searching.

I instinctively knew the survivors as well as I knew my own features. and I needed to touch their flesh. I was searching the faces of men, looking for bleeding, for empty eyes, like mine. I recognized those like me, who lost everything, disbelieving, bewildered people, wandering, with no place left to go: belonging no where, owning nothing. I relived over and over the terrifying moments, as I followed slime and grit, into the devastation of my home, my life. The smell of my home, that rancid, acrid stench of extinction, burned my nasal passages daily, and I wanted to embrace someone who couldn’t get that stench out of his nostrils either. I needed to cradle broken hearts.

Within the context of having lost everything to a natural event that was no fault of my own, of having nothing left, of feeling very sad and panicked, I wandered without purpose, occasionally accomplishing necessary tasks. I entered CVS, looking for antibiotic and bandages for my fingernails, severely infected by contact with the sewage water entombing my treasures. I was neither responding to nor interacting with my environment: I was hardly a part of the world. There was no reason for me to be there.

I navigated my wheelchair up and down aisles overcrowded and blocked by carts of boxes and merchandise being loaded onto shelves stripped by frantic Hurricane Sandy shoppers. I was confused by the disorder, and frustrated, as displays of toilet paper and shampoo came cascading down on me. There was no place for me here, and my equipment. I was in the way, at time of crisis. Store clerks scowled, as I bumped into displays and rolling carts, taking out end caps of water bottles and stacks of baby wipes. Standing, also in the way, at every turn, was a woman with a shock of grey curls, a red wool coat, and gold-trimmed glasses. She moved quietly, without purpose. She never looked at me, but clung to me. I recognized her immediately. She had empty eyes.

Neither one of us spoke to the other: we knew. We went through the store like that, silently meeting: passing. I needed to listen: she had something to say. But we were hurting too much to reach out. I took care of business and exited sliding glass doors that snapped closed behind me. The air outside was crisp and damp. The sidewalk was narrow and hazardous. As I navigated toward my car, there, coming toward me, were empty eyes. It was the woman in the red coat. I looked directly at her and said quietly, “Did you lose your house too?”

Words spilled from her like water from a broken dam. “I live in south Seaford. But, I only sustained minor damage.”

I swallowed deep and choked up a large glob of self pity. “I lost everything: my house, my furniture, belongings, $50,000 in medical equipment.” Every time I said it, it seemed less real. I had expressed my pain.

“I lost my son-in-law,” she said out loud, seemingly matching my pain.

I stopped breathing and tried to process words I did not anticipate. Surely I had heard incorrectly. “What do you mean?” I said with puzzled stupidity.

She seemed anxious to explain. “My son-in-law was crushed by a tree.”

Time stopped. I grabbed the words and rolled them around in my mind. I believed her. “I didn’t know anyone died in the flood.” I responded sincerely.

“Oh yes. Twenty-six people,” she said. “Two children were torn from their mother’s arms by the winds on Staten Island.”

“Oh my goodness! I didn’t know. I am so so sorry.” There were no words . . . She understood. She wasn’t looking for comfort. She was trying to hold on to her son-in-law.

“He was a good man, a good husband and dad: he was a good person.”

Her statement was written in stone: untouchable, unchangeable. I responded with a serene smile of understanding.

I was incredulous. The storm seemed so benign where I was sleeping that night. I felt cheated and stupid, that I didn’t’ know. This monster had destroyed my life and hers, and I had no visuals to process. “I didn’t know,” I said.

“Was the accident in Seaford?” I asked. What did that matter?

“No, they live in Lloyd Harbor. It happened in Lloyd Harbor.” She was in so much pain. She wanted to talk about the man. I wanted to remember him.

“What happened?” I said, almost whispering.

She was not crying. She was remembering what they had told her happened. It was like, if she told the story enough times, she would finally believe it. She needed to remember every detail. She needed to pass them on to someone. I needed to listen.

“They were evacuating. My son-in-law had put their two little girls in the car.” I pictured two little girls safely secured in the dry car by a father taking care of his family: two tiny faces in rain gear, droplets splattered across their foreheads, watching daddy running through the storm with salvaged armloads of clothes and necessities. I was once that tiny child being shuttled safely away from our flooded house by responsible adults. I felt their excitement, their fear and anticipation.

“A tree fell on him!”

“Oh my gosh!” I exclaimed. It was horrifying! It was real. It was what his sweet babies saw! There were no words! There was no comfort! There was only listening. There was a maimed and broken family, compelled to accept reality. My house, my precious lost house and all my belongings, seemed so inconsequential now. People died! A daddy died in front of his two little girls. I was ashamed of grieving for a house!

“He put his daughters in the car. He was helping his wife. The tree fell onto the driveway. It crushed my son-in-law. It killed him! It struck my daughter.”

“Is she all right?” I gasped.

“No.” she said. “One whole side of her body is all black, where the tree hit her. She has broken bones. She is in terrible pain.” I pictured the mayhem: the mortal injuries in the deluge, screaming for help, babies crying, hysteria, flashing lights blasting silence. It was awful! It was too much to bear. A daddy was broken and gone on that monstrous stormy night.

“Is she going to be all right?” I insisted. How could she ever be all right?

“Yes,” was the quiet response.

“Did the little girls see what happened?” I asked, fearing her response.

“They saw everything!” she said solemnly. We were silent together.

I looked into her tortured face, and felt the inconsolable pain of a wife and children. I was overwhelmed: impacted by the loss of one unique person, the agony of a family broken and changed, forever. I was humbled.

I understood that I had lost very little in the scheme of things. My house was not a person. My former life could be reinvented. None of this was what I wanted to accept right now, but it was true. It would be truer tomorrow.

Letter to the Editor (East Hampton Press, The Independent, www.indyeastend.com)

Letter to the Editor:

In 1962 I graduated from Massapequa High School with Wendy McVicker. She was very shy. In October I attended my 50th high school reunion. On the Roster, Wendy McVicker Wagner’s email address was listed as, iwillnotwhisper@hotmail.com. I smiled and thought, “Wendy found her voice.”

Actually, Wendy found her voice 35 years ago after she sustained serious spinal cord injuries that left her permanently totally disabled. Fighting for her own medical care in the Workers Comp System, she began fighting for others, first for medical, then promoting awareness, changing perception, facilitating barrier-free compliance and spreading accessible facilities throughout Long Island and other areas. She worked with malls, universities, libraries, municipalities, hospitals, retail and fast food chains, schools, small business, medical offices, corporate executives and legislators. She had a Variety Show for access, attended by 800 people.

In 1996 she chose to help the Village of Southampton. She wanted disabled individuals in Southampton to enjoy some of the same independence she had given others. For the next 15 years Wendy worked side by side with Douglas Murtha. She designed and implemented the Village of Southampton Access for the Disabled Program and led the Village of Southampton Committee on Access and Disability. She made the Village of Southampton the first accessible Village on the East End. She worked on Village Hall, the Police Department, Rogers Memorial Library, the Veterans Hall, the Cultural Center, Southampton Hospital, Agawam Park, handicapped parking, curb cuts, walkways, traffic lights, ramps, beaches, telephones, and rest rooms.

During Hurricane Sandy, Wendy’s house in Seaford was severely damaged by a sewage surge that destroyed her furniture, belongings and medical equipment. Her Flood coverage was only $14,000. FEMA has only given her $5,494.35 for home repairs that are estimated at $100,000.

Wendy has over the years, unnoticed, made amazing changes that have impacted the lives of thousands of disabled people every year, with no thought of personal gain. As a matter of fact, throughout her advocacy, she has paid for all office and printing supplies, postage, gas, and repairs to her car and wheelchairs, herself. Some people say she is the most selfless person they know, others say she must be crazy. But everyone agrees, she has left a wake of change and good deeds unchallenged.

Please find a way to help Wendy, who has never hesitated for a second to help another, to restore her house and go home! Please contact her at iwillnotwhisper@hotmail.com or 2401 S. Cedar Street, Seaford, NY 11783.

Sincerely,
Robert E. White
East Hampton

Hotel Room Appeal submitted to FEMA. 12-29-12

FEMA
1-800-621-3362. FAX. 1-800-827-8112
DisasterAssistance.gov

Fema I.D. No. 41-1371304
Subject: URGENT. Long-term Housing
Medical Condition: Spinal Cord Injury with Severe Autonomic Dysfunction, Cervical Myelopathy, Costochondritis, Intercostal Neuritis, Occipital Neuralgia, L-S Radiculopathy, Multiple Disc Lesions, Post Traumatic Neuropathy. Pulmonary Fibrosis.

To Whom it may Concern:

On October 29, 2012, i was a permanently disabled individual, severely limited by symptoms of a spinal cord injury sustained 35 years ago, fully functioning within the closed environment of my home, set up to accommodate my specific physical needs. I was in intractable pain. I used an electric wheelchair, oxygen, a service dog, and was in a hospital bed 80-90 % of the day. I was an ADA/Disability Advocate of 35 years, who has facilitated amazing changes for disabled individuals.

As you can imagine, the sequence of events since the sewage surge hit my home have caused me great physical pain and functional disruption. I slept in my car for 10 days. Then I was able to get into the Best Western at Bar Harbor on Sunrise Highway in Massapequa Park, NY. I have a room with a bathroom and parking outside the door. My oxygen is set up here and my physical therapist visits twice a week for 2 hours each session. I am warm and comfortable. My home was set up like this. I cannot function in an apartment.

I have been told by numerous persons within the system that Fema has the capability to allow me to stay here at their expense, because of my special needs. I provided two medical reports to the Fema Inspector. If these are not in my file I will fax them to you.

I am asking Fema to allow me to stay at this hotel, where I am comfortable and my needs are being met, until my severely damaged home is restored and livable. Please take this request seriously, because there is no way I can fit into the housing standards set up for able-bodied individuals pertinent to Disaster and Recovery. Be assured that I am highly motivated to recover the level of comfort, functioning and productivity I enjoyed prior to October 29, 2012. With your validation of and cooperation with my special needs, I feel that will happen.

Thank you sincerely for your consideration and anticipated help.
Sincerely,
Wendy Wagner

********FEMA consistently refused to answer this Appeal, although I was told repeatedly that it was being considered.

Letter to President Obama. 12-18-12

Dear President Obama,

I sincerely hope that you will read this letter personally and realize there are faces on the victims of the flood surge of Hurricane Sandy and that our needs are not being met.

On October 28, 2012, I was a profoundly disabled woman living alone with my service dog, in a neighborhood in Seaford, Long Island, not on the water or even close by. I have Spinal Cord Injury with Severe Autonomic Dysfunction (which means it affects all involuntary functions, such as heartbeat, breathing, swallowing, temperature control, etc.), Cervical Myelopathy, Occipital Neuralgia, Costochondritis, etc. etc. 3 lobes of my lungs are partially collapsed. I am in a hospital bed 80 percent of the day because I can only sit up for 2 hours and can never lie down. I use an electric wheelchair and oxygen concentrator. I am in intractable pain 24/7. I have had 27 malignant melanoma.

Despite all this, I have built a life of incredible advocacy and consultancy for disabled people that has spanned 35 years and allowed many many thousands of people to live more accessible and equitable lives. All of my files were destroyed by the sewage surge that tore all of my furniture, belongings and $50,000 in medical equipment from my home on October 29, and made it unlivable and hazardous to enter. I lost everything. But what I lost most was a comfortable nest in which I could function. I lost control of my own life.

I stand before you destitute, with nothing but my good works in my arms, stumbling about in a Disaster Recovery Program that has no place or compassion for Disabled Individuals, and I beg you to see me and to listen to us. We are being dismissed!

WHAT I NEED IS INTERVENTION. For 10 days after the flood I, with SCI, slept on the floor or in my car. I lived on a half a roll a day and a half bottle of water. Food, gas, and housing were non-existent.
After 10 days I found a hotel in my area, Best Western at Bar Harbor in Massapequa, NY. They have agree to let me stay until December 9, 2012, after which I have no place to go. The problem is, that while I am Approved for Hotel Assistance, Fema said this hotel is not on their List. The list they are using seemed to be from a former hurricane, and the woman was trying to send me to locations 2 hours away. She finally settled on two, Farmingdale, 45 minutes away and Freeport Motor Lodge, on the water in the devastated Flood Zone. I can only sit up for 2 hours and need a hotel close by.

I am located presently, after some effort. Housing and hotels are extremely scarce. I cannot go to a shelter and I can provide medical documentation for this. My needs are being met here. I am near people and medical personnel who know my rare medical condition. And I am close to the home where I need to take care of insurance and other business. No insurance has visited my home yet.

Fema has not said they will pay for this facility. My out-of-state son has it on his credit card but cannot much longer. The daily cost that Fema is allowing for hotel assistance is $143 with taxes, This hotel is only $112. I AM ASKING YOU, President Obama, TO PLEASE HELP ME TO GET FEMA TO APPROVE PAYMENT FOR THIS PARTICULAR HOTEL. PLease help!

It looks like although I had $400,000 in insurance coverage on my home, because it was a flood I am going to get only $14,000 for my home, furniture and all its contents. Devastating. I find myself wishing I had died in the hospital bed that burned up in the storm surge. I am in such physical pain. Land rapers are already trying to buy up our devastated homes for the land. I find myself wondering how in my wonderful America, insurance companies could be so overindulged and homeowners could be so victimized, first by the storm and then by the system. I have been living below the poverty level on $10,000 from workers compensation for 35 years, and there is no way i can rebuild my home without help.

I sincerely appreciate your anticipated help. I have experienced no help or compassion in the systems. God bless you. wendy wagner, 2401 South Cedar Street, Seaford, NY 11783

***THIS LETTER NEVER RECEIVED ANY RESPONSE.

The Pain of Being Different. 1-26-13

Happy Smile

On October 29, 2012, I was at peace with the world. True, I had a hard life, a very painful life, a life filled with medical, legal and structural challenges. But, I had created outcomes unimagined by most, quietly, over years, believing that I could, accepting no failure. I had accomplished progress for disabled people unattempted, because we were a beaten-down class of people. I loved my chosen work, advocacy. I was very good at what I did. I had a strong sense of support, security, and serenity.

That night the earth ruptured, spilling sewage, slime and scum across my safe haven. Indeed, thousands of lives along the East Coast of the United States, and Long Island were torn apart by SuperStorm Sandy, later to be spit out by FEMA. That was the night sincerity and belief ended for all of us and we learned about inept, unprepared government agencies, and what it feels like to be the underdog in a world that goes on without you. We learned that we did not belong. Overnight, for many thousands of survivors, the world became a horrible, unstable, outrageous landscape of bureaucratic crap, rancid officials, muck, outlandish decisions, poverty, rejection, half-hearted gestures, indifference, and callousness. A searing longing tore inside each of us, to go home. But there was no place left to go, except the slimy crypt of our lost lives.

And in this atmosphere of rejection and loss, I represented yet another layer: disabled during disaster. I was to learn the lesson of a lifetime, because I was disabled.

It had been a difficult road since the sewage surge for me, obviously physically, consumed in pain, absent my equipment, barriers everywhere. But the most insurmountable barriers had been in the minds of bureaucrats, governmental agency’s complete stupidity, inability and unwillingness to deal with anything related to disability or special needs. This created delays, denials, problems with paperwork, funding, living accommodations and communication. FEMA officers were perennially deaf, or just plain dumb.

Within this mindset, for three months I had been trying to make FEMA and all of its tentacles aware that I was not moving from the hotel to an apartment, because I could not physically function in an apartment, and I could function here in the hotel. I said it over and over — to every official, agency, badge-holder, phone caller, computer screen, piece of paper, finger tapping on keys. Still, FEMA never checked the box for disabled on my application, and agents threatened me on the phone and came to my hotel door to convince me to get out. It seemed that I was a cog in their carefully-coded, legally-allowable wheel.

After FEMA Agents came to my hotel room after dark on January 11, we seemed to reach a consensus that I was disabled and I would not be forced into an apartment. It seemed like the powers that be would finally stop hassling me. How easily we accept the apparent. The final drama in this sorry tale culminated within days.

On January 14 flyers were handed to each FEMA resident of the hotel, by a hotel employee. The paper said there would be a meeting on Wednesday, January 16 in the hotel lobby between 12:30 and 8 p.m. with FEMA and Nassau County Housing, to inform FEMA residents of their option to move on from the hotel into apartments and other temporary housing. The paper said we were expected to attend. On January 16 I had the flu. And, I had no thought of attending the meeting because I had just been assured by FEMA that I could stay at the hotel. I spent an uncomfortable day in bed, as I heard young FEMA agents scurrying past my room to the meeting, in conversation.

About 11 p.m. I noticed the red light on the house phone blinking. I dialed the operator. She said I had a “package” from Nassau County. Odd. The next morning I asked someone to go to the front desk and pick it up. It was a letter. Inside were three typewritten pages with 81 apartments listed. The envelope had the name of the Director of Housing and a phone number. I was shaking, because I realized the housing issue was not resolved. I called the number and left a message that I would not need their services because I was not going into an apartment.

The next day I went to my house to pick up my mail. When I returned, the house phone was blinking. I called the front desk and a woman said my “caseworker” had come to see me. I said I did not have a caseworker. She said, “Well they assigned you one.”

I wondered how this young lady, who brought two FEMA agents to my door after dark, knew that “they” assigned me a caseworker. “Do you want the card or not,” she said. A few minutes later she handed me the card and left quickly.

I looked down at the white business card. The words Adult Protective Services smacked me in the face like a sledgehammer. I stared, sure I had read it wrong. But there it was in bold black letters, Adult Protective Services.

I was scared, confused, sick to my stomach and angry all at once. I was shaking all over. What the hell were they going to do to me next? Had I fallen off the edge of the earth into Hell, or was Hell a four letter word called FEMA. I didn’t know what they wanted, or who did this, or if they did anything. I only knew I didn’t like that card. I wanted to go home, where young hotel clerks with attitude could not unlock my bedroom door on the whim of a county card.

I called the phone number, my voice trembling, and left a shaky message, “I don’t know what this is about, but I do not have a caseworker and I do not need help.” I hung up, feeling really stupid. I called back and went to the phone number the caseworker referenced if she was unavailable. I stopped following the County chain of uselessness after five consecutive answer machines. Diffused by the inefficiency of their system, I fell asleep more annoyed than worried. It was a nuisance, not real: so I thought.

The next morning I arose with a list of phone calls and tasks to accomplish. We, the survivors, were so engulfed with paperwork, documents, appointments, meetings, and phone calls since the flood, that it was like we had a full time job. I had no time for nonsense today. But nonsense has a life of its own, and the County of Nassau was triggered to wreck havoc on my life.

At 9:30 a.m., the phone rang and this pleasant-enough voice announced her name and title. I felt faint for a moment and then thought, I have nothing to worry about. Wrong! She said she had to meet with me. I asked what this was about, wondering if this was a bureaucratic maneuver or something else. I was in unfamiliar territory. She gave me a non-answer. I persisted, “Did you get a complaint?” She said she had, that I was in danger, that I was not entitled to know who reported, and that she had to “investigate,” so when could we meet.

I was shaking all over. I went into panic mode. I started defending myself, against what I didn’t know. I told her all the good things I had done, how strong I was, how invincible and competent. I wouldn’t let her hear me cry. All of a sudden, I was a severely disabled lady in a wheelchair, scared the system was going to lock me up for being different. How did I get here? I was so alone, in a world full of people who didn’t wear their difference on the outside. They were safe.

We spoke for 45 minutes and I assured her I needed no help and would not meet with her. She said she did not think her boss would accept that. We ended amiably. I heard no more.

It had been bitterly cold for days. The pain in my spine, chest, head, legs, demanded more of my attention the colder it got, the longer I was without my equipment. It was a constant reminder of how different my medical condition made me from everybody else: a fact I had been denying on as many levels as I could for all of my disabled life. This whole flood thing made me feel like such a cripple, and put the heavy burden on me to carefully hide my limitations and look like everybody else. It took all of my energy. But I could handle anything. For 35 years my life had been one enormous challenge after another, medical, legal, structural, attitudinal, discrimination. I was surrounded by barriers I must climb over. Doors were closed and locked against me and I learned to make a key. Every challenge made me more creative, stronger. I was afraid of nothing.

I heard no more from Adult Protective Services for a week. It was 9:30 on Thursday, January 24. The caseworker with the card called my cell phone. She said that I must meet with her. I told her no. She told me that she would bring the police to my hotel room and I would meet with her. I felt weak, nauseous, trapped. This was not happening!

I said, “You are threatening me with the police! You are threatening me with the police?” I was incredulous!

She said. “Let’s make this easy. I just need to see you for five minutes, to talk to you, to make sure you are all right.” That didn’t make sense to me.

“I was fine until you stuck your official fist in my face,” I thought.

I spoke no more to this woman. She was obviously deranged. “May I please speak to your supervisor,”

I was connected to a pleasant woman who, when she heard my name said, “How can I help you,” like she didn’t know what it was about. She thought I was stupid.

I explained that this caseworker had threatened that if I didn’t meet with her she would bring the police. The supervisor said, “She didn’t threaten you. She told you. We will bring the police if you don’t meet with us.” She was crazy too.

I said she had no right to threaten me with police. I did nothing wrong. She just kept prattling on. I had fallen into Social Services hell. I asked to speak to her supervisor.

The second supervisor was an inflexible woman who said if I did not comply with their demands they would bring the police to my hotel room and force me. Her words came from a book and her mind was fossilized. I turned my face away from her cold heart.

I did what I had to do to keep them from coming today. I scheduled an appointment for Monday at 1 p.m. She changed it to eleven. I told her I would not meet with them without a lawyer and a video camera. She mocked me.

But it was the weekend and all free lawyers, legal hotlines, the Attorney General, the Justice Department, all legal services were closed for the weekend. I wondered what the criminals did for weekend legal services. I called my Congressman. They would not “get involved with an APS issue.” I was starting to feel guilty. I didn’t know what I was guilty of.

I had been fighting for the rights of disabled people for over 35 years, accomplishing unbelievable change; and now I was being discriminated against and harassed, simply because I was disabled. It was disheartening. It was disgusting. It was incredible that this antiquated action was being foisted upon me, the master advocate, accomplished barrier buster, nimble scaler of great stone walls. I didn’t tell my children. I was ashamed.

On Friday evening my son called and asked me what was wrong. I reluctantly told him what was happening. It was humiliating. I cried.

My son spent the rest of the weekend calling and emailing everyone he could think of, at Fema, Nassau County Housing, Social Services, Adult Protective Services. There were responses saying it was outrageous: some offered help on Monday. But, despite his exhaustive efforts, Monday morning would come with no assurance that I was not going to be hauled away by power-crazed county workers and gun-toting policemen.

I had been unable to find anyone who was willing to meet with these people and prevent them from laying their hands on me. I was terrified, for no matter what I did, one could look at me and see that I was disabled. I was disabled! These people seemed to equate disability with inability. I was terrified.

The advocate in me, the disabled person, had done much soul searching over this long and tortuous weekend. And I cried a lot. I didn’t know what was going on, because APS offered no explanation, except that I had to meet with this strange agency that was acting like the Gestapo. I only knew that I was being singled out, compelled, specifically because I was disabled. The more I thought about what was happening, the surer I was that I could not comply. It was against everything that I had modeled over the years: about being an independent, barrier busting, self-sufficient, strong, disabled person: despite your disability, despite your pain, despite the challenges.

It was more than I could bear! It was against everything I fight for: against who I am. There was no choice. I would not let the system compel me to be discriminated against. I would not let the system make me a cripple. I decided, since I had accumulated no tools over the weekend to fight with, I decided, uncharacteristically, on flight. By sunday afternoon I was resolved. I had a plan.

It was a cold and snowy Monday morning. My son was still contacting people, trying to get the bureaucratic machine to stop turning. And, although the powers that be were assuring him that no one would show up at my door today, I didn’t trust the system.

I calmly packed enough food and clothes for several days, seriously not knowing if I would be chased down by misguided police cars and arrested. I was terrified of today and governmental systems without brains. I tucked my service dog under my arm and quietly left the hotel before dawn.

I went to my parking-lot office and jumped onto Optimum, behind an office building. I took care of business and emails for several hours, turning on the car intermittently for heat. My service dog, snuggled beneath layers of fleece, slept beside me, relieved that I wasn’t crying anymore. I was at peace with my decision.

I went to the bank, aware of every police car, and put the FEMA check in that I had been carrying around for a month, in case they detained me. Now that was safe.

Then I went to my house and parked on the street out front, not crying as I usually did right here since the flood. For right now, I was more me than I had been since that day that washed away my life in sewage: I was standing up for what I believed. I was the universal disabled person, changing action toward us, changing perception of us. I felt clean and serene. I sat there for hours in the cold car watching huge white snowflakes cascade silently to the desolate soil of my mutilated neighborhood and spread a winter wonderland before my eyes. Pollyanna watched the snow excitedly with me, until the quiet rhythm lulled her into sweet sleep. We were home. We were content.

My cell phone jarred me back to reality. I was sitting in front of my house with no walls, floors, electric or toilet bowl: Fema was insane, and APS was chasing me around with policemen. I was still disabled. I ignored the phone. It rang again, and again. Finally I picked it up.

“I’m in the lobby. Are you coming out? You were supposed to meet me.”

I said nothing.

“Could you come to the lobby to meet me.” It was not a question.

I said nothing.

“You said you would meet me in the lobby.”

I waited a moment. Then I said calmly, “I am not at the hotel.”

“You what! You are not at the hotel? Where are you?” She exclaimed.

“I called you. I left a message on your machine not to come. I told you I would not meet without a lawyer. I couldn’t get one over the weekend.”

“You left?” It was obvious she didn’t expect that of me.

“Yes,” was my simple response.

“Where are you,” she said, obviously frustrated.

“That is my business.” I was not intimidated. I was not afraid anymore. I made my point.

“If you meet me for five minutes, I will close the case. I need to see you.”

I didn’t care what she needed. But I did want her to go away, dissolve back into the sewage surge.

“I will meet you on the corner of Grand Avenue in Massapequa, and I won’t get out of the car.” I said. I expected her to show up with policemen, as she threatened.

I called two people to witness the meeting. While I was on the phone, she called. “Where are you? What make of car are you driving?”

I drove down Grand Avenue and didn’t see a police car. There was no place to park, so I parked in the nearest parking lot.

A few minutes later, a mousey woman with a straight bob haircut, grasping a clip-board to her chest, walked up and said, “This is not me. My boss makes me stalk people. This is not my personality. I hate it.”

“Why don’t you get a different job,” I said sincerely. It seemed an obvious solution.

“I understand how you feel,” she said. “I really understand how you feel.” She had no idea how her threats had traumatized me. She was a frivolous lady enforcing the mandates of a broken system for a pay check, without the conviction of her actions. (I later learned the APS ladies had no authority to threaten me with police without a formal hearing, compelling witnesses, before a judge.)

She stood shivering in the cold afternoon wind next to my car and said she was closing the case. I said, “So I will never see you again?”

She said, “That’s right.” I scanned her face for empathy. She was just a page with no words, hardly worth reading.

We engaged in light conversation. She said she knew I didn’t need help the first time she spoke to me. She shivered, putting on her gloves. I wondered why she harassed me for two weeks and threatened the police. But she was just a broken system malfunctioning. As she walked away, I felt sorry for her, for her lack of conviction. I closed the car window.