My Toxic House – Substantially Damaged. 11-29-13

My Toxic House: Substantially Damaged. 11-29-13

It is a location, a place where you belong. Where nobody can take your pictures off the wall. And when it is suddenly torn away by a vile and violent cyclone, and systems and people hammer at you that you do not belong, pull the blankets from under you as you sleep, you hold tight to the polluted soil of your own sweet land.

I sit on my land every day, by my home of 48 years where I raised my sons, now a gutted, toxic death-trap. I sit in my accessible van that no longer functions as it should, because it is packed tight with suitcases, winter blankets, food and living necessities. I cannot use the mechanisms of the access seat. It is blocked and impotent by the trauma of my life.

The land grows dark. I sit still in my van with my service dog Pollyanna in my arms, staring at a fading rock garden that I carried stone by stone from forests, beaches and mountain streams: now raped by looters stripping what is left of me. My face and blouse are soaked with tears flowing from eyes never dry these days. Pollyanna licks the salt away. Eventually, she tires, rests her silky head upon my sobbing breast, then slides onto her fleecy coverlet, exhausted from comforting the inconsolable.

It is so hard, impossible, to function: and it is impossible for able-bodied people to understand problems they have never experienced. But for me, it is my new, horrific, terrifying reality. It is beyond my comprehension that a life that was so manageable, is now so hideously out of control. I am thrust into a world where I am an alien, a freak: a world of systems and people that have no tolerance for difference, for pain, or those who use equipment. I am so lost: isolated. I walk through a dark, bleak, compassionless wasteland that is life post-Sandy, alone. I am alone!

My neighbors approach me, as I weep in my van, with, “Bulldoze the house and leave. You are bringing down our property values, because your house is still obviously storm-damaged. We want people to forget this neighborhood was flooded, so we can sell.”

It hurts to be dismissed.. But, I understand property values, and wanting to forget, to go on. Beyond that, I understand that I am a metaphor: a visible reminder that it can all be gone in a moment: your home, your health, your life. I hate that people now see me for my inadequacies. I was such a productive, appreciated person before Sandy: making unprecedented differences for disabled individuals. How fragile are our roles in life. How fickle is the cruel fist of fate.that turned a massive cyclone to my yard.

With my house, it did not happen all at once. It has been a slow process of loss, upon loss, culminating in my house sucking the breath from me and leaving me unconscious on the floor.

In the beginning, all the insurance adjusters who inspected my house said it was “totaled” by Hurricane Sandy. They were empathetic to the $50,000 loss of my accessible equipment and environment, but powerless. I had $300,000 in homeowners insurance: $100.000 contents. I only had $14,600 in flood insurance, because I did not live near the water and that was the policy my agent gave me. I received the flood insurance and $275 from the Homeowners Policy, for food spoilage and a front door bashed in by the wind. It was leveling.

In the disaster equation, if you had any flood insurance, it hurt you with FEMA. Survivors say that rather than being rewarded for doing the right thing, paying premiums: those of us who did, were “punished” and those who did not were reimbursed many times more, for the same loss. This was just the first of a litany of puzzling realities and inequities in the disaster repair/restoration marathon.

Initially, all estimates said it would cost over $100,000 to restore my house, before discovery of the foundation damage. FEMA never validated Substantial Damage to my house. FEMA inspected my house and gave me $5,000 for repairs. What could they be thinking!!

My house was now gutted, but there were still gross brown stains where feces spilled out of the toilet bowl, slithering through bedrooms and living room, and sewage bashed in the metal front door, splattering its imprint into my cement front porch. Mold crept deep into the walls, floors and floated visible in the acrid air. My house was initially sprayed for sewage and mold. It was declared safe. Six weeks later, a Mold Expert consulted, reported the house must be “Shocked,” then scrubbed down. Eight men cost me $4,000. He said it was the only way we could be sure the mold would not return. Afterwards, the house looked spotless.

In June I got the first indication that there was structural damage to my house. FEMA requested an inspection of my house by the Town: an inspection denied in November because Town inspectors said the house was “contaminated” and they could get “Hepatitis”. But in June, FEMA Program Directors claimed if the inspection revealed substantial damage, they could award me total: $31,900. Then, I would be allowed to apply for the Empire State $10,000 Grant. They assured me, “We accept a Building Department report over our own.” However, when it validated structural damage, foundation damage, FEMA declared, “You are not getting one penny more!”

White cottony puff-balls floated through my gutted house and clung to the walls. It was sprayed again for mold. In August, after further demolition of the walls and removal of objects and insulation from the attic suggested further contamination, the house was “Shocked” one last time and scrubbed, to death.

On September 20, 2013, I entered my gutted house, dreaming of holidays at home and pretty colors. How could I know a malevolent force had taken up residence in my personal space, and made my home a deathtrap. Insidiously, it overcame me, the polluted air. As I became increasingly dizzy, I did not notice my eyes swelling, my throat closing, until severe stomach pain doubled me over. Nausea and headache overwhelmed me. I could not breathe. My head, my face: the pain. I could not get a breath. Darkness slashed me to the ground as I passed out smothering in sweet yesterdays, gone bad.

For days I could not move my head, from excruciating pain in my face. I developed respiratory infection and rashes. Pollyanna woke up the next morning throwing up bile. She gasped and struggled for air all night. I sat outside my hotel room giving her oxygen and holding onto her life all that long dark night: I would not let her go. My doctor said, never go into that house again. It was terminal.

NY Rising, Governor Cuomo’s loan-to-grant Program touting restoration help for Sandy Survivors, sent me a letter offering a $145,000 Loan-to-Grant to “Elevate and Restore or Bulldoze and Rebuild” my house. I inquired, and like other homeowners, I was told it was not enough: it would cost at least $200,000. It is about $100,000 just to elevate the house. Also, the Program requires that the homeowner own and also live in the house for 3 years after receiving the loan, for it to become a grant. Many homeowners want to rebuild to recover equity in the house, and sell. The goal of this Program is to repopulate the land and revive devastated neighborhoods.

Now, I was being told that I had to elevate my house, repair it, and live in it for five years in order to forgive the debt, and that a ramp to that elevation would go around the whole house. Floodplain codes and costs for piecing my tattered house back together were making returning home increasingly impossible, for the lady in the wheelchair.

I told everyone I wanted a meeting with the Governor. There was a New York State BuyOut Program for totaled houses. But they were presently only considering clusters of houses and houses on the shore. Mine was neither. But, I felt my house qualified, except for the cluster and shore rules. And, I had observed that some Programs were being modified as time passed and justification became clearer. Then, after I passed out in my house, amazingly, I heard that they might be considering individual homes for BuyOut.

Be careful what you wish for! Considering a BuyOut is bittersweet, at best. In addition to the loss and trauma of the decision, the NY Rising Program airs commercials stating, “We are New Yorkers. We are stronger than the storm. Our communities are rising, better than before.” They make you feel like a loser because you are never going home: like you are giving up. In reality, there are few choices in this disaster equation: only best worst options.

NY Rising is a vendor-based Rebuild/Rehabilitate Program. That means, the State designates a fixed ceiling of money to be paid to contractors not homeowners, to restore your home to the same footprint, at basic quality, using new building and flood codes. The Program is faulted and disorganized: it is being designed in progress; rebuild allowances are unrealistically low; contractors are being paid in unfair increments, so many will not participate; and payment is extremely slow (Only 4 of 4,000 applicants have to date received any payment on their house.). It is a loan to grant program: the homeowner must own and live in the house for 3 (originally 5) years before it becomes a grant.

The BuyOut Program is called NY Recreate. NY State will purchase shoreline and high-risk houses at assessed value before the storm. This land is no longer habitable and may be used for parks. It was originally offered only to clusters of homes. Presently Buy Outs are only offered in Suffolk County. Recently certain individual “substantially damaged” homes are being considered for “Acquisition.”. The cash amount to a homeowner is low, but better than the un-repaired market value post-Sandy. The problem with this Program is that the “sale” price is not enough to replace the house with a similar house, in the same geographic area. Homeowners are devastated by the loss of place, often Long Island.

After 13 months of very intensive work, of being denied, and passed over by every program and charity, and putting $23,000 in repairs into my house, my house was overcome by chemicals and died a horrible death, leaving me stranded in the cold, cruel season of Good Will to All men: sitting on a building lot demolished by ax-slinging maniacs by mistake. When well-meaning people wish me a “Happy Holiday,” I wonder why they cannot see me bleeding.

NY Rising and NY Recreate require a Letter of Substantial Damage to proceed. This became my first clear definition of what was wrong with my house. Surely if I had this information when FEMA inspected my house, when they insisted that I put the heating system and electric in, I would have made different decisions.

“It was determined by inspection by the area building inspector that the floodwaters reached an average of five to six feet around and in the home. The water inundated the sub grade crawl space resulting in the entire building being shifted off the foundation and in some areas actually washing away the existing masonry blocks. The damage to the foundation and floor joists of the home has resulted in deflections many structural framing elements. The entire dwelling has shifted off the foundation. The Department of Building has therefore determined that the dwelling has been substantially damaged….”

I do not live on the water, or close to the water. But my house is slightly south of Merrick Road, on land that was once marshland. We never even got water in the street, unless leaves block the storm sewer: you rake them away, the water is gone. I would have been in my house, in my hospital bed that went on fire, with my service dog, if my sons had not nagged me out of the house. How vulnerable our decisions make us.

So there it is in black and white, on the day of SuperStorm Sandy, October 29, 2012, my house was fatally injured by a post-hurricane cyclone. I tried to breathe life back into her, but the diagnosis was wrong and she was too weak to survive the timeline of broken systems. On that day, my life was changed by the fickle fist of fate, forever!

Life post-Hurricane Sandy is a nightmare: of failed systems, apathy, toxic houses and substantially damaged people. No one cares about the agony of broken homeowners trying to stand brick on top of brick, in gunk. Everyone is broken in some way, limping through moldy cobwebs, gagging on sour milk. Priorities of programs and systems are gutted structures and paperwork, not people. Every day I wake to the stench of my life now, the reality that today will be worse than yesterday: as my body falls into irreversible loss, medical disaster, invisible to others. The reality of escalating loss is grounding, liberating, empowering.

People strive to regain some semblance of normalcy and financial stability in the horrific scenario called recovery – non-help, inequity. Process, procedure and outcomes shout down humanity. The weak are trampled. As we grow stronger, as the shock of Sandy trauma becomes our new reality, we understand we are our own best help. We are stronger than systems and cruel fate. Men climb up on the rubble of their land, are energized by their own autonomy, and wade through the sewage to the other side, conquerer: stronger, wiser, sadder than before.

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FEMA Raid 1-11-13

FEMA Raid. 1-11-13

I awoke to a post-Sandy day, with the weight of the world lying on my chest. Yesterday was the day FEMA was supposed to announce if displaced Hurricane Sandy victims would be allowed to stay in Hotel Housing or be thrown into the cold January streets. But typically, FEMA ignored their own deadlines and left thousands of bedraggled victims packing their paltry belongings, in fear.

I, in addition, submitted a written Hotel Room Appeal based on my severe disability, which they had been ignoring for six weeks, claiming it was “In Process, No Decision Available.” And then there was the call from a representative on the 28th: a badgering, angry, harassing lady from FEMA. She told me: make a plan and get out by the 12th; hotel staffs have been instructed by FEMA to remove all FEMA recipients on the morning of the 13th; the Hotel Program is over; your Appeal will not receive any answer because the Hotel Program is over; even if the Program were extended, you will not be allowed to stay; so get a plan and get out or you will be removed; if you cannot go to an apartment, we can put you in a “facility.” What a lot to digest after I was just told at Cedar Creek Park FEMA that I was approved until the 12th and it would be automatically renewed: and by the Special Needs housing Hotline that, due to the condition of my house, I was evaluated to need housing for at least 6 months. I pondered why this government agency was so inefficient, inept, and unable to accomplish an organized mission with their fractured staff of roaming trainees.

I noticed that the local television station that ran an interview with me on the 8th about FEMA’s January 12th deadline, was running clips of the interview, saying that we were all still waiting for an answer whether or not the Hotel Program had been extended. I watched for updates all morning, until my ride picked me up.

I went to the store to get totes to carry my post-Sandy living tools to the car when they threw me out. I had told News 12 that I would request a policeman. As a disabled advocate of 35 years, I was not going to allow FEMA to throw a severely disabled cancer survivor into the cold January streets without legal recourse. Perhaps I was facing the American’s with Disabilities challenge of my life. At the least, I was facing a moral travesty in this event dubbed SuperStorm/NationalDisaster Hurricane Sandy, that had rapidly turned into a National Tragedy!

I had, sadly, learned to be tentative and distrustful since the Super Storm had washed away my life. Nothing was as it seemed: the seams were on the outside, sweet was sour. Life, was walking on railroad tracks, with the third rail braided expertly throughout the steel. Nothing was soft anymore.

I moved about all day in a fog of uncertainty: knowing I belonged nowhere. The stores were full of people who didn’t know me and didn’t see my wounds bleeding through my clothes. I was alone in a world full of people with destinations.

Arriving back at the hotel at 1:45, I put the card into the lock and the door opened: I was not locked out: I was here for another night! Inside I found a barrage of informed electronic sources letting me know that the Program had been extended by the Governor for another 2 weeks. Delayed, but not resolved. I put the television on and saw myself smiling as newscasters announced that the Program had been extended. I harbored cautious relief. I fed Pollyanna chicken from Kentucky and settled down with my iPad and my puppy by my side: to try to decompress. There were phone calls and emails from excited well-wishers who didn’t understand how long is two weeks. I went with the flow, enjoying my temporary reprieve, trusting nothing.

I finished a turkey sandwich. I craved meat all the time now and really didn’t get much. Writing on my iPad with a crumb-filled plate on the bedside table, there was a knock on the hotel room door. I was startled. At home, everyone knows not to come to my door unannounced, especially at night. I looked out the window, recognizing the woman from the front desk. I wondered why she had not called first, as they always did. She spoke through the window.

I opened the door a crack and she said, “These people are from FEMA, to see you.” They looked like me, rumpled and crumpled and worn, with intense faces. I was dumb. They entered quickly, portfolios in hand. There were ID’s swinging from their necks, but I really don’t remember anything except “We are from FEMA.” The desk clerk disappeared. We were alone. Later, when I said they didn’t show me an ID, they each came over to my bedside and showed me his/her dangling tag. I asked why they didn’t call first, and they said they called the hotel.

There I was alone after dark with two wandering facilitators of FEMA’s broken system, beneficiary of a surprise visit. They claimed they were here to help me, by offering alternate options to this place I was now housed within. They obviously thought I was stupid. I knew that meant that they were here to convince me to go elsewhere. Tomorrow was the deadline FEMA had given me to get out, and she told me even if the Program was extended, I was out. She told me they would remove me or “put you in a facility.” I wondered if they were authorized to remove me bodily. I was very afraid. I wondered if I should call 911.

They asked me for several documents that I had submitted many weeks before, and ones, I was told at Cedar Creek Park, already existed in the FEMA computer. They made lots of excuses about not being able to do this or that, because they did not have documents, or authorizations. It turns out these people were so badly misinformed about me by FEMA, they thought I was undocumented and uncooperative, when actually, all of my paperwork had been in for many weeks, some submitted multiple times. FEMA’s practices and procedures, document security and, information dispersal are so dysfunctional as to make progress and resolution totally impossible.

Then they started talking about places I could go besides here and agencies besides FEMA, that might help me. They said there is a limit to FEMA aid and the services it covers. I said it said on television that the Hotel Program was extended. The woman said, “Oh, the television said you could stay.” I got very upset and said, “I think I need a lawyer, I want you to leave.”

I called my son. I emailed an official. Everyone was calling someone. Phones were ringing, everyone was talking to someone. Everyone was confused and frustrated. I wanted all the questions, all the mistakes, all the bureaucratic nonsense to stop. I was so tired. The only thing I was certain of was that they came to convince me to leave. I was very frightened. I couldn’t breathe from turning my head to the right. My hospital bed at home does not allow for anyone to stand on my right-hand side. The man said, “Are you all right?”

I said, “I can’t breathe.”

Phones fell to the bed. There was oxygen. There was quiet.

My son asked them to leave. The woman packed her portfolio and backpack and walked to the door. I was very afraid. I told them I just want to stay here. They asked me why. “Maybe we can find a place like this somewhere else. I said, “I just want to stay here. I can function here.” I wanted them to leave me alone. I wanted my sweet home.

The man said that if I absolutely refused their options, I could write a paper saying I want to stay here. They said if I didn’t write a paper saying I need additional housing, I would get none. They told me what to say. I wrote it down.

During their visit, velvet words had peeled effortlessly like an onion skin, to reveal layer upon layer of insidious motivations. I no longer feared the aggressors who raided my safe solitude with an agenda, so easily revealed. I was tired of inept FEMA: inaction, denials, lost papers, stalling, misrepresentations, denying responsibility, threats, information so amorphous as to become lies, help so unrealistic that it becomes harm, ludicrous decisions. I longed for someone to trust. I watched FEMA walk, calm and reassuring out the door. I knew it wasn’t over.

The Morning After the Night Before. 10-30-12

Twilight Just After Sunset Near Caesarea

I opened my eyes to an overcast murky world that would not lift, foreshadowing reality: a world that would become too stark, too awful, too present, to bear or to escape. A light rain fell, winds gusting with deceptive lack of force, lulling one into false optimism, soon to be shattered.

I woke crumpled against the wall of a cold, overcrowded room smelling of cat, on the floor, wrapped in soft blankets I brought here, with my service dog clinging to my lap. There was pain, much pain, and I just wanted my own bed. My only goal was to get home and uncrumple myself in my sweet nest. The storm was over. There was no heat or electric. But I had lots of warm blankets at home and we would be just fine. So, I expressed my gratitude for the shelter, and headed happily away.

The rain was no intrusion to driving and the wind was a relief from stuffiness. I thought of strawberry ice cream in my freezer and decided to make it a special breakfast treat, rather than watch it melt away with the power outage. Whack! In front of me across the road, a tree: a wall of branches, now blocked the road. Looming fast, it was reality, right smack in front of me, looming fast. Something powerful happened to make this giant fall in such an undignified manner. I was jolted.

I could not turn right nor left, but turned around and found a street around the giant, broken and defeated. Suddenly the winds seemed stronger and the rain was more in my face. I squinted watchfully as I made my way along side streets strewn with branches. Driving south, trees across the road increased in frequency. They were like footprints to the deconstruction of my life

Coming down Willoughby Avenue, Merrick Road was the line of demarcation. Below Merrick Road the path of the water was devastating. Above Merrick Road, homes were untouched. I did not know. Most of us had no electric or television since yesterday, so we saw nothing that happened during the storm. I continued across Merrick Road, down Willoughby. At the postman’s house, the prettiest house in the neighborhood, just renovated last year, with 4 little girls sleeping inside, there was a huge tree across the road: fallen away from the house, not touching those on the other side. Around the corner a large curbside tree had torn through the living room roof and wall of the yellow cape cod with violets along the fence. White curtains, tangled in the branches in the wind, were tattered and filthy. I became aware of violence, and worried for little children. My car moved faster, past people I did not see. I pulled slowly in front of my modest green ranch house: all seemed intact, oddly silent. Neighbors were uncharacteristically standing clustered together, but I paid no attention. I was looking at the dark boggy earth that had become my front yard.

I backed into my driveway as I always did. The ground felt soft and slippery beneath me. I snuggled my car by the side door and sighed, secure. I was home! The storm was gone. How quickly we make assumptions based on what we want to believe. I did not notice the leaves and branches strewn across my yard. The cinder block wall that I built so many years ago was smashed against the north side of the house, in pieces. I was overwhelmed by the fury: I filled with fear. I picked up my cell phone to call my children, but realized they no longer lived close by. I sent an email describing what I saw, ending with, “I am afraid to go in,” not realizing how understated those words would become.

The ground had become spongy, a soggy black bog. There was a foul stench about the yard. Putrid black silt covered the back stoop, broken wall, and back door. I put the key into the lock and turned it gently. It was as if I was a stranger, the door was blocked against me. I pushed, but it did not budge. Puzzled, unable to enter my own home, I approached the front door. The metal storm door was bashed in, hanging in shards that tore the coat off my back. I pushed the metal inner door: it opened barely a few inches.

Furniture was piled against the door, placed there by a vile intruder, pernicious. I had to break into my own home, like a sneak thief in the night. Both entries were rudely barricaded by furniture. Nothing could have prepared me for the violence inside. It was like a tornado hit, but left the walls standing. My home, my sanctuary was shattered, disrespected, violated: my belongings torn, twisted, fractured, muddy, smeared, stinking, filthy, clotted, polluted, defiled, clumped into one horrific collage. I was appalled! I was horrified! I was afraid.

Black silt, brown residue, leaves, seaweed, muck, covered everything. My life welled up in my throat and poured from my eyes, gulping, gasping. It was my worst nightmare. The 48 inch cabinet television was thrown to the floor on top of the cable box, VCR/DVD player and Roku, all gifts from people who love me. My movies! I gasped. “Oh my God. Oh my God”. Everything in the room was somewhere else. My double memory foam hospital bed that took three men to carry into the house, was thrown across the room like a toy. A gallon jug of vinegar that was by the back door was thrown against the north living room wall. The couch, the love-seat, hassock and my bed were soaked with slimy seawater and stinking sewage. Fifteen tanks full of oxygen were flung about the rooms and propelled down the hall amid macerated sea plants. A thick brown trail of sewage wiped across my bed, the couch, through the electronic equipment, and grossly down the hallway to the bedrooms and bathroom. There was the acrid smell of fire. I was choking, wheezing, smothering from the oppressive air.

My fluffy white service dog jumped from my arms onto our precious bed, strewn with pillow pets she loved. I gasped and grabbed her from the vile polluted mess that had been my comfort, my solace from the pain, yesterday. Baby pictures, birthday cards, reference books I used in my writing every day, scores of classic movies, vital papers, vitamin bottles, leather folders, jewelry, unused check books, paper clips, lemon drops, fleece blankets and shirts, teddy bears, antiques, brass lamps, houseplants, Florida sea shells, couch pillows with pictures of bunnies and teddy bears, were smeared with sewage and strewn about the room. My honey oak desk drawers were dashed, broken: filled with water, filled with tiny treasures, special papers and poop. My emotions ruptured across the fetid mess before me. I sobbed uncontrollably, mumbling to myself over and over, “It’s gone. All gone. I lost everything. It’s all gone.” Over and over throughout the rooms i heard my voice. The violence in that room was terrifying. My cell phone rang. All I could say was, “It’s gone. All gone. I lost everything.” I don’t know who was listening.

The floor was slimy and gritty all at once. I was devastated. I was destroyed. I was appalled. The house smelled pungent, acrid. I was nauseous. My eyes were flaming coals ignited by the stench. I was numb, operating in slow motion. I screamed, but no sound came from me. I was in someone else’s nightmare, not my own. I was alone. I was not there at all. The smell was smothering me.

I saw pink glittering through the slime in front of me where a box of my tiny treasures smashed to splinters. I reached into the muck and grasped a smooth hard rock. It was a small quartz cross my son gave me many years before. I grasped the contaminated artifact to my heart and sobbed without shame. The world was too much with me.

There was no place to walk, nothing to touch that was not foul and nasty, contaminated. This was my home! The floors of the halls from the toilet to the living room couch were encrusted with thick brown residue, smeared up the walls and on the furniture. All of the bedroom doors were also blocked with furniture. The floors in the halls were torn up, splintered and shattered, strewn with plant life. My manual wheelchair was lying dead on the floor: reeking and drenched. The Everest and Jennings semi-recliner was a prize: I kept it like new because they don’t make semi-recliners anymore and that is what I need. The door to the linen closet was open: bedding and towels three feet up were soaked and soiled. Under the bottom shelf a Jacuzzi portable whirlpool was ruined in its box. So many hours this machine had eased my pain.

The bedroom next to the bathroom is my office, where my computers, copy machine and office equipment, and a multitude of irreplaceable documents are kept: my writings for 55 years, my poetry and notes for books in progress; documentation for 35 years of work as an advocate for disabled individuals and as a Consultant for Equal Access; architect’s plans and photos for access projects completed; my medical records. All of these documents were tucked away in plastic bins or fireproof boxes in large locked metal cabinets and locked steel file cabinets around the room, next to an oak computer desk, a maple desk, and my $7,000 computerized traction bed.

The room was in shambles, like someone had ransacked it. Locked fireproof boxes were tossed across the room like paper bags, turned upside down, full of water. Locked cabinets and desk drawers were dripping: opened gushing putrid water. Plastic totes were full of brown slimy water: documents floating, clotted and illegible. There was no crevice that this insidious slime did not breach. I was incredulous. Most of my irreplaceable documentation was lost. My heart stopped. It was like my work, a vital part of my life, ME, never existed. I was bankrupt!

Near the door was a stack of clear totes. I was in the process of reorganizing my winter clothes. The unused totes were full of sewage water: the clothes were wet and fouled, clumped on the floor. Office supplies, a laptop, two portable hard drives, copy machine, CD rewriter, DVD player, four typewriters, intermingled with clothes, bedding, shoes, brand new pants and fleece from Lands End, toiletries, computer programs, camera bags, suitcases, and a box of books on what to eat for Cancer purchased from Amazon and not yet read. Strewn about was anything that floated by and was ensnared by this gross collage.

My life-long desks, pristine solid wood, drawers swollen shut, cemented against me, to be broken into with tools of destruction, would reveal putrid clotted vital documents devoid of recognizability or purpose. The terror throughout my house was tearing large chunks from my flesh and leaving me hemorrhaging into the rancid muck. On the floor I noticed my tiny Gund teddy bear, fallen from great heights, gulping sewage, staring up at me, oozing dung, lost and alone.

My hand reached out to him, until I saw my computerized traction bed, covered with stuffed animals, ruffled pillows and pretty flowered comforters, like a quagmire oozing slop into its sophisticated mechanisms. I knew then that relief from spinal pain, comfort as I had known it, would never be the same. I lost my lifeline to normalcy. I had lost medical equipment that I could never replace in my lifetime. I laid my face upon the foul and putrid bedspread, caressing yesterday, and wept to exhaustion. All at once I felt hopeless, panicked and numb.

The middle bedroom was a storehouse of my professional books, stored pedantically in briefcases on a rolling cart for easy use. Over 35 years I had amassed a library to rival institutions. All were gone, in the flash of a sewage surge: all saturated and unreadable. I saw the color of my blood oozing into the debris below and I was weakened with its letting.

Large bins of medical equipment I use every day were overturned and filled with gunk: traction accessories, a multitude of electrical devices for heating and cooling, massagers, two leg braces, passive night braces and heel pillows, an Ultrasound unit, Air Circulation Legs, two passive exercise machines, and on and on: an arsenal to ward off pain and deterioration, soaked, slimy, ruined. I couldn’t think, or feel or cry anymore. it was as if something broke inside of me. I was defeated, destitute, shattered. More winter fleece and pants were one huge clotted mass, a spongy bog wrapping itself around smeared paper pages and electrical cords. Would I ever be warm again, or safe?

The master bedroom had a double bed, used when my children visit from out of state. The pastel patchwork bedspread was deceptively pretty, until I touched it: it turned to stinking gelatin. I bought this pillow-top mattress for my mom: it was expensive and comfortable. I wrapped it in plastic to protect it from potential spills. Now it was a balloon full of water, waiting to burst. As we all experienced with our protective totes and plastic covers, the water rushed in and did not drain away. There was no way to stay the waters of destruction from their pernicious course. We are mere tinder, tossed about by willful tides.

My honey maple cabinet sewing machine of 50 years was next to the bed. I used it to make my clothes, baby clothes, drapes and pillows, everything, including beautiful Raggedy Ann and Andy dolls with pink cheeks and a real heart. Ruined! My sewing chest filled with accessories collected through the years, and patchwork patches saved from special garments over the years, pretty lace in various colors, flower appliqu├ęs and spools of thread, was filled with sewer water, to the tiniest thimble, was spitting straight pins onto the ruptured floor. My parents gave me this cherry chest for my birthday when I was 16. My mom bought this house I bought from her when I was 21. Gone! All gone! How fragile is one life passing by.

Two oxygen concentrators and a portable oxygen machine sat on the other side of the bed dripping sea water and silt. It was incomprehensible to me that I lost most of my medical equipment. I didn’t know what to do. I was paralyzed with fear. How would I survive? I had taken such good care of the equipment, and still it was gone, all gone: through no fault of my own. Could I survive? I had no answers. I was impotent.

Two passive exercise machines were flat on the floor, tossed there by the tides, soggy and rusting. And then I saw the most gross indignity. My power wheelchair, smeared and stained with feces, upholstery saturated, mechanisms dripping: spent. I could not wrap my mind around this loss. I could only remember me and my service dog riding through malls, on boardwalks and into meetings, so grateful to be doing it on our own. I could not see, for all the tears were blinding me. I knew that I had lost too much right here. I mumbled weakly, “It’s gone. All gone.” No one was listening. Thousands lost everything in this “Super Storm,” dubbed a National Disaster: that would leave thousands upon thousands destitute, and the government listening with ears clogged by fiscal crisis. It would become survival of the fittest: with no help for the weak. It would become a National Tragedy, like Hurricane Katrina. I must be strong. I was hemorrhaging. Life was ebbing from me.

I fought the tears and vowed not to be a victim of this loss. But then I saw my Christmas tree strewn across the floor, lying passive beneath books, knitting needles, pillows, broken glass, a laptop, and a kitchen pot. I remembered it standing tall with tinsel and sparking lights, year after year: hung with tiny toys saved from my children’s childhood, and any treasure that made my heart light up. Each ornament was a special memory invoked, endeared. and an accumulation of all the years and all the joy. My Christmas tree was a beacon of hope and joy and peace for me on cold winter nights. To see it sucking slime, it wasn’t right. I lost it yet again, and wept to exhaustion, unashamed, for my Christmas tree, my wheelchair, my hospital bed, my life. And I was done with crying for myself. All was lost and ruined and ugly. And I must find a way to salvage what I could of this my ebbing life. The stench of sewage, decay and fire all mixed together in this my house, was gagging me and I threw up.

In the hallway was a closet some use as a guest room: it fits a single bed. It gives access to the attic. I used this space for storage of functional tools: vacuum, large battery-operated hedge cutter, hedge cutters for the cemetery, a chain saw, George Foreman Grill, new Osterizer, Convection Oven, Brother Printer, sewing machine, fabrics, formal dresses and coats, my sons’ childhood memorabilia, textbooks and classic movies. Five-foot metal cabinets lined the walls. The first was office supplies: staplers of various sizes, computer and copy paper, stationary, presentation books, loose leafs, plastic pages, folios, folders, envelopes, computer programs, and computer bags. The second had small appliances, pots and pans and holiday dishes. The top shelves were a storehouse of emergency and holiday food, organized, and replaced at expiration. I was proud of my secret stash, handy for unexpected guests: neatly tucked away.

I remember a number of times I went into this closet while the worst of a wind storm passed by, because it was in the center of the house surrounded by rooms: sheltered, protected. It seemed to me the safest place in the house. During Hurricane Sandy, this room gulped in and retained water like a thirsty fish tank. It became a tangled mass of necessary items made worthless, locked away or not. With loss piling upon loss, I became most painfully aware that nothing was safe or secure from this insidious Monster Storm that raped my home. And, no matter how much you do the right thing or prepare for a secure future, it can all be torn away in a millisecond by a force of nature, and you are alone, bleeding and unclothed. All of my plans and dreams, all my props and crutches, were torn away, I was lying in a pile of dung, anonymous. I was exhausted.

As I turned the corner, I glanced toward the bathroom that had puked this revolting indignity across my treasures. Its mouth was open wide and stained brown, from spewing excrement down my hall: reeking, festering, spreading plague. I was not prepared to forgive the unforgivable, so I moved on, dazed and overwhelmed.

As I passed by my bed, leaving, I longed to lie down and make my spinal pain go away. I wanted so badly to be comfortable: to reclaim my hospital bed, call this storm a fraud, tear these horrific images from my memory. I ached for yesterday. I feared that I would never be that comfortable again. I doubled over sobbing hysterically for all that was lost, for the innocence of my cloistered world that I could never regain. I was aware and alone. But I still had no way of understanding the terrible awfulness of being disabled during disaster.

I left the house through the kitchen, the route I customarily used to enter my home of 48 years. Cabinet doors were open, and expensive stainless steel cookware and appliances were scattered and pummeled, thickly crusted with feces. I was nauseated. My brand new ceramic top kitchen stove that my son and his wife had just given me was ajar and full of water. I gasped in disbelief. Why did I think that my appliances would survive? I was a vessel taking on the waters of injustice. There was too much destruction to calculate, and there would be no recourse to recompense the loss. I knew that I would never in my lifetime have anything so elegant again. It was leveling. I was numb.

And so it went, loss upon loss: stove, refrigerator, dishwasher, dryer, washer, commercial freezer, and microwave, all filled with filthy water, all ruined in one rush of fickle fate. My kitchen, my cooking, Christmas dinner putrefying in the freezer, all gone. Mom was made effectively inoperable. Grit, leaves, silt, feces and slime was dragged across the floor and into every receptacle: violated. I could no longer cry.

I followed the stinking trail of debris from receding waters, through the foyer and out the side door. Turning to look back, I witnessed the gross course of destruction made by raging water battering the doors open, hours before. I was amazed at the difference a moment can make. I was raw, exposed, and vulnerable. I vomited up the stench of my house: the putrid, acrid, nauseating, smothering, tearing smell of armageddon, my comfortable nest! I gulped the damp musty air outside and was overwhelmed by its freshness.

The Calm Before the Storm.

people on dock at sunset with approaching storm

It would be a busy weekend. My son and his wife were traveling to Long Island for a two-day Bar Mitzvah and planned to sleep at my home on Saturday night. I made spaghetti sauce, roast chicken and two pounds of honey roasted shrimp, just in case we had dinner. There were two pints of Ben and Jerry’s Chocolate Chip Cookie Dough in the freezer, my son’s favorite, and a lemon meringue pie. Since my sons moved from Long Island several years ago, visits were a treat.

As others, I was casually watching reports of the hurricane coming up the east coast. All day pretty women in red dresses made cutesy quips to weather men about this and other storms. But the bottom line was always that it would hit us with winds of 75 miles an hour. I and others reacted with the knowledge that we had been through storms like that before. There were not predictions, like last year, that this was “the storm of the Century,” when I had gone to my son’s house in Albany. And then I couldn’t get back for a week because the upstate inland streams and rivers swelled and destroyed roads and whole towns. There were no ominous reports on this one, until late that last evening, when they finally dubbed it a “Monster Storm,”. and officials belatedly warned, “Don’t underestimate this one.” I never received an evacuation call, like I did last year.,

The night before the storm surge, I sat content, making 48 meatballs for our Christmas Eve feast, a difficult task with intractable pain. But, my disability had always been my challenge, not my master, certainly making life more difficult, but more productive and satisfying; because the more difficult my life became, the harder I tried, the more I accomplished.

Christmas was looming in my mind’s eye, and by making one dish every two weeks, I had a feast in my commercial freezer by Christmas Eve, and the pain of the cooking was behind me. The meatballs turned out yummy, evenly browned and fragrant. I lined them 1/4 inch apart into a sparkling white Corningware roasting pan and placed it covered with foil in the freezer next to two casseroles of buttery-tender pot roast, a white meat chicken and broth entree, two spaghetti meat sauces, a lasagna, and four pounds of shrimp waiting to be honey roasted. Sweet satisfaction!

I had finished phase one of Christmas. Prior planning was crucial for me for successful implementation of a holiday, if I wanted to join in. I was a master of organized living, not by choice, but by necessity. And nobody ever knew how deliberate my decisions, my actions were, because I was o.k. That’s the way I wanted it.

Morning came, and I felt like I was being crushed and torn apart at once. I knew it was the change in barometric pressure. It was eerily calm, warm and humid. I spent the time washing my hair, washing my dog and washing all the floors. How ironic, to wash floors not dirty, when 24 hours later a storm surge would splatter sewage across my nest, lacerating tomorrow. Oh the violation: the disrespect!

About two o’clock my son’s wife called, saying they had finished early and were on their way. I was ready. I was prepared for any turn of events, except Sandy.

They arrived at the house stressed, because my daughter-in-law’s cousin had been rushed from the Bar Mitzvah to the hospital for complications of Ovarian Cancer. We spent the next two hours sad, agitated, frustrated, and bewildered. Finally they decided to go to her sister’s in-laws house in a neighboring town in the hope of learning information about her cousin’s condition, only to learn that she had emergency colon surgery. There was dinner with her family, and a late evening return to a warm soft bed. We promised we would eat my dinner the next time they came. None of us suspected there would never be a next time.

Morning was hectic, as my son’s wife wondered if she should visit her cousin in the hospital or attend the son’s Bar Mitzvah. They decided to stop at the same in-laws and take it from there. She came into the living room in a black and white halter dress, smiling, “Take our picture.” Those were the very last pictures ever taken in my sweet home, of two lovers, all dressed up, acting silly, anticipating showing off new dances they learned in Manhattan.

The weather reports had gotten more specific this morning. They were now saying it was going to be a big storm, a strange storm because of the tides and the moon, and an unprecedented loop that it was going to make at about the level of Long Island. The storm, they predicted, was going to hook to the west, pick up a cold front, and loop back to Long Island with the cold front inside of it. But they always prefaced the reports with the fact that the winds were only 75 miles an hour, hardly a hurricane.

I suggested that my son and his wife should either stay overnight at my house or leave the party early, because it was predicted that the storm was going to make landfall in Northern New Jersey. My son assured me that he was watching the weather forecast, and if they needed, they would leave the party early. “We are going to be in Long Beach, right on the ocean, so we will be able to see if it gets bad.” Who imagined big chunks of Long Beach would be gone tomorrow. Certainly not two innocents dreaming of dancing in party clothes. My son’s wife repeated that this party was just really important to her. I just wanted them home safe before the storm hit. It was 11 a.m. when they left the house, pretty and unafraid. I was uneasy at their optimism. I feared them crossing the Bridges in a high wind, or driving into a blinding storm on 95. That was the last I heard from them until about 4:30, when I looked on Google Latitude on my computer and saw that they were almost home. I was relieved, but thought they had cut it close.

I crawled into my hospital bed, unawares that I would never be that comfortable again. As my throbbing body settled into memory foam and my service dog snuggled under my arm, I whispered one last time, “Thank you God.” I was at peace.

Sunday was the 29th, the day my world went away. The wind was picking up. The air was moist and claustrophobic. Watching my favorite classic movies, I was cozy and content in my sweet bed all day. Every once in a while I would tune into the weather. Until evening, there was really not much new. But evening hours brought news conferences with officials warning us, “Don’t underestimate this storm. It is going to be an extremely dangerous storm.” They explained the moon and the tides, and the turn west to pick up the cold front. Their voices were stressed. Suddenly there was no time to prepare. No time to be afraid.

I wondered why officials waited so long to warn us? If my two sons had not pushed me to evacuate, I would have chosen to be comfortable and warm in my own bed. I would have been in my hospital bed, plugged into the wall, as 6 feet of turbulent water sheared off my front door, gulping chunks of my past, spewing unsanitary slime across my treasures. My bed, my comfort, my sanctuary, went on fire.

I went to my ex-husband’s house: uninvited, calling up favors, close-by and north of Sunrise Highway. He slept in his bed with his cat, snoring. I slept on the floor, with my service dog, moaning softly with spinal pain, wishing I was at home in my own bed. All through that last dark night, in that unwelcoming place, the wind and rain outside seemed no worse than a Nor’easter. Not so bad.

Disabled During Disaster. introduction.

Disabled and Homeless. Please help rebuild my destroyed home after Hurricane Sandy.
Wendy Wagner