NYRecreate, Are U In there: 8-5-2014
Constant excruciating pain is my reality, from loss of $50,000 in medical equipment during SuperStorm Sandy over 21 months ago. It is August, and with damaged temperature control due to severe autonomic dysfunction from SCI, I am at extreme hazard in hot humid weather. I am living in a hotel room: not home. When I need to go out in my electric wheelchair, I must take supplies stored in my wheelchair van out, and put them in the hotel room. When someone is coming to visit me, I must put those items back into the van. This is time-consuming and difficult: a small price to pay for a place to be. My electric wheelchair must be kept in the hotel room, because the battery discharges quickly in the elements. My garage drowned. So, when I need to go out, I must charge my wheelchair and move it through the narrow hotel room door, out into my Rampvan.
Invariably the chair veers out of control when I gun it to get over the marble threshold, and I gash the door. I touch up the white metal surface with a paint pen before I leave, and usually again when I return. Before I leave, I place orange cones in two parking spaces, hoping that no one will move them and claim the spaces.before I get back, or take the cones home once more. I hope my key card does not turn red when I return, because I cannot get to the office in the wheelchair. Pulling out of the parking space, I know for sure that I will never ever be as comfortable or secure as I was on October 28, 2012, making 100 meatballs to freeze for Christmas buffet in my warm, fragrant kitchen. And I know that nobody gets it, or cares!
All this is only relevant to illustrate that it is not simple for me to go out into the world, living in a hotel room without what I need to function with SCI. The systems are harsh, inflexible, and irrationally judgmental.. They circulate paperwork that I am “difficult,” “hard to please,” and “uncooperative” if I voice what I require. In the horrific world of Disaster Programs and Agencies, different needs translate to a person who is “uncooperative.” If you hold up the line, they make you pay for it!
I am in my van heading for NYRecreate in Farmingdale to deliver the Independent Appraisal I am required to submit to Appeal my Acquisition Offer. I breathe a long deep sigh of relief that I made it this far, and I want to go home. But, home is gone! Comfort is gone! Security is gone! There is cement all around me. I follow the line of a faux stone wall to Sunrise Highway, easing very slowly down the parking lot exit ramp so that my Rampvan does not bottom out. I remember my birthday six weeks after I got my van. My birthday present was a sidewalk the width of my yard, and a ramp from the street to my driveway, because my Rampvan was totally unable to enter or exit my own property. I was so happy and grateful for that ramp, and all the structural access modifications that were installed in my house and property. That was my norm. I was not different there. I was accepted for what I am. I am crying now, driving.
I cry every time I venture into my post Sandy world. There is barbed wire everywhere, walling me off from people who did not live through Sandy, walling me in to failing Programs and Agencies spewing incompetence and fraud, slashing me as I try to move forward, binding me to the rubble of yesterday, piercing hope. When I am inside the hotel room, I have very little that is mine. But I also have no visuals of the world I knew. When I go out, and I see familiar places, it cuts me deep with what I lost. When I go to a store, everywhere, I see what I need, what I lost. When I see people driving to a destination, I know that I have none. No matter where I go, I do not really belong: I do not want to be there. I wander alone with a pinpoint focus on home, in a world that went on without me and forgot who I was. I must create what I need, from nothing. I am filled with panic, fear and hopelessness, choking down silent screams: alone in a world of strangers and things.
I drive east on Sunrise Highway and turn north on Route 110, noticing that all the traffic lights are off. I wonder if there is no electric in all of these houses and businesses. How vulnerable we can all become in a moment. I wonder why the electric is off. I maneuver around police cars with flashing lights, snarled traffic, and irate drivers. I am not impacted by them: life crises seem so trivial now.
As I pull up to the NYRecreate Office building, I notice the windows look dim. I surmise their electric is off also, and hope the combination lock is working. I am wondering why my new caseworker did not answer my calls this morning telling her I was coming. I am thinking about the fact that the NYRecreate’s Offices are not accessible to anyone in a wheelchair. The main entrance of the building is open to all. But people using wheelchairs must request, if they can get through to anyone, to go through a heavy metal door on the side of the building that has a keypad combination lock: so illegal. They don’t get it!
I called my new caseworker for a third time, and listened to a message that said she would get right back to me. I had no general number for the NYRecreate Office. They always said call the 1-800 number. I parked in the illegal handicapped parking, with its three-foot access aisles, because I did not want to sit out in the sun in my wheelchair waiting until someone might come along and might let me into the building. I figured I would watch from the car to see if someone came back from lunch. I always park on the other side of the complex in the van spaces by the child care, far away from here, just so I can get out of my car with the electric wheelchair. Last year, I came to deliver papers. I had never been given a phone number. I sat in my wheelchair for one hour in the freezing rain outside the combination door, knocking on the windows of the conference rooms, trying to get someone to notice and open the door. After an hour, shivering, I was finally let in by someone returning from lunch.
So here I am today sitting outside NYRecreate Office in the heat, feeling like the second-class citizen that I have become operating within Disaster Recovery, for an hour, wondering how I am going to deliver this paper that I am required to file. I see in the distance a man gardening. I begin watching him, trying to drag him down to this end of the complex with the power of my. mind. After about a half hour, he starts walking across the grass toward me. I begin strategizing. Closer, I shout as politely as one can shout, “Excuse me sir, can you please help me.” Oddly enough, he is a kind man, and he comes over to the car and says, “What do you need.”
I asked if he could get me through that door, because I had to deliver this paper. He said he surely would do that. I began the process of getting the wheelchair out of the car. I first had to park sideways in three parking spaces so I could get back into my car. He was very patient and friendly, and there was absolutely no one within eye-shot: but I was oddly not afraid, because I was focused on getting into that building. He punched the keypad: so easy when you know the numbers. He struggled to hold the heavy metal door open as it tried to swallow me. The small vestibule was crowded with boxes and the hall inside was strewn on all sides with empty boxes. I thought it was a mess. There were several men in suits standing and they asked the handyman what I was doing here. He explained that I wanted to deliver a paper to NYRecreate. They told him to take me to the front desk. I wondered why.
The front desk turned out to be at the other end of the complex and I found myself grateful that I did not bring my broken electric wheelchair that only runs for 20 minutes. As we turned the corner, there were suddenly three people staring at me from behind a desk, like I had spaghetti on my head. I guess they were wondering how I got in. The kind handyman told them I came to give some papers to NYRecreate. He told me when I was ready to leave, to call him, and left me there by a stairs I could not descend, on the inside of a locked combination door. Barbed wire!
The receptionist quickly offered, “NYRising moved.”
I wondered why I had to come all the way back here to be told.
Her words smashed against my weary head. I was confused, frustrated, angry.
“NYRISING MOVED?” I exclaimed, “You have GOT to be kidding me!”
She said she was not kidding, and pointed to a sign on the wall.
I exclaimed, “”They move, and they don’t even tell us? What is that? They don’t bother to tell people.”
Everybody just stood there like I was the unreasonable one. But I wasn’t ready to accept that they were gone yet. They should be where they are supposed to be.
“Do you have any idea how hard it was for me to get here?” I protested.
They stared at me blankly.
I rambled on about how my new caseworker did not answer my calls or emails, about how my former caseworker was so competent, and how NYRising was implemented before it was designed. I saw my words amble out the front door and down the stairs. I was standing there pointless.
I asked the receptionist to write down the new location of NYRecreate. She copied the name address and phone number off the wall. She said they moved 4 miles north on 110. She said she wanted to call the new NYRecreate office to tell them I was coming to deliver the paper. But, she asked them if she could deliver the paper instead, on her lunch hour. I was shocked. I wanted to make sure it got there myself. It was important. But, I knew that when I got to the new building, I might not be able to get into it, given NYRisings’s lack of disabled access in the two offices I have used. And, I was wearing down from the pain. So, I accepted the receptionists unexpected offer, with gratitude and puzzlement. Why is there such rampant cruelty in the world, and random acts of unexpected kindness?