State of Mind

State of Mind

Keeping a damaged brain alive may be the greatest act of friendship.
by G.W. Miller III

Keeping a damaged brain alive may be the greatest act of friendship.

Daniel Curcio strolls around the bright room decorated in domestic bliss—spice racks on the wall, stainless steel pots and pans dangling from the ceiling, and hanging over the kitchen sink, a simple white ceramic plate that reads, “HOME IS WHERE THE LOVE IS.”
He holds the phone to his ear, glances in my direction, and states, “I’ll send Yeremiah down to pick up the pizza.”

I look at Yeremiah Hardt. He sits at the kitchen table with a smirk on his face.

“Alone?” I ask.

“Yeah,” Hardt answers. “It’s independence training.”

And despite the picture-perfect setting and the façade of normalcy, I slowly begin to understand the difficulties that cloud this unusual relationship: a five-minute trip to the corner pizza shop could be a perilous adventure.

When he was 5 years old, Hardt, now 31, tumbled into his family’s frozen pool and became trapped under the ice for more than 20 minutes.
Doctors declared him dead. He spent five months in a coma.

When he finally awoke, he could barely talk and his brain failed to function properly.

“My parents refused to believe that I had a disability,” Hardt says in his stilted voice, each consonant sounding as if his tongue clings to the top of his mouth for an extra split second.

They forced him to attend public schools, where he struggled, alone, in near silence. He graduated from high school at the age of 21 after years of suffering the abuses of his teenaged peers.

Until he met Curcio, Hardt was practically non-verbal for 20 years.

During Equality Forum in 2003, Curcio, a 38-year-old South Philly native and former Marine, scanned the crowd at Kahn Park, at 11th and Pine, and spotted Hardt.
“I thought it was going to be something romantic,” Curcio tells me.

He realized that Hardt had a disability of some sort. But because Hardt is so quiet and affable Curcio didn’t realize the extent of the damage. The two began dating.

Within a few weeks, Hardt moved into Curcio’s apartment near Ninth and Clinton. The intimacy of the small apartment quickly cast a light on the severity of Hardt’s neurological damage. His brain had been steadily deteriorating since his near-death experience.

Curcio ended the romantic relationship.

“I thought it was important that he have a friend more than anything else,” he says.

They continued to live together. And Curcio’s primary focus became tending to his new best friend.

Curcio was unemployed, having recently filed a discrimination lawsuit against his former employer, a Collingswood, N.J., high school.
Hardt burned through a string of jobs that never lasted long: stock boy at a hardware store, McDonald’s table cleaner, rug shop assistant, grocery store bagger. He would uncontrollably snap and start yelling, then get fired. One time, while bagging groceries, he hit a woman over the head with a bag.

Curcio and Hardt were broke.

“We were five months behind in rent,” Curcio remembers.

Caring for Hardt is a full-time job. He forgets things, becomes disoriented, explodes into outbursts and about once a week has seizures that can last up to five minutes.

They finally registered Hardt for Medicare and received financial assistance. Curcio found work. A personal care attendant (PCA) was hired to ensure Hardt’s safety while Curcio was at the office.

Things were fine until the attendant called out sick, then quit altogether. Four attendants quit over two years. With each disappearing attendant, Curcio would miss time from his job counseling HIV patients.

“We couldn’t find quality help,” Curcio recalls. “The money’s low, like $9 per hour. There are no benefits.”

The unreliable care meant that after Curcio came home from his job, he’d still have to arrange Hardt’s medical appointments, establish his diet and develop exercises to keep Hardt’s brain functioning.

It was like working two jobs.

In 2007 Curcio quit his counseling job, earned his certification and became Hardt’s PCA.
“My job is to keep his brain alive,” Curcio says proudly.

Anytime Hardt is awake, Curcio is on the job. They work on hand-eye coordination, reading comprehension, memory retention and physical fitness, among other activities.

Curcio starts at 6 a.m. and ends at 10 p.m. He earns $10 per hour, for an eight-hour day, and there’s no overtime. He works seven days a week.

“I don’t have a salary that’s anything equal to what I’m doing as a job,” Curcio says.

“He’s a one-man army,” Hardt interjects.

Curcio receives no benefits. He pays $300 per month for his own health coverage.

Last summer, Curcio and Hardt were members of the 26-person steering committee of the Pennsylvania Campaign for a Consumer Workforce Council. The campaign is pushing for a state mandate that would provide seniors and people with disabilities the ability to direct their own care in their own homes. It would also push for better wages and benefits for PCAs.

“If PCAs got benefits and a decent salary, they’d actually want to work,” Curcio argues.

The steering committee delivered a proposal to the State Secretary of Labor and Industry in September. The response has not been positive.

Their constant connection has strained their relationship at times. Neither dates much, as it takes a certain personality to not be threatened by the intense bond between the two.
Their working relationship, however, is likely to end soon.

Curcio is exhausted.

“I cannot afford the stress of this anymore,” he says. “I need help.”

He won’t leave Hardt in the hands of someone who isn’t committed.

“I have to make sure he’s always safe,” Curcio tells me. “That’s why the Consumer Workforce Council is so important.”

http://www.philadelphiaweekly.com/articles/17909/columns--the-floating-world

Freshly Molted

Freshly Molted The sprites that April Fool's Day of 1983. I do not remember much, but their magical embrace was profound. In 1983, it all happened. A life that changed me forever, also changed the way I see things forever, and the way people will have seen me forever. That cold day, at least they tell me, trying to scream but no one could hear me. How I got there I don’t know, but I have an idea. I was the brightest in the family, and there could have been some jealousy, but one thing is for sure, someone had to see me scream. I don’t remember a thing, accept the story they told me. All I know is that where it happened, was covered up. Ice cold it was. A time where my body shut down and later and eventually would molt me into somebody different, would be the time that this whole life went down. Along with the life, went the dreams, the realities, the gains, and the losses, and I still, don’t remember. I was in that pool for 20 minutes. It took 20 minutes for the ambulance to get to that house in Snyder, NY. My parents and brother are the only ones that know what happened that day, and until this day cannot give me any detail as to what happened. “We don’t know” they say! Help me out, I can’t breath, water is going down my throat, I am breathing in ice cold water, I am loosing my feeling, the pain, the anguish, why is this happening to me?They told me that the rescue squad when they came, my body was not moving and I suffered heart failure. That’s what it was: A drowning incident. Back then, people who were under water for that long were pronounced clinically dead. I was dead at the scene. I was five-years-old when I fell into an ice-covered pool. It happened while I was waiting for my father at my place of residence, which was 190 Burbank Drive, Buffalo, New York. Some people are shocked that I would even want recall this traumatic event in my life or would want to remember it. However, it is an essential element that made me the person I am today. I am still searching for the truth of what happened to me on that day and may never find out. The event took place on Good Friday. Go figure! A Jew who dies on Good Friday! Isn’t that like a Christian thing or something? I do not actually recall going to the pool, nor do I recall falling into that ice pit. One thing was for certain; a five-year-old was under water for twenty minutes. I still do not know how I got through. Would you? Let us think about it, twenty minutes under not water but frozen water at the top. It must have been burning my body. If one was under ice for twenty minutes, it would be a miracle that they would be alive to talk about it. I am. They must have rescued me. I could just imagine the first person that discovered me. They told me that it was my older brother Perry, who was thirteen at the time. My question is how he could have rescued me when he was inside the house, as they also told me. Just imagine what was going through his mind and what he saw. A young boy trapped under ice. A thirteen- year-old boy seeing his baby brother under ice would have probably been a traumatic event within it. Hmmm! It was traumatic. He was out there with me. After all, my IQ was much higher than his. We are talking in the MENSA arena. But forget all of that, as I have forgotten most. I was flat-lined, but for sure, all of the life out of me was given to the ambulance crew who rescued me. They tell me that the call was made and an emergency rescue was on the way. I was in that pool for 20 minutes. It took 20 minutes for the ambulance to get to that house in Snyder, NY. Who made that call? Is it making sense yet? Get your logical mind out. So now I am in a comatose state. I was virtually dead for three to four months. There was no movement, no growth, no energy and little life. How is that for a sixth birthday? One thing I know for sure is while there were no balloons, friends, horns, hats or pin-the-tail-on-the-donkey; there were prizes at this party. These prizes were the numbers of questions given to whether they would pull the plug on me or not. It was there. My father and brother wanted the plug pulled. If it weren't for my mom in her saying "NO," I would not be alive! This is before she knew what really happened. So, Adonai, my Higher Authority, my G-d, through another, gave me a birthday present that was the biggest possible, the gift of Life. The plug stayed in and I woke up four months after that first day of April. Did you ever feel like the Guy or Girl or Transgender upstairs, was playing tricks on you! It was totally appropriate on this day as I awoke out of my coma on a day where I ended up the fool. True? Let’s rethink that later. It ended up to be a few days after my sixth birthday. Therefore, that was my real present. I was destined to live and only fooled to think that I would not live. In fact, because of my lack of focus due to the accident, I suffered through an incredible life. Who wanted to play with me? Who wanted to give me attention? Who wanted to talk with me?Who wanted to help me gets rehabilitated? Why my mom said to leave me on life support does not support her one bit. Everyone in my family, throughout my life, let me to be. It was being teased in school so bad that I cried all the time. I tried seeking attention in ways that people could recognize me and in ways that would get me in trouble. There were two car accidents after which still today, cause me foot, ankle, knee, back, and neck pain. No one will join me in this lonely road, eating out of cans because my rich family never left me things to eat. Not rich in the sense of goodness, but finances, they are millionaires. When are you going to give me my life back, God? So what happens to a boy who falls in the pool and now has anoxic encephalopathy? An innocent child you would think was destined after that point of his life to have it easy, a life of extravagance, a life of luxury, a life of comfort. Wrong answer! Sometimes I wonder if even coming out of that coma was even a good thing. While I had my family, there were many severe issues. No! It wasn't enough that I had to regain all of my motor skills back from walking to talking and breathing to thinking, then work on this for the rest of my life all by myself. My family was physically there, that’s all I have to say about that. I am still working on my life to put it back together. I had a life of suffering and sadness that I would wish on no one because I love everyone and only wish for peace, the love and peace I never got as a child. Because of my slow speech and lack of ability to focus and remember, make judgments, think quickly, move my hands, and even try to remember what it was like to feel certain parts of my body that I can’t feel today, I was ignored a lot of the time. There was no warmth in my house. It was as if I wasn’t even there. When I would make small accomplishments in school and wanted to share them with my family, they were too embarrassed to even come. They blamed it on the fact that they were too busy for me. I had to beg them. Am I used to it? Sure. Nevertheless, it really does make me sad inside, because it was not my fault I fell in the pool. I was too smart. Why would I even venture out of the house on this cold day? Did someone have an anger streak and… My parents told me that there was a divorce that and it tore me apart. Why? Not because of a divorce, but because I was told I was the cause of it. Schooling seemed at times like the fires of Hell. Not just from an academic standpoint and graduating when I was twenty-one, and having my family even embarrass me more because to them I was worthless, lazy, and would never make anything out of myself. Jewish families like mine tend to only see success through their eyes. From a social standpoint, when all my life I have been called retarded, nerd, idiot, and simply worse than words, was the isolation dimension. Sitting by myself at the lunch table, was terrible, because I loved people and they didn’t like me. Why?Why? Why? For all my schooling after that I was in special education in one way or another. I was classified as mentally retarded, all because of one accident. The sad part about this is that before the accident, my mom told me that I was incredibly intelligent with an IQ higher than 140. I lost a lot of that academic and intellectual ability from the lack of oxygen to the brain and stats tell me that I may only live until the time I am 37. So yes, it really kills me. Remember! Those special education classes were not fun nor did I learn much in them. It was all a waste of time. We played games. Yea…this really helped me out. I had teachers that would tell me, "Yea Yeremiah, you are doing a good job," when I really was not. I would come home and hear my mom nag that I needed to do better. What? Do better at playing games. Talk about a mixed signal. It ended up that the teachers would be lying to me so that they would not "hurt my feelings," and then tell my parents their assessment. My parents called me lazy. I was not lazy; I just could not do it, and was impatient and stopped trying. They began focusing on everyone else accept me. Why mommy and daddy and big brother, did you all let this happen? It seemed like I could not do many things right, if anything at all. And to top off my humiliation, graduating at 21 made them take me to Friendly Ice Cream for my graduation party, because that’s were little kids went. And with this anoxia, I am still developmentally eleven years of age. So, true, I still see things much of the time as a child. This is why at one point in my life, I just gave up and failed out of my academics. However, for the schools reputation, they let me do things that would never help me in the future: Life skills. But God would send someone to me, I know it, I just know it. Sometimes they say that when you are in a coma, your spirit goes to the heavens and you even speak with the One. But, to me, I guess the angel of G-d took their finger and placed it on my philtrum so that I would forget every moment, even upon getting and coming to Earth. As far as the social aspect of my academia, I was picked on, ridiculed and teased because I was different. Why did they pick on me? Why are children so cruel? So I guess the real question is, are children the only ones that are cruel and what is cruelty? Cruelty is the action that imposes unhappiness onto the object of the action. No! Children are not the only ones that can be cruel. They learn to be cruel from adults. Children see everything. In a sense they are like little gods, who are so innocent. That is, until they grow up and some, not all, lose their innocence and become adults. They are just "so busy" that they cannot be nice. However hard they try, they just can't accept those who are different from them. My parents and family were always too busy for me. A perfect example of this is those people that as you get older call themselves friends and never call you back or let you eat at a separate table during your lunch break because of disassociation. That is cruel. In my opinion, it is crueler than destroying the physical life of someone. Fame? Do I want it? Did I want it? Oh yea let everyone look at the retard on TV. Of course they later did a story on me. Or better yet, let everyone feel sorry for me. I ended up on the news twice. Did that do anything for me? No. Did it make me feel better? No. So why did it happen? Why do people want to see what is happening? Just for curiosity. That is all. Did I change from the publicity? No. Have I changed since then? Yes, and I continue to change. As I got older, I met a few people who did actually give a crap about me. I do believe that there are people in my life that I am closest with. I also love the people who saved me who will never remember that incident. So who were the people to help me? It was not, until I reluctantly moved to New Jersey from Buffalo, New York, where I grew up with all of those “SPED” classes, that my whole educational future changed. While I was a teenager, I met an awesome and magnificent teacher, by the name of Kris Selwood, who gave me an educational push. It gave me the strength to break free of the chains that special education had on me. In other words, she helped me almost virtually get out of special education classes. That felt like a huge weight was lifted off of my shoulders. I am not in special education anymore, yippee! However, does that mean that I do not have problems? Am I what society would call “normal”?Well, hell, I think I am normal, but one thing that is my greatest weakness is I refuse to see the truth and continue to defend those who hurt me and lie to me. I don’t know why. But, damn it, No! In society’s eyes, I am not normal. Kris Selwood, broke the chains of special education. Later I was introduced to another education. I was introduced to Jesus. While I have problems understanding the whole Jesus and God thing, I do understand that Jesus and I were probably the same type of person and went through a lot of the same struggles. The saddest thing was that Baby Jesus, was born into a world where people would not accept Him. People isolated the Nazarene to the point of killing him because he was different, even after he gave himself to people in the best way he could while he was living. This is why I feel similar to him. The major struggle in my life now is getting people to realize with patience and nonempty sentiments, I am just as normal as they are. While Kris and some friends may think differently, the fact of the matter is that I have many difficulties that will prohibit me from becoming some big business executive or ever living alone. I would have become a CEO and had my own apartment if I did not fall into the pool. As for now though, like Christ, I will never be rich. I may always be a person who bags at the front of a register checkout, I may always be a person who washes dishes, I may always be the person people tend to forget about, I may even just volunteer for the rest of my life. Nevertheless, one thing is for certain. I will never forget the people who had patience with me and gave me a chance for the desire to make possible what is impossible. One day, I met this guy, his name was Daniel. He was really nice to me and for the first time, paid attention to me. I saw him at a Gay-American BBQ. He was talking to someone, I guess trying to hook up, but when he saw me, he stopped everything he was doing and asked me, “Are you my cousin? You look like my cousin or something.” I never met this guy in my life. I think he wanted to date me and we even became boyfriends for a short while. Then he said to me, “I want to see you as close to independence as possible.” I think he knew that there was an issue. So he asked me. The tragedy here is that I didn’t know I was disabled. I was lazy, stupid, dumb, worthless, couldn’t hold a job, and couldn’t get one. Instead of letting me go, he told me that he thought I needed a friend more than a boyfriend. So, with his assistance, he took me through a process that not even he was sure of but I believe that the Spirit was over him and guided him to get me to where I am today. From a clinic, to getting food stamps, to getting county assistance, to getting turned down from SSDI, he encouraged me to make it happen. I won. I really won this time. I have received disability so I can get assistance from the state. I get food stamps now, that my parents would say, “That’s for the niggers.” Please forgive them as I have. It is only now that I know that I could have had assistance all my life but everyone wanted to believe that I was okay and was too afraid to admit the truth about my challenges. Most of this stemmed from embarrassment. Do you want a retard for a son? Now, I am finding out that I still have so many challenges, but I am no longer afraid to be humble. That’s what I really learned. I am okay with who I am and who I am, is a person who is dependent for now. Even though I will need someone in my life to move me forward, I am more independent now than I ever had been. I may always be dependent, in the state’s eyes, and in your eyes, and while a miracle is unlikely, I think I will have the help of the state, county, Daniel, and those who are my friends even though deep down inside, I really don’t have any besides Daniel. He keeps telling me to get friends but I don’t know how. Together we continue to work on this. As he tells me, “You, yourself, with the help of Adonai, will always be your backbone.” I am now singing in a choir (it’s a GLBTQQS one or something like that) but it’s a nice one. I volunteer for the AIDS Fund, and the Sapphire fund, and Daniel even got me a person to keep me company during the day as now I have Liberty Resources, an agency that helps those with disabilities. So, I am doing much better. In fact, I would get really frustrated at times trying to do things and that stopped a little as the medication I am on helps me control my negative energy. I even take care of hermit crabs with Daniel. The best part about them is they remind me of my accident when they freshly molt. Volunteering keeps me busy now. I prefer to volunteer at an organization dealing with the HIV/AIDS crisis. I guess I like volunteering there because it help an impaired group of people out. Nevertheless I enjoy it, and that’s all that matters. Daniel and I were making up the Consumer Workforce Council or CWC to form a Union for Personal Healthcare Workers such as Daniel, however in order to do this all consumers must be a Union, in order to give their Advocates right. The rights they will have would be healthcare and a job which has any other benefits the same as any other job. We worked on this since the summer of 2008 to the summer of 2009. I write a lot more now then I have before. I guess that’s because I have so many ideas that I want to express and have trouble getting them out of my mouth so the pen will have to suffice. Also the fact that I don’t work now I can sit and contemplate my ideas more and express them in full detail or try to. Now my friend, Daniel and I volunteer. We volunteered at Philadelphia FIGHT, an organization that teaches people to deal with their immunodeficiency disease. I had a huge episode and almost died. Thankfully I went to Mayor Clinic in Rochester, Minnosota, where I received life-saving treatment. Now my doctor works with the doctors there to best treat my advancing syndrome. Now I volunteer for Manna, which makes food for people who suffer from immunity-defiency diseases. I found throughout my life, you have to deal with your past and learn from it, in order to truly move on. After I finished volunteering at Manna, I had my lack of sleep to deal with. It took Dan a few months but he finally got a doctor. While this was happening we hired a back-up person, Jonathan Giddings to alleviate some of Dans responsiblties. After Jonathan left Bruce was hired. We started a science fiction connections group at Liberty Community Connections. This group shows a pilot of a science fiction series of the past or present. We go to Sci fi conventions as well. Our main goal is two fold. One we want more disabled actors on the big screen, and the other is to raise awareness of disabilities in general. I went on my first fun run and raised $350 in two days or so. We went down to Washington DC and I walked around a loop 7 times. It was fun. My brother Shlomi died the night before, so it was sponsored to him. Half the money went to national ADAPT and the other half went to Liberty Community Connections. I run a scifi group at Liberty Resources and we meet monthly. We watch a sci fi show or movie and discuss how it relates to disabilty rights. We go to movies as well as conventions and parades. I have a lot of Facebook pages. I write stories on there and blogger as well. And the story continues….