The Power of J.

J. sat on the edge of the wooden wall when I entered the building this morning. It was snowing out and had been for hours. Not cold, mind you, but wet and snowy. It was too early to open the office doors so I had to let him sit there for another 30 minutes. Consequences...

J. was wearing the same baggy flannel pajama bottoms he always wore lately and a pair of fairly new, bright white sneakers. His parka was warm but old and dirty. His hair was just as dishevelled and his eyes had that always wild look. At 7:30 I opened the door and he blew past me to use the men's room.

J. has schizophrenia, paranoid type. He lives in a tiny apartment with a room mate he barely knows. Someone put there for convenience sake and to help him pay the rent. The room mate is also diagnosed with schizophrenia and he drinks. J. comes in everyday to get his daily medications. Most days he's quiet and kind but sometimes he is surly and angry. On those days he lets us know he does not wish to speak to anyone and, also on those days, his ability to take his medications is hit or miss. Sometimes he throw them away. On the dark days, J. is scary at first glance. He appears almost larger than he actually is, his dark eyes glaring and his mood so angry that one automatically knows to step back and let him be. He has been known to raise his voice at these times, and swear, and sometimes knock over a chair or two. At his home, he screams to the voices in his head and punched holes in the walls. He's been evicted many times over. He may be on his last landlord right now. Some people see his use of this intimidation as a manipulative behavior to get what he wants. I see it as a survival mechanism he has learned throughout his troubled life.

Years of homelessness has taught him to be street smart and to find safety in the quiet of the night. Even though he now has a place to live he will still often wake up in the wee hours and simply walk the streets of Kenosha. He feels at home there. He has stolen to get by. His most recent incident was opening an unlocked car door to try to get a radio. It was something to be sold so he could buy some beer...or food. Because when you are the poorest of the poor stealing to buy beer or food is always a possibility. One thing he would never do is hurt someone. Holes in walls - yes. Holes in people - no. In spite of his dark side, I have seen him do incredible acts of kindness.

He had a friend who had cancer. When he heard that his friend's insurance would no longer pay for his nutritional supplements he came to me to ask if there was anything I could do to help him. He knew his friend was dying and needed this nutrition. Kindness, in spite of his mental illness.

Occasionally, he drinks. When that happns he is savvy enough (or foolish enough) to go off his psychiatric medications. The combination of psych meds and alcohol can be deadly and he doesn't want to die. So he stops taking the meds and drinks for a few days which sends him into a downward spiral and deeper into his own head. He doesn't want to speak to anyone during these times. Yet, he still comes around. Still touching base to make sure he is safe and grounded in his own way. Eventually, he stops drinking and starts taking his meds again and we'll have a time of the good and happy J.

We have an annual holiday party here. I have a great photo of J. singing carols with the karaoke machine. That's something no one thought we'd ever see. I admire J. greatly. The struggles this man has had would lay out most of us. Living so far below the poverty level would shut the best of us down. We would lose our hope. And while I can't say that J. is full of hope I can say that he is a remarkable testament to the human spirit because in spite of his illness, his poverty, his addictions, his alienation, the stigma, the smell, the filth, the holes in the wall, the evictions, and the medications - he goes on. He goes on and still has the heart to look out for someone else once in awhile. We should all be more  like him.

Punching through...

There is a young man I work with who struggles everyday to reconcile the fact that he has a mental illness. He doesn't want it. Who would? He watches other people thinking they are "normal" and asks why he cannot be like them. I struggle each day trying to get him to see and understand that he is like them. We are they. They are us.

I give shoddy examples of how people live with chronic illnesses all the time - diabetes, painful arthritis, and others - and he answers, "Yes, but people don't think you're crazy when you have arthritis." And he's right.

He wonders how he will ever have a serious relationship with anyone because, though he wants that more than anything, his illness makes him paranoid and doubtful of everyone. Even those who love him. So he stays alone, purposefully isolating himself from others which, he says, makes him look even "crazier".

He wants a job but his illness has caused him to do things in the past that have tarnished his record so he cannot find an employer willing or able to take the time to give him a chance. He wants friendships but pulls away after a while because they become too taxing to maintain. The daily inner dialogue reassuring himself that his friends are not out to get him or harm him is exhausting.

He doesn't like his medications. Who would? There is no magic pill that makes the illness go away. Only pills that make the illness bearable and that is to varying degrees. The pills come with side affects - weight gain, hair loss, slow or slurred speech, sleeplessness, or too much sleep, no motivation, low libido, and sometimes Tardive Dyskonesia - involuntary muscle movements in the limbs or face that cannot be reversed, only masked by more pills.

He doesn't like not taking his pill though he hates them. Not taking them means the illness wins. It takes over. No one is to be trusted. No thought is real. No sound is true. Everyone, everywhere is out to get him. So he strikes back. He becomes "crazy".

How do you reach someone to let them know that they can have some quality of life once they can target their triggers and understand their symptoms? Even if that quality of life is altered in someway? How can I show a young man, with his whole life ahead of him, that he can handle this, that he is not crazy, that he is worth the fight and I am willing to fight with him? It's a lot to think about.

Damaged goods...

I overheard one of our clients refer to himself as "Damaged goods" because he has a mental illness. I can't tell you how sad that made me.

Think of yourself on an average day...
Maybe you get up, get some breakfast, get the kids off to school, get ready for work, take on whatever the work day brings you, a yelling boss, a disgruntled customer, a co-worker in a bad mood. You have expectations put on you. Whatever it is you do, you have to produce. Then you go home. You may have to stop and pick up a gallon of milk or a loaf of bread. Then you pick up your kids and the teacher tells you how their day went. You get home, make dinner, clean up. Watch some tv, maybe? Pay some bills?

Now think of yourself on an average day with schizophrenia...and your voices...
Maybe you get up ("you lazy son of a bitch, you're worthless") get some breakfast ("you don't deserve to eat, you piece of crap!") get the kids off to school ("they hate you, they've always hated you, you're a piece of shit!") get ready for work ("failure!! you're a screw up!! you can't do anything!!") take on whatever the work day brings you ("how can you possibly think you can do this!! you're an idiot!! STUPID ASS!!") a yelling boss ("worthless!! no one needs you here!!! IMBECILE!!!") a disgruntled customer ("I told you you would fail, ASS!! You smell, you're stupid, they'd be better off without you, you should just die!!!") a co-worker in a bad mood (EVERYONE HATES YOU, JUST DIE!!!"). You have expectations put on you. Whatever it is you do, you have to produce. ("You should just kill yourself. Go ahead. Everyone would be better off without you!!")

You get the picture. Try recording your family or friends shouting those things on a loop. Then put the ear buds in your ears and go to the grocery store and try to buy a gallon of milk. It's almost impossible to think. It can even effect your ability to walk straight or go up a single stair.

My point is this, everyday I see people living with mental illness. They're trying to maintain a job, keep their family together, or just have one friend they can trust. They have to maneuver through each day hearing or seeing things only they can see or hear. They have to take medications that add weight, make them impotent, make them drowsy, make their food taste bad, decreases their sex drive, their appetite or increases those thing which has a whole different effect on their lives. Their families don't always understand it and want them to "snap out of it". They often choose to not have friends or socialize because it's too difficult. They persevere, fail, bounce back and try again...and again... and again.

I don't see them as damaged goods. I see them as champions. I know I couldn't do it. Could you?

Inside A Darkened Mind

SCHIZOPHRENIA
noun
"any of several psychotic disorders characterized by distortions of reality and disturbances of thought and language and withdrawal from social contact"

I work for a not-for-profit human service agency and in the course of my work day I meet and talk to people with many personal roadblocks - things that I can't imagine having to live with on a daily basis. One of the people I have met is a woman in her mid-40's or early 50's named Kathy. She has schizophrenia and, though she consistently takes the prescribed medication, her illness is such that it barely responds. I've known her for 12 years and she never gets any better. Every morning when I arrive to work she is there waiting for the nurse to arrive to get her morning meds. She waits for over two hours every morning. She sits at the side of our building rocking back and forth and talking to the voices only she can hear. Her personal hygiene is horrible. She's dirty and has a pronounced body odor though she is fully capable of showering and taking care of herself. Her illness makes her afraid of water. I speak to her every day and each time I am struck with how "normal" she can sound. I also see other people walk past her either ignoring her or looking at her with disgust.

Kathy started out the same way we all did. A normal birth to normal parents. Somewhere in her early life, her brain become cross wired. She started hearing voices telling her to do things that she normally wouldn't which led to her incarceration and several years in prison. The thing that strikes me when I talk to her is that she is always positive. She is happy when she sees me. She takes joy in what she might be doing on any given day - shopping, watching a movie, seeing a friend. She delights in those same things we all find happiness in. It's evident when I speak to her that she is struggling to hear me over what is going on in her head. She has taught herself to shut them out if someone in the real world is speaking to her. Despite her appearance and blatant symptoms, she is nice and likable person.

It bothers me that people don't know this about her, that there are co-workers at the agency that complain that she is there every morning. Her presence disturbs them. I think I know why. I think it's because that we all feel, somewhere inside, that Kathy could be any one of us. Then we would be that person, rocking back and forth, talking to inner demons, who gets ignored and spat upon. To me, Kathy is the face of who we all could be given other circumstances. She scares us. That in itself makes us uncomfortable because we know that we should respond to her in a more decent humane way. She makes us see ourselves and we don't like what we see.