Monday, March 29, 2010

Taking on a Burden

I read this on Pam Wagner's blog;

I received this comment a few days ago, and I wonder if anyone — somebody, please? — has a response for the person who wrote it. This wrenching question seems to me to embody one of the most painful and awful choices that siblings and even parents of people with severe mental illness may sometimes feel they have to make in order to save their own lives and their own sanity….Or not. What do people think?

“I have a schizophrenic brother, he became ill at 27,
and it was a terrible time. My brother is now 54 years old, my parents have long since died. I have no
relatives that care about him or me. I have to tell
someone I don’t know where my brother is, he was in a
group home and was told he could no longer live there
this home was horrifying. I tried all my life to help
my brother, I had no life, I finally just had to let
him go, I pray god is watching over him. Do you think
this makes me a horrible person?

This is what I wrote;

The person writing to Pam described themselves as having “no life at all”. This sounds depressing and sad. They sound like the quality of their life is so bad, that they couldn’t take on the burden of seeing to the quality of their brother’s life.

I see in my family that my sister is weakened by a slight touch of the schizoaffective disorder that I have, and perhaps my brother as well. But I am also confident that they would not desert me, as fragile as they might be. This gives me strength and confidence to live, because I am dependent on the kindness of others, be it the government, or my husband, or my parents, or my siblings. I cannot provide a roof over my head or feed myself. I cannot work for a living. If it weren’t for charity from the people who love me, I would be homeless.

I don’t think this person is horrible, I think that they are in pain, and they have burdened themselves with even more pain by turning their back on their brother. One of the ways to have a fulfilling life is to do charity, is to be giving, and to go the distance for someone other than yourself. How proud this person would be if they had saved their brother! Suddenly, they would indeed “have a life”. They would have been a hero.

This writer has traded their brother for a large helping of guilt. I don’t intend to increase or decrease the feeling of that guilt. But I know that if I had my brother’s life in my hands, I would not trust him to God, I would do what ever I could to tend to his welfare. My meager resources would be used, my emotions might be stretched, my patience would be tested, and yes, the life of another human being can be a heavy load, but I would take that load and offer if it were the only thing I had, the living room sofa! I know that social services would come to my rescue, although it may take a long time for them to be mobilized. I know a schizophrenic in my area that had to wait two years for a government funded apartment. But the apartment eventually came, and now he is safe and secure.

Doing what is right can be hard. Following your heart can lead you into a wilderness that is unforeseen and perhaps, terrifying. But I know my heart, and it would never tell me to turn my back on either my brother or sister. In fantasizing about helping them, I can only believe the final result would be satisfaction. And knowledge that the heart has won.

Most of what people wrote to respond said things that absolved the writer of their responsibility for the brother. I saw a refrain to say nothing negative to the writer. I guess nobody wanted to kick the dog when it was down.

I must confess, I have both been the object of humbling charity by a poor black family, and homeless myself. Yes, twice after the onset of my illness I was kicked out of my mother's home because my behavior "made her feel crazy". She said, "go live in the road like a pig". She absolutely felt like she was saving herself by sending me out on the street. I know what it is like for someone to say "you threaten my sanity".

The first time this happened I had a car and I went to a park and slept in my car. I was worried about the police, I couldn't sleep in the uncomfortable backseat of the car, and there was no bathroom. My sister (who was away in college) found out about this and called a friend, who had an ex-boyfriend, who had a one room studio apartment. He let a total stranger come in and sleep on his floor. He had virtually no furniture, being very poor himself. He was a cashier at a local Wendy's fast food restaurant.

It was such a relief to sleep indoors, on that floor. Oh, I was so grateful! This young man did not care that I was crazy. He was kind to me. He said that the psychosis I was experiencing was very similar to what he experienced when he dropped acid. He was in awe that I needed no chemicals to have an altered view of reality. On the day that the town left big furniture out to be picked up by the garbageman, we went around and picked up the thrown out furniture for ourselves. Then I had an old sofa to sleep on. He never asked me for rent, he never made a sexual move on me, and eventually I was reconciled with my mother and I went back to living with her.

The second time my mother threw me out I ended up in the local YWCA in a room that was funded specifically for homeless people. At first I had a roommate who was fanatically reading the bible (she was a nice lady) but eventually, because I was taking classes in college, the YWCA gave me a room all of my own. I needed that room to keep my computer in and to do my homework in. It was hard being in the Y because I was white and shy and most of the girls were Black and Hispanic and very street wise. They talked all the time, were very social and dramatic, but I said little or nothing. I remember cooking food and someone else who was using the stove saying very loudly, "I don't want no white girl breathing on my food". It was reverse racism. I can remember being shocked. But then I did this a few days later. I had been given the gift of some cookies that were very fancy, they were dipped in chocolate. I offered her, and the other girls, some of the cookies. They were so tempting, she took several. And as she did, she looked at me like I was a wild animal and would claw her hand that held the cookies. But I thought, "score one for race relations!"

The kindness that the poor black family did for me sticks in my memory as well. I was a senior in high school and my father had custody of me. This was before the onset of my illness. The relationship I had with my father was very unhappy, he had a temper and was frequently angry at me. It was very stressful living with him. My friend from school, a black girl who was very sweet, offered me an out to come live with her family. So as not to injure my father's pride, we arrived at a "story" that explained my living with her other than trying to escape from my father. I do remember seeing a therapist at the time, and the therapist told me that she would have gone to the state to have me removed from my father's home, except that I was leaving for college in a short time, it was merely a matter of a few months and I would be "free".

The story I told my father was mostly true. My black friend, whose name was Betty, had a father who had turned schizophrenic while she was in high school. He was being released from the hospital but had a court order to stay away from the family home. The hospital he was being released from was for the criminally insane. He had tried to kill his wife, and as she had eluded him, he satisfied himself with killing the family dog with a kitchen knife. Betty was afraid to sleep in her home for fear of her father coming home, and, here is the story we told my father "I was to sleep in her room and protect her". I laugh as I write this, but my father bought it.

Betty's mother gave me the largest bedroom in the humble home. Betty slept with her sister, the brother slept in the basement, and the mother slept in a tiny room off of the kitchen. As I realize now, but not then, the mother had been using the large bedroom but she emptied it of her clothing and moved into the small room so that I could have that large room.

There was another thing that Betty's mother did for me that was so kind. She worked as a nurse, an odd shift, maybe two shifts, and was asleep when I came home most evenings from my part-time job. All I can remember her doing is working and sleeping. But always, on the stove in the evening was pot with something hot simmering in it for me to eat. Everyone else had eaten, I can remember late at night the house being so quiet, but there it was on the stove, food just for me.

My father eventually gave me money to give to Betty's mother. I can remember her protesting, not wanting to take it. I don't know whether or not I finally convinced her to take it. I hope she did.

My husband has a story of an angel of mercy. He had had a nervous breakdown and was living in a tent in the woods. He had with him the family dog. It was a big dog, and when it was left alone it had trouble with anxiety. One day my husband returned to his tent in the woods when he found that his dog had, in a fit of anxiety, shredded the fabric of his tent and his sleeping bag. It was already a low point in my husband's life, he had several cans of beans left to eat and no money.

But a friend of his loaned him $400. This was enough to buy a used camper and put a down payment on a spot in a campsite. Suddenly he had the luxury of a roof over his head and a place where he could live free from fear of discovery, and free from worry that the police would move or arrest him. The friend who loaned him the money also got him a part-time job at a wealthy lady's home doing garden work and housework for her. My husband's mind was really weak and all he could do was the part-time work, it took everything out of him. But eventually his mind healed and he was able to go on and get a full-time job at a social clubhouse for the mentally ill as grounds keeper and maintenance man. That was where he met me.

My husband and I am unique because we both have been saved from homelessness. I have to say that once you experience homelessness your view point changes. Suddenly having a car that runs, or an apartment to call your own feels like the sweetest blessing. Once everything has been taken away from you, you always in the back of your mind know that catastrophe can strike, and the street isn't so far away.

And the people who do live on the street? Well, you have a bit more compassion for them. My husband likes to talk to the homeless men who hang out at our local library. He remembers their names and calls them by their names.

I see that I made a mistake in reading the original version of the letter. The writer says that they "had no life" in reference to how much the brother was bleeding them dry, assuming, emotionally. I can't understand how helping a mentally ill person can reduce you to "having no life". I would have to say that if drugs were involved, that would harden my heart quite a bit, but there are no details. I wonder, was the brother calling his sister too much? Did that lead her to "have no life"? Was the brother in and out of the hospital and not taking his medication? Why must your life be negatively impacted by the mental illness of a relative? Because they are acting bizarre? I know my mother was mighty upset when I didn't shower for a month. My mother also has to witness me walking around the house naked because of a psychotic delusion that told me to do this. What was her reaction to that? She pulled down all the shades so that the neighbors couldn't see.

Was the writer of the letter intimately involved with her brother's care and then one day said "enough is enough - I'm wiping my hands clean of the whole problem". The writer of the letter puts all the emphasis of her losing contact with her brother, and not helping him, on the weight of the phrase "I had no life". And upon this phrase, people rush to sympathize with her. What, did she give up husband and children and friends to help her brother? You can be surrounded by community, and uplifted by community, but somehow I don't think this person took that route.

I know that my mother was weak for kicking me out of her house and telling me to go live in the streets. I know that if I didn't pay her rent right now she would kick me out of the house and tell me to go live in the streets again. That's the type of person she is. Odd thing is, probably, in her old age, it will be me who takes care of her. Just last week my mother called me, having a panic attack, fearing that she was having a heart attack. I stayed on the phone with her for two hours. I consider it an honor to have helped her, not an annoyance. And I was ready to pack my bags and be down at her house to stay overnight should she feel the need for company or need me to take her to the emergency room, to establish for certain, that she had not had a heart attack.

My husband says that in primitive society the mentally ill person was simply killed. If you were a burden on the resources of the society you were killed. If you were perceived as being not right in the head your life wasn't worth much. In the bible it said that Jesus saved several people who were "demon possessed" from a crowd who were ready to stone them to death. Probably these demon possessed were mentally ill.

In our more civilized society there is some sympathy for the mentally ill, but a great deal of sympathy as well for the caretakers of the mentally ill. NAMI is strong, and NAMI is for the people who care for the mentally ill, not particularly for the mentally ill themselves. I wrote in the last post the opinion of a man who did not think my husband should date me because I am mentally ill. His attitude was very much, "If you get involved with her she will ruin your life."

But my husband says that I'm the best thing that ever happened to him. And he takes very good care of me. And I do happen to know, that because he takes such good care of me, he considers himself, in his own mind, to be a hero.

Sickness does not have to be a drain and an heinous thing. There are heroes out there. And I think that in their heart, a hero knows when they have acted heroically. And it lifts them up.

1 comment:

  1. Hi Karen,

    Thanks for writing. I have to say that financially I have always been taken care of by my family and so I have never been homeless. A great blessing for me indeed, but so many are not so fortunate as I have been and I know it. To be homeless is a terrible thing in itself, but to be mentally ill and homeless strikes me as a double injustice.

    I lived with an abusive alcoholic for six years and I became deeply co-dependent in the process. That is, my world revolved around him and his problems to such an extent that I ignored my own basic needs. I became ruled by fear and low self esteem and even though I tried repeatedly to leave him, mostly I couldn't. It was only after praying for release for about a year that I finally had the courage (and the help of my family, which many women do not have) to leave him for good.

    His story went from bad to intolerable as he became also addicted to heroin, got into a car accident and became paraplegic. I returned to his side as a friend for about 5 months until he began to be abusive towards me again and then I shut him out once more. Looking back I think I should have given him one more chance just after I left him the first time because he was sincerely trying to embrace recovery, but I got hardened and detached by the abuse. I literally felt as if my soul was dying inside of me and that it was either me or him and I chose myself.

    I understand that living with someone who is abusive is very different from living with someone who is just mentally ill and I think if my boyfriend had not been abusive towards me, I would have eventually married him. There was a great deal of good in him even so and I would have been willing to work the program with him. But this idea of being codependent is like being an addict too and sometimes the only thing you can do if the person you are emotionally addicted to is not seeking help is to abstain from the relationship, at least for a while till you get help for yourself and become stronger.

    The way you present your mother she doesn't sound codependent, but just very intolerant. But I believe many of the family members who take on the responsibility of caring for their mentally ill family members do become codependent to the point where they don't have much of a life of their own. They start out well and become mentally ill themselves. In such a case life quickly becomes unmanageable for both parties. This mutual dependency is far from being heroic. What this means is that if a family member does decide to take on the responsibility of caring for their mentally ill family member, they must have outside help in the form of therapy and/ or support groups and preferably some financial help as well in the form of affordable insurance.

    You can understand how nurses get burned out at their jobs. Well, just imagine being a nurse nearly 24/7 and perhaps you can understand what some caretakers go through. Which is another reason why I believe in the recovery model, because with that model to follow mentally ill people can be encouraged to strive to get better, again through medication compliance, therapy, support groups, vocational training, creative outlets, volunteer work or part time work. It's a gradual process, but the more basic responsibilities a person with mental illness can take on, the less of a burden they become not only to their families, but to themselves as well.

    Karen, I've practically written a blog entry to respond to your blog entry! You are just so bright and articulate and though I'm coming from a different perspective than you are, I think it is good for both of us to reach out and express our ideas.



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