Kathleen

Heaven forbid shows on TV convey mental illness as something that’s not violent or ludicrous. My brother suffered from schizophrenia for most of his adult life. He was neither violent nor ludicrous.

Michael’s diagnosis was manic depression with schizoaffective disorder, but basically, schizophrenia. He owned his mental illness according to the priest who knew him when he was getting his Master’s degree in neuropsychology at USF fifteen years ago. He was deeply religious in a Catholic way, and was always seeking to understand psychology, his illness and the connection with his religion. He was a gentle man, tormented by voices and delusions that would come to rule his life. I wouldn’t wish this on my worst enemy.

Still, despite all he went through, he was determined to remain independent and as close to his family as he was able.

When he was young, Michael was a smart, sensitive boy…a pacifist at heart. He didn’t believe in violence or hitting back when he was bullied by his classmates for being different or “too smart” even though he was strong enough to do so. As he grew up, he became more athletic and a great strategist when it came to football and basketball. He was the captain of the chess team so achieving a stalemate when playing against him gives me bragging rights, because that’s the last time that ever happened. My sister said she never played chess so she gives me a lot of credit because she knows how smart he was. Then there was the time that I had to do a science project in grade school. I decided I wanted to build an electric window shade. Let’s just say that I was more of an idea person and he tended more toward the execution of ideas. He was telling me all about “reversing the polarity” which went right over my head. I presented the project.

They knew it wasn’t mine.

Starting in his early twenties, he began to exhibit symptoms. He went off to look for Edgar Cayce, some sort of spiritualist guy who supposedly jumped off a cliff and lived. I could be wrong. Michael’s Catholic faith won out and he decided that Edgar wasn’t for him. He showed up at my grandparents house all the way in New York, disheveled and depressed. When he returned back to the Midwest, he finished college and made it into grad school, which means he must have had a darned good GRE score despite the the roller coaster ride of his illness. He experimented with drugs, unknowingly trying to find a solution for what was starting to happen to him. At one point, he described a sensation of “getting hit by lightning”. Perhaps that was the beginning of the long, torturous road ahead.

It all seemed to come together when he, my father and I were all living together in a small condo together. I had just come home from college, depressed, my father was depressed, and my brother was literally insane. I remember him stretched out on the kitchen floor, every muscle in his body taut, reaching out for…something. Then I found out he had tried to break into Joliet prison. He was sent home by the guards when they saw he came from a “good address”. There was definitely a religious theme to that episode which would blossom into delusions and hallucinations having to do with God and the devil. His roommate came home one day to see Michael standing, facing the wall. He told him he couldn’t move because the devil had nailed his feet to the floor. I can’t imagine anything more terrifying, and yet, this is what he lived with for the rest of his life.

He went on and off his medications over the years. And once he went off his medications it became harder and harder to regulate himself and come back from the brink. His hygiene suffered. He smelled of Florida mold and cigarettes but shrugged it off. He had horrible allergies and asthma but smoked incessantly so that he could organize his mind. Research has indicated that nicotine relieves some cognitive dysfunction, thus the preponderance of smokers among schizophrenics. Nevertheless, it bothered us because he was overweight and had horrible sleep apnea and we knew that it wasn’t good for him, but there wasn’t a lot we could do about it, so we watched him continue to deteriorate.

Despite his loneliness, he refused to go into a group home because he said he didn’t want to live with low functioning schizophrenics. He had lived in one for a while as part of a special hospital program and went to a halfway house or group home. At the time it was a mix of the mentally ill and criminals and drug addicts that don’t necessarily belong together. He didn’t down on them, it just wasn’t the challenge his still agile mind desired and wasn’t designed to give him the help he sorely needed. However, he would give them the shirt off his back if he could. This spurred him on to strive to live independently. He was very involved with the Franciscans, and the Catholic church. He went to confession incessantly and we often wondered what he could possibly have to confess since most of what he was confessing about had everything to do with his delusions and the voices constantly screaming at him, telling him he was going to hell over and over again.

Through it all, my sister, who lives in Florida, cared for him in whatever way she could, becoming at one point, his guardian ad litem and fighting for him on his behalf. One time, a social worker thought he should go home when he was clearly suicidal and my sister fought for him and won. She was a bulldog when it came to him. And thank God, because the rest of us were scattered to the four winds.

Eventually he accepted into the Florida Assertive Care Team program which provided medication, therapy and social work. In fact, he became a peer counselor until his own illness progressed and he was no longer able to help others.

Over the years, we have grieved for him. Grieved for the man he was, the man he could have been, and the man we wanted him to become. We had hoped that the illness would burn out, like John Nash from A Beautiful Mind, but it didn’t. The movie portrays John Nash as willing away the illness, but the truth is, it burned itself out. No one wills away schizophrenia.

The last time I talked to him was on his birthday, November 12, 2014. He was doing well. That’s how we talked about him to each other; not doing well or doing well. We could tell by his somewhat ordered conversation and especially his goofy sense of humor. He sounded…normal. Michael had gotten to the point where he could recognize when he was depressed and suicidal and take himself to a hospital that we’d never heard of on the far north side of Tampa.

On the morning of November 28th, two sheriffs came to my sister’s house in the early hours of the morning and told my sister that my brother had passed away suddenly. They were kind and gentle and clearly trained to deliver this kind information. My sister and her husband were shocked by this awful and unexpected news. I was getting ready to fly to Canada to do two comedy shows when she called to tell me that my brother had passed away suddenly. It’s amazing how one can sublimate one’s feelings in the face of tragedy. Numbness overcame me and, believe it or not, I was really funny for those two evenings. Then numbness set in and we set about trying to plan the next step. We found out that he had died from an enlarged heart and severe arteriosclerosis, an unfortunate effect from the years of living unhealthily, which is also a side effect of schizophrenia. We were shocked to find out that schizophrenics tend to die young. We thought he would live for a long time, and gradually come back to the land of the living again.

My father told me not too long ago that he thought Michael was right with God. I said, if there’s a God, then he’d better be right with Michael for all the hell he put him through. Sadly he’s gone. But not gone from our hearts.

– Kathleen Puls Andrade

9 responses to “Kathleen”

  1. Ryan Michael says:

    My Birthday is November 13th 1980 I have been diagnosed with Schizophrenia and Bi polar. I love this story Amen!

  2. loretta says:

    Thank you for sharing.

  3. Susan says:

    My heart goes out to you. My son has schizophrenia and like all who knows this journey, the stories are all so familiar. I applaud them for withstanding the pain and all the courage they have. None of us without mental illness are even remotely close to being able to handle our even “normal” lives. I am sorry for your loss, God bless all of you.

  4. Kristie Ann says:

    Thank you for your story. Someone close to me is just beginning this journey.

  5. Lucy says:

    Thank-you for your story about your brother, such a bright and promising young man.

  6. Vickie says:

    Kathleen, what a beautiful tribute to your brother and your sister. Thank you for touching upon the emotions that all of us with mentally ill family members experience. So many times family members feel as though they are the “only” family going through the experience when in fact it is just the opposite. It is only “silence because of stigma” that keeps that feeling in place. There are so many types of mental illnesses. If you do the math, more families than not are affected.
    That’s why Bring Change 2 Mind is such an important organization. It provides a forum for those affected and their families to gain support and learning while hopefully educating the world about how commonplace the disease is.

  7. Ellen says:

    I am Kathleen and Michael’s sister. Kathleen did a beautiful job of capturing both my brother’s gentle nature and the tragedy of his life. When he died, I was consumed by the idea that although he deeply touched many lives, he may not have realized that he made a difference in this world. So I sat down and wrote him the letter/eulogy below.

    Dearest Michael, if I could tell you one thing right now, it would be that you made a difference to those lucky enough to be touched by your life. A sensitive, smart, strong, and athletic boy, you had the wisdom and intellect to understand these gifts were to be used in the service of good and helping others. Your passivism seemed odd to the rough and tumble boys who wanted to challenge the strongest boy in the class to fight. But you held to your ideals – simplicity, peace, humility, and harmony – the same ideals that led you to so admire St. Francis of Assisi.

    A peaceful nature, however, should not be confused with a lack of determination and will. When you dug in your heels, nothing and no one was going to change your mind, a trait that often served you well as your life progressed.

    And then there’s the poetry, a lasting heirloom that you have left the family, some typed, some handwritten (we thought we had so much time left to transcribe it). Perhaps the highest compliment was paid by your high school English teacher, who once gave you a zero for a poem you had written, refusing to believe a boy your age could have written such eloquence. Those who knew you best, however, had no doubt it was yours. Your poetry will be one of your deeply treasured lasting legacies.

    Michael, I believe your story cannot be told without including the tragedy. You must have been terrified when your powerful mind began to fragment, ravaged by schizoaffective disorder, a terrible blend of schizophrenia and bipolar disorder. Nevertheless, your stubborn determination pushed you to finish college and earn a Master’s degree in Psychology. You used your knowledge and your own experiences to help others as a peer counselor for as long as your illness allowed. You lived independently, an achievement in itself. And perhaps most importantly, you never lost the essence of who you were – idealistic, peaceful, non-materialistic, and determined. Perhaps you didn’t realize it, but you were a role model for all of us, who could only hope to have the insight you brought to the world about what really matters.

    Michael, we mourn terribly for you and the future memories we’ll never have. But we know you are at peace, and will treasure the many memories we do have. I will never forget your boyhood crew cut with the widow’s peak, our wheelbarrow rides powered by Dad, our long walks at the Morton Arboretum, the arsenal of jokes you loved to tell Rhoda, spending your last dollar on ice cream treats for your nieces, your hazel green eyes fringed by enviable eyelashes, your love of Twinkies and HoHos, your boyish laugh, and even your smoky scent. We all love you, and most importantly we want you to know you gave us much and made a difference in this world.

  8. Karen K says:

    This is my brother’s story too. Lived with the same disease. Died the same death. Age 58
    Now my son has it.

    God bless us all.

  9. Jill says:

    thank you! My daughter has been diagnosed with schitzoaffective disorder. It’s very difficult. Unless you live with mental illness, or live with someone who suffers with mental illness, you don’t understand. Thank you for sharing your story!

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