Helping Me Understand My Son with Schizophrenia
Sometimes, the only way I get a sense of what my son, Ben, goes through as he hears voices and tries to process them is through his poetry and prose:
I feel like everybody is piecing together this huge puzzle and I was born with it already solved. I guess that’s a post-life thing. But with me it’s always been about diving deeper. Delving and diving in gray water depths instead of trying to pull that water up to your level where its shade is altered. Its as a different sun shine in your in your world a mirror of a sort that you struggle to see for in refusing to see yourself in disacceptance you are condemned to see it everywhere you go on everyone else’s face….wow I am really showing myself now the strange level these “normal” people live on….hard it be to shatter these dreams of them so solidified by causality taken as righteousness. And the illusion of consciousness. - Ben, 2002
But today I got a different perspective, thanks to my guest blogger, Katherine Walters, who, like Ben, has schizophrenia - but with more insight into it.
Katherine wrote to tell me that my book helped her to understand her mother's point of view. And now, Katherine, I thank you for helping me to understand what Ben might go through.
Katherine's story is below. It speaks for itself.
I just wanted to write and say that I really enjoyed your book, "Ben Behind His Voices." I learned a lot from it and I can relate to it a lot too. I can relate to Ben as well.
In 2009 I was diagnosed with schizophrenia. I was 20 years old. I had visual and auditory hallucinations since I was 17 but it was never diagnosed until my first psychotic break at 20.
[caption id="attachment_1721" align="alignleft" width="210" caption="Kathrine Walters Art: Four Moods"][/caption]
Like Ben, I was angry as a teenager. My relationship with my parents has always been stressed but this was most evident when I was a teen. There were shouting matches nearly every day. Mainly because I didn't have enough friends, I didn't dress like my parents wanted me to, I didn't take part in enough extra-curricular activities, I listened to my music too loud, etc.
Most of this was probably related to early signs of schizophrenia. I didn't have a lot of friends because I struggled to relate with others. I didn't dress like my parents wanted me to because I really didn't care about my appearance...at least not to the point that I felt like I needed to impress anyone. I didn't take part in outside activities because I was bullied and picked on...I was eccentric and my classmates didn't understand that. My parents would eventually find out that I was listening to my music very loud because I was trying to drown out the voices.
In high school I was in the top 5% of my class. I studied hard...that was something my parents were proud about. I graduated with honors. But it was hard because frequently I was non-verbal at school. My teachers were concerned about me but didn't know how to help me. How do you help someone that can't tell you what is wrong? I guess that is probably what they were thinking.
I did well in college until the end of my sophomore year when I began to become psychotic. I was a good student still, and I had a fiance. I worked as a dog trainer at Petco. But at the beginning of 2009 I started to fall apart. I couldn't focus. I had trouble communicating. I was hallucinating. I felt very distant. My grades fell. I skipped class. The only place that I could function was when I was teaching dog training classes...but even that was not the same.
In March 2009, I was admitted to a psych hospital for the first time. I was diagnosed with schizophrenia. I spent my 21st birthday in the hospital...which I find quite a bit of humor in considering how interesting the guests at my party were. The first hospitalization was followed by 13 more hospitalizations in 2009. I've lost count now but the to-date total is almost 30 hospitalizations since 2009. Each of these was a varying degree of a psychotic episode.
My fiance broke up with me due to my diagnosis. I had to move
[caption id="attachment_1724" align="alignright" width="135" caption="Katherine's Art 2: Fragility and More"][/caption]
back home. I lost my job. I wasn't allowed at a family reunion because some of my relatives were uncomfortable about being around a schizophrenic person. I had to go on disability.
But, I did graduate college with a degree in Psychology. I started a blog called "A Schizophrenic And A Dog." There was an article about me in Schizophrenia Digest. I was featured in a television show on Animal Planet. I've been published in a book about disabilities. I've had a few of my written works featured on blogs and websites. I take my medication as I should. I am lucky enough to understand and be aware of my illness. I recently had a full-time job, the first job since my diagnosis, that lasted a month and a half. I now live on my own in Kentucky. And, I may be participating in an 8 month long research study about schizophrenia.
The successes definitely outweigh the losses.
What has helped me the most is finding a medication that works (Thorazine) and receiving consistent therapy. Also having a pretty good support system.
My mom isn't as supportive as you are of Ben...but she makesprogress. I'm going to really work at trying to get her to read your book because I think she could learn a lot from it. I know I did. I'd never seen the struggle through schizophrenia from the viewpoint of the mother. It gave me a lot of insight into how my parents have probably felt.
Thank you for reading my email and for writing the book. It is an amazing book. I really hope the best for Ben...you portrayed him as such a nice guy that it is impossible to hope for anything but the best for him. Also, thank you for being supportive of him. Some of us don't have that, and Ben is really lucky to have you.
I lived at home for 3 years and paid rent to my parents. It worked out pretty well until they decided I needed to move out and get more independence. I like living on my own but I sure do miss home. I'm glad you have welcomed Ben back into your home.
Katherine - thank you for sharing your experience with us - and I hope that your family continues to learn, and empathize, and support- as we have tried to with Ben. The more we all understand the others' point of view, the more we can all make a difference. Thanks!
Kaye, R. (2014, February 10). Helping Me Understand My Son with Schizophrenia, HealthyPlace. Retrieved on 2022, May 17 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2014/02/katherines-story-helping-me-to-understand-my-son
Author: Randye Kaye
Thanks for writing, Monica . I understand all your feelings so well. Ben is still living with us but the threat always looms that we will no longer allow him to live with us if he doesn't take his meds . House rule. But I am terrified that one day we may have to carry out the threat . With his meds and more he has progressed to employment and school and a life that feels "normal".... But he would go off his meds tomorrow -and lose it all- if given the choice .
I will be reading Bens book. I'm not so articulate so please forgive me if I ramble on.
I have a son who in May 2016, had his first episode. It was awful. I was so scared as his mom. I feared for his life. It's been almost four months and counting. I have gone from feeling optimistic to loosing hope and feeling lost. But honestly seeing posts like this give me hope that there can be some balance. Hopefully we will find that. My son did meds for two months then decided he didn't want to. So right now it's been almost 3 weeks of him not drinking them and I'm seeing the regression. Locking himself in the room not tolerating ppl around him. Having moments of him looking at things in the sky or staring into space and nothing's there. I hurt when I see this. Him getting angry or upset at me when he feels triggers. He doesn't know fully what is wrong so I do not name him. But he is my baby. And I absolutely love the kid. I hurt for him. He's terrified that he will end up in an asylum. We have talked about what do I do. He told me not to let him hurt anyone ever and that gave me the strength to look out for him and make tough decisions when I need to. But it's hard. I say I'm tears of a clown cause I smile out side but wet puddle inside. Lol The one thing from this horrible thing that is happening that I can share is, love them as much as u can and when possible I know it's hard at times. See it for the illness that it is. If some one was blind and broke something ppl would be more forgiving than some one with an mental illness. the truth is the world is not forgiving. We their family are their voice. I don't want to hid my son embarrased or hid him off in a courner. So I try to stay positive n do things as long as he can tolerate it. This is me n him short and a little weird but it's all good. We're not perfect but it it's ok not to be fine some times. I pray I can be a good support to him like some of you guys are to your loved ones. I pray for acceptance in the things I cannot change. I want to be the voice for my son. I pray the same for you guys cause more voices make change more speak out Beter awareness out there.
I Love your blog!! My son was diagnosed at 17; did not want to take his meds; fast forward; he is taking med at 33 yrs old ;after being in a several hospitals and traveling all through the usa. I got him back from Hawaii for god sakes....We live in Albany, new york. He was living in a group home and he has his own apartment as of today...There is treatment out there for them to live a healthy and normal life!
Thanks Suzie, and thanks. Glad to hear there has been progress. We need all the hope we can get!
My precious nephew has schizophrenia - has been diagnosed since he was 18 and had a closed head injury. He is so alone except for his Mother, my sister. He lives in his own condo that she bought for him, unfortunately, he is really not capable of the responsibility of caring for it. He refuses to let ANYONE in his house but is so lonely. This is so sad for both of them. God just continues to give her strength to be there and him to hang on.
Yes, Becky, I agree. It is so sad...hopefully we can give each other strength, and hope, and information.
It is so nice to hear of other people's experiences with schizophrenia and a Mother's perspective.. It helps me feel less alone in the experience... Thank you both.. I wish you well...
Thank you all! So glad Katherine's story helped in some way. And, yes she is quite the artist!
Thanks so much! My younger brother was diagnosed in 2002 and finding information at the time was so difficult. It's nice to get information from someone going through it too.
It's so great to have this report from "inside". A very valuable piece of writing, I think.
I think your artwork is terrific, Kathrine!