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Schizophrenia's Voices: The Strength to Say No

February 9, 2012 Randye Kaye

Every so often, I am reminded that my son Ben still has to work hard to stay focused on the world as we all know it: work, play, conversations, whatever we are watching on TV. Without his medications, that feat is nearly impossible; with treatment, it's certainly easier. But not without effort. Not without strength.

About a year ago, Ben had a minor surgical procedure done right before his sister's wedding. He had been avoiding this for a few years...no, refusing to have it done. Why? He wouldn't say. But now it was time. Actually, I bribed him to have it done: he got a new video game out of it. Whatever works.

On the morning of the outpatient procedure, Ben seemed fine. Was fine. Charming to the nurses, totally coherent, trying a bit too hard to appear unconcerned but nothing out of the ordinary considering he was facing an unknown. After the procedure - which went without a hitch - he walked back into the waiting room with a huge smile and said, "Wow, Mom, that wasn't bad at all! I'm so glad I had it done."

And so. Relief, laughter, calm.

[caption id="attachment_621" align="alignleft" width="196" caption="Term Used in the Past"][/caption]

But - when I walked across the pedestrian bridge to get our car, I could see Ben below me, unaware that I was watching him. He had gone out the main entrance to smoke a cigarette, but it looked like he was talking to someone else: hands gesticulating wildly, face alive with conversation that looked as though he was trying to convince someone he was right.

Only - there was no one else there.

The last time I'd seen this behavior was when Ben had been in the hospital, without psychiatric medications, wandering the halls and barely able to turn his focus to me, to the us, to the real world. But today? He'd been fine, engaged, all day, I knew he had taken his meds, since I'd supervised them myself for the past few days. This was different.

And then it hit me: Ben was telling his voices that they had been wrong. The surgery hadn't been so bad. His mother hadn't had an "ulterior motive." And - who knows what else the voices had said to him? And how long he had been obeying them, while trying not to? Was his refusal about these voices all along? And that they genuinely frightened him? Poor Ben. And brave Ben , for not listening in the end.

It was then then I realized, again, that Ben's voices (which he says he does not hear, but I see it differently) may never go away completely. The meds give him back the balance, perhaps, to ignore them most of the time. As for the rest of the time? That is Ben's strength to use.

I see him, sometimes, make a noticeable effort to refocus on his family, on school, on work. It is, I think, similar to when my husband tries to get my attention when I'm in the middle of reading a great novel or writing an e-mail - I have to pull myself away, mentally, from where I have been, and choose to change focus. I think it may feel like that for Ben; and, even more challenging, he may have even more choices to make - for his internal world may still fight for his attention too.

Oh, yes, I will settle for the fact that his internal world can now be reduced to a more minor distraction - but those voices speak up much more loudly in times of stress: impending surgery, big choices, upcoming holidays, school finals - and, of course, a change in medication.

What helps? Yes, making sure he takes those meds. But also - keeping the "real world" as engaging, manageable and loving as possible. Until more research results on better treatment options, this will have to do.

If you watch the final scene in Ron Howard's movie A Beautiful Mind, you will see the John Nash character describe this very thing: his medications allow him to keep those voices at bay:

"Like a diet of the mind, I just choose not to indulge certain appetites," he says in that scene. Yes.

Meanwhile, I so admire Ben's strength. He usually chooses us.

APA Reference
Kaye, R. (2012, February 9). Schizophrenia's Voices: The Strength to Say No, HealthyPlace. Retrieved on 2020, November 25 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2012/02/schizophrenias-voices-the-strength-to-say-no



Author: Randye Kaye

Donna
November, 6 2018 at 5:15 pm

Thanks for sharing life’s struggles of this illness

Andy Smith
March, 5 2012 at 7:40 am

I was a Man who took care of his family of four children and also two old men for years until one day when the world dumped me into chaos, I went into the hospital several times over the next ten years or so and was diagnosed with Bi-Polar and schizo-effective disorder. Suddenly all my money and properties and life itself was taken from me and am not allowed to make or have my own money without a care taker,But that's not the worst of it as i found out soon enough, My whole world is spent inside my home/Prison.
The worst part is that my family especially my in-laws keep telling my wife to leave the bum! I was never a bum person having served in the Army for 6 years and graduated college and worked for my family,Now it seems as though i failed in that and in life itself.
I say when asked that i feel like i'm sitting at a monopoly table and lost everything but are refused to let leave the table till the whole game is done,,as a Loser!
The only way for me to leave the table would be to die which i wish for every day! I have tried several times by jumping from a moving car and some other things. Then i end up back in the ward.
I take my meds but not the whole dosage because it makes me feel like i don't know whats going on with my head so foggy. I have the voices of course,But i argue with them,but sometimes the voices make since to me. I feel like God is punishing me so i went to a priest to ask forgiveness,but he told me that i had done nothing to forgive,but if its NOT God punishing me who is? and why? I live in constant worry that my wife will leave me although she says she won't.I want to believe her but my voices say she is lying to me.Also nobody tells me anything and if my grown kids want something they ask her because they think i am senile.
I am NOT senile and i know more about whats going on than they think.
I'm only 53 and from a long life family, I can't take all those more years living like this. I am alone all the time and get so depressed and helpless and no one i know can understand this. I don't think they want to understand. I don't remember to eat and get sick from not eating and i take my meds when i think of it which is not on anyone's time schedule. My voices say that the country is going to round all us ill people and dispose of us so they don't have to deal with mental illness. Stupid ha? ALL I know is life as i knew it before will never be back and that i am condemned! Do you think God will send me to hell because i am defective? I have prayed so many times but i don't think anybody hears me prayers,,,,Andy

In reply to by Anonymous (not verified)

Randye Kaye
March, 5 2012 at 8:50 am

Oh, Andy - my heart goes out to you. After serving our country for so long, it's just not fair that so much stigma, and so few resources are what you are facing. I can't answer your religious question, only offer my opinion (and my beliefs do not include the concept of hell) that no one can be blamed or considered "bad" because of imperfections that are nobody's fault. It's not the cards we are dealt, but how we deal with them...and it sounds to me like you have a great deal of courage and that you care very much about your family. That's heaven material, in my eyes.
As the mother of someone who also "hates" his meds but takes them (and finds that they assist in engaging at school and work), I would encourage you to take the full dosage because it might make your home life happier if communication with your loved ones is easier. I wish you all the best - and if you or your family is ready for support, NAMI is a great resource, as is becoming a member in a ClubHouse (see http://www.iccd.org/ for info) for you. We ALL need love, purpose, community and structure in our lives- I wish these for you. Don't give up.

Terry
February, 25 2012 at 10:17 am

I have schizophrenia for over 20 plus years. Took many different kinds of medications. Taking clazaril for the last few years. Doing wonderful! My concern is if I get an abnormal reading,blood test. Ill have to stop taking this med.

Gloria
February, 24 2012 at 4:47 pm

Randye,
I am also proud of your son, Ben. It takes a lot of courage to fight every day to stay focused and try to ignore persistent voices. My son has struggled with schizophrenia for 20 years. Without clozapine he says he suffers more because the voices scream and say horrible things to him. Clozapine and Saphris help to quieten the voices, but not totally take them away. When he is in a strange or stressful situation, he also has to smoke because the nicotine also helps to quieten the voices.
Anyone who hasn't lived with this disease or watch someone struggle with it, really doesn't understand. I appreciate your sharing your experience with all of us.

In reply to by Anonymous (not verified)

Randye Kaye
February, 25 2012 at 4:25 am

thanks! such true words

Dr Musli Ferati
February, 24 2012 at 5:34 am

It is to predict that hearing hallucination are the consequences of a tension dilemma between fear and need to relationship of respective psychotic patient. Thus, the necessity of hallucinolytic medication should to be of crucial importance, in order to alleviate these psychological and emotional strengthening that follow with difficulties in social functioning. However, it should to medicate psychotic phenomenology of psychotic patient according to the last principles of psychopharmacology. Otherwise, it would to compromise overall process of treatment to this serious mental illness, such is Schizophrenia.

Rossa Forbes
February, 10 2012 at 7:43 am

"I will take actual experience over theory based on one Nobel Prize level genius’ anecdotal evidence any day."
Chrisa, You are entitled to your opinion. I am merely correcting the record about what the real John Nash did. It is fact that Nash recovered eventually without meds. He didn't say what he owed his recovery to, he just said he hasn't used meds since the 1970s. Therefore this is not anecdotal evidence. The real John Nash is not especially exceptional. The movie disseminated a falsehood.
Best regards,
Rossa

In reply to by Anonymous (not verified)

Randye Kaye
February, 10 2012 at 11:19 am

Many thanks for all of your insights so far. It's always interesting to see where the comments lead us, and if that line of dialogue in "A Beautiful Mind" was inaccurate as far as John Nash himself is concerned, then it is still accurate for my 29-year-old son, at least for now. I have learned that about 25% of those with schizophrenia experience relief from symptoms as they reach middle age, and of course I'd be thrilled if Ben is one of that 25%. For now, though, our experience is closer to that of Jenifer and Chrisa - I have seen Ben without meds, and it's a complete turnaround from the success of Ben with meds.
Of course, recovery is way more than meds- I talk about that in many other posts. This one was not intended to be a pro/con meds entry; rather, it is meant as a testament to the strength and courage of Ben - and others like him - who strive every day to live a life of purpose, community, and connection - despite the inner world that may try to distract or interfere.
It is my attempt to understand what my son's struggles might be, and to applaud the choices that keep him here with us, a part of our family, his school and his job. Bravo to him, and to all the people who support him on his journey. It isn't an easy one.
Thanks again for sharing your stories and your thoughts!
Randye

Jenifer Walsh
February, 10 2012 at 4:32 am

@Chrisa and Randye, Chrisa's experience is EXACTLY mine with one of my sons, 30 IQ points and all. Clozaril has been the only medication to help up to this point (and not even fully). I hope my son can have as much success in the future as Ben.
Take care,
Jenifer

Jenifer Walsh
February, 10 2012 at 4:29 am

Randye,
What a testament to the human spirit. For him to quell those voices to the ignorance of others (except you) is remarkable, and I'm sure, exhausting. God's blessings to all of you. Tell Ben, (from another mother of two mentally ill children), that he should be really proud of himself. You should be proud of yourself, too.
Blessings,
Jenifer

Chrisa
February, 10 2012 at 4:17 am

John Nash is not the norm. He is an extreme case.
My son will never be able to recover without meds, as much as I dislike that notion. We've tried without meds, and the result was persistent psychosis, suicide attempt, and the loss of at least 30 IQ points. YES - that was NON medicated.
My son is his own best advocate and expresses that the meds are what gives him the ability to ignore the voices - that, and his relationships with us, peers, and friends. I will take actual experience over theory based on one Nobel Prize level genius' anecdotal evidence any day.

Rossa Forbes
February, 10 2012 at 2:43 am

Randye,
The real John Nash stopped taking medications in the early 1970s. Here it is, straight from the horse's mouth. http://www.youtube.com/watch?v=UiWBWwCa1E0
Supposedly this falsehood about relying on meds for his recovery was inserted in the script (not the book) because the screenwriter's wife, a psychologist, didn't want people to stop taking their medications.
Here's what Sylvia Nascar says in her book, A Beautiful Mind.
"Nash’s refusal take the antipsychotic drugs after 1970, and indeed during most of the periods when he wasn’t in the hospital in the 1960s, may have been fortuitous. Taken regularly, such drugs, in a high percentage of cases, produce horrible, persistent, symptom like tardive dyskinesia. . . and a mental fog, all of which would have made his gentle reentry into the world of mathematics a near impossibility."
It may be beneficial for some people to take their meds during crisis points, however, the growing consensus is that meds are not for life for most people. Unfortunately, the fictionalized movie version of John Nash's experience with taking meds spread a falsehood that sticks in the public's imagination as "fact."
Best regards,
Rossa

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