Family and Caregiver Schizophrenia Discussion Forum

Son writes on himself

I hope I’m not overposting but another symptom my son has is that he writes all over his hands, like ALL OVER them. I try to discourage it but he won’t stop. At first he was able to hide his symptoms, mostly because the only thing he was doing was saying strange things to his friends from his delusions but now I feel like everyone that sees him immediately can tell something is wrong. Anyone else heard of people with SZ doing this?

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No I haven’t but wibder if it is complusive behavior. Maybe give him a nice pad notebook and pens of different colors to write or these new coloring books for adults? It may not work, but thinking about alternatives. You may want to have a conversation with his friends and tell them about his condition, I mean what you feel comfortable sharing, maybe they can help and be more empathetic, relate more to him. We parents have to do a lot of educating to people about mental illness. Hope things get better.

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Unfortunately we are well beyond that. He has now lost all of his friends due to his behaviors. All he has left is us and his girlfriend but not sure how much longer she will hang on. It is so heartbreaking because he had so many friends that be cared about before this nightmare started and was such a good kid. Now he only cares about himself and has no use for you if you can’t do something for him. The son we had before seems to be gone and replaced with someone we don’t know. Sorry my response turned into a rant, I do appreciate the advice though.

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Not a bad idea, I think modeling more acceptable modes of behavior while avoiding suppressing expression can work in certain situations where there’s motivation. I did some of this in my journey, and for me it was a way to work through my obsessions. I’ve heard an easier way to kick a habit is to replace it with a more healthy one, rather than quit cold-turkey.

I went through a phase where I would talk to my self while alone in an attempt to communicate with people I believed were surveilling me. Over time, I came to believe there was also video surveillance at a time when through therapy I became interested in becoming more social. I realized if word got out about my behavior, it could limit me. So I started writing my one-sided “conversations” down, assuming my surveillors could read what I wrote. And when I became concerned my notes might be discovered, I started writing in the air with my fingers. Later on in periods of near relapse, I would write emails to myself assuming they would be read or searched the Internet in communicative ways.

Expressing yourself is a manner of growth in which you define, explain and discover yourself. When you have an artistic child who draws on the walls, instead of punishing them perhaps it’s better parenting to give them paper or other art supplies and ask them to make something you can hang it on the wall instead. This came up in therapy for me, as I related a story in my prodrome where I impulsively decorated reinforcing for a slatted door in our basement in bright blue paint— like a big blue letter Z. My therapist came to call it my “blue Z moment,” and we would revisit it from time to time as a touchstone to bringing me out. If you’re familiar with the movie ‘Sybil’, it reminds me of a moment where ‘Peggy’ draws her anger in purple crayon. It’s a means of declaring “you were there” and “you matter” which are healthy and transformative when expressed appropriately.

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Hey Catnip. Novel idea, maybe you’ve already tried it, but… what if you sat down with him and started drawing on your own hands, painting your arms and face, and embracing the activity with a washable medium?

My son lost all his friends, or better said, they all ran away from him due to his bizarre behavior. So we family are his best friends, and we’re hopeful for new friends to come into his life. In the meantime, get crazy - tatt up - stickers? - body paints? Embrace the suck. Love wins!!

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Before I understood what was going on with my son, I was highly alarmed by a notebook that had a couple of pages filled with very close writing that really didn’t make any sense. There were words, there were not complete sentences and there was a lot of repetition.

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Unfortunately I have found writings and drawings that he has done that are very disturbing as they indicate how deep his psychosis is. Most of the writings don’t make sense but some reflect his delusions so I don’t really want to encourage that either. However now that you’ve mentioned this maybe if I commission him to draw something pleasant for me like a sunset or something that might work.
I have a question for you though. How does it feel to be on the other side of things where you can reflect on your past delusions with the knowledge that they were not real? I can’t seem to wrap my mind around how that works. I liken it to a story my father-in-law told. He was in a severe car accident many years ago and suffered from a severe brain injury. He was in a coma for many weeks and when he awoke he was determined that what had happened to him was that he had been trampled by a horse. He had been told time and time again that it was the car accident and not a horse so it’s like he knew that it wasn’t a horse because he was told so many times that it wasn’t but I still feel like his true belief was that it was a horse. Does that make sense?

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My son does this too. Most of it doesn’t make sense but what does is disturbing. Also the manner in which he writes is odd, like you said really close writing and some letters, I think the o’s, are substituted with little triangles and very repetitive. It’s honestly very unnerving.

Unnerving is a good word for it. When my husband and I first met with the psychiatrist our Family to Family class had recommended, I took the notebooks to show him.

He didn’t do more than glance at them before setting them aside dismissively. He said they didn’t mean anything.

He also crumpled up the paper with the diagnosis of major depressive disorder that had been issued by some agency my son’s employer had insisted on sending him to before he could come back to work.

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Experiences vary. I’ve covered much of mine in previous posts if you search my posting history, but here’s a consolidated version. I’ll triangúlate to the mindset in a scattershot way, offering a number of analogies hoping some may resonate.

An explanation I often use is an excuse people use when an amusing anecdote doesn’t land: “you had to be there.” You don’t “get it”, because you didn’t experience it which is why it was compelling in the first place, and there’s little I can do to put you in my shoes. It’s not the story, but the experience that matters, so looking at it from a logical and objective perspective fails. It seems harder for people who are more concrete and “grounded” to imagine the experience of others when they know that the experience wasn’t “real”. To them reality is chiefly sensation— not perception. The “reality” of all or most of perception and cognition is illusion, your brain tricks you into to thinking there are objective “realities” and “truths”. One strength I find over people who haven’t experienced psychosis is I know this and as such am less trusting of my mind and senses— it makes me a better scientist, engineer and thinker. But it doesn’t make my experiences any more accessible to others, and as such I hide them, and it requires a great deal of trust to open up about them— if at all.

Another analogy I’ve used is recovery’s like waking up from a vivid dream. There’s a phenomenon I experience, and I assume most dreamers do, where I wake up with a start and I’m in a transitional state where I’m reorienting myself to what’s reality and what parts of what I recall was a dream, and where the content of the dream came from and why. Recovery from psychosis is a similar, but more gradual process. As with dreams you might forget them immediately, or details become hazy or you get confused about what was real and what was dream. You might be haunted by your dreams or attach elevated importance to them or feel they are prophetic or revealing or make you feel special. They may puzzle or disgust or scare or embarrass you, and often you must be very careful when describing their content to others. They may recur or fit a theme or you may dread going back to sleep out of fear what you might dream next. And so on. As with dreams some delusions may seem pleasant, familiar or comforting and you might even look forward to them and miss them when they are over, but you realize it’s impractical to spend your whole life asleep.

Another model of psychosis my first therapist encouraged was to look on my experience as a form of fictional narrative my psyche devised and lived through as a means of “becoming” or defining myself. She’s Jungian and in Jungian jargon it’s adjacent to a process they call individuation. If this sounds woo-woo or abstract, I’ll use an example of a fairytale (which are staples of Jungian theory) most parents tell their children and actively encourage delusions associated with it— namely the Santa Claus myth. I bring this up, because recovery is similar to how children lose their belief in Santa Claus. Over time they see inconsistencies or hear stories from peers or siblings about the big lie, but snap back to belief because the story comforts them, or put on a self-interested front of believing for their parents to continue the presents or to spare their younger siblings, etc. For me it was a gradual process, I recall pointing out a price tag for a local store on a gift and suspending my own disbelief by saying, “I guess Santa shops there too.” It’s an imperfect model for recovery, since children rarely revert to believing in Santa once they figure things out— still they look on the experience with nostalgia and relive it through their children. It’s a participatory version similar to what Joseph Campbell coined the “mono myth” and related to Jung’s theory of the “collective unconscious.” Some writers call it “lying to tell the truth.” And Jungians view those who recover as akin to shaman who return with wisdom to share with others to heal or teach.

Finally, some people look on the experience in a spiritual or metaphysical sense. I’m largely agnostic, but certain aspects felt to me like being “touched by the hand of God” and I understand how shaman might attribute the experience with entering spirit world and feeling their visions prophetic. There’s duality of the experience as if you are in two worlds at once, possibly experiencing two truths simultaneously. My mind goes to the science fiction of parallel universes and being caught in a nexus as a possible explanation, because both experiences feel real and compelling and while the practical earth-bound me tells me none of that stuff is real, the intuitive and spiritual side isn’t sure, hence I’m agnostic— I literally “don’t know” what was real or not, but make a practical choice to remain in this world, and am wary to even mention my other realities.

John Nash was once asked how with all his accomplishments in the field of mathematics, how he could possibly have come to believe his outlandish delusions. He said they came to him intuitively in much the same way as his mathematical discoveries. They felt right, so he pursued them with conviction. Unfortunately most delusions are inherently unprovable, or rather difficult to prove definitively untrue to a believer— they wouldn’t have much longevity if this was easy. Hope this explains the mindset and the experience a bit better, it’s difficult question to wrestle with, but I’d rather wrestle with it in recovery than not have a recovery at all.

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Looking back on my response, I made the mistake of over analyzing and elaborating it. Here’s a more succinct summary to how I feel about my recovery:

I feel both pride and shame about it.

I remember saying to my therapist about 10 years in at a point where I felt I was unlikely to relapse and felt secure I’d caught up with my peers, “It’s a shame the biggest accomplishment of my life is something I can’t talk about.” I feel very lucky I found my way through and secure and proud of the accomplishment and the work it took to get there, yet ashamed of my good fortune when so many suffer and for any suffering I caused my loved ones and innocent bystanders along the way.

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I don’t know your backstory or what if any treatment your son is on but writing on his hands and arms was one of my son’s quirks when he was very ill and hearing the voices and he also wrote very disturbing and nonsensical things repeatedly on anything and everything, it changed often and eventually made it to paper but my son was with a doctor who we initially saw twice a week and he called once a week and I could call him whenever I needed to.

This was in 2006 or 2007. He was by far the best doctor my son ever had and I had already established guardianship by then so the doctor treated as a team never taking my son’s words at face value and always checking the reality against what I ad to say since my son and I lived together and my son could barely form good sentences.

His doctor had me keep a notebook of every single odd behavior or complaint and each visit he adjusted meds, added or subtracted meds and eventually after lots and lots of trial and error he came to clozapine which made me nervous at first but the doctor said if my son was his son, this is what he would want to put him on. He has been on it all this time (over 10 years) and he has no voices, no noticeable fixed delusions, no auditory hallucinations, no writing weirdly on himself or other things and no weird or nonsense speech anymore. He does very well, he still has the lack of motivation quite often and has absolutely no desire to meet new people or consider dating and sometimes he gets confused on what steps to take to accomplish a task at hand.

He proclaims he is happiest when left alone or spending quality time with me. I say all of this because whatever your son’s situation is --there is at least a possibility that there is a doctor or a medication that can make your son better. I can’t say for certain of course, but i can speak from my own experience that a decade ago I almost lost hope for my son ever regaining his sanity and control over his actions, and today he has his sanity back again and he writes understandable daily reminders of things he wants to do in a notebook. I hope things get better for your son. Take care. (PS: You can never over post)

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Thank you! You explained this perfectly! The more I learn and try to understand what my son is going through the more I am able to help him. I appreciate you sharing your experiences with us. Having someone that has been through this like yourself that is willing to listen to and educate families desperate for answers is such a blessing! It helps so many of us that are feeling so alone and so helpless.

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I am so happy to hear that your son is doing well! My son has been on Risperidone since the end of December but not only is he not getting better he’s getting worse. I cannot tell if it isn’t working or if he’s not swallowing the medication. Your son’s experience gives me so much hope! I know that some aspects of his life are never going to be what we hoped for him or expected but it will be such a blessing to get him to the point where he’s no longer suffering.

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While our children or loved ones struggle to find and take the right medications, don’t forget your own medication. It’s called HOPE. Eat it. Drink it. Inject it. Inhale it. Bathe in it. Spread it on your body like sunscreen on a toddler… liberally, too much - spill some on the ground. You can’t overdose from too much hope. You only die when you have none left.

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You mention going to therapy. Is there any particular therapy that was useful to you. My son cannot express his feelings, his hopes or dreams for the future, what makes him happy, nothing. I can’t imagine him actually opening up to anyone. He is pretty stable right now on his medication (although hears mild voices which he chooses to ignore). I have tried to locate a therapist in our area who deals with someone having SZ but that specialty doesn’t seem to exist.

Risperidone did very little to help my son, neither did Geodon, Abilify, Invega, or the half dozen other medications. Only the clozapine started showing relief for my son within the first few weeks but because it responds slowly it took almost a full year to see all the worst symptoms alleviated. It was so worth it. I wish I could have skipped all of the other meds and gone straight to the clozapine.

Also in the beginning because my son was so ill, there was no way I would entrust him to take his own medication. I mean the illness almost guarantees the possibility something can go wrong. It might not but it also might. Not worth the risk for me. I watched him take it every time for at least 2 or 3 years. Then I saw his willingness to get it right and I saw a “light” go on that convinced me he saw the importance of the medication and taking it right every day.

Today he handles it all himself and is excellent at keeping it straight. I think sometimes parents (without meaning to) forget that this illness by it’s very nature when it’s in full force prohibits us (as parents) from being able to trust our children’s actions. Not because we don’t love them dearly and know deep down they are good and trustworthy people. BUT because this illness is twisting their thought, comprehension and memory processes through no fault of their own and we simply have to intervene. A voice of sound reason must prevail or so I personally believe.

Our actions for them can be trusted until there sanity returns to them and we can turn the reins back over to them. In addition them not liking our intervention is also okay because as part of the illness they will not understand how much our intervention and guidance is needed until they are better again.

I thought my son hated my guts when he was ill, because I was in counseling I was constantly reminded by my therapist that an ill person does not perceive reality correctly so don’t trust the hateful reactions that I got from him for making him do what was right.

Today my son has said several times he is so grateful I stuck with him and he has said he was so sorry if he every said anything hateful although he has no memory of any specifics. I have never rehashed them with him there is no need for that. I just tell him that there is no apologies needed. He is okay now and he is always my labor of love.

I am rooting for you and your son and have high hopes things can get better with the right medication and time. Never stop questioning the doctors. Take care. ~Catherine

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Thank you. Unfortunately this morning I took him to his new psychiatrist appointment that we have been waiting on since November and he refused to get out of the car and see the doctor and insisted on becoming homeless. We are completely devastated and I did not see this coming today. I had high hopes that this new psychiatrist would put him on shots and we would finally get him the relief he desperately needs but it went exactly the opposite direction. So now he is homeless in the winter and very ill and there’s nothing I can do about it since he is 20 years old.

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I had 12 years or so of Jungian psychotherapy followed by a break and then another 4 or 5 years from another psychotherapist not strictly Jungian, but aware of Jungian methods. I don’t recommend psychotherapy without a certain degree of insight, as mine is an exceptional case. Peer or other counseling through NAMI or elsewhere and CBT (cognitive behavior therapy) may be more appropriate. I wish more psychotherapists had LEAP training, because I think that would be a better bridge toward medication and other therapies beyond caregivers going it alone.

I was employed and/or in school for the bulk of my active illness, and for the first year was aware I was ill, but not initially receptive to medication. While I had no formal LEAP or CBT therapy, Jungian analysis served the purpose of LEAP for me and work and school experience in scientific methods were applied to myself and served as my CBT. I also learned to sing and participated in musical theatre and other artistic endeavors as a form of personal development/therapy.

Jungian therapy was uniquely suited for me at the time as it is non directive and does not pathologize mental illnesses. My therapist didn’t limit the course of my progress by preconceived notions about prognosis or diagnosis. It’s not for everyone, and there are many who say psychotherapy is useless for treatment of people with SZ/SZA. I think it depends on the individual. I think most can benefit from some form of supportive therapy for monitoring and developing coping skills, but you need someone experienced in this, as a more typical counselor might quickly be out of their depths.

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The people at the doctor’s office should have been able to help, or one would hope they would. I am so sorry.

Do you have his legal guardianship? It is really worth pursuing if not. Your son will get angry at course at being “made” to do things but knowing it is the path to better health makes it more palatable. My son said and did the same things I assure you, I am not just saying that.

At one point my son jumped out of the car while I was driving. Fortunately was not seriously injured but I have been there. Sometimes you just can’t take know for an answer.

One thing I would have said at the time is that we would sit in the car until he was ready to enter. As for homelessness I would have said not while I’m alive, although my son ran away so well one time that he was homeless for almost a year until I tracked him down. Anyway hindsight is 20/20.

Maybe call the doctor and explain what happened and maybe regroup and try again? One reason I think our kids refuse help and threaten to live as homeless people is because of pure fear and confusion, but mostly fear. They don’t understand the process and they don’t know (yet) what is good for them. I hope the next time your doctor’s appointment is a success. Stay strong.

Also an FYI -if your child is declared disabled legally before the age of 21 I believe or maybe it’s before 22 they end up getting better public benefits (in my opinion) than when they go on disability after age 22. I’m not sure if you have pursued that yet but let me say it is a godsend the income and the medical coverage. But it goes without saying you should be the rep payee until he is well or there is the whole “now I have the money to go anywhere” thing…which no mother wants in this situation.

I got my guardianship, my son’s disability and was made rep payee all in a 4-6 month period and it was the best thing I did for him and for me. I used a reputable SS attorney and some will say do it yourself BUT the system is set up to put self represented applicants at the end of the line. Just thinking out loud and offering suggestions where possible. Obviously I don’t know your situational details so you have to do what is best for you and your son. Still wishing you will always. Sending positivity your way.

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