Years ago, I attended a mental health conference where they held a ‘Consumer’ talent show. I had to get back to work at the time and missed it, but when I spoke to some caregiver friends afterwards they said it was great.
Are there any other talented folks with SMI out there? I have always been a bit musical, but after my illness, I took up singing, acting, stagecraft and a little guitar. I’d started singing in my car back and forth to work the first year I became ill, and had aspirations to be ‘famous’ in misguided grandiose delusions which fortunately faded. I have no desire for this now after treatment, after I suffered thought broadcasting delusions. I did get vocal and acting training, however, and continue to further my talents as a matter of personal growth, but I try to remain humble and realistic about them.
Any similar stories to share? I feel caregivers tend to focus on symptoms and loss, and not on talents gained or retained.
My husband is amazing at noticing nuance and detail and he is a decidedly non-linear thinker.
The downside of this is ideas of reference, of course.
But it has had a very powerful upside for him professionally. His work has been considered creative and “at times brilliant” by experts in his field and he has been spontaneously singled out for positive attention at times for his ideas.
I have seen him playfully and spontaneously move in verbal circles around other very bright people, but in ways that makes everyone feel good rather than put down or dominated.
If it were not for the anosognosia, Maggotbrane, he would definitely fit in your category of high achievers who also have schizophrenia and who keep this a secret to avoid stigma.
And I do believe that the way his brain is wired contributes to his success as well as his symptoms.
My daughter used to sing, and started at a young age. She was in a few shows, and also liked karaoke. She also was always doing drawings and paintings and computer images. After she got ill, she continued that for awhile, but pretty much dropped out almost any artistic activities (well most activities in general).
Unless we are filling out application forms for disability - at Family to Family they told us that most of us erred on the disability applications by emphasizing what our adult children could still do instead of what they were unable to do.
Like support groups, I do think we tend to be a destination for caregivers when they are feeling down. I also suspect we get a disproportionate number of more severe cases. I hadn’t realized how negative I was about my son at support group until they actually cheered when I said that my son showered regularly. One of the leaders was nearly tearful as she proclaimed joyfully “JEB SHOWERS!” I felt pretty silly. It is hard to talk about the good things in person when people around you are in crisis.
Before scz, my FtF teacher’s son had never been interested in reading, he was all math guy and had received a huge 4 year scholarship for a tech university. He couldn’t do math in recovery, but he became an avid reader and a huge fan of classic literature. She would treat him after his blood draws (for Clozapine) with a trip to Half Price books.
So far my son has retained his cognition, the psychiatrists get real excited about it, he may not be able to access it all the time, but its still there.
He was a gifted musician and continues to be on his good days, he loves music. He always was a hard worker, as an athlete he liked to work on things over and over by himself until he was happy with the results. I think that is why he does do as well as he does unmedicated.
My son’s ability to relate with children is a beautiful thing. He gives full attention to them and speaks to them with such respect and interest, and sees potential in each of them.
He can get downhearted that the illness seems to have taken away his ability for creative writing.
Thanks all for your responses. I’ll aggregate my reactions in one post.
@Itsastruggle, I can’t say I have the same fluidity of conversation and collaboration as your husband. I wish I did because I enjoy it when it happens. I have an odd mix of both nonlinear and linear thinking. It’s as if both ‘sides’ of my brain work in parallel. The nonlinear part brainstorming and creatively combining things, while the linear part stitches things together in sequence and governs the overall plan. I’m not sure exactly how I started working this way. It may have something to do with training myself to be ambidextrous in my teens. It takes a while for people to trust my process when they work with me, because I appear outwardly disorganized, but internally I’m keeping track of all the pieces on the board. I’m guessing this sort of wiring also contributed to my insight into and management of my disease.
@hope, per “Jeb showers”. I recall being in a mental hospital and for some reason the staff put out a basket of individually wrapped brightly colored marshmallow cream eggs. These were the sort I remember rarely eating as a kid, just a slight notch above those horrible orange “circus peanut” candies you’d get at Halloween that I could never finish eating and mainly just notched with a fingernail or threw at other kids or into the trash. The kind of candy that tasted stale fresh off the assembly line. Anyway patients started filing up and getting in line and it seemed such a spectacle that I remarked to the staff, “it doesn’t take much, I guess.” It was an odd scene where I felt out of place for not getting excited about something I normally would consider quite mundane and approaching revolting.
@Vallpen that’s great! I’m afraid I developed a self-stigmatizing fear or delusion that parents might advise their children to avoid contact with me due to my illness. It didn’t help when I answered my parent’s door on Halloween and saw a kid in an escaped mental patient costume. This was my first relatively florid unmedicated year when I was seeing a Jungian Analyst, so I was a bit hypersensitive to how my illness presented and was perceived. My brother with bipolar disorder by this time had enough public incidents that I imagined our home may have reached “The Radley House” reputation. Because of this, I tended to limit my contact with kids to my nieces and nephews and took the path of speaking to them as peers. A bit like the ‘surfer dude’ sea turtle, Crush, in Finding Nemo who addressed children as little dudes. I learned recently that my sisters kids, who are young adults now, consider me their ‘cool uncle’. Although in response I told my sister, “I guess the bar isn’t very high…”. I’m just generally confused by children and don’t quite know how to act around them, even though my sister says the Uncle role is the easiest gig possible— you just have to show up, and try not to be a jerk.
It may surprise people that writing is often a challenge for me, considering my posts here. I tend to suffer from writer’s block. Many pieces I start to write go unfinished as new ideas come up, and I’m off to the next. It was a big problem for me in my prodrome. I had trouble finishing papers in high school and college. In college I would end up repeatedly dropping a required writing class. I felt my recovery was complete when I was able to return to college and finally finish that darn class so I could graduate. I even got an ‘A’. Some of this I credit to posting in online forums and writing e-mails. For some reason I’m better equipped to finish my thoughts in these media.
@Maggotbrane, thank you for all of your posts and efforts. They are most helpful.
Since my son was only 17 With his first full blown episode he has not been able to gain any adult skills. He did draw before and was very skilled but has not been able to do it since. He has written some computer programs but I don’t know what they are. He was trying to develop a game. Sorry I have very little knowledge about computer games.
I think his greatest talent is his ability to continue to try and work hard on his goal to beat his avolition. Just amazing determination really.
@anon64643646 I’ve seen a similar determination in my brother. He often has very high standards, and although his methods are unconventional and take much longer than a less ‘committed’ person. When faced with a task he feels passionate about doing ‘correctly’ according to his vision, he follows through to the bitter end.
Some of his work touches on freelance computer work, although I don’t think he’s done game design. There’s a sense of artisanship in what it does in areas where it’s not cost effective or practical. Sort of like the furniture maker who puts 50 coats of lacquer onto a table that someone might buy at IKEA.
My Family to Family teacher’s son started quilting during his recovery. He was invited to try quilting by an older man who lived in their neighborhood. The older man told him he could use another guy to hang with at the quilt meetings. He promised him that when you are working on quilting “the whole world just fades into the background”.
I’m desperately hoping my son will find a passion again, or even something he can enjoy just a little. His negative symptoms have taken everything away. It’s so bad now.
@hope, he’s refused Clozaril so far, so that’ll have to wait until the next hospitalization, unless he chooses to try it earlier. It might happen. His insight is at an all time high.
For now, we’re relying on Invega Sustenna and Latuda to keep him afloat. He’s back to being stable (enough) again, like he was just after the ECT ended. He’s actually the most “clear” we’ve seen in 3 years. We can talk to our son again, and not the imposter.
The voices don’t go away though. The doctors say they may never, even with Clozaril. He needs to learn how to deal with them, and not let them boss him around. It’s a miserable existence for him.
Did your friend say anything about Clozaril helping her son with negative symptoms? I know not everyone has the negatives.
@Maggotbrane I may have forgotten, but are you involved at all with NAMI? You would be an amazing support for “peers” and NAMI needs and wants people like you to be trained to help with their Signature programs!
@hope4us I was involved with NAMI many years ago. I went to meetings with my parents when we lived in the same city. They hadn’t developed the peer to peer program when I was active. ‘Consumer’ involvement in my chapter at the time was very minimal.
The local chapter didn’t have peer to peer last time I checked. There’s another chapter an hour or so away. I drove up for a meeting while back and the info for the meeting location was incorrect and there was either no meeting that day or the location was wrong or both and I gave up in disgust after no response from emails sent to this chapter. This caused me to remember reasons I left NAMI. I haven’t tried to reinitiate contact with a full schedule of theatre and other responsibilities.
@Maggotbrane I am disappointed to say the least in the experience you have had with your local NAMI affiliates. It IS a volunteer organization but what you experienced is certainly not the model intended. I was impressed especially at the National NAMI Convention last year, with the number of “consumers” who attended and with a number of outstanding programs around the country that were peer led or certainly had some strong peer participation and leadership. The percentage is understandably les than family participation but my observation is that NAMI as a whole is striving for more peer leadership. You know this, too. It is just extremely unfortunate for your local situation and I don’t blame you a bit for your frustration with it. If you want to advocate for change, I suggest you write a letter to your NAMI State program similar to the info you have shared here. You are an advocate on this Forum!
I just got off the phone with her in regards to your question. She said "Oh YEAH did he have negative symptoms’. She said clozapine helped more than anything before had with her son’s negative symptoms. He had full flat affect - no emotion at all, no pleasure, no laughing, no anger and no caring or interest about anything at all.
Her son became a Peer to Peer instructor after his extensive recovery. (He always did have insight, their journey was a rough one, nothing worked and he kept trying to kill himself.) He was kind enough to come to our home to visit my son at my request. Many times he had been successful in getting people to attend Peer to Peer by meeting them in person first. People just loved her son. It didn’t work with my son, they had a pleasant enough day together, my son’s anosognosia was too high a hurdle even for her son’s charisma.
I wonder if you have anyone near you that is an instructor or a peer group support leader? Surely her son can’t be the only one that did that sort of thing.
I was really hoping your son would start clozapine since he seemed willing to try an oral med after the ECT.
Ok thanks @hope. I’m glad to hear that there’s a med that could possibly make a difference with negative symptoms. That’s exactly how I would describe my son these days- flat, no pleasure, no interests, no nothing. He used to laugh, a lot, but that was before he came back to reality.
He did try Clozaril once, pre-ECT, but two unfortunate things happened . First, he got a headache (who cares?) and second, the prescribing psychiatrist made the foolish mistake of telling my son people have died from Clozaril. The doc was referring to way back when the med first came on the market (before blood tests became mandatory), but telling a severely paranoid person this information was just absolutely idiotic. My son is able to think more rationally now, so I’m hoping he’ll soon be onboard to try it again.
Our son has repeatedly been offered opportunities to meet with peer advocates, but he’s refused. You can bring a horse to water but…
He has made it through week 1 of group living. I wouldn’t exactly say so far so good, but it’s what it is. At least he’s interacting with people other than me.
I guess I’m a little late to this post, but it is nice to think of the positive qualities of our loved ones. My son has a beautiful singing voice and was in plays and had a few leads when he was in high school. Our family loves music and the arts. We also host kirtans where we sing/chant the names of God. My son really likes chanting and tries to listen to it as much as possible. He says it helps him with his mind. Even though he has lack of insight and has never been able to agree to treatment, he knows he can’t handle stress and the chanting helps relieve some of it for him. A few weeks ago we had a community gathering and I was standing by the door and he was standing closer to me than usual and I could hear him singing, it was so nice. For a few minutes I forgot about his illness and felt happy to be near him. It really is sad how lost he is, yet I know he is just covered over by his mind and his pure sweet soul is still there. He hasn’t lost his beautiful voice either. He doesn’t sing out like he used to, but his voice it is still there.
- at Family to Family they told us that most of us erred on the disability applications by emphasizing what our adult children could still do instead of what they were unable to do.