Family and Caregiver Schizophrenia Discussion Forum

Considering launching a YouTube channel, seeking input from the community

I’ve mentioned in posts that I’ve been working on a project related to my experiences with SZA. For those unfamiliar with me, I tend toward long posts relating my experiences, insights and thoughts and feelings to caregivers to help them better understand people under their care and their diseases. It’s a unique viewpoint that I don’t mind sharing, but doesn’t always translate well to this forum. I’m more of a long form essayist, so I was thinking of starting a blog or a YouTube video essay channel as a more effective way to advocate.

When I start projects, I’m usually overly ambitious and get carried away in the planning stages. I’ve explained my ideas to a few friends and family, but before I develop things further, I could use feedback from people who don’t know me directly, yet know my work.

Like most of you, when SMI entered my life, I was bewildered, confused and unsure what it meant and what was going to happen. At first as a sibling when my brother was first hospitalized, then as a junior caregiver, drafted at 17 when my parents were on vacation, and finally, I experienced it firsthand years later. Knowing a little bit about the process beforehand helped me, but also kept me in denial longer because I didn’t want to burden my parents or end up like my brother. And through some amazing luck, I fared much better than most.

I think we all wish we were better prepared before we were thrust into this role, and that people had a better appreciation for what we go through. And although supporting one another within this forum and NAMI and the like is important, I feel sometimes it’s like preaching to the choir. Sure new choir members come along and we do our best to show them the ropes and support them, but I’m interested in better educating some of the public at large before it happens to them.

So I’ve been working on a series of media criticism essays from what I call a schizoperspective. So far most are on movies, plays and books that aren’t normally thought of as being mental illness related, but when I present them from a schizoperspective, I show how they relate to my experiences, and thoughts and feelings of people with SMI and their caregivers. This concept may be a bit abstract, so here’s an example of the first essay I worked on: it’s about Dr. Seuss’ Horton Hears a Who, and the TV show, play and movie based on it. The hope is to raise awareness of mental illnesses, treatment and attitudes toward the SMI and caregivers in people in general, but especially in writers and TV and film makers in an accessible way. The hope being that it may motivate writers and producers to create better informed and relevant content.

Aside from finishing the essays, I have several questions and challenges I could use your input on. First, would content like this interest you? To start a YouTube channel, you need people to watch and hopefully subscribe to it. Initially you need about a thousand subscribers for the algorithm to take you seriously and start recommending videos to others. Do you presently watch YouTube and subscribe to channels there? What about Facebook or other social media. I presently don’t do social media at all.

Second, I’d likely devote more time to this project and post less here, would that disappoint you? I likely would start a site or blog or a Patreon where you could continue to contact me. The upside would be that stuff I post would be better curated wherever it ends up and I’d repeat myself less here.

Third, I have concerns about anonymity and the possibility of being ‘doxed’. I’m considering going to somewhat absurd lengths to be as anonymous as possible, and making it a feature of the channel. Some people advocate openness, transparency and being ‘out’ to end stigma, but my thinking is it may make a stronger statement to demonstrate that inaccurate and uninformed and unfair portrayals make it difficult for most people with any ‘schizo’ related illness to be ‘out’. The idea is to speak through an avatar and either alter my voice, or synthesize or get a voice actor to voice it. Not that I’m ashamed of my illness, but I talk sometimes about my brother and family who may prefer to remain anonymous, and a public persona may cause me employment issues. I’ve looked into the technical aspects of this, and it seems feasible and actually has a few advantages as far as video production is concerned.

Finally are there any subjects you’d like covered? So far I touch on Anosognosia, Stigma, Hallucinations, Delusions, interactions with Law Enforcement, committal and hospitalization.

Thanks for your help and support.

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Go for it, many SZ channels on the tube…

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I say do it, when people are struggling they look for help. I tried to run and hide and that didn’t work. I wonder if you have to have the blessing of who runs this forum.

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Great idea , yes another topic of rage and cursing at caregivers , why it happens ? also isolation , work , how it all makes you feel , just some ideas and thank you as these videos really help

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This is wonderful news. When I read your posts my first thought is always " this guy needs to write a book" !

  • Podcasts are maybe a better way to go if you dont want to be so visualy out there but
    Youtube is a wonderful avenue for learning. ( I would subscribe) One good example is Stephanie Lyn( life coach ) https://www.youtube.com/channel/UCAm2Q5XaKAkHSK-SZStujVg
    There are many youtubers that dont show their faces as they talk and teach on youtube… If you have good content it shouldnt matter.

Ideas: Thought broadcasting , Prodome phase.
Thank you for sharing your knowledge and experiences in this unpredictable and frightening disorder.

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Thanks. Unfortunately I don’t think I have the sticktoitivness to write a book. I’ve started a couple and mostly end up with unfinished chapters and disjointed outlines. The Center Cannot Hold says much of what I would say, and more eloquently.

I’m probably more concerned about my voice being recognized, as it’s a bit distinctive, but thanks for the podcast and content ideas. I’ll likely get into prodromal stuff. There’s a fine line sometimes here, as I see a potential to overreact and preemptively medicate as with ADHD. Drug use, especially cannabis and dopamine affecting drugs, is a prodromal concern as well considering increasing legalization.

I’m considering illustrating common delusions, thought broadcasting and other symptoms through familiar media. One reason I’m concerned about anonymity is I’ve lived with thought broadcasting and the thought of even minor fame is frightening. Celebrities who are ‘out’ with SMI like Britney Spears have both my admiration and sympathies.

I find some of your input insightful and a kind of information that I could use. Don’t worry about the downside, start somewhere and see where that takes you. There is always going to be someone who will find value in it big or small. All the best.

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Yes. Would watch it. I listen or watch utube already everyday.

Thanks!
Terry

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Thanks all for your feedback. It helps motivate me to focus my vision, finish some of the scripts I’m working on, and gives me ideas to further bog myself down :wink:.

For example, I saw Frozen 2 yesterday as I’d been developing ideas about the original Frozen and the Broadway musical that expands on it. I see the story line paralleling the experience of a person with a SMI going from prodrome to active illness and a caregiver doing whatever it takes to help her. Frozen 2 takes it another step by showing what comes next, and that caregiving and true ‘self-care’ is a life-long full-time part-time job.

I found the song ‘The Next Right Thing’ particularly compelling. Without giving too much away, the song speaks to the loneliness, depression and hopelessness caregivers feel when their charges seem lost. It’s especially poignant considering Kristen Bell’s open discussions of her experiences with depression.

There aren’t and can’t be enough stories that celebrate the quiet determination of caregivers. While I may stray into to other areas, my chief goal is to improve your lives and those you care for, and help you rise from your despair and do the next right thing.

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Did you ever start a YouTube ? I would look at it. I’m sitting here telling my 28 yo son about you , and how well you are doing. He just sits and stares at me like I have 2 heads. I so wish he wanted to be helped.

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Not yet, I’ve worked on about a dozen scripts. I do plan to launch it, but it will likely have to wait until next year. I have a couple of big projects I’ve launched with precedence. One may take me off-line or with a reduced presence in the Spring. I’ve decided to spend more time in the forum until then.

If you haven’t found them yet, you might want to check out Students With Psychosis.
https://sws.ngo/ - because they used to be Students with Schizophrenia.

If I recall correctly this grew out of a TED Talk a while back. If that’s the one, yes I’m familiar.

One of my motivators to start a YouTube channel grew out of wanting to do a TED Talk, but the prerequisite to doing a TED Talk is doing a cool thing. The problem was I had ideas like this gal and Elyn Saks and so on, and they kept getting actualized by others before I would get the chance. Hard to tell if I can blame this on avolition, or being busy or what. The only thing I seem to be consistent with is participating in this forum, but I’d like to do more within certain constraints.

Stay tuned…