#7: Instructions Not Included

(1) Robbie is my extremely happy, dashing, nineteen-year-old brother. But in addition to all of those things, Robbie has severe epileptic autism. My parents had him a little less than four years before I was born after five years of marriage. About three years after hew as born, Robbie started having seizures. They were pretty scary. My mom wouldn’t know what to do. She’d immediately go into a panic. I take it my dad was quite overwhelmed as well, but he had to keep his cool, otherwise no one would be around to help his wife or his son. The doctors thought it was just epilepsy, they thought that if we just medicated Robbie and kept him away from strobe lights he’d be ‘fine.’ They said that there wasn’t much more that they could do. But Robbie’s seizures just got more and more violent. Eventually, the doctors found a deformity in his brain consistent with that of autism. Robbie’s brain was fine, it just grew differently from everyone else’. And as my parents had watched him gain the capacity to speak, they watched him lose it. It was truly heartbreaking. They don’t even keep pictures from before Robbie’s regression. They prefer to think of this as the way it’s always been. Which is true, at least, for me.

The point of Robbie’s story isn’t to make you feel sorry for anyone with a mental illness or even anything like that. My point here is that statistics show that 100 percent of people in the United States love someone with a mental illness, and maybe when we met them, or when they were born, we didn’t know that they had these issues. However, when we figured that out, we didn’t take them back to where we met them, or give them back to the person who introduced us to them. We work through it. We try to give them everything that they need.

When Robbie was diagnosed, my parents didn’t try to return him or to fix him, the way you would with a defective product. They accepted him as he was, a person. Yet there are still so many kids and adults like Robbie stuck in broken foster care systems, living on the streets, in prisons and living with people who don’t fully understand them. They go in and out of the ER and the psych ward, with no support system outside of the hospital. These are the people who are falling through the cracks of our mental healthcare system. We need to fix that.

(2)There are a good number of local organizations looking to help these people with no one to turn to, such as the Middlebury Charter House Coalition, giving free meals and affordable housing to those in need. There’s also the Parent-Child center, giving families the support they need through home visits and therapy sessions. Then, there’s also CSAC, also located in Middlebury, providing educational services and care to developmentally disabled children. These are all just in Middlebury, and they’re all dedicated to helping in a different way. It seems like it should be enough, but it’s not. See, in the recent shift (over the past 40 years or so) from institutional to community-based care for those with mental disorders we’ve increased the quality  of life for everyone who had family or friends, with enough resources to support them, to turn to.

(3) The sad reality is that some people don’t have friends and family prepared to make the sacrifices it takes to care for them. And even if they do, the can end up feeling like a burden to those around them. Their disorder or disability isolates them. They feel alone, whether they truly are or not. This is why 100 Vermonters commit suicide every year. That’s 100 lives of 100 people that we can save every year if we can just take proper care of them. If we can just try to de-stigmatize and stop labeling people with mental illnesses. They’re not products– not damaged goods– they’re people. This is why they don’t come with instructions. If we can get people to just start seeing them and accepting them our battle’s already half-won.

The second bit? Taking care of them.

Image link: https://docs.google.com/presentation/d/1R1OZjyv45KbU6qT2NRDJ8N6OwyU0sTmQkQhT9rA-npo/edit?usp=sharing

Maisie Newbury

2 Responses to “#7: Instructions Not Included

  • Maisie, while I wholeheartedly agree that raising awareness about issues facing those with mental health problems is a worthwhile endeavor in its own right, I wonder if you might garner more interest from your peers in the TED-style presentations you’ll be giving if you can additionally define an action – a specific area of change that might help solve the problems you’ve identified. People are generally most motivated to join a cause if they feel there’s real potential to act and produce change. So if you were to introduce a possible way to, perhaps, help integrate into the community those who don’t benefit from a strong social network, you might generate a more receptive, engaged audience. I would say that it is a smaller-scale, incremental solution that is seen as most achievable. And if people believe results are obtainable, they’ll be more likely to invest their own resources in that solution.

    Hope you enjoy the retreat. I’ll be eager to learn what you thought of the presentations!

  • Maisie, I love Dana’s point about considering Actionable Steps here. It makes things concrete. They might be fuzzy and they might change, but let’s consider what they could be. Inciting a cultural shift and call to arms to provide the resources to address the growing mental health needs of all of us is paramount. From schools to ERs to not having enough clinicians, time and time again different entities don’t have enough resources (space, trained people, money, etc) and often times the resources that we do have access to are stigmatized. Talk about a cultural revolution to bring mental health out of the shadows! The path ahead should be exciting and could be daunting. You’ll want to think about and learn about who are the pioneers that we might have access to that are pushing the envelope about some of the things you care about. Let’s get in touch with them and use them as resources.

    I’m excited about our retreat.


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