Primary Colors

By Henry Boy Jenkins

red green and blue eyeI look like any other customer in the coffee shop, except my jeans are fire engine red, my hoodie is lime green, and I’m wearing blue and orange platform sneakers. Not by design, just because. In a sea of suits and glumness, I’m a lighthouse of happy. Today. In this moment. Right now.

On those days when I don’t feel fractured and gray, I let my colors create a cushion between me and the Big Bad. Nobody needs to know that I live with schizophrenia, but if it comes up I’ll talk about it. Mental illness is a part of the fabric of life. It’s just dyed a different shade of dealing.

There will always be rough days, so I cherish the times when I’m doing well. I’m not sure how I know the difference—I just know what it’s like when it’s not scary. I have a foot in two realities, but I’m not carabining for survival. I’m just standing in line. Like a normal person.

I always go to the same cafe. The bakery goods sparkle and the coffee smells like earth. It’s enchanting and simple, another pillow between my expectations of an apprehensive public and the symptoms that betray me.

Familiarity and patterns keep me safe in the presence of sameness. In the rhythm of repetition, I create a space within me where I don’t shut down. Something happens. Something better than gray. I open up.

I ask the barista how their day is going. What for others is a simple gesture can be a major effort for me. If a thought disorder is a prison wall, then I’m determined to scale it. With conversation.

I comment on the weather, they compliment my clothes. I mention Bring Change 2 Mind, they share a story about depression. Schizophrenia comes up and we talk about it. They’re sympathetic and friendly, and in that moment unafraid. A connection is made because we both took a chance. I walk out of the shop feeling, to quote Dr. Mark Vonnegut, “Just like someone without a mental illness only more so.”

When I find myself struggling, I write my thoughts down so that I can discuss them in therapy. It helps having notes to refer to since I deal with a memory deficit. Talking about my disorder and how it affects my life is more important than what I think people think of me.

Before I started taking medication, I asked my doctor every question I could think of. I wanted to be sure it was safe. He helped me monitor its effectiveness. This has proven to be worthwhile; I’m more willing now to discuss different meds. I know there’s a path I need to follow, and I’ve learned that I don’t have to walk it alone.

Friends and families of people with schizophrenia can sometimes preempt a relapse by catching some of the red flags, like increased isolation or changes in sleeping patterns. Keeping track of previous symptoms might offer clues about what to watch for in the future. Maintaining a record of medications taken, how frequently, and at what dosage, is very important.

It might be helpful to have their doctor’s and therapist’s numbers on speed dial. To ensure the best course of treatment, be prepared. As people who care, you’re not alone—professionals are there to help. It’s teamwork.

Behaviors based on hallucinations, or statements stemming from unusual beliefs, might seem strange or off-putting to you, but to your loved one with schizophrenia it’s all very real. The trick is not to challenge the delusion. Instead, talk with them about things you have in common, topics of interest other than the one they’re fixated on. There’s no right or wrong here, just one person communicating in color to another who’s seeing in black and white. Remember—at the core of your relationship is love. You are their lighthouse in a tempest of fear.

It may be as hard for you as it for them to accept their diagnosis, but surrender affords you the necessary strength to discover hope and take action. Help them to establish a treatment plan that works. Otherwise, the basic need for human interaction might fall by the wayside, and stigma and discrimination could discourage them from a healthier, happier life. A life filled with color by design. Just because.

There will always be rough days. Cherish the times when your loved one is doing well. Mental illness is a part of the fabric of life, and gray is just another hue on the spectrum.

 

17 responses to “Primary Colors”

  1. Monica says:

    Wow yet again this one touches our life!!!!! So many familiarities but different in such a resembling way!!!! You make me think as a caregiver very deeply about some of my sons thoughts and it just sends me further in my understanding!!!!! I always thank you big for your blogs and each one is better than the last!!!! Thank you again for putting into words what I think about in this life of my son and I!!!!
    You ROCK HBJ and you change lives and thought patterns about mental health more than you’ll ever realize!!!!!
    Take care!!!!
    Many thoughts and prayers always!!!
    Monica

    • Henry Boy says:

      Thank you, Monica. Sometimes the differences between people seem to set them apart, but when I look for similarities, I know that’s where I find comfort. Both need to be acknowledged and celebrated; it’s a wonderful gift, this life. I’m happy that my blog helps you two connect. That’s why I keep writing. Thanks, again! 🙂

  2. Connie E says:

    Thank you for your brave story.

    • Henry Boy says:

      You’re welcome, Connie. If you have a story to share, please send it in. Every little bit helps to grow our community and fight back against discrimination and stigma. Thanks for commenting. 🙂

  3. Liz says:

    Henry Boy, I ALWAYS look forward to your posts.
    Thank you. And welcome back. I feel like you’ve been away for awhile – or perhaps I just didn’t see your posts. Anyway, keep writing. It’s always a pleasure to hear your thoughts.

    • Henry Boy says:

      Thanks, Liz. I took the month of July off, but I’ve written five pieces since then. We used to have a link to a digest; now the trick is to just click on our names for the link. And wow, since my little frosted mini-break, it seems like readership has quadrupled! I’m so happy that so many people are reading and meeting on BC2M. We’re gaining momentum as a community of like-minded individuals, and that can only be a Good Thing. Cheers! 🙂

    • Henry Boy says:

      PS: Click on the link “Search By Contributor” on the main blog page for our individual digests. Have a good read, Liz! 😉

  4. Carol S@ says:

    My lighthouse, Henry, is you ! Helping me to navigate the waters of my loved ones illness. Since I struggle with anxiety, too, each setback or triumph is a family affair. We’ve had a rough week, yet come through fine. I feel optimistic after reading your blogs. As my child & I tell each other, “We’ve got this! ” 🙂
    Thank you so much, for being you. For guiding us. You are a gift ♡

    • Henry Boy says:

      I’m sorry to hear that you two had a rough week, Carol, but also relieved to know that it’s behind you now. I’ve been though a tough run myself for a while, but communicating with our caring community on BC2M has helped me maintain a necessary focus. Thanks for your kind words and thoughts. You two definitely “got this”! 😉

  5. Julie B says:

    I’m so happy to read someone who has expressed feelings and thoughts so beautifully and perfectly that I can’t think of the words for. I have so much going on in my head and heart but I can’t adequately express it and I always wish I could articulate it so my friends could better understand. It’s a more depressing stigma when your friends look at you through that lens. Like oh another bipolar episode thing. She uses that for an excuse for everything when she’s just nuts. So hurtful and yet I feel frustrated because I want so badly to explain yet I can’t abd it doesn’t matter. The few loyal friends do sort of get it and are just there for me thank God. Thank you HBJ

    • Henry Boy says:

      Thanks for commenting, Julie. I so totally get what you mean about having someone there to express what we can’t. I watch movies for emotions when I can’t find mine; the actors portray them in ways that I can see when the world seems wonky and intangible.

      It always feels like social conditioning just reinforces stigma; even my friends and acquaintances aren’t immune to it – it runs so deep. Having positive examples in the media sure helps, though, and that’s why I’ve devoted myself to communicating from my perspective, and why I encourage others to share their stories. The hurt and frustration is so harmful and frustrating, and for me, anyway, it tends to feed my own self-stigma. Makes it a challenge to stand alone, which is why it helps to find like-minded individuals. Again, big challenge, but I keep at it. I sense that you do, too, and I support that big time. Cheers, Julie!

  6. Lee says:

    I can relate to everything you’ve written in this essay, and especially, the idea of having one foot each in two different worlds. In my recovery experience, I gradually learned to stay present to my chaotic thoughts and present to a more consensual reality – simultaneously.

    • Henry Boy says:

      Hi, Lee – thanks for the comment. It took knowing the difference before I could accept the concept, but once I did, I found that when I could hang on to the discernment, I could navigate fairly fluidly. Not always, as my detachment’s fairly pronounced, but often enough that I can help others understand me better as I work to do the same. Kudos to you for implementing the mechanics. We do the things that make us stronger.

  7. Cindy says:

    Love this! “There’s no right or wrong here, just one person communicating in color to another who’s seeing in black and white.” As a reunited adoptee of a biological mother who had schizophrenia, this is an excellent descriptive for the way she lived her life.

  8. Elizabeth says:

    I’m a caregiver for my mother who has dementia and now my son who is different from mental illness. I always tell people I can only tell what is coming up next, lunch, dinner, a nap, etc. My mother’s frame of reference is gone. I am her lighthouse. I love that you wrote to family members, “You are their lighthouse in a tempest of fear.”

    Thank you for letting us in so we can understand better how to help.

  9. trixie says:

    I love what you guys are up too. This type of clever work and exposure!
    Keep up the terrific works guys I’ve incorporated you guys to my own blogroll.

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