Randye Kaye is the author of Ben Behind His Voices: One Family’s Journey From the Chaos of Schizophrenia to Hope (Rowman & Littlefield, 2011), and Happier Made Simple: Choose Your Words. Change Your Life (Front Porch Press, 2022). She’s also an actor, voice talent, radio broadcaster, audiobook narrator, teacher and speaker. She co-hosts several podcasts, including Schizophrenia: 3 Moms in the Trenches. She lives with her husband in Connecticut, and her children and grandkids live close by. Her dining room and living room are full of toys.
Dear Ben,
Life has not turned out to be what any of us imagined, hoped for you, when you were a little boy.
You: so bright, so sweet, so enthusiastic, so loving.
So many friends, so many talents. The future, so promising.
And then came schizophrenia. The great thief.
Oh, the symptoms presented in many forms before we – or at least I – understood what had happened.
As is so common with this illness, you don’t think you have it. You fight that thought with all the stubbornness you’ve shown since birth, Taurus baby.
But I know.
I know that, but for this brain condition, you might be independent, working steadily, maybe married and parenting – whatever it is you wanted for yourself when you dreamed as a child.
What we all wanted for you.
Your sister’s children might have cousins. You might buy me flowers on my birthday. You might meet old friends from high school or college for dinner and drinks.
But no. The great thief came along.
So, instead – hospitalizations, a roulette wheel of medications you still don’t think you need, and a succession of lost jobs, lost friends, lost opportunities. Lost milestones.
And yet you try. You try your best to shine – most of the time..
One of the things I love about you is your optimism when a new chance comes along. Maybe it isn’t always realistic, and maybe it doesn’t always work out, but you still try.
There was a decade of some success, when you were on different medications and more pieces of you fell into place. You earned almost 60 college credits. You succeeded as a restaurant server, once you found the right fit. You leased your own car. You paid your own bills.
You felt proud of your life – despite still living at home with your parents.
But then. But then.
There is always something.
Covid causing the restaurant crash. No job.
Marijuana. Escape with consequences.
More success at spitting out your medications, despite our supervision.
And, there you were, back at square one: involuntary commitment for psychiatric reasons. Bankruptcy. Move to a group home again.
I have lost you a thousand times – and like a favorite beaded bracelet that breaks and scatters all over the floor, I’ve found pieces of you over and over again, but never the complete set.
Sometimes I can restring the bracelet, though it never looks quite right. Something is always missing.
What’s missing is your clarity, your joy. What’s missing is your hope. What’s missing is your future.
My love for you is so deep that, like many mothers, I can forget how firmly entrenched it is into my heart, my very being. When you are doing okay, I rejoice. When you fall, I try not to worry, try to let go.
This has happened before. It’s your life. It is what it is.
But, oh, my heart. My heart sobs. It weeps for you.
But you seldom complain. You don’t exactly embrace with enthusiasm, but you keep going.
Last year you got yourself a job once again – minimum wage this time, but you didn’t complain.
You showed up on time, you did the work, you learned new skills.
But your body, now on a different, older medication that causes tremors, wasn’t cooperating.
Your employer thought something was wrong with your work ethic, not your health.
He had no idea you have schizophrenia. How could he, when you never would tell him?
You don’t believe it yourself.
And, even if you did – would you be hired if they knew? The stigma is very, very real.
So. Hours reduced, then down to zero. Not fired, exactly; just kind of squeezed out. Again.
And that was so hard for you. You had been so hopeful, so happy to have a place to be, and job to do – even when duties were reduced to unloading the truck. It still was a job. It still looked like a life.
And yet – you still try your best.
Despite all the disappointment you might feel when you look back at your life so far, you still try. You still hope, when the stars are aligned just right.
You will try again.
Meanwhile, you can be an Uncle.When you are with the family, you pull it together to play with your nieces and nephew. They adore you.
You put on a brave face.
But, inside…inside. What do you feel?
I understand why you might want to escape with marijuana, why you – in your words – “think it’ll make me feel good when I don’t feel good – but it doesn’t. And I still think it will work the next time.”
And you try to stay clean – for the sake of seeing your family.
You want to work, you want to have purpose, you want a future.
But the great thief, schizophrenia, won’t even let you know that it is not your fault. Given the choice – despite the evidence the illness won’t let you see – you would stop taking your medication, you would smoke more weed, you would rely on some magical fairy tale to make your life work somehow.
I’m so grateful that, for the sake of being able to be with the family, you agree to stay clean and sober and stay on meds. At least this week.
I’ll take it.
It’s the best we can do for now, and when I see your nieces and nephew light up to see you, run into your arms, and lead you to your old room to play Mario, my heart sings as best it can.
Every day that we get to make some new good memories to add to what we have, I am grateful
As I am grateful for your sweet, loving nature. You are doing your best,
I can only hope that life will give you more of what you deserve.
Love, Mom
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