I go to a Rogers Hospital facility four days a week, so it goes without saying that I think of Mr. Rogers all the time now.
No no no, it does not go without saying. It’s simply not true. BUT, as my Nick would say dramatically before digging into a story that I’m sure he finds really interesting — in a sort of New Jersey twang that Anthony has taught him, somewhere between stereotyped 70’s mobster and Donald Trump — Lemme tell ya something.
Friday evening my friend Robin came over with her two boys, twins who were born within a week of Nick. They’re leaving town soon, so we have to fit ten years’ worth of twice-a-year playdates into about 6 weeks. It was just going to be a quick get together, but she blew in with her delightful mom, a rotisserie chicken, a pizza to throw in the oven, and a box of chopped fruit. Also champagne and chilled wine.
I knew exactly what she was doing; she knows we’re suffering. She also has a bag full of detritus to deal with in her own life, but she came here and filled my cup pretty well.
At Rogers, they want the parents of kids in the program to talk about our own needs with each other. And I’m surprised to report that I’m resistant. I don’t really want to talk about it with those parents. We have very different personalities on the face of things, and I’m not sure these hard-core Wisconsinites (Packers gear, every day) will appreciate my TMI attitude and somewhat bawdy sense of humor about our situation and about Jesse’s behaviors.
But Robin pointed out something I don’t really think about, which is simply this: because of my ridiculously open attitude, I have a tremendous amount of emotional support. My family may suffer, but we rarely do it alone. These other parents, however, may be more normal. That is to say, they may feel ashamed and alienated, perhaps even within the scope of their own families. They may not have anyone to really share their suffering with, and they may have a lot of reservations about opening up and receiving support. So talking about it in therapy is important.
That hadn’t occurred to me, big-mouthed and grumpy recipient of much love, support, and encouragement. And so Mr. Rogers comes to mind (even though it hasn’t been a wonderful day in my neighborhood for some time now). We’ve all heard the story. When he was a boy and saw scary stuff on the news, his mom put it in perspective for him:
“My mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of disaster, I remember my mother’s words, and I am always comforted by realizing that there are still so many helpers — so many caring people in this world.”
My family’s travails are hardly newsworthy. Still, even in this infinitesimal space we occupy in the universe, in the teeny tiny disaster that constitutes my family’s current life, there are the helpers all around us.
* * * * * * *
My brother Mark has a wickedly cynical and comic insight into human nature. I can always count on him to make me laugh and cry at the same time. We had a typical far-ranging chat a few days ago, as Jesse and I were driving back from a tough afternoon session at Rogers. Mark regaled me with classic takedowns of a couple members of our family, and I remarked, “I would love to hear how you make fun of me when I’m not in the room.”
Mark answered promptly, “No, we don’t make fun of you. We just worry about you.”
I was a bit taken aback. “You worry about me? Why would you worry about me?”
There was a short pause before he answered, deadpan. “We just worry that Jesse’s sucking the life out of you.”
Mark and I burst out laughing. It was a raucous, bittersweet shared laugh, with much rueful head-shaking. Mark was making it funny, but I also knew he meant it. It was his poetic, comic way of saying, Carla, your family wants you to be well, we want you to take care of yourself. You matter.
* * * * * * *
Jesse missed almost a full week of school a couple weeks ago, because we were going to Rogers daily for our initial work-up and orientation. The Friday of that week was her birthday.
Her behavior had been even more off-the-wall than usual before she stopped hitting school. Just nuts. She has disrupted her class frequently and daily this school year with bizarre behaviors and word blurts. She has caused a lot of trouble. These kids know there’s something wrong with her. In fact she’s told them, honestly and frankly, about what she struggles with.
When she returned on the following Monday, a pack of handmade birthday cards from her classmates was waiting for her. She pulled them out of her backpack slowly and deliciously when I picked her up. I could sense her disbelief. She read them to me one by one as we drove home. I was in tears by the fourth card.
We love you! Stay strong and positive! You are one of the best people ever! I hope you have an amazing birthday! I hope you come back soon! You are the dearest friend. You are nice and caring! I hope you have a fantastic day when we get to see you again. The best girl in the world.
* * * * * * *
Jesse and Nick attended the nature preschool operated by the local Audubon center. Jesse was a very challenging little preschooler, but somehow we built strong bonds with a few of the teachers there, amazing women who opened doors in my heart as a parent and allowed me to see Jesse in many different ways than what came naturally to me.
One of these teachers shares a birthday with Jesse. Last summer, after hearing about some of Jesse’s struggles, she reached out and took Jesse for a hike and filled her cup. Just last week she touched base to share love and hope — eight years after she became Jesse’s teacher. Another preschool teacher sent me a note last week as well, full of love and empathy, and reminders of how precious and unique a child Jesse is.
I was reduced to tears, though the feelings welling up were inchoate. Somewhere in the range of gratitude, awe, and relief. I don’t know what I ever did to deserve this kind of support, but I know what Jesse did. She has always walked with her curious eyes wide open, engaged and conscious — which may explain why life terrifies her so much.
But anyway, preschool teachers? Maximum helpers, Mr. Rogers style.
* * * * * * *
Anthony’s colleagues, our friends and acquaintances, Facebook friends, distant family, even total strangers who happen to read my blog posts. Everywhere we turn, there’s someone with an encouraging word — you’re making the right choices, don’t give up, Jesse is amazing — or an offer of practical help, like the family that took Nick home from school at the last minute so I could get Jesse to therapy one day. Life savers. My old college mate Jeanne, who declares that she’s the crappiest friend ever — totally wrong, because I’m the crappiest friend ever — sent me a loving and hope-filled note out of the blue. Mates from around the world chuck my figurative shoulder and lend me an emotional hand day by day. Cup-fillers all.
Just as important are the people who break with stigma to tell me about their own and their children’s struggles with mental illness, their own journeys to wellness, their own reliance on meds and therapy to survive. These aren’t celebrities who get airtime out of their disclosures; they’re just incredibly decent folk who want to help alleviate my family’s distress. I’ve heard from total strangers and I’ve heard from friends I never would have guessed have survived mental illness. The wall of silence makes us feel alone, but it’s a paper wall. Anyone who walks through it is a helper.
* * * * * * *
The problem for people dealing with mental illness is that there’s no news coverage telling Mr. Rogers’ helpers that we have a need. We have only our own voices. When I started writing about this stuff, I thought I was just getting it off my chest. But I’ve since realized that I’m also crying out for help. I’m making my own newsreel, because I don’t have the strength to survive Jesse’s mental illness in silence, by myself. I need to laugh and cry and share and laugh some more about it all, and I need to teach Jesse to do the same. The only alternative is emotional death.
So here’s today’s two cents from Carla, if you’re reading this and you’re suffering: ask for help; then look for the helpers. They are everywhere.
But not in a creepy way.
They’ll come through for you and yours, and they will lift you up. They’re listening, watching, waiting to catch you when you fall. You just have to let them know you need them… and then don’t be too proud to accept what the helpers offer.
I know what you’re reading here is weirdly positive and maudlin for this grumpy girl. Don’t get me wrong. I still think people suck. Humanity is full of blood-sucking not-helpers who get off on others’ suffering and failure.
For instance, there’s the person who overheard me at a party telling someone about Jesse’s OCD and our move to more intensive treatment. She interjected to tell me about a neighbor who’s child has struggled with “that same problem” since childhood, and now she’s in her twenties and it’s been AWFUL. Shakes head to accentuate miserable failed life.
Note to self: not a helper.
So yes, I still think people suck.
But also they don’t.