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Living with…

It feels completely bizarre for me to fill in the above blank with “chronic illness” or “mental illness” when I think about myself. We have these images in our heads of what it means to be chronically ill, to struggle with mental illness, to have a disability. For a long time, I told myself, “it’s not that bad. I can still (work/parent/whatever).”

Until I realized that those were all myths and stereotypes and stigma. And by not taking these labels onto myself, I was perpetuating these myths. It’s a realization that I have had to make again and again. I’m not stupid. It’s not that I don’t get it. I have intellectually understood for ages. But sometimes it takes a doctor’s appointment on a Saturday night to remind you that this is real life. This is what you’re living with. And those layers of cultural conditioning can be strong and deep. We have to peel them back, piece by piece, until we find who we are underneath it all.

This is me.

I struggle with anxiety. I have OCD. I wake up in the middle of the night and wonder about whether my house is falling down. I re-play conversations, over and over and over. I can’t get to sleep. I fix and re-fix and fix the rearview mirror again and again, because bad things will happen. I get rid of everything in my house that I possibly can because I will internally combust if not. I will not pick up the phone, even if I see the caller ID. I just can’t. Phone calls take like 8 spoons for me.

I lived through trauma, domestic violence and abuse. I intimately understand the way that abusive relationships can be insidious and difficult to leave. I know that a mom can love her kids to death, can be amazing at mom-jobs, and still have a hard time walking out of that situation. I understand loving your father to pieces, yet also being afraid. I know what it means for the bottom to drop out.

I can be weird about sensory things. Showers are painful. I can’t wear shirts that touch my neck. I hate shoes. I never wear socks. I sit cross-legged in the car so that there is pressure on all of my legs. I have become so overstimulated in a store that I have left my full cart in the middle of the aisle and walked right out.

I have autoimmune & allergy issues, with the biggest being my thyroid. And some sleep issues that we haven’t quite figured out. So sometimes I hit a wall. I struggle to stay awake for even six hours a day. I spend my school breaks sleeping as much as anything else, and I feel incompetent, weak, and lazy. We watch television more, we play iPads more, we do all the thing that the mommy wars will ridicule us for doing.

But I’m also a really great parent. I am responsive and respectful. I listen to my kids’ needs, whether spoken or not. I maintain high structure but I support and accommodate my kids so that they can be successful within that structure. I choose connection over compliance. We make time to watch movies, to play video games, to go to the park, to travel, to swim, to do what they need and love. I am giving them a gorgeous childhood, filled with laughter.

I’m a fantastic teacher. I bring work home. I show up early and stay late. I am completely present with my students and teaching in a way that brings out everything that is best in me. I collect data and use it to drive my instruction, while also staying playful and true to developmentally appropriate practice. I connect with families. Learning how to be the best teacher I can possibly be for them is the top of my list.

I do yoga when I can. I go to the pool when my energy allows. I read books, mountains and mountains of books. I read the news. I stay active on various Facebook communities, trying to give back what they have given to me. I blog. And I try very hard to be a good partner and a good friend, always learning.

All of this can be true. I can be a great parent, a great teacher, and have an anxiety disorder. I can need to rest more than the average person and still be raising amazing kids who grow each day. I can be someone that goes above and beyond, that always has another project to do, and be someone who is a little bit of a mess sometimes.

It’s true of all of us. We are all both/and. We are strong and limited. We are brilliant and afraid. The doses may vary in each person but none of us are all-anything-all-the-time. When we give ourselves permission to be ourselves, messiness and all, to stop hiding — we lead the way for our friends, our family, our children. They see that “both/and” applies to them too — that mental illness or disability are part of who we are, maybe big parts, maybe parts that drive the way we see everything else, but they are parts of the whole beautiful, messy, amazing person that defies any and all stereotypes.

Stand as yourself, and stand tall. Be a parent with mental illness. Be a doctor with anxiety. Be a teacher with chronic fatigue. Be a friend who can’t always get out of the house. Be a customer who taps their toes and flaps their hands and rocks in place. Be a salesperson who cannot shake hands. Be a wife who struggles with attention differences. Be a grandfather who has panic attacks. Be you. All of you.

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It’s me.

I write a lot — well, not a lot recently, but usually — about how amazing my kids are. It’s true. They’re awesome, and they are awesome because of who they are entirely. Every piece. Neurodiversity and mental illness and personality flaws and brilliant gifts all wrapped into two charming and hilarious packages. It’s important work. It’s a battle against the cultural norms of our day, where those with disabilities are unseen, at best, and abused, more often.

But I realized I don’t really write much about myself, my stories. The stories that I actually own the rights to, versus the way I borrow my children’s respectfully and hope that I do their sweet selves justice. I don’t claim my own quirks and mental illness in the way that I could — the way that I should, if I truly want to model acceptance and celebration for my children.

It’s hard. I was well into my twenties before I accepted that I lived through extensive childhood trauma, that I have obsessive compulsive disorder, that I can be crippled with anxiety… It was my normal. And admitting that it wasn’t anyone else’s normal? What would that mean for me? What would happen with my friends? My job?

We still live in a world filled with stigma. We don’t think people with mental illness  or disabilities can be good doctors and teachers and lawyers. (They can.) One in four people that you know experience a diagnosable mental illness in any given year. One in four. They are your neighbors. Your friends. Maybe your family. They may not even know yet what that means or who they are. They might be me when I was 16, laying on the floor, alone, unable to ask for help. They might be me when I was 20, not knowing how to name my challenges but thinking they somehow meant I deserved less of a life, less happiness, less joy, less love. They might be me, now, 30, claiming their brain and owning the accommodations they need to have the life they wish. They are anywhere and everywhere.

That is why I need to share more of my stories. Speaking it takes away the stigma, and reading other people’s has made me feel less alone. Because so many of us are weird and quirky and beautiful — and also something of a mess. Sometimes a non-functioning mess, sometimes semi-functioning, sometimes functioning so fucking well that you just can’t even believe it. All the time, though, all those times, the floor times, the locked in the bathroom times, the rock star winning! times… We’re okay and unique and worthy and deserving of it all — Respect. Love. Belonging.

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How We Do It: Bringing Comfort during Hospitalization 

I know — I owe you a follow-up to language modeling, and it’s coming. But we are in the midst of a hospitalization experience and this seemed more relevant. As helpful as hospitalization can be, as necessary for physical or mental health, it still sucks so much. This is especially true for children who may be confused and scared, who are almost certainly anxious about when they will be returning home. And few hospitals are truly designed for the needs of children. Here are some of the ways we bring comfort to both the child in the hospital and the child outside. 

  1. Favorite toys. Each night we visit, we bring LM one small matchbox car. When Diva was in the hospital, we had the iPad with YGG. Stuffed animals are another great one. Small things that remind them of home. Pro tip for extended stays — don’t bring the most favorite one ever, because the risk of loss is too great.
  2. Books. We have brought a couple of our favorite books about love and family to LM, including I Love You, Stinky Face. We try to read them together before we leave, but it doesn’t always happen. We do always make sure to write a note on the inside cover and have all three of us sign our names. We leave it for him to look at and think about whenever he wants. 
  3. Pictures. The therapist we are meeting with this week printed pictures of our cats for LM, and this is the single most comforting item he has. They are just black and white pictures from a printer, so it’s okay for them to be lost or ripped or well-loved. When we can, we look at pictures with him of things we have done together. We’ve also taken pictures of him and brought those pictures home to Diva, when that’s allowed in policy. We sent LM a lot of pictures of a Diva after surgery and when recovering last year — it was an essential part of him knowing she truly was okay.
  4. Routine. We try our very hardest to visit and call at the same time every day, so LM can expect us and know we will be there. We leave with the same routine every day, where LM walks us to the elevator and exchanges hugs. We stick to bath and bedtime routines with the child not in the hospital, even if they are staying with a family member. Their world is upside down, sideways, and pretty much chaotic in so many ways during a hospital stay. We do what we can to add elements of the regular. 
  5. Flexibility. What? Didn’t I just say routine? Yes. It is a hard balance, but sometimes you just have to break the routine or the rules. Easy example — going to a bonus visit that you get offered last minute, if you at all can. Or letting Diva listen to more music and more television, because they are some of the only familiar things while we are far from home. Last year, we temporarily let her have a TV in her room when her recovery was long and painful.  Other examples — not expecting “please” and “thank you” and prompting a child’s super best manners when they are under stress. Carving out time in the day for an extra snuggle. Being patient with impatience. Listening to your child when they are saying with words or body language that they need a short visit today. So many ways to be flexible that are about connecting deeper with a child who is hurt and scared. 

Those are some of the things that we do. They are simple and common sense, but can be forgotten in the hectic life that is hospitalization. I know we usually bring a picture, for example, but we didn’t have anything on hand this time. And remember — you can do these things for yourself, too, not just for the kids in your life. We all need a little comfort when life gets big and rough. 

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Hard days.

Sometimes, we have hard days. We hear about hard days at school, or have hard days at home. Maybe something gets thrown, or someone screams. Maybe everything’s a mess and now there’s a hole in the wall. Hard shows up in lots of ways. When hard shows up, the first instinct is to MAKE THINGS CHANGE. We are taught by society, by our own upbringing, to threaten, to punish, to consequence. “Go to your room!” “If you don’t stop that, we are not having pancakes!” “That’s enough!” “Get back here this instant!” (And, yes, most of those lines do show up in the book No David. They are said way too much.)

We often feel afraid — what if I don’t get control over this? What if this happens everyday? What am I teaching? Am I a good parent? Am I doing this right? What if every day becomes hard? What do the teachers think of us? What will the world think of us? Why is this happening? Indeed, our minds are really quite good at playing games and spinning us in fear circles of “what if”.

But what happens when you have a hard day? What do you want from your best friend? From your partner?

I know that I’ve come home, slammed doors, stomped my feet, and been in a bad mood. I’ve been tired. I’ve been cranky. I’ve raised my voice when I didn’t mean to. I know that Husband does not send me to my room. I’m pretty sure doing that would make me slam another door. He doesn’t tell me that he won’t cook my favorite dinner unless I get it together, or that my actions will mean that we can’t go to the movies this weekend. Think of saying those things to your peers. Would that relationship last?

Instead, I might get a hug, or a hot chocolate. I get time to watch a show or take a nap, on a lucky day. I always get understanding. I get nurturing. I get questions of — “what can I do to help?” Why do we choose differently for our kids?

Today was a hard day for some of the members of our family. So we came home and didn’t bring it up. We followed our normal routine. We watched The Avengers and Diego and used the swing, doing all the after school things that help everyone wind their bodies down. We played video games and ate baked ziti (a favorite meal). We talked a little, asked a few questions, probed for feelings and underlying things. We briefly talked about how “stick together” means stick together on field trips AND at school AND at home (a point of confusion). Then we moved on to bath, with lots and lots of toys, and George. We compromised. Over the evening, the tension began to dissipate. The goofy antics of anxiety around “What’s going to happen? I had a hard day! Oh no! I’m in trouble!” relaxed. We snuggled and hung out. We acted out of love, instead of fear.

Tomorrow might still be hard. I don’t act out of love to manipulate tomorrow into being easy. I choose connection because of respect. I choose connection because that’s what we value, now and long-term. People will tell me that I didn’t do enough. People will say that I am not teaching about the real world. Here’s the thing — I think the real world has enough natural consequences of its own, and I don’t see my job as making up fake ones.  I see my job as being a soft place to land when things are hard. I see my job as working together to form proactive solutions for tomorrow. I see my job as meeting needs. I trust that kids do well if they can. I’ve lived the experience of kids doing well if they can. I know that everyone in our family CAN.

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No meds?

For a long time, it’s been a little hard for me to fully grasp why people would go off medications or refuse them. I intellectually understood the argument, but medications have changed my life so much for the better. I am calmer. I sleep better. I am more pulled together. I am blessed, though, in that my medications have had minimal side effects on me, other than weight gain.

Until my prescription wasn’t called in for a week, and I ended up having to miss quite a few pills. Yes, I started looping things over and over again in my head, unable to stop thinking about the things that scare me. Yes, I got stuck fixing things a few times, moving things around and around and lining up the angles just so. Again and again.

But I also could figure out what needed to be done around my house, with my curriculum, with my files, with my calendar… I could hang things on the wall in a beautiful way, draw straight lines, move around furniture to create an accessible space for my daughter. I could remember what needed to get done. Emails that I had forgotten about for weeks popped it o my mind and I handled my business. These might seem very small deals to you, but they are ME. That is who I am, also. I am organized. I have a memory that catches the details. I read books and clean house and organize things compulsively, sometimes redoing the same lesson plan 5 or 10 or 15 times before being able to let it go. That is ME.

It feels less natural to be back on medicine than it felt to be off. I like me on medicine. It takes the edge off enough that I don’t feel angry inside or balled up into a mess. I can get out of bed and feel joy regularly. But there are pieces of me that fade and there are other pieces that disappear. Mostly, I’m still me. Mostly. I’m me enough that I stay on my meds, that the weight gain and the slight dulling are worth it. That’s probably not always true for everyone, though. I get it now. I get the weighing of the decision, of yearning to be yourself, completely. I get that everyone’s decision will be different. And not only that, but the same person may make different decisions at different times in their life. And that’s okay. It is totally okay.

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What is there to do?

Everyone has written about Robin Williams, but I haven’t. I don’t even know where I would begin. I’m mostly grateful for the pushback against stigma, grateful for the ways that we can try to make meaning and move the world forward when we feel like we are drowning in sadness. I appreciate the push-back against the myths of selfishness, of weakness, of just needing to get control. Honestly, anyone who says that has never experienced the utter despair that just captures you there on the bathroom floor, everything aching and alone and hurting. Or, the numbness, the time when there is just nothing left, nothing, nothing. There is no logic. There is no rationality. There is no weighing of choices. There is simply a black canyon hurdling towards you, with nowhere to turn. There is a loss of will, a floating bleakness. There is nothing. Words cannot begin.

I only wish that posting a telephone number to a suicide hotline was enough to stop that train. I wish that asking someone how they are doing and calling them was enough. I wish that encouragement and love and cheer and jokes and hugs and holding space were enough. They are good things to do. They may help people who are still on the edge, who are teetering. They are some of the actions of Love in the world, and they are never without fruit — even when we do not get to see the ripening.

It’s not enough though. I’ve laid on the floor. I’ve lost one of my best friends in the world to suicide in high school, and been one of the ones left behind. I’ve had friends lose fathers and dear ones. I’ve struggled with all the questions — what could I have done? What did I do wrong? How could this happen? Didn’t they know?

It’s not about any of that. We wish it was that easy. We wish that it could be solved by things that are so easily DO-able. We want to act against it. We want to make sense of it, to reassure ourselves that we will lose no one dear to us, or that we would never be surprised by such horrific events. We can’t. Sometimes, there is no sense to be made. There are no reasons or facts that can make the world okay again. There is no way to predict.

My son is anxious and impulsive. I worry about his teen years. I worry about his adult years. I worry about the times when he will surely want to go off medicine. I worry about the way he could do something, in a moment, in a flash, in less than a second, that would mean that I lose his bright and charming smile forever. I am anxious and fearful. I worry about finding myself back on that floor again. I worry about the ways that I hide my sadness and anxiety. I am afraid that people would think less of me to know the real me, the way I straighten my bookshelves to line up with the tiles or stay awake until 3AM wondering about what comes after death. I am fierce and brilliant and amazing, but I am also so afraid to show anything else except the things the world has deemed good. I worry that no one would notice that something was wrong until I was too far gone to come back.

Even in my own life, I don’t know what I can do to be certain that these things will never happen. Certainty is a joke, something that we cling to in this life but are never really given. There is only one thing that I know to do, and that is to keep writing and talking and speaking. To stop hiding. We have to make it okay to ask for help. We have to make it okay to talk about these dark things. We have to make people feel less alone. We can’t let people think that they will lose their jobs, their friends, their family, their respect and their love, because they need medicine or therapy or don’t even know where to begin. We’re focused on over-medication and over-diagnoses and natural cures and bright-side thinking. We watch shows where we are told all about all the bad things that prescriptions can do, or how we need to just get it together, or how only selfish and/or bad people would consider “blah-blah-blah”. New drugs and treatment are only explored if there is a profit potential, or a celebrity leading the cause.

Meanwhile, we are losing friends every day. In the US, we lost nearly 40,000 people last year, people who weren’t so famous or funny, but who brought light and joy to someone’s life. Four people every hour. One person every fifteen minutes. Someone’s life was lost as you were reading these words. And that’s not even beginning to look at the pain of the 700,000 admitted to emergency rooms for self-injury.

We can’t stand there and let that be the way that we live. We need to live with our arms wide open. We need to stare into the dark and know that depression and despair and anxiety and rage and loneliness and aching are all just as much part of the human experience as joy and hope and love. We need to shine a light and say that it’s okay to feel these things. It’s okay to write these things. It’s okay to need help for these things. You are still you, always, no matter what.

And when that’s not enough, when that doesn’t stop the dark tides, when our friends are there on the floor, we need to be there with them. When we lose yet another beautiful, brilliant being to the depths of despair, we need to circle around their loved ones, hold their hands and wipe their tears. We won’t find reasons for the grief. All we can do is try to make meaning from the ashes. To be the love that rises, again and again.

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On being real.

I follow a variety of blogs on Facebook, and my favorite – hands down – is Diary of a Mom. I don’t know a lot of family blogs that have that same combination of love, respect, and word-magic. Hers and Emma’s Hope Book are pretty much all I’ve got on my list right now. They keep me tuned into my center, my foundation for writing, which is always about respect.

Today, someone asked why she doesn’t post pictures or more detailed descriptions of Brooke’s hard times. They said that the world needs to know. There were lots of beautiful responses, including her own. They were all variations of how we can raise compassion and advocacy by showing humanity, but without disrespecting our kids so. Who among us would choose to have a picture of our worst day shining from a Facebook page? Who among us would choose to write about the times we screamed, the times we broke something, the times we just totally, completely blew it? We could. We don’t. We don’t share those moments on our Facebook statuses or even in most of our conversations with friends. We don’t even share our own, so why should we share these moments on behalf of our kids — often without their consent?

Obviously, I agree. I use pseudonyms and don’t post pictures of faces on the rare occasion that I even post one. While many close friends & family know this blog is “me”, I don’t want the wider world to know who or what we are talking about. If I wrote a book, I wouldn’t use my name there, either, for the same reason.

Yet, on the other hand, I struggle with how real my writings should be. I don’t know that it’s real to talk about all the celebratory moments only. I mean, I focus most of my attention and heart on all those moments of love & connection, so they do make up a huge amount of my Facebook posts. They are the moments that I want to capture, a love letter to my kids for them to later read and see the ways they shine. But they aren’t everything. So then what?

I don’t want to post videos of my darling Little Man mid-hallucination or while destroying property. First of all, who the frick has time to do that? The few times that I have had to for medical reasons, it only added to stress and mayhem of the moment. I have taken photos of the damage afterwards to show my mom, my best friend, or my support group, because I need to say, “Am I alone? Has this happened to you? What do you think? What do I do?” They don’t make it to my Facebook wall, my picture album, or the blog. It feels skeevy on every level, like taking a picture of my daughter on the toilet and posting it for wide consumption.

My writing, though — that’s where I struggle. It’s a struggle that I’ve had since I started this blog. How do I share the hard stuff without disrespecting LM or violating his privacy? How much do I share? The point of this blog, after all, is to humanize all of mental illness & disability, not just be another part of the inspiration-porn that often surrounds our kids. Reading real stories, stories from Far From the Tree, from January First, from other memoirs & families — they gave me hope in a way that no textbook or doctor had. They made me feel that I was not alone. They showed me that LM is not alone. They showed me that we can do this together, including keeping him at home. He will make friends, like him and not like him, just like we all do. He will have a life that is all his own, with his own unique celebrations and stumbling blocks. We will keep putting one foot in front of the other. I write because I didn’t want other families or people to feel so alone through the journey. I didn’t want to hide my child’s difficulties or have shame surround his hard times. It is what it is.

Still, I respect that this is his story (and her story!), not only mine or ours. I am a partner in this journey. I am an advocate. I am not him, though. I am not him. So I don’t know that I have an answer to this question. I think it’s a struggle that I face each and every time I write. I know I will make mistakes. I am sure there will be times when I haven’t shared enough, and there will be times when I share too much. I will change my thoughts on this, depending on what we are going through and where LM is in his life. I know I will anger people, both families and self-advocates. I will probably anger different people within the same blog post. More than anything, I seek to write in a way that is filled with love. If he can feel that love, then that’s what matters more than anything.