What a way to start off mental health month…with a meltdown, right? But that’s exactly what happened.
Although Adam and I have never formally defined our roles, there are certain things we just fell into doing–he has editorial skills and experience that I don’t, I can do things with web pages that he can’t, and we do our best to teach those skills to each other whenever we can. One of my tasks is to keep up our calendar.
I’ve talked about the calendar thing before. Back in March, for Women’s History Month, I wrote about how gender and expectations have landed the calendar, and other administrative tasks in my lap. And how I have some anger and other strong emotions attached to that. Periodic tasks like National Poetry Month? Those are mine to manage. Which meant that I knew as May approached that we were going to have to address Mental Health Awareness Month.
I’ve had a note in my file to write about mental health for a while. I even started a piece about it a few weeks ago, and it didn’t work, so I scrapped it and wrote something else instead. I knew that I’d have to write something this month about Mental Health Awareness Month. But I hadn’t planned on doing it today. Right after the celebrity gossip sites are filled with stories about country music singer Naomi Judd’s suicide. I hear the universe laughing at my plans though.
See, it’s been a dark place here for the last month or so.
Adam and I have both talked openly about our own mental health struggles. It’s something that came up often as we laid out our original vision for 2 Rules of Writing. How to manage our own mental health. How to make sure that the other was okay. And how to make sure that we held space for our writers as they needed it. Holding that space for our writers also means holding space for ourselves. And about how much harder it is to reach out when you’re at your darkest places.
I’ve been in one of those really dark places for a little while.
April Used up my Spoons
April was a really dark month for me. My spoons, which are already tightly rationed, were in even shorter supply. It’s true that the last time I expected to be totally pain free, I was in high school. On a good day I wake up physically feeling like I have the flu or a high fever. And not the part of where you think, “I can push through one more day of work and then rest for a few days,” but the part where you have to rest.
I want to talk about spoons for a moment. I expect that by now, most people are familiar with the idea behind Christine Miseradino’s Spoon Theory. You might, for example, start your day by getting up and getting ready for your day. My days start with a baseline pain check in and first dose of medication. What hurts, how much does it hurt, and what are the essential tasks that I have to get done that day? Then I wait for a little while until that medication has started to work before I really get moving on my day, having used some of that waiting time to figure out if I can handle buttons, if I can manage pants. And I have to assess what else I’m doing–am I planning to be out? With my wheelchair or walker? Will there be someone else pushing the chair? Everything is finely calculated.
The last time I woke up expecting to be pain-free, I was in high school. A good day for me starts at about a four on the pain scale.
Pain is also a Mental Health Issue
But those numbers don’t tell the whole story. Those numbers might tell you about what my body is doing. That when I put my foot down on the floor in the morning, I’ll only exhale deeply. I won’t swear or wince (or at least not more than usual.) Or that I should choose a shirt that pulls over my head, which will involve only a moment of discomfort while I wrestle my arms into it, because I’ll need to be able to manage getting a jacket on and off during the day.
The numbers don’t tell you about the exhaustion. That hurting all the time is tiring. The constant calculations, the bargaining in my head? They wear me down. For me, part of the chronic illness package is fatigue. Is it really fair that managing the chronic illness stuff just adds to the fatigue?
My day-to-day existence is some degree of tired-and-hurting-enough-to-have-to-think-about-it.
Grief for the Big Things
Pain this bad takes up space in your life. Always. And anything that was in that space before gets shoved aside. There are things I can’t do anymore because of the pain. Big things. And I have had to grieve for those things. It’s not hard to imagine grieving for the big things that change with chronic illness. The things you find that you give up. Dancing. Playing viola… While I haven’t given it up completely, knitting is one of those things for me. I can’t hold needles, especially small ones, the way I used to. When I can knit, I’m much slower than I used to be. It takes much more effort. And there are long, long stretches where I just can’t pick up the needles.
I loved–still do, the experience of seeing things take shape from nothing into something beautiful. I was hoping one day to be able to do a sheep-to-shawl project, from spinning my own yarn to creating my own knitted project out of it. It’s easy to see how I’d grieve over that. People around you are okay when you break down over the big things. Your support system expects that.
Grief for the Little Things
Who gives you permission to break down over the little stuff? The everyday tasks that become so much more. Making a cup of tea. Going to get groceries. A spontaneous kitchen dance party. Those are the things that I want to cry about far more often than the big ones. Even if sometimes crying about the little thing leads to crying about the big ones. As Shrek says, though, “Better out than in.”
Shrek has some good advice here. There’s an expectation that chronic illness should be faced with bravery. That disabled people are inspiring or strong. That there’s a right way to be disabled. Breaking down all of the ways that systems are set up to keep disabled people dependent, infantilized and in poverty is too complicated for this piece. But trust me when I tell you that disabled people are neither inspiring nor strong. That’s a big lie you’ve been fed to make you feel good.
The Right way for Me to be Disabled
The right way for me to be disabled is to be honest about having bad days. About having sad days. And days where just existing hurts too much sometimes.
The right way for me to be disabled is to limit or cut out people who, however well intentioned, think that what worked for their sister-in-law is what I should try. “Cut gluten from your diet.” “Oh you need to take more vitamin B.” Everyone knows someone whose chronic illness was magically cured by some powder or potion or crystal. The people I need around me are the ones who are going to know that if I suddenly need to change plans, it almost certainly isn’t about them, but about making sure that I’m taking care of myself. People who know that I might say “I would love to do that, but if I have to drive there, it will be too much. I know it’s out of your way, but can I get a ride with you,” and respond in the affirmative.
I need to be around people who aren’t going to look at the recommendation to take a daily walk to help with depression and wonder why I’m not doing it.
SorryNotSorry but I Don’t Want your Advice
That may sound really ridiculous. But it’s the people who say “just walk to the end of your driveway” who don’t understand that, as much as I’d love to do that, I would have to calculate what I’m giving up to do that.
The people I need are the ones who are okay with my having dark days, and not always being some shining example of how a disabled life has value. Almost anyone likes it when I text a silly picture of the cats.
But of all the people who love those pictures, which of them are the people I can text and say, “I’m having trouble imagining thirty days from now”? Who among them will respond without dismissing my feelings with platitudes like “You’ll be okay,” or “tomorrow is another day,” or “It will get better.” Sometimes even, “How can I help,” isn’t the right thing to say. Not that the help isn’t needed, but in those dark moments, sometimes the offer of something specific goes a lot further–”I’ll call you in a little while,” or “I’m having Chinese food delivered to you so that I know you’ve eaten something,” can be a lot more helpful than “what can I do to help?”
When you’re helping a drowning person, you don’t ask them how to save them, you grab the equipment you know you can use. Sometimes that means “I can make this phone call to a doctor/therapist for you,” or “I’ll sit with you while you make this phone call.”
Sometimes Mental Health is: “It’s NOT going to be Okay.”
There’s a lot to be said about wanting to help when things are feeling dark. But it needs to be real help, not buttering the cat. And when I’m in the dark like that, sometimes what I need is reassurance.
Reassurance that it’s okay for me to be sad. That it’s okay to talk about the things that hurt or are difficult to do.
Reassurance that I’m still valuable, important and worthy even if there’s a lot that I can’t do or that I need help doing.
Reassurance that I don’t have to promise you that I’ll be okay a week, a month, a year from now.
Sometimes all I can promise you is that I’ll look for the sunrise. And sometimes that has to be enough. Because after one sunrise, there’s another. And tomorrow, you can ask me to promise you that I’ll look for that one, too.