A Mental Health Story — Liz James Writes

Two years ago, I had a Big Crash. It doesn’t show up here on the blog, because this blog only started a year ago. But I was Facebooking about it. Facebook, of course, tends to disappear into the ether… so this week, for my friend who is having a hard time, I went back and collected this series of status updates.

From Oct, 27th, 2016:

I’ve always said that when it comes to mental health, I have “the equivalent of a bad back and a trick knee”. A few weeks ago, I did the mental health equivalent of throwing out said back.

I was diagnosed with bipolar disorder in university, but when I plunged heart and soul into the rigorous routines that are recommended for that disease, I found I was able to remain stable enough that the highs and lows were manageable. I decided that the whole thing could probably be chalked up to working through a dramatic childhood and adolescence, and stopped really thinking of myself as mentally ill. I figured I was “cured” more than “controlled”. Over time, I relaxed my routines, and even started ADHD meds that are contraindicated for people with bipolar disorder (which I felt I no longer had). As things deteriorated over the course of several years, I began fuzzily clueing in—although I clued in in the wrong ways. I was much more worried about missed deadlines and lapsed commitments than about my deteriorating mental state.

As I’d gotten got sicker, I’d worked harder and harder to hide it. My history in the foster care system was always that when I deteriorated I became to hard to manage, and whatever home I was in asked me to leave. My urge to hide was a powerful self preservation instinct. I was putting everything I had into being strong. A month or so ago, I decided to stop the ADHD meds (in my defence, it’s an “as needed” drug), in a wild hope that this would help. It didn’t—in fact I was suddenly overwhelmed with a downward spiral unlike anything I’ve ever experienced. Two weeks ago, I was in the ER.

I got there—instead of somewhere much worse—because in addition to the broken soundtrack of guilt and despair in my head, there was a second, persistent chorus of thoughts. One that has seeped into me over the years from the many role models I have in my life of people who live alongside mental illness with grace, courage, and openness. And that stream of thoughts said “When you need help, it is not strong to go without. It is dangerous and stupid. You have people. Call on them. Let them walk beside you, and carry you if need be.” And so I, with a brain that felt filled with sand in the gears, asked for help. It was the tiniest thing, but it took everything I had. Fortunately, it was enough.

For me, the system worked exactly as it should. I mean the medical system, but also my community. My close friends who pitched in. My larger community that is filled with messages of taking care of one another, and the courage to be less than perfect. I am very hopeful that the strategies that worked so well for me for over a decade will work again, and I am putting all of my energy into reimplementing them. I have a long road ahead rebuilding, but I am getting excellent care and tons of support.

I debated whether or not to share about this—I don’t want anyone to worry. Also, it’s kind of a downer.

I’m aware that Facebook is supposed to be for making your life look more awesome than it is, but I’ve never really been a fan of that practice. I’m also aware that people usually share more about physical setbacks than mental ones in our culture, but I’ve never been a fan of that either.

It was the sharing of others that carried me when I need it. I turned to those messages when I needed someone to say “There is nothing wrong with throwing out your back from time to time. But lying on the floor pretending you can still move when you can’t is just silly”.

***

Oct 30th, 2016

Me: We need more mandarin oranges. We are running out, and they are a part of my routines.

Gary: Funny how that happens.

Me: My routines are GENUINE MEDICAL TREATMENTS BASED ON SCIENCE. If you need me to explain how medicine and science work, you let me know.

Gary <with a tiny smile he is trying to suppress>: Okay.

In other news, I am making steady progress. Especially in the first few hours of the morning. Yesterday I woke up feeling flat out happy. Not the manic happy I’ve been using to push through in recent months, but quiet contentment like you get cuddling a baby to sleep or going for a walk on a beautiful day. For me, that feeling is usually the first one to get knocked out, and the last one to come back. I laid there for a while not wanting to move or do or say anything to disturb it. But then, sadly, I had to get up because it was routine doing time.

But it didn’t stop.

Me <holding the oatmeal bowl and moving in slow circles in the kitchen>: Gary. The happy is FOLLOWING ME AROUND THE HOUSE!!!

It held for like an hour, even while I was doing things that shouldn’t make you happy. Like brushing my hair or spreading the bed. I gave Gary constant updates with every activity.

Me <calling from the bathroom>: I am putting on deodorant and the happy is STILL here!

Gary <calling back>: Oh good!

If you see Gary, be very nice to him. Gary, as you all already knew, is a saint.

***

Nov 4th, 2016:

When Gary had his anaphylaxis in Paris, I remember when we were just heading to the hospital, asking him “do we have medical insurance?” and him answering “doesn’t matter”.

The last three weeks have been like that. I’m learning to replace “should I do that?” or even “do I want to do that?” with “can I do that?”. And the answer is usually nope.

It was three weeks ago that I declared psychological bankruptcy, and the world has continued on without me. There was been a major UU conference in my city, our Minsters’ installation, a long awaited friend’s family’s arrival to Canada, and Charlie was elected as mayor. Now there is Standing Rock. At first, it felt like the real world was passing by out there, while I struggled with this new surreal and tiny universe where all that mattered was finding a way to sleep, go for a walk each day, and spend time with my kids. Each thing I missed broke my heart.

At first, this was awful. Like after you drop a glass on the kitchen floor, and you’re trying to figure out how to move without cutting yourself to pieces. My mind no longer feels like that—like it’s filled with broken glass. The glass is still there, but I’m wearing shoes, and holding a broom.

Now, it feels like the outside world is the surreal one. I am completely focussed on the next step in front of me. I do not plan, because I can’t imagine being anyone other than who I am right now. I do not muscle through things, because that muscle doesn’t work anymore.

The healing part is not abstract. It’s not like healing from a physical wound, because I can actually feel it happening. Every couple days I get something back. A few days ago it was gratitude—and when it came back I realized how long it had been since I felt it. Rather than just acted out feeling it. Yesterday it was music.

The best thing I’ve gotten back so far has been the ability to rest. My thoughts have slowed to a pace that I can keep up with. When I go for a walk, now, I see things—stores that have been there my whole life and I’ve never noticed. The colours of houses. I am completely present with everyone I speak to—I don’t miss sentences and try to piece things together like I used to. People are okay with me stopping a conversation partway through to cry or to go rest—if they aren’t okay with that kind of thing, they don’t come over. I say what’s true, because I’ve forgotten how to do the other stuff.

I get messages—lots of messages. People who say “I’m glad you posted about this”, which means “Me too”. Me too. Me too. People I only knew part of before are becoming more real. It is like moving through a world of ghosts that are becoming solid to me. We bypass talking about all the usual things, and talk about what it is like to live in a tiny circle of just getting through the day. Sometimes. Sometimes there are too many stories, and I just say “I can’t chat right now”, and that’s okay too. They know how it is.

It is like finally getting to rest after a long day, and like waking up from a long sleep. At the same time.

***

Oct 29th, 2016:

Eric: You checked 44 things off your list today? WOW!!

Me: Look closer at the list.

Anthony <peering over Eric’s shoulder>: Heyyyyy…

Eric: Brush and floss? And, each as separate tasks?

Me: It is important that I have very strict routines filling my days, but I don’t have a lot of energy so it takes me a long time to get things done and I have to rest in between a lot. Also, having more items makes me feel I am accomplishing things.

Anthony: Hey—what about this one that says “family back rubs, swim, badminton, trampoline park, library”? Why is it checked off?

Me: That one has a question mark. The ones with question marks are suggestions for things I might do that could be fun, and I am supposed to think about whether or not I want to do any of them, and then I check it off.

Anthony <narrowed eyes, as he is pretty sure that you do not get credit for thinking about doing items on your checklist>

Me: It’s called baby steps.

Anthony <gives me look that says “uh, yeah, if you are a baby that is too young to actually do any walking yet”.

Eric <looking more closely at the list>: You know. You have “brush teeth” as one item here, but you could separate it into putting the toothpaste on the toothbrush, and doing the actual brushing. It’s really two tasks.

He thinks he is making fun of me, but he is actually coming up with genius strategies…

***

Nov 7th, 2016:

I am learning about self care, which is an idea that I have never been a fan of. It always seems simplistic and a little blame-ey.

I got the marching orders “do things you love” after the crash, and I mostly sat there thinking about all the things I used to love to do and how none of them seemed remotely fun any more and I was too exhausted anyway and the fact that I had all this time and no way of enjoying it broke my heart. But the instructions were to self care, so I did, but VERY RESENTFULLY AND WITH NO JOY AT ALL AND HATING EVERY MOMENT.

In the last week, things have started to be fun again. Every morning, I wake up and sit by the fire and read, and when I love it, I am filled with a sense of wonder and gratitude that I CAN love it. And then I think about how I am getting better, and then I wonder if given that I have a good few hours at the beginning of the day, if I shouldn’t spend them all on Useful Things.

Then I remember how they tell us that self care is something we have to do because if we don’t, we’ll be of no use to anyone. I’ve recently discovered how true this is, and also how stupid and misleading it is.

It’s like when people try to stop harassment of women by saying “that’s someone’s sister/daughter/etc” and you think “Really? Doesn’t she deserve not to be harassed just because she’s a person?”

Hard lesson: It’s okay to spend your healthiest hour of the day curled up reading by the fire. Not because that’s what you have to do to practice “self care” in order to squeeze out maximum productivity. Because you’re a person, and your own happiness is a worthwhile end.

The thing about living without joy for a while is, when it comes back, you don’t have any trouble realizing how precious it is.

***

Dec 2nd, 2016

It has been six weeks since what I refer to now as “when I declared

psychological bankruptcy”. In addition to a light course of stabilizers, the ER doc referred me to be evaluated by a proper psychiatrist, as “I think I remember from University” is not considered an adequate basis for ongoing treatment. Fair enough, as my memory of those years is very foggy, and mostly consists of random commands in the programming language Turbo Pascal. These have not proven to be useful.

Psychiatrist: So, you have moods that cycle, and you meet the criteria for the diagnosis of “cyclothymic”.

Me <in head>: Cyclothymic just means “moods that cycle”.

Psychiatrist: It’s less common than bipolar, less severe, and has a better prognosis.

Me: Okay, that sounds like a good idea, then, let’s go with that.

Psychiatrist: The dose the ER doc prescribed is very small, half of what is considered the minimum effective dose.

Me: It’s working, though. How about I come back if I stop improving?

Psychiatrist: Fair enough.

From his expression, I suspect he is thinking “but at these levels it it is practically a placebo” but I am fine with that. If there’s anything I DO remember from University, it’s that the placebo effect is AWESOME. Study after study in Carl’s Advanced Research class was all about how well it compared to all kinds of treatments that we’ve always seen as effective. That, and the thing about correlation were the main things I learned from that class. Well, I don’t know that I learned them FROM the class, but the learning certainly occurred at the same time.

Later:

Me: What do you know about cyclothymia?

Gary: Well, I know that it’s not a cancer, and that I’m not a psychiatrist.

<Gary, for some reason, seems reluctant to direct my medical care>

I am, of course, following the psychiatrist’s recommendations. I am also, of course, making up my own recommendations and following those as well.

Me: I have always found that long walks make a difference, right from teenagerhood. I have done some research, and exercise is definitely causally linked to moods, and I feel that the light in the early morning helps regulate my circadian rhythms. What is your medical opinion?

Gary: It sounds like you have always found that long walks make a difference.

Me: I was thinking I would walk to Costco.

Gary: Um… I…

Friend: Have you BEEN to Costco?

Me: Never. That’s why it will be an adventure.

Friend: Costco is VERY far away.

Me: Whatever. I can see it from here.

Friend: That is not Costco. That is not even in the direction of Costco.

Me: I will take my phone.

Friend: It will not work, way out there. There is no city out there. It is only icebergs and penguins and whales. You would get lost.

More importantly, I would not be able to post to Facebook.

Friend: I will name your expedition “The Shackelton Expedition”.

Gary: I am not sure this is a good idea.

Me: You are worried that I will not make it.

Turns out, he was more worried that I WOULD.

Me <several hours later, via text>: There are so. many. things. we need.

Friend: Do not buy a television.

I bought a foot massager.

Me <much later, with feet in massager>: These are a crucial part of the treatment for cyclothymia.

Gary: I see.

Me: You don’t know, because you are only an oncologist, but they are.

***

Dec 14th, 2016

After Leonard Cohen died, I watched an interview of him, talking about his depression. After he described it, the interviewer said something about how unfair it must feel to be burdened with this, and Cohen shrugged and said “Everybody has something, right?”

“Everybody has something”. I’ve been chewing on this. The way we think of the “regular” body as healthy and without disability. The way we think of the “regular” child as one without learning disabilities, abuse, or incarceration in the family. The “regular” marriage doesn’t feature addictions or affairs, or one partner who kicks the other while he is falling asleep and allegedly invents a condition called “restless leg syndrome”.

I have been reframing my thoughts on this. I have been reframing “I used to be healthy but now I have something up with my knees”, as “every body has something, right?”. I’ve been reframing some of the things my kids have faced as “every family has something, right?”.

Used wrongly, such a mantra can be a message of “suck it up, you’re fine”. Used well, though, it can have a lightning effect. The burden of your “something” stays, but the burden of the loss the person you expected to be, and the sense that you are missing out… these things get a little smaller.

“What will you do with your wild and precious life?” asked Mary Oliver. There was a time when I would have grumpily answered “go to therapy and journal, mostly”, or “spend it sitting in waiting rooms of specialists offices with my kids”.

A wild and precious life is not a free one. We all have things we live alongside.

I think differently about myself, now. And others, too. I find myself wondering “I wonder what’s her ‘something’?”. It makes me kinder.

***

Oct 27th, 2017

Throughout this month, I’ve been living in parallel tracks. Exuberant joy at life-right-now, and alongside that the ghosts of life-a-year-ago-today (with the help of the Facebook memories feature).

A year ago, I “declared spiritual bankruptcy”. After the worst mental health crash I’d ever had, I gave up on everything but my family, going for walks, and writing. I spent long stretches lying on the bed, my body tensed with psychological pain, the way your body tenses with physical pain after you stub your toe. And I’d just breathe through it.

When you’re that kind of depressed, all happiness seems like silly ghost stories told by children. You don’t believe it’s real. You do things that are supposed to produce happiness, but the ability to be happy isn’t there—like an arm that’s gone to sleep and lost all sensation.

Now, it’s that sadness that feels like a ghost story. It creeps back from time to time, and I relax into it when it does. I let it wash over me, but I also have routines I use not let it get a solid grip. For now. For now I am joyful and grateful, and managing well.

A year ago, I was was desperate to get back to my old life. To put this crash in the rear view mirror and get away from it and only talk about it in neatly boxed stories of this mountain I climbed once. To get back to being the person I was supposed to be.

I never did go back to being that person. That person felt like an outfit I couldn’t squirm into any more.

I thought I was broken and going in for repairs and then I’d go back to being whole, but I was wrong. A short person is not a broken tall person. They are just short—which means that fitting into airplane seats is unusually easy and reaching the overhead compartment is unusually hard. I didn’t need to get taller. I needed to learn what I could and couldn’t do, and when to ask for help.

Now that I can put it in the rear view mirror, I don’t want to. It was part of learning who I am.