Sleep

The last time I really slept was more than a month ago. Most nights, like tonight, my brain spins with problems I need to but can't solve, and my body tells me I can't sleep until I fix at least SOMETHING. But, I don't even know which parts are broken much less how to fix them, so I wander--literally and figuratively. On the worst nights, I drive, hurtling further and further into the darkness in search of answers. Most nights, though, I spend wandering through the rooms of our house or into remote corners of the internet.

Wandering in late-night Kyoto.

In college, when my depression was undiagnosed and unmanaged, I avoided real sleep and chose instead to  string together a series of 20-minute naps over the course of any given night. When I did try to sleep longer than that, I found it easier to relax on the floors of friends' dorm rooms far from all the things that were worrying me. After I moved to Japan in my twenties, I had a standing invitation to use the hammock my fellow teacher had strung across her living room. She lived 10 miles away along windy mountain roads, but I still found myself there often. I can't think of a more generous act than letting someone sleep with you like that.

These days, it's a little harder to accommodate my wandering sleep habits. In fact, these days, a lot of of the self-preservation techniques I developed the LAST time I struggled with depression 25 years ago feel completely out of reach. Special needs co-parenting with a disabled spouse has shown me that ignoring my needs is the best way to get through most days, even it is a terrible idea.

Despite the reappearance of my symptoms, everyone else's needs haven't suddenly and miraculously disappeared. Ren still loses hours and days to pain and depression. Stow still melts down and engages in risky behavior. Sky still goes into anxiety spirals and wreaks havoc with his lack of empathy. The kids still need to get places and do things. Dinner still needs to be served. Clothes need to be washed and bodies bathed. And, of course, someone needs to make some money to keep the whole thing running. Who has time to be depressed? I mean, really!

Ironically, this experience will probably turn out to be the best thing that ever happened to me. Constantly running myself ragged and ignoring my own health is a terrible way to parent. I've known this for awhile but didn't see a compelling reason to change. Funny*** how depression has a way of forcing me to.

***By "funny," I probably mean "this is totally irritating and completely annoying," but since I haven't had much sleep, it's really hard to know.

Also, if you haven't read it, I recommend the short story "Sleep" by Murakami Haruki. It's in a collection called The Elephant Vanishes. "The Second Bakery Attack" and "The Elephant Vanishes" in the same collection are also pretty great.

Life Goes On, Really

Today I laughed, I mean really laughed, for the first time in a long, long time. Sure, it was inappropriate and in reaction to Stow's misuse of the word "attitude," and, sure, my laughter led him to throw pillows and then punches at me, but eventually, he was laughing, too.

Stow re-enacts his heroic efforts to "survive" the flash flood that happened on campus today when the storm drains clogged and our car was surrounded by rushing water a few inches deep. The tall fry is me, and the ketchup is the water.

Also today, the boys got haircuts, and the girl had fun at horse camp. Something that felt like progress happened at the kids' therapy session, and the teenager actually smiled.

Plus, no one cried.

Produce from our vegetable garden.

Life does indeed go on.





(Pssst. Click on the last sentence to read the previous post if you haven't read it already. Or go back to the the first post in this series about mental health  and read from there..)

Life Goes On

Bedtime tonight looked a lot like the apocalypse as three children fought over who was in charge of picking up the Lego, who was in charge of picking up the train tracks, and who was in charge of picking up Ultraman guys. Stow exercised the typical little brother tactic of walking off the job. Sky, whose voice is now at least an octave lower than it was six months ago, employed his man voice having discovered that yelling at people has a much greater impact than it did when he sounded like a child. Pink, who has learned to ignore the yelling, taunted the yeller, a strategic move that never ends well for her. Listening to it unfold from upstairs, I imagined limbs entangled in a dust ball of a fight like in the old Loony Tunes cartoons.

Ultraman guys as visual representation of the number of times I've traveled to Japan for work over the past however many years.

At one point, Stow came up, angry that I persisted in requiring these things be picked up (a request that was at least four hours old by that point) and threatened to break the lamp (our lamps take it on the chin, you guys) before coming at me with a phone handset. Fortunately, he's just barely this side of holding it together, so instead of getting clocked in the head with the phone, I got hugged aggressively (for the seventh or eighth time today), before he pulled it together enough to go back down to help. Not long after, Sky and Pink stomped their way upstairs to bed.

Ren had already retreated before the bedtime smackdown unfolded.  I know he heard it, but he didn't intervene. His leg pain is back, and after ten days of dealing with my depression (and 25 days before that parenting the kids alone), he'd hit his wall. I wasn't surprised or even disappointed by this; he made it longer than I expected he would. Both of us are married to someone who suffers depression--mine lifelong, his situational, the product of severe and chronic pain and of being so far from home and parenting kids on the spectrum--so I suppose the bright side is that we understand what the other is experiencing even if we don't have the resources to help.

****

When you come out the other side after a serious bout of depression, it feels a bit like you've re-entered the Earth's atmosphere in a spaceship that has a cracked heat shield. You can't believe you made it back, and, also, you feel pretty fried.

In that fuzzy state when you've transitioned from the sheer terror of ideations and a brain on the fritz to the more familiar general malaise of life with chronic depression, it's hard to figure out how how to piece things together again. The easiest way, of course, is to just go back to whatever it is you were doing before the crisis--you know, to pretend you didn't just go through days or weeks of hell. To keep going to therapy and taking the medication.To focus on work and the kids. To go out with friends. To distract yourself with television or mindless games. To exercise more. Only, it feels a little harder to do these things because you are less and less sure that anything really helps.

Plus, you don't come out the other side into a vacuum. You come straight back into real life after having lost days, weeks, or even months to the darkness that sought to overtake you. There's no trophy for outrunning it again, no celebration that somehow you made it through. Instead, you dust yourself off and keep running, slower, winded and limping, but moving forward. Life goes on because it has to, and you figure out how to go on with it because, really, that's your only choice.

Moe's List of Things You Can Take Away from Her (Gross) Oversharing

When I was deep in it while far from home a couple of weeks ago, the only person I told was a friend thousands of miles away. "You need to tell [the person your traveling with]," she said. "If your leg was broken, he'd want to help. This is no different."

Though I really didn't want to, I took her advice because I knew I needed to let someone closer know. But, I'm not sure I agreed with her assessment; I think the way our society thinks about mental illness IS different. Despite how much our medical system has evolved over the last 100 years, mental health issues are still treated as somehow less acceptable than all the other ways in which a body can let a person down.

I experienced my first severe depression when I was 18, an event triggered by a career-ending tennis injury and subsequent surgery. I went off to college that year hardly able to walk, and although my knee eventually recovered, I spent the next four years battling a depression I didn't want to admit I had. Depression gives you a certain empathy, and in my case, it led me to be actively involved with the student counseling center on campus. At the end of my senior year, the head therapist, who had become a good friend by that point, said to me, "Moe, You've done everything in your power to deal with this. Sometimes, though, it's just out of your control. Sometimes it really is just a matter of chemistry."

I had done everything--hours of therapy, prayer, meditation, exercise, lifestyle changes--but I had refused to consider medication. To me, taking an antidepressant was akin to failure because I didn't really grasp what my friend was reminding me of a couple of weeks ago. Depression is not a personal failure; it's the body's way of responding poorly to a host of internal and external factors. And, along with a whole bunch of other mental illnesses, we need to talk about it.

Depression and anxiety don't define me any more than my nearsightedness or my flat-footedness. Though I can't imagine a conversation in which I describe in great detail my use of orthotics, I suspect most people would be more comfortable with that conversation than with one about the ways in which my brain has been messing with me the past few weeks. That's why I've been writing these posts. Mental health struggles shouldn't be a secret. We need to be able to think about depression and anxiety and all the other mental health issues in the same way we think about a broken leg or an astigmatism.

I will be okay. I've been through this before. And, if/when I ever feel that I will not be okay, I have assembled a safety net of people I've promised to let know. But, I am sure there are people all around us who are still fighting this fight largely alone--afraid or unable to get the support they need. Chances are, they are people like me--highly successful and driven and with a sense of humor perfect for masking what's going on. Being vulnerable is hard. Being vulnerable regarding your mental health feels impossible.

If you've been reading my blog for awhile, you know I'm a fan of lists. So, here's a list for you:

A LIST OF THINGS I HOPE YOU'LL TAKE AWAY FROM MY (GROSS) OVERSHARING:

1. We need each other. And, we need to be okay being vulnerable.
2. It's okay to ask for and receive help. One day you will be able to return the favor.
3. Having mental health issues doesn't make you weak. In fact, you're probably the strongest person you know.
4. Every day that you keep going in the midst of your mental health struggle is a tremendous victory. Try to celebrate it and know that one day it won't be so hard any more.
5. Sometimes your family can't help. Mental health issues are hardest on the ones you love the most, so it's okay to look for support outside your immediate family.
6. Sometimes the best way you can help a struggling friend is to keep talking to them. Don't pity them or patronize them. They don't want to worry you but probably really, really need someone to be present with them and treating them the same way they've always been treated.
7. Total "recovery" from mental health issues is probably not a realistic goal. Think about ways to embrace and accept this part of yourself.
8. Learning to live with things like depression can actually help you tap areas of strength you didn't know you had. For me, it's writing. I often write better when I am depressed, and at the very least, depression motivates me to put to words things I wouldn't normally talk about.
9. It's up to all of us to remove the stigma around mental illness. We must teach our young people to do this differently.
10. If not us, then who will take these hushed whispers and turn them into a collective roar for change?

ICYMI, here is the first blog post I wrote about depression earlier in the week, and this is the second one. I also wrote one about anxiety. 

Day Three

Pink wants to know if today is the day that I won't sleep on the couch for hours at a time. She asks how long it usually takes for jet lag to wear off. I explain to her about depression, so then she starts telling me the best jokes she knows.

Stow wants my attention. He comes to me frantic about his train, his tummy, his sister, his window. He hits me in frustration when my responses are slow and sloppy. I turn him away when he asks me to go downstairs and play with him. I can't possibly muster the energy it would take to play.

My chest feels like someone has filled it with quick drying concrete that hardens as it seeps into my stomach and down to my legs. The simplest tasks feel insurmountable. I'm able to make it through the grocery store but can't face putting gas in the car or picking up a prescription. The kids have a swim lesson that I'm not sure I will make it through.

This pizza felt like a herculean achievement.

Ren's patience wears thin. Under his breath, but loud enough for me to hear, he says, "She's back, but I am still doing everything myself." Supine on the couch, I don't disagree. Sleep beckons me in the middle of the day. At night I lie awake hour after hour as it eludes me replaced by anxiety dreams and a buzzing in my brain that can't be shut off.

This is not my A game, or my B game, or even my C game. This isn't really even coping. In my head, I know that it will get better (it always does), but I also know that it could take awhile. I don't have awhile; being a mom in a special needs family means I'm operating on borrowed time already. Still, my only choice is to put one foot in front of the other, to wake up each morning and to try again, to hope that tomorrow will be a little easier than today, and to pray that somehow everyone else can keep it together just enough to avoid complete catastrophe.

A Game: An Anxiety-fueled Post at 3 AM

The other part of it, of course, is the anxiety. My anxiety is as old as my memory. When I was six, I insisted I go to bed at 6:45 pm EVERY. SINGLE. DAY. for I was convinced I'd never be able to sleep if I didn't. Bless my parents, they accommodated this demand and then spent many nights sitting up with me as I cried well past midnight. By fifth grade, my anxiety had expanded and taken over; I cried every single day for the first six weeks of school filled with worry about things I didn't have words for. It's hard to make friends and be liked when you're constantly crying for no reason, so eventually I learned how to internalize those feelings and instead would start awake each morning gripped with a sense of terror that ripped me from my dreams and set my stomach on edge. That's when I stopped eating breakfast.

By seventh grade, I decided the only way to deal with anxiety was to take complete control of any and everything I could. Sure, that led me to develop an eating disorder, but I was also a straight A student, star athlete, and successful musician. That summer I shot 100 free throws, served 100 tennis balls, and rode my bike 10-15 miles every day. It turns out perfectionism is a pretty effective way to deal with anxiety; it drives you to be the very best at everything, even if doing so isn't well-advised or necessary. The downside of course is that when you're striving to be perfect, you miss a heck of a lot along the way.

Eventually, I internalized my coping strategies so deeply, that it wasn't until recently that I understood how much my anxiety still controls my life. Parenting has a way of highlighting these kinds of things for you, especially when your children start to exhibit some of the same behaviors you remember struggling with as a kid.

Texts from Sky; he outgrew size 12 but hasn't grown into size 14....

During the three plus weeks that I was in Japan for work, Sky frantically texted me almost every day. The nature of the texts were largely the same--they either highlighted for me whatever was going horribly wrong at home or repeatedly asked me to walk him through something that was happening or about to happen. Autism and anxiety go hand in hand, and Sky's anxiety is absolutely brutal. From thousands of miles away and with my own anxiety percolating just below the tipping point, I eventually had to stop answering his texts and hope that somehow Ren was on top of it.

These are just the moms I managed to fit into the screen shot.

Calling home didn't go much better. The first Skype call ended in a wrestling match. During the second, a lamp got broken. I stopped calling after that. For kids on the spectrum, change is hard. Reminding them of that change by calling leads to chaos, so as awful as it seems (and is), it's actually better for me just to disappear when I am gone.  Fewer interactions meant slightly less anxiety for all of us.

Even as I felt things falling apart for me on the depression front while I was away, I also knew that my family wasn't the place where I could find solace or respite. We love one another fiercely, but mental health issues are hard on everyone. Special needs parenting requires your A game, and if you can't bring it, you don't get the option of sitting this one out. Your best (and only) hope is that the other parent can be on their A game while you try to hobble alongside offering support where you can.

In the first 24 hours I was home, Stow broke a door, attacked his sister over a couple of Hotwheels cars (causing her to have a pretty scary asthma incident), wept uncontrollably multiple times at the thought that I don't love him, and ran away twice. When I tried to introduce the kids to a new board game, Sky got so anxious that he gave himself a nosebleed bad enough to convince me that he was patient zero for a new Ebola outbreak. It took two of us to help him get it under control and to keep him from passing out in the middle of the kitchen. I spent the rest of the afternoon in bed with headphones on and a towel over my eyes. At dinner, which didn't happen until 9 p.m., Stow spilled a plate of curry, eliciting an unwanted critique of plate carrying methods from his brother who didn't, of course, extend his helpfulness to assisting us with the clean-up.

Stow's "Welcome Home" note for me: "Please don't leave me like that. (heart heart). How much I love you __________ Moons."

Mercifully, despite the fact he single parented for 25 days (the longest stretch, yet), Ren senses where things are for me and has managed to stay on his A game so far. I know the limits of his reserves, though, so I'm hoping to turn things around quickly and take on some of this load.

First, though, I really need to figure out how to get some sleep.

Safety Net

Not long ago, I got back from trip to Japan where I participated in some exciting and hopefully life-changing work, but I also had a pretty significant mental health regression while I was there. Normally, I don't write much about the mental health aspects of my/our lives, but given the high profile suicides that happened while I was in Japan and given a recent post by one of my fellow autism mom bloggers describing her own suicide attempt, I think it's important to add my voice to this conversation that so desperately needs to go from hushed whispers to an unrestrained collective roar.

Shallow river

Depression is terrifying. One minute you can be doing just fine and the next you're totally overtaken by the grim calculations of suicidal ideations--if I jumped from this bridge, would I die or would I just break my legs or back? If I land just right, would I hit my head and drown? Is that door frame high enough, and how would I need to tie the sash to make sure it holds and my feet don't touch the floor? At which spot on the train platform is the train moving fastest, and if I jumped, would I be able to do so without anyone stopping me? .......

Eight stories

Eight stories should be high enough, but can I get over this wall and scale the safety fence fast enough to avoid being caught? If I step in front of this truck, could the driver brake in time? How can I be sure he doesn't swerve and hit something/someone else? These thoughts come at you regardless of where you are, what you're doing, or what you should be doing.

Some days, you spend a lot of energy just making sure your feet stay firmly rooted to the ground. Waiting at a crosswalk with friends, you find yourself stepping behind them--in a move subtle enough that they probably don't notice--because you know you need that extra barrier between you and your demise. You exhaust yourself as you try to shut out those thoughts and you recalculate your routes so you aren't crossing any bridges or using stations without security gates between you and the track. Some days, you hand over the sash to your pajamas and your car keys to an unsuspecting friend/colleague/spouse and hope he/she doesn't question why. Those days you know it's just a matter of making it until morning because you know that when the sun rises again, you will have bettered the depression, at least for one more day.

Sometimes depression finds you sitting on the floor of the train station at midnight, too overwhelmed to go home, too overwhelmed not to go home. You'll discover you're crying only when a nice young man and his girlfriend come to ask in anxious and broken English, "Are you okay? Need help?" And, you will lie and say you're waiting for a friend, which turns out not to be a lie entirely because you do need a friend to save you but you don't know how to ask for that or how anyone could ever possibly save you from the noise in your head. After the guard kicks you out of the station and you find yourself sitting next to a drunk homeless man, you might find the strength to text someone, and if you're lucky, they will come sit with you or they will stay on their phone, talking/texting you through making your way back to the hotel. Sometimes, they may even let you sleep on their floor so you don't have to spend a long night alone with the buzzing in your brain.

Depression tells you that there is no way you can go on like this. And you know this is true, but you you're not sure what to do about it. On the days when the depression isn't as crushing, you let some people know what's going on. And, somehow, those people work out ways to help; they share Spotify playlists, and YouTube videos, and FB memes. They invite you to do something fun months in advance to give you something to look forward to. They tell you how amazing they think you are and remind you of all the good you do in the world. None of these things is actually enough, but you tell yourself the glass is half full, and you hold on tight to them. You try to string together the little joys (when you can find them) into a chimera of hope, fragile and unsustainable. You see your therapist. You adjust your meds, and you pray like hell for it to get better.

The more you do all of these things, the more you come to understand that, for better or worse, depression is just part of who you are. You cannot separate yourself from it, and no one can take it from you. You realize that the life you lead will not be the one you hoped for, but you will discover that if you give people who care for you a chance, they will show you tremendous grace in the midst of your worst moments.

All I can tell you is the same thing I tell myself--hang on. I know the herculean effort it takes to make it through any given day. On those days that you can, reach out to others and start to string together a safety net. The work you are doing is hard, but it is so very, very important that you keep doing it.

National Suicide Prevention Lifeline: 988 or 1-800-273-8255