The world needs more spoons.

Earlier today I read that having a mental illness can be measured in spoons. Normal people have a limitless number of spoons available to them at their beck and call. Waking up in the morning– there’s a spoon for that. Making 3 meals a day, plus snacks, plus vacuuming, plus doing the dishes, plus going to the bank, plus putting on real clothes, plus being able to talk on the phone or interact with the UPS guy in a way in which you don’t come off as a raging lunatic (that is, being able to interact with the UPS guy at all,) — there’s a spoon for that.

Then there are people like me. People for whom being able to talk to the UPS guy is laughable. People who can’t go to the grocery store, or return emails, or get out of bed, or see family or friends two days in a row, or more than twice a week. My spoons are not limitless. My spoons are finite.

On any given day, it can be assumed that I have somewhere between three and six spoons available to me for whatever it is that I need to do. Sometimes these things are a trade-off. I might be able to respond to emails, but that doesn’t mean I’ll be able to get out of bed to do it. I can make lunch, but there’s no chance in hell that I’ll be doing dishes. Or maybe I will do lunch and make the dishes, but then please, for the love of God, don’t expect me to take out the trash or go to the bank or keep that dinner date with my father-in-law. It isn’t going to happen.

Normal people have a hundred spoons delivered to them bright and early every morning.

Me? I have six. Tops.

Does having fewer spoons make me less of a person? Does it make me a loser or a moron? I don’t know. I’d like to think not, but some days… some days I’d be standing right alongside my worst critics, shaking my head and tut-tutting at myself in dirision. “What a fuckup? Get your shit together!”

I prefer to think of it like this: I have a finite number of spoons. that’s true. But the fact is, having fewer spoons has forced me to take stock of my life in a way most people can’t. I really do appreciate the little things. Having tea with a friend is a big deal, because I simply can’t be around people more than a small handful of times a month. Laughter is golden, because some days, I don’t have enough spoons to smile, much less laugh. Some days I’m just squeezing the pieces of my head back together in the hopes that I don’t completely fall apart.

I’m going to start collecting literal, physical spoons for the people I meet. I’ll put a small hole in the handle and string it with a cord, then give them away with a reminder of this post. There may come a time when you don’t have enough energy, or love, or compassion, or joy of your own and you need just a little bit more. A spoonful, perhaps. And you’ll have one in reserve for that very occasion.

I might not have a lot, but I have enough. And I’m willing to share.

I’m so anxious I could puke. No discernable reason. I overate. I didn’t exercise. I had too much of a too sweet brownie. (It was disgusting.)

I’m an asshole to my husband. I lash out in anger because I’m not capable of handling my issues. He’s my best friend. He’s my emotional punching bag. I’m worse to him than he deserves. That needs to stop.

I’ve been wanting to be active. It hasn’t felt like exercise. It’s been fun. Enjoyable. Calming. I bounce on an exercise ball. I lift weights. I go on hour-long walks.

Today I sat there. Motionless.

I talked to my husband’s nieces today. My favorite kids. I felt like an outsider. He’s their uncle. I’m not.

I never know what to do. Everyone else read the manual. My manual is blank.

I could write my own.

Things are very good. There’s no reason to be anxious. Anxiety doesn’t need a reason. Anxiety is the uncaused causer. Anxiety is God.

Anxiety is stupid.

Two weeks ago my husband was hit by a car while crossing a street. He had a massive brain bleed, dozens of fractures in the face and skull, broken teeth, a bruised lung, and his right leg was shattered from the knee down. He had emergency brain surgery and was in a coma for 3 days, breathing through a tube.

You’ve heard these cliche, overdone lines all your life.

“It was a morning like any other…”
“Time stood still…”
“My world was ending…”

Let me just say this: There’s no part of you that’s going to roll your eyes when the hospital calls to tell you that your husband’s been in an accident. Your first thought isn’t going to be of how dramatic the social worker or policeman is when they say, “I’m sorry. He might not make it. You need to get here fast.” And when you finally do get there and the chaplin keeps you in the hallway and asks about last rights, but then tells you that because you’re a same-sex couple, you’re going to need to show a certified copy of the marriage lisence before you have the legal right to see him–

You won’t respond well.

I didn’t.

I’ve never known such fear. I’ve never felt such fury. I said things to that woman that I didn’t think I’d ever say to anyone. Another cliche: “I wasn’t in my right mind.”

The hospital staff and I quickly came to an agreement. They’d “let” me in to see him, they’d “let” me make decisions for him, and I’d “let” them not end up in a bed the next room over. I made no bones about it. “My dear, I’m *going* to see my husband. I’m *going* to make decisions for him. And it’s up to you, right now, whether or not we end up in the news later today, and whether or not I go through you in order to get to him within the next 60 seconds.”

He came out of his coma on Saturday morning. He began breathing on his own. He eventually began speaking, and was inconsistently responding to questions. His lungs and stomach were full of blood that he’d swallowed and breathed in. His right leg had been rebuilt with titanium. He was in excrutiating pain.

I’ve been at his bedside 24 hours a day, with momentary exceptions for a quick shower and shave. Our friends and family have been astoundingly supportive. People have come from all over the country to sit with us. Sangha has been there every step of the way. His doctors and therapists have been top-notch. We’ve been extremely lucky.

Yes. Lucky. Lucky because nobody thought he’d make it through a day, much less a week. If and when he did wake up, he wasn’t expected to breathe or eat on his own anytime soon. Maybe ever. People were talking about spending a month in the ICU, 3 months in in-patient rehab, and years in out-patient. The plan was to have a round-the-clock nurse and for him to be in a wheelchair for the foreseeable future.

He was breathing for himself and speaking in full sentences on day 3. He was standing and pivoting between his bed and an armchair with a walker on day 4. He was taking 2 steps on day 5. On day 7 he was transferred to in-patient rehab. On day 10 he passed every cognition and memory test they could throw at him. By day 14 he was eating full meals, completely off of the feeding tube, walking 300 feet with his walker, administering his own medicines, dressing and showering himself, brushing his own teeth, and approved for unlimited amounts of unthickened water and tea. On day 15– he’s home.

To all those doctors and nurses and therapists and family and friends and Sangha who have made this possible for him, thank you. You saved his life. You gave me back my best friend.

To the few, but the loud, who said I couldn’t see him, or said he wouldn’t make it–

Go fuck yourself.

He’s got this. And if God forbid you ever find yourself hit by a distracted driver, you best be comin’ to his ass for advice. Clearly he knows a thing or two about surviving. I’m married to the god-damned Wolverine.

I woke up at 3am on Sunday bawling my eyes out. This time the revelation was that no matter how much I’d like to hide it, I suffered some pretty ruthless abuce and neglect as a child. I don’t use the word ‘suffered’ lightly. I won’t go into everything here, but suffice it to say that although it could’ve been worse, it was definitely bad enough.

I’d never admitted that to myself before Sunday. Not really. I think of it from time to time, but I’ve never let myself feel anything about it one way or the other. I might’ve even gone so far as to tell you that I *couldn’t* feel anything about it one way or the other. I’d notice it, I shove it down, I move on with my day.

Until Sunday, that is.

One of my unofficial foster fathers was recently released from prison. My biological mother gave him my phone number (without my permission,) and he supposedly left me a voicemail shortly after his release that I truthfully never received. My mother occasionally drops hints like, “You know, he’d really like to talk to you,” or, “Would you like me to give him your number again?”

I’ve always left the room while this guy was around and offered not-so-polite disinterest if I was forced to speak to him. He’s kind of a family friend, so he’s been around even after my biological parents learned of some of the terrible things he did to me. Grandfathered in, if you will.

What’s crazy is that he was so much a part of my landscape that I never realized how messed up it was. Moving back in with my biological parents a few years later also meant having this guy and his beyond disfunctional family lurking on the far edges of my social sphere. The fact that while living with them, he and his wife would lock me in rooms for days on end with little to no food or water… or that I was punished for not feeling well enough to eat dinner by not being allowed to eat anything at all until I’d eaten the food on that night’s plate, even if that meant having to force it down once it was already going bad several days later… Or that the guy thought it was absolutely hilarious to hold me down and force my face into a toilet bowl he’d just used and hadn’t flushed… Or having to go to second grade wearing nothing– nothing– but tennis shoes and denim overall’s because the rest of my clothes were dirty… Or the constant screaming, yelling, fighting, throwing, shattering, hitting, threatening, dehumanizing of my homelife… Or that I was forced every day to lie and pretend that none of this was happening, terrified to go home, intentionally missing my bus stop so that I could have another hour and a half of relative safety in my incredibly unsafe world.

Those are apparently things that as a parent, you can overlook after a while, after the protective anger fades. You can find distance. Rationalize things. Ignore them. Even as a parent, time heals all wounds.

Or, well, makes them easier to avoid.

So, no. No, no I don’t want this man to have my phone number. I don’t want him to know where I live. I don’t want to ever see him again. I don’t want to be in the same room as him. I don’t want to talk about him, think about him, or hear someone talking about him. I don’t want to keep pretending that he didn’t do these things to me, or, for what his wife did when he wasn’t around, what he let be done to me. I don’t want to deal with the fact that my parents didn’t just leave me in this situation once, but several times with their “friends” or make-believe family. I want to put my head back in the sand and go into my blissful, numb ignorance. I don’t want to have been hurt. I don’t want to be looking at the reasons for why I am now. I want to… I don’t know what I want, but it sure isn’t that.

The point is, I never felt safe growing up. This was only one of many environments and relationships which was profoundly unhealthy. My childhood was marked by pain and distress, and my adolescence and adulthood have been more of the same. The place where my happy childhood should be is a bubbling cauldron of hate and rage; self-disgust and sheer terror. I was always afraid. Afraid of the emotional and verbal abuce, afraid of not fitting in, afraid of being bad, afraid of being too good, afraid of not liking the right things, afraid of having the wrong values.

I don’t blame my parents a whole heck of a lot for what happened to me. I’m bothered that they didn’t know better, but then, who knows better? What’s to be known? It’s not like I told them. Now that I think of it, we’ve still never once had a conversation about what really happened during that time. Those are the Lost Years. Frankly, I never plan to bring them up. My parents know a little. That’s enough. Those stories can live and die between me and the people in question. But I am learning.

I’m learning that self-care really does need to be top priority. Just because people didn’t take proper care of me when I was little doesn’t mean that I can’t learn to take proper care of myself as an adult. But more importantly, this was a huge wake-up call that as stupid as it sounds, there really is a vulnerable, wounded, furious little boy inside of me who’s in need of some serious re-parenting. He needs to be shown that someone cares. He needs to be taught how to live. And I’m in the uniquely fortunate position of getting to do just that.

I don’t know how to go about this. I can try talking to myself. I can write myself a letter. I can gently, but firmly correct him when he lashes out in depressive, anxious, rageful confusion, or when he refuses to get out of bed. I can help him with his homework. I can give him routine, structure, and an open-door policy. We can learn to play. We can learn to explore the neighborhood and find physical activity outside.

We can learn to live. But… how?

I think I might be on the verge of a nervous breakdown. Or breakthrough. I don’t know which.

I’m grateful that I’ve given myself the time and space in which to explore my depression. I don’t feel that it’s been the least bit wasteful. Learning to be honest with people about what I’m going through when I isolate myself for months on end can be tricky, but it’s proving to be a great relief. I’ve had more meaningful conversations with people in the past two weeks than I remember having ever before. Telling people about my social anxiety seems to considerably lessen the weight of that social anxiety in subsequent interactions. It’s a lot better than avoiding them and making up an excuse as to why I didn’t see their email/phone call until it was too late to get together. And opening up about my depression has inadvertently provided others with a safe space in which to voice their own struggles that wouldn’t have existed otherwise. These are good things.

What I can’t stop thinking about is that the more I sit with myself– my neuroses, my fears, my evasions, my distancing myself from people– the more I… well, the more I kind of hate myself. The more I’m completely and utterly sick of my bullshit.

Every time I see myself using complicated words and sentence structures to mask the truth, or whenever I notice myself avoiding a topic which makes me uncomfortable, or if I make a cheap joke because it distracts someone from my vulnerability, I’m instantly exasperated to the point of PISSED. I’m so sick of my avoidance tactics. Can’t I just shut up and let the person I’m talking to see that I’m a weak, vulnerable human being who has no idea what to do in this situation? Why do I have to try to control everything? Ugh!!!

In that, I’m also becoming a vessle for the pain of the world. I feel other people’s discomfort as if it’s my own. Not as if it is my own, but *because* it is my own. I have that pain. I have that insecurity. I’ve had that loss. I’ve had that uncertainty and that fear and that betrayal and that frustration and that sheer, relentless moment of despair.

The more I see myself with clarity, the more I see that to a certain point, we’re all just the same experiences with different names and skins sewn onto us. And I FUCKING HATE IT.

I don’t like that walking down the hallway at school can make me tear-up because some random girl whispers to her friend about her dying parent. That’s not who I am. I don’t feel things. I don’t have emotions. I’m not so weak as to care what a total stranger’s going through. And I certainly don’t tear-up just because she’s hurting. I don’t tear up, period. You could stab a puppy in front of me and I’d hardly blink.

I mean… Right?

Wow, what a sick, twisted pedestal I’ve had myself on.

Of course I wasn’t a cold-hearted thug. I just wanted people (including me) to see myself that way in order to not have to stand face to face with the fact that I have needs just like everyone else.

Yes: I. Have. Needs.

Not to put too fine a point on it, but I went to 14 elementary schools, lived in abuce situations that I still don’t talk about, was forced to undergo countless excrutiating surgeries, watched some people die, dealt with my emerging sexuality, was beaten blind by my own sister (who I totally hero-worshiped, by the way,) I was extremely overweight, and I was always, always, always an outcast– all by the age of twelve. That doesn’t even touch the things that happened throughout high-school and college.

So, yeah. I learned not to have needs and I learned to function as a robot. It was a hell of a lot easier for people to see me as an awkward robot-type than to see me as someone who not only hadn’t processed my drama, but who had no idea which issues should take priority. I really wanted people to see me a certain way. And I even convinced some of them! But in the end, all it did was leave me an anxious, depressed child inhabiting the body of an adult. All of the responsibility and intellect, but none of the emotional life-skills.

Now I’m getting teary-eyeed at strangers’ pain? I’m seeing my shit, but everyone else’s shit at the same time?

My skin feels too tight. My skull is too small. There’s too much pressure. And I have no idea what to do about it.

Nobody ever bothered to explain to me that I was depressed. No one ever described the symptoms of anxiety. When we talk about them, we don’t *really* talk about them. We talk around them. We use ufamisms and metaphors. We hint at this or that, but we never come out and say it.

I’ve spent most of my life in bed. In middle and high school I went to sleep at 4pm and begrudgingly woke up at 6am. I did no physical exercise. I had no interests. I felt ill. I was deeply uncomfortable in social situations. I avoided intimacy of any kind. I fixated.

Those symptoms– what I thought at the time to be merely personality quirkes– grew worse the older I became. Even now, the world is too much for me. I keep a very light schedule. I spend all of my free time– all of it– in bed with 15 pounds of blankets. I hate noise. I **HATE** it. I feel stuck. I feel like I’m drowning. I have nothing and no one, except the people who live places I can’t go. My good intentions are met by a crushing, deflating emptiness. I have no energy. None. It takes all of my will power most days to just stand up. This is not exaggeration.

I am depressed.

I’m severely depressed.

It’s part of me.

The world is quite literally distorted through my senses. Sounds are louder, but voices are harder to hear. I’m always cold. My favorite foods are tasteless. Beyond not having the energy to stand, I have nothing to stand for. No interests. No hobbies. I’ve widdled down my responsibilities and obligations to 3 hours a week of classes, no work, and my house… I need to clean my house.

It’s not like just because I’m depressed, I don’t know what I should do. I’m acutely aware of what I *should* do. The trouble is in actually being able to get out of bed and do it. Severe depression depletes your body’s energy reserves. It also warps your ability to think. Your cognitive processes slow and turn to syrup. You become easily confused. You’d prefer not to think, and all you can remember is how empty you feel.

The last week has had ups and downs. It seems that one day I’m vibrant and more alive then I’ve been in a while, and the next day I’m right back to lying down, sleeping (or pretending to,) trying to convince myself that this is normal and that this experience, like every experience, is worth something.

The last 4 months have been a science experiment for me. I decided that rather than fighting the depression, I’d do what I do with my panic attacks. I’d let myself be depressed. If it was a day when I couldn’t move, fine. I wouldn’t move. If it was a day when I couldn’t pick up the phone, fine. I wouldn’t do that, either. I would explore depression with interest and curiosity. I’d make depression my friend. I’d be a good host.

I sincerely believe that giving myself the space in which to be depressed has been the most educational, if one of the hardest, depressive episodes I’ve had so far.

Instead of being depressed “just because,” I’m starting to see patterns emerge. Reasons are starting to reveal themselves. In the moments when I can think my way out of a wet paper bag, I see how unhappy I’ve been– and for how long.

Seeing your depression with clarity is not a comfortable experience. But it’s infinitely better than the alternative.

Yesterday was 60 degrees. We were able to have the windows open for the first time since October. They’re still open, in fact. And I love it. It makes everything feel better.

Windows. Clarity. There’s a symbol in there somewhere…

In blindness culture, some people consider it indescribably offensive to talk about vision as good and blindness as bad. “Better eye, worse eye; better vision, worse vision; Did your vision improve, did your vision worsen?” So on and so forth. What all of that comes down to is this: “Why is that eye “better” than the other eye? Because it has more vision. So does that mean that you think vision is good and blindness is bad?

If we’re being honest, of course most people– even blindness professionals– see vision as good and blindness as bad. many blindness professionals even go so far as to call themselves “vision professionals.” Some blind people would agree. (Thankfully, I don’t even know any of those blind people. But they’re out there.)

This might not come as a shock to you, but I’m squarely in the camp that calling vision good and blindness bad is apalling. Calling my blindness bad is the same as me calling your blackness bad. Or your womanness. It’s unthinkably rude, not to mention dehumanizing.

And yet…

And yet I think it’s okay to talk about bettering myself? “Self-improvement,” if you will?

Why is it okay to talk about needing to better myself in some way, but attaching a value judgment to my blindness, which is also an inherent condition of who I am, is unthinkable?

This isn’t to say that you can’t change your current level of health, or that you *shouldn’t* change your current level of health. It’s just to say that you can’t be better, you can’t be worse. There are pros and cons to anything in this life. It’s up to you to choose how to interact with those pros and cons.

A con to being blind is that it’s harder to get around because I can’t read street-signs. A pro to being blind is that the world is EFFING GORGEOUS! Every ounce of beauty on this planet is amplified ten-fold by not being able to see it. A ray of sunlight becomes an ocean of warmth and nuance. Wind in the trees becomes a symphony of hundreds of thousands of leaves all singing a harmonious, angelic song.

A con to being healthy is that it takes hard work and dedication. A pro to being healthy is that you’re mind, body, and soul will feel strong and light every day of the week, and you’ll be less likely to lie in a bed hating yourself.

If I can’t put a value judgment on blindness, I can’t put a value judgment on health. I can only acknowledge what is.

Follow

Get every new post delivered to your Inbox.

Join 72 other followers

%d bloggers like this: