Losing the Light, Part One: How I lost my sight... (Originally posted in June of 2010)
The view from my bedroom window
It's Random Writing Tuesday here at Pitch Slapped...
What is playing over my earphones: Vincent, Josh Groban rendition.
I'm not used to the new found freedom having a laptop gives me. I've been used to being chained to the desk in the corner of the living room, set up there for safety's sake. With a teenager in the house, internet browsing needs to be an out in the open type of thing as far as I'm concerned.
Right now I'm looking- yes, looking, out my bedroom window and watching the trees outside sway in the breeze. I love the sound they make, though the iPod is pretty much overriding it at the moment. Hallelujah by Celtic Thunder has taken over from Groban, a nice segue, I like the new playlist. I'm pondering how it's different from the Rufus Wainwright version- trying to decide if I can choose a favorite between them. I'm deconstructing the arrangements in my mind- percussion, strings, piano, vocals. The Wainwright version is more heartbreaking by far- he sounds as tortured as Leonard Cohen seemed to intend them to be when he wrote them. Still, it's very hard to find a flaw in three Irish guys singing in impeccable harmony.
I comment on watching the trees- blurred as they may be given I can't see distance well with the glasses on which allow me to see what I'm typing to you right now- because a year ago, I wouldn't have been able to tell you anything about the experience of this summer day beyond the breeze on my face, the heat of the sun on my skin, and the sound of the leaves.
This time last year, I was recovering from my first two eye surgeries, still almost completely blind.
I seem to have forgotten somehow that ya'll aren't psychic- and that I haven't actually blogged yet here talking about how I actually lost my vision. The questions I've been getting in email tell me that it's high time I remedied that for you. So here we go.
I'll try not to bore you with the graphic details, which to be honest I don't enjoy reliving.
The very short version is that my body, and of course that includes my eyes- is genetically inferior. As a result, to quote the geneticist who diagnosed me properly last fall after twenty years of wrong labels being slapped on me like a can of condensed soup, 'the glue that holds your body together is being destroyed'.
Did you know that your eyes are made up mostly of collagen? I didn't know that until a couple years ago.
This diffuse connective tissue disorder is taking me apart, piece by piece. It's collapsed the discs in my lower spine and messed with my other joints too. Some of those joints are malformed and so have other issues additionally.
They are still trying to further classify me to a specific syndrome. For now, the best they can do is "Marfan-like".
I really am a genetic mutant. I joke about that a lot- that I'm really just a Muppet and in fact from the same planet as Gonzo because nobody ever really seems to know just what Gonzo is. I even suggested they might name whatever syndrome I am living with, since they are so anxious to label it "Gonzo Syndrome" (I have several 'markers' outlandishly large eyes, sizeable nose) but I don't think the Muppet people would like that and I would really hate to tick them off because I've loved them since the day I was born and few other things in life have ever held my attention that long.
All joking aside, this whole mutant thing can be serious business. I'm lucky in that thus far it's left my heart alone, they want to keep watching that. But it is hard to keep your sense of humor when it takes aim at your eyes and decides to destroy your lenses, turning them into obstructions between your retinas and the outside world.
Now I know what you're thinking. Great! No problem! It's just a case of cataracts on steroids, they can fix that no problem. They'll pop you onto the table, do the same surgery they do on grandmas the world over day in and day out and in less time than it takes to deliver a pizza, viola! Bru has brand spankin' new lenses and better vision than she's had, well, ever.
Only remember that pesky genetic mutant thing I mentioned?
My eyes are not built like other people's, not even Grandma's.
I knew I was in trouble when they started bringing in groups of medical students and residents and saying things like "You won't ever see another pair of eyes like these in your lifetime, pay attention."
Some of these doctors said it as if I wasn't even in the room anymore. Just a pair of eyeballs floating in the air, kind of like Cheshire Cat when he fades in and out.
Then they shine very bright lights in your eyes for extended periods, even as your eyes involuntarily tear and spill over. You ask when they'll be finished, and at times they don't answer. Some particularly fun doctors of times past (not any of the people I have now, all of whom are WONDERFUL) just kept talking to the residents: "See, the light reflects all the way back. You can see the rods and cones lit up like the spokes on a wheel. Isn't that amazing?"
At least, that's what they said until my lenses were so destroyed that they blocked everything from getting in. Then they said, "See how the lens creates a complete obstruction? It's impossible to visualize the retina anymore."
Translation: They couldn't see in, and I couldn't see out.
I went through countless doctors and four hospital systems in the search for help to save my sight. By the time I finally ended up at the University of Michigan, we were talking about how expensive leader dogs are, and how we'd find a way to try to get one anyway. I suggested that I wanted the world's first seeing-eye cat and that ours was smart enough to do it if I could only get the harness on him.
Random thought: Hate public restrooms? Me too. Now imagine trying to navigate one you've never been in before when you can't see a bloody thing.
Now try this one: imagine being out in a parking lot and realizing that in broad daylight you have the visual acuity of a possum. That's where I'm at today.
Without lenses to filter the light, I am still blind in daylight. I always was photo-sensitive, as a child I cried when the family tried to take pictures with flashes because it hurt...
I'm sorry- had to stop mid thought there, the phone rang. A friend of my father's. She's on a pretty brutal chemo regimen- I did my best to tell her some happy things. Talking to people who are so brave and casual about dealing with challenges of the magnitude she is, is a humbling experience every time. It amazes me what some people call having a bad day or constitute as a crisis. I'll blog about that later though- I was telling you how I went blind.
Okay, so, four hospital systems, the last of which had a doctor who pushed me off on another who then that one was going to let his resident- two weeks from graduation no less- do my surgery. I was flabbergasted. I turned around, walked out, and never went back.
If I'd let them do it, I would surely have lost my left eye.
I say that because even with the very best, a specialist whose research has focused on anterior defects of the eye, which I have in spades - (hyper-deep anterior chambers, iridodonesis...I could go on but I won't.)
Even the surgeon I had was hopeful, until the actual surgery, that they could put in a lens implant. The surgeon who referred me to her- a miracle considering she was not accepting new patients- was worried though. He had a long list of things he warned me he feared were very likely to go wrong- and he explained how and why it would happen.
Every single thing on his list went wrong on the operating table, and I was awake to hear it.
You see, they don't completely sedate you for this kind of surgery. So I got to hear and sadly at points even feel what was going wrong. I wasn't able to speak, but I was able to convey to them that I was aware, at which point they turned up the meds and made it more tolerable.
They told my husband that the surgery would be over in thirty minutes.
One hundred and eight minutes later, they came out to talk to him and said "Well, the good news is she still has her eye."
They had ended up placing the implant in my iris instead of in the back where it's supposed to go- and they hoped that it would work. They hoped it would stay where they'd placed it. They hoped that I'd be able to see with it.
No one could've imagined what would happen to that lens implant.
Thanks to everyone who has taken an interest in my experiences. I'll be back in awhile with the rest of the story.
Losing the Light Part Two: It's Just Not Supposed To Do That
A link to Part One, in case you missed it...
Even as a child, the fact that my eyes weren't quite normal was obvious though I never knew enough to complain about my vision and didn't have a proper eye exam until the age of twenty-one.
My mother hates doctors, what can I say.
From the time I was a tiny baby, the iris of my eyes could be seen to jiggle, like jello, when I looked around quickly then stopped. This is evidence of a condition called iridodonesis.
In April 2009, I embarked on a surgical journey to try to save my eyesight.
I thought about a lot of things I'd miss if I couldn't see any more. Only two of them made me cry.
One, I will tell you. The other I will not, even though it's nothing that I couldn't say out in the open in polite company. It's just that it's something that is so much a part of who I am that it's makes you feel just a little too vulnerable to put it out there into the world.
The one thing I will tell you that made me cry when I thought about going blind was the fact that I wouldn't be able to see my daughter in her gown on her wedding day.
Everyone who loves you reacts differently when you go blind.
No one reacts well.
By that I mean, they all take it pretty hard. How hard I didn't realize until later, but one thing is clear. In any medical situation, the patient is not the only person who is suffering.
My child was such a trooper through it all. Though some people suggested she should be 'doing more' for me around the house, I refused, and I do mean refused, to cast her in a care taking role of any kind. Still, I only when I could see her cry at the sight of me trying to get through the recovery at stages that I realized how hard it all was on her.
Not once did she complain. Not once did she say "this isn't fair, you can't drive me to the mall. This isn't fair, we can't go out and do the things other kids do with their moms."
She never complained. A couple of times she saved me from serious danger when I was at risk and the adults around me were too distracted to notice. One example that comes immediately to mind was the night we got caught in a crush as people were exiting an arena after a Jonas Brothers concert months before my first surgery and she just said "C'mon Mom, this way," and she battled through to get me to an emergency exit. She's my hero.
And oh yes, she so deserves to go backstage at Celtic Thunder this December. And she will. Thank you again, PBS, for making it possible for me to make that happen for her. The band has no idea how lucky they are- they get to meet my amazing daughter.
I'm sorry- I got sidetracked. But it is Random Writing Tuesday so I've decided I'm officially allowed.
So, where were we? Don't know? Well I know where we were about to go.
April 9, 2009. I was lying awake on the operating table, lightly sedated, for that first eye surgery. Before they wheeled me back I was making jokes with the nurses, whom I could only tell apart by their voices. One asked me why my heart rate was up, if I was feeling all right. She couldn't believe I was nervous because I was so calm and chatty.
Of course she didn't know that the only time I am extremely chatty is when I'm pretty much scared out of my mind.
I thought, no, I'm not nervous. I'm about to lie down on a table with two eyes and I might only get up with one. No big...
I remember that it didn't take long before it all went off the rails. They were in, they tried using a device called a capsular tension ring to stabilize the eye so they could remove the old lens and replace it in the capsule with the implant.
Again, they do this on people the world over every day. It's got a phenomenally high success rate- ninety-eight percent, actually, this procedure.
Hi, I'm Bru, and I represent the other two percent.
The lens capsule collapsed.
In fact, my whole eye began to collapse.
My surgeon's tone changed- she was talking very fast. People were moving very fast, and as she described what she now had to do- I could only lie there and listen and wonder why I could feel what was happening. I was pretty sure that wasn't part of the plan.
I managed to moan an objection, and I heard "February, you can feel that?"
I made the same sound again.
She instructed the anesthesiologist to turn up the meds, and for a little while things were fuzzier. But I was awake, and I was aware I might have lost my last chance to ever see again.
In fact, I wouldn't believe it myself now that I was really that lucid during the surgery if not for the fact that as soon as I started to come around (and it takes me a long time to come out of anesthesia- they always get nervous and ask my husband "is she always this pale?") I asked her several questions that I could only have known if I was present in the room. She looked alarmed.
Her first response: "You heard that?"
She is such a wonderful person, the surgeon who saved my sight. She is a tiny, beautiful woman, but she's a giant in her field- literally. The posters of her at the U are three stories high. She's a miracle worker, yet she still referred to me as 'my challenge'.
They saved the eye, they performed several yucky procedures the details of which I'll spare you. One I will mention though is an iridotomy, and they placed the implant in the iris of the eye, instead of in back where it's supposed to go.
This is usually a perfectly viable option.
The day after the surgery I was back for a check up and they removed the bandages. They told me to open my eye- and let me tell you that is not easy when it's stitched up inside and gritted over with a million different kinds of drops and the toxic tears your eyes create trying to wash it all away.
I forced it open.
I felt a little woozy- I looked down at my beloved Converse shoes.
I was pretty whacked out on pain medication- medication that would land me back upstairs in outpatient surgery on an IV because I was so sick from it shortly after this- but in that moment I looked down and I said:
"My shoes are pink."
Everyone in the room burst out laughing
They were ecstatic- they'd doubted I'd get any vision back in the left eye.
Everyone was happy.
I was in absolute agony but I was happy too. I mean, you can't imagine that something so small as an eye could hurt a lot. But have you ever poked yourself in the eye, or scratched it or something? A tiny scratch in your eye can feel huge. It also, I've found, tends to wreak havoc on your stomach when you have anything done to your eyes- causes wicked headaches too.
But it was worth it, because I could see something, anything, out of that eye.
I was in and out of the doctor's office pretty much every other day for that week.
Then, a week later, I was looking around the room, amazed to see light out of that eye again, and something happened without warning.
Suddenly the whole world was shaking. Ever seen earthquake footage? Yeah, that's it. I turned to my husband, and I said, "Uh oh."
That was, I think, one of the hardest points for him. It was the moment we both realized that the implant had failed.
They had warned me that it might move. They were afraid of this. Lens implants are held in place by little plastic hooks called haptics.
Imagine what would happen if you turned a propeller inside your eye...
That's pretty much what happened when my implant broke free.
The haptics- the whole lens, in fact, was spinning like a Ferris wheel, and clawing up the ever living hell out of my eye.
I was back at the doctor's the next morning. The atmosphere was absolutely funereal.
"We have to take the lens out." They said, after I pointed out that if I turned my head this way or that, tilting it, that the lens seemed to float back to the middle. Like a bubble on a level.
So a few days later, that's what they did. A shame, since my vision had been restored to about 20/80 in that eye with the implant, without additional exterior correction.
This time, I told them I didn't want to remember anything, so they gave me Versed to be sure that I wouldn't.
As a result of all of this- and if you can ever avoid having two iridotomies within two weeks time I highly recommend that you do that, because they're a real bitch- the insides of my left eye were pretty much toast. Luckily they healed, but there is scarring.
There were other complications. Allergies to drops that sealed my eye shut, broken stitches, stitches that recessed into the eye, so on and so forth. I was at Kellogg every day for two weeks on weekdays. My surgeon was out of the country on vacation and her poor Fellow had to take care of me. He's living out of state now- I fear he may have moved solely because he didn't want to risk having to take care of me after my right eye was done. I know where he is, I found him online. I joke about sending him a note telling him I'm moving to Oregon and he'd better look out, I need an eye doctor...
It was months before I could even consider getting glasses made- and they warned me that if I couldn't tolerate exterior contacts plus glasses that my glasses would be enormous, and disfiguring as they distort the size of your eyes so much. I call this PowerPuff Girl syndrome, AKA "Bubblesvision". I really didn't care so much- I just wanted to be able to see again.
As I finally did get a pair of glasses (it was, if I remember right, early August by that point) the last of the vision in my right eye was almost completely gone. Again, it was that 'faded receipt in the sun' thing.
My surgeon did not want to touch my right eye.
"Lots of people get by with vision in just one eye," she said, so nervous was she to touch my eyes again.
Knowing the risks of losing the vision in the future on the left side given the beating it had taken in the surgeries, I was determined not to get to a point where the right would be considered totally inoperable, and that's where it was headed. I'd had to put off the first surgeries to begin with because my dad had cancer and had to have a complete laryngectomy, and I was his power of attorney (yeah, while blind. That is another story too).
Then, we found out we were losing our insurance.
She agreed to do the surgery.
My husband's grandmother was diagnosed with cancer and had to have immediate surgery-she passed away from complications a few days later. We were going to go back east for the funeral (he'd been to see her a few days before she passed away already) but his father said that one of the very last things that Grandma said was "Don't let February miss her appointment. She has to get her right eye fixed."
As terrified as I was, I thought of that as I went back into surgery for the second eye.
Each successive surgery got scarier.
The first one on the right eye, simplified because they knew better than to try to put anything in- went quick and seemed to be without problem.
Until the next day.
My eye pressure spiked- the drains in my eyes were blocked. I had no idea that your eyes circulate until suddenly, mine looked like the inside of a dirty fish tank- green/brown and slimy. My eye felt like it was going to explode.
I would prefer another run of 15 hours of pitocin-induced hard labor than to have my eye pressure spike again.
Worst part was that me- me who never, ever eats before noon- was hungry after fasting for surgery the day before and after my initial check up that morning, I ate breakfast.
Then I was back at the eye center an hour later, ready to tell them to take the damn thing out if that was what they had to do to make the pain stop for the love of humanity- they said "we can't touch you for six hours because you ate."
Yeah, I thought that exactly even if I didn't say it.
Later that day I was back in the OR. Yeah, I remember that one too.
They fixed the problem and hoped for the best.
The right eye had always been the stronger one.
I had really pretty good correctable vision in it until December.
One night in December I was sitting there, just reading (reading! Glorious, glorious words!) and something happened. It was like seeing a shower of black sparks- or as my surgeon describes it, pepper in a bowl of water.
It's called Posterior Vitreous Detachment, and when it happened, it tore my retina.
I lied to myself about it. I was deep in denial for a couple of days before I finally called my Opthy. I was sure I was wasting his time. I went to see him the next day (he was in surgery when I called) and I couldn't believe it when he said "Yeah, whatever you were doing this afternoon? Cancel it. You are going to Ann Arbor so they can laser weld your eye back together."
I was to see a resident- they were booked over capacity at the Retina Clinic that day but something happened. A very gray-haired man came into the room and examined me- and though I could barely see him as more than a gray haired, white coated blur I said to the assistant after he left "He's a little gray at the temples to be a Fellow."
She laughed. "Don't you know who that is? That's the head of the entire Retina Clinic. You must have an angel on your shoulder, he's going to do your procedure."
I must have thanked the man a hundred times in the span during which he did the laser procedure. I remember the first laser they were going to use was having issues- they couldn't get the electrical plug to work and I finally looked at this convention of white coated people and said "Does that thing have a stun setting?"
They all laughed. That was good, because I had hoped they would.
The hardest part (well, besides actually holding still when someone aims a laser at your eye and says to you "Whatever you do, don't move and keep looking up and left.") was accepting the amount of visual acuity I lost when the vitreous detached. I didn't do any damage by waiting as I did- I was stupid, and lucky. I have strict instructions to report straight to this doctor now if it happens again and I know the signs.
In some they may be able to do a vitrectomy- but they do not want to touch my eyes. So even after the black specs went away (that was actually bleeding from the retinal tear) the big, floating blob, (the actual vitreous, floating free in my eye) like someone put a smear of Vaseline inside my eye that moves at will- is permanent.
They tell me that they expect the same thing to happen on the left- probably within the next year.
They don't know how much vision I'll lose when it happens.
I didn't paint for awhile after that.
I barely wrote.
I thought a lot.
I leaned on the people I could but tried to keep from those closest to me just how hard it was to see what I'd fought for lost by such a degree.
Still, today, I can see.
Today I can watch the leaves turning over, swaying back and forth in the wind.
Today, I can see the brackets on my daughter's braces gleaming as she laughs and giggles and swoons over Keith Harkin from Celtic Thunder.
Today, I can write this to you, and read your emails. I'd love to read your comments, too, if you have any.
There is so much more to this story than can be told in a couple of blog posts.
I've often said that losing your vision changes the way you see the world, but getting it back changes the way that you see yourself.
I hope to share with you the experience of things like, seeing your own face in a mirror for the first time in almost two years. Getting on a plane, alone, and seeing a sunset at 39,000 feet over the wing of a 757, unable to stop the tears at how beautiful it was while listening to U2 on my iPod, after having to be led everywhere for a very long time.
I hope to try to explain what it's like for someone who loves them as much as I do to see the stars again, for the first time in two years.
Most of all, though, my purpose in telling you all of this is to try to make a small difference, somehow, in how people feel about their vision.
People take sight for granted. They do terrible things to risk it- they don't appreciate that everything is different without it.
So I hope that maybe you'll appreciate your eyes. Be kind to them.
Use them for things that matter. Don't waste them on endless hours of reality television and video games, I'm begging you.
Go see fireworks. Memorize every aspect of the faces of the people you love most. Go to Walt Disney World. Seriously. Whether you have kids or not. Book it now. When you see the monorails, think of me.
Read, read, read.
Write, write, write.
Then put down your pen and watch the sunset. That's what I'm going to do now. Then I think I'll try out my new little Daisy Rock Debutante acoustic. It's bubblegum pink, and I love it.
I'll be back later with another Bru Interviews You! segment.
In the meantime, thank you for reading. I hope that you got something out of it, and I appreciate you listening.
Now turn off the computer and go look at something pretty.
(Author's note: I ended up having another eye surgery in March of 2011 because complications in my right eye had basically robbed me once again of usable vision. I am very grateful to my surgeons for coming through for me again and leaving me with at least some, if not all, of my eyesight. I may always be legally blind without my special glasses, seeing light and color and motion only, but it beats the hell out of being blind.)
Writer's Block Isn't Real, Except When It Is
Warning: This post may contain triggers for those with depression/anxiety/similar disorders.
I’m February Grace, and I have a confession to make.
I have writer’s block.
There are those who will tell you that writer’s block is a myth; that it is simply a matter of cutting out all distractions and sitting your ass down in the chair and not moving until you have words on the paper or screen.
There are those who will tell you that you can’t accept that you have writer’s block any more than you can accept that you don’t feel like going to work on a particular day; you have to work, and if you’re a writer, writing is your work, so therefore you MUST write.
There are those who will tell you hanging upside down like a bat will cure writer’s block (Dan Brown, and no I’m not kidding. If it works for him, good for him, I rejoice for him.)
I am not talking here about the normal ups and downs and dry spells that all writers, or I should say all artists no matter their field, seem to go through.
I am talking about real inability to write caused by depression (in my case nasty Bipolar1 depression) or even possibly by the medications used to treat this and similar disorders.
That kind of writer’s block is as real as I am sitting here, I promise you.
I have written in the past here about what it’s like to feel the surge of creativity that can come with Bipolar manic episodes of varying degrees; until you get to a point where you’re so manic you can’t do anything. The hypo-manic phase seems to be the most productive for me.
I even wrote long ago about my fear that taking medications to stop me from, oh, continually thinking of new and different ways to kill myself (which does happen when I am at the worst points) would take away my ability to write, paint, to be an artist and musician.
That day may have come and gone, and I don’t know what to do about it.
My doctors and therapist don’t know what to do about it, either.
They are in no hurry to see me go off of the medication that keeps me alive, just so I can get myself good and worked up into another manic state and write another novel (it seems that I must be manic to a degree to write novels: I had no idea this was true until the medication stopped the mania, and hence stopped my ability to write a new novel.)
They talk about being healthy, making healthy choices.
About staying medicated.
I have feelings so mixed about this, I cannot even begin to explain it to you.
I am not, I know, the first artist who has gone through this and I won’t be the last, and that’s why I’m writing this post. Because I know there has to be someone else out there, especially someone else who may be taking the kind of medications they give you to control Bipolar 1, OCD and PTSD (and the mixed states that Bipolar1 tends to bring on—the worst states of all, when you are both manic and depressed at the same time. That is how I get.)
My illnesses are disabling: this is why I can’t hold a ‘normal’ job like I used to (though my physical disabilities prevented that even before the Bipolar did, it’s a chicken/egg situation there and doesn’t matter really- bottom line: I’m disabled)
THIS is the difference between the kind of writer’s block I get and the kind that other people suffer with very temporarily (a few days or weeks) and then shake off and suddenly, they’re cured! When all they really needed was a break or a change of scenery or a new idea to work on.
For me, all ideas have simply vanished from existence. Where writing for me has always been like simply taking dictation when things were going well—the characters seeming to be real people in my mind, fully formed, who were telling me their stories—now there is silence.
I hear their voices no more.
I can’t paint, either: I stare at the canvas with brush in hand and have no clue where to begin.
I can’t bring myself to play music though I probably could still do that—it is too much a reminder of all the other things I cannot do.
And I don’t know what to do about it.
Neither do the professionals. That is the part that is really scary.
They give me these regretful looks, like they are holding back saying something, like they wish they could do something more for me.
They are worried more about keeping me safe and alive than about the idea of me ever writing another word of anything. Truth is I wouldn’t care if I couldn’t write another novel at this point in my life (I have a sequel draft completed for OF STARDUST if it is wanted or needed—and editing and revising uses a different part of my brain than writing fresh—that I can still seem to manage in small increments.) but I do miss writing poetry and short stories. Desperately.
I miss feeling like the me that I used to be. Yes, perhaps that was the me that lived on Jupiter according to my doctors and that got myself into a lot of trouble. The me that could have just as easily ended up dead.
I think about the writers and artists who struggled without the aid of modern medication and how many of them ended up leaving this world before their time.
I think of those who did have the aid of modern meds but couldn’t stand how they felt so stopped taking them and still ended up killing themselves.
I don’t want to be a statistic.
I don’t want to NOT be an artist, though, either.
I don’t know what to do, or what to think at this point. I guess, if you’re still reading this and you’ve struggled with depression and writer’s or artist’s blocks of any kind I want you to know you’re not alone. It’s incredibly difficult to talk about this, it feels like something I should be able to overcome with sheer willpower, but I can’t. It is beyond my ability to physically turn back on a part of my brain which has been switched off by the very medications meant to keep me here.
I can only hope that a recent tweak in those medications might open the door a crack soon, just enough, to let a few words out. There have been a few micropoems; there has been thought about ideas for short stories. Maybe that is reason to be hopeful.
I hope that is reason to be hopeful.
One of my friends who has been struggling with serious (and very real) writer’s block recently broke through it and is writing again and I couldn’t be happier for her. I know how good it feels to get back to it—I have been through blocks before, though nothing as long and serious as the one I’m in now, and somehow managed to find a way out of it.
I can only hope now that I will find a way out of this, somehow, too. Without jeopardizing who I am, or my life.
I have thought, long and hard, about the idea of dying for my art. I know that everyone would tell me that it’s better to be alive and never create another thing than only remembered for what you created before you crumbled and died.
I also know, though, that it feels like I am dying a little, a day at a time and so very slowly, without it.
Now, a post that sums up many of my feelings about having Bipolar Disorder 1, OCD and serious anxiety disorder...)
The Melting Point of the Sky (Originally published July 30, 2013)
Imagine being so mentally and physically exhausted that the idea of making a cup of instant coffee in the microwave feels an insurmountable task.
That’s where I’ve been the past several weeks.
My brain has been like an engine trying to run without oil— and we all know what happens to those.
My mind has been frozen and as useless as seized engine components, and there has been nothing I could do about it.
This is the fall after the climb.
This is the price to be paid for manic bursts of energy that leave you sleepless, overjoyed, and productive beyond imagination.
Earlier in the month, I turned around a pass of manuscript edits in four days’ time.
An entire novel’s worth of edits.
The truth is, once I started, I couldn’t stop.
Needless to say I didn’t sleep much: my brain would not stop working on the issues that needed to be addressed until I’d addressed them.
I didn’t eat or drink anything that wasn’t put directly in front of me by my husband.
That burst of unbridled power overriding all common sense (which has no place in Bipolar mania) has carried over into the downfall back from mini-manic episode into the pit of depression.
My brain was so overheated, overwrought from working so much so fast and not being able to stop myself from doing it that my doctor ordered that I, quote, “Just chill out” during my downtime between editing rounds.
If only my brain would listen.
But it won’t. It aches for more of the same, hungry to get back to that biochemical high that comes from hypomania before the true mania really goes bad, a place in which you can create things you never imagined possible.
My mind did not want to stop when the work did.
With nothing to do with itself but wait and being unable to write anything new at the moment (my brain is very particular about if and when it lets me write these days— cruel taskmaster. This is not writer’s block. This is inability to function, period) my mind has continued to overheat instead of cooling down as prescribed. If only it could be forced to follow doctor’s orders.
At one point yesterday I was trying to sleep some more, because at least sleep would make the day go by and end faster, and I had a thought at once so beautiful and so terrifying that I could only put it into one sentence:
This is the melting point of the sky.
That moment when everything washes away and all that is left is darkened silence: no moon, sun, stars or atmosphere to breathe. You feel like a part of all around you— an indistinguishable lump of nothing stuck on a lifeless planet on which you must try to live though it has become incapable of supporting life.
Why do I write about these things, you might ask?
Why do I try to give insight into a condition that most people would rather pretend doesn’t exist, or if they do acknowledge it, get what it does wrong most of the time?
I write about it because.
Because people misunderstand what it really means to be truly Bipolar.
Because people still joke about it or ignore it or make off the cuff, insulting remarks about it, like “I’m feeling so Bipolar today.”
Let me just make one thing clear for anyone who may wonder— until you’ve experienced that rocket-fueled rise into the stratosphere completely beyond your control (a terrifying feeling, not always euphoric as depicted in fiction) then the free fall and crash landing and known, truly realized (only after the fact) that you are not in control of your own mind, can you understand how devastating that thought is: how devastating this disorder is to those who have it and those who love them.
Two years post-diagnosis (the proper one, anyway) I am finally starting to grapple with that. The idea that it is only the medications that keep me from doing incredibly stupid things (though let me make it clear that unlike some people with the same ailment, I have never been a danger to anyone, save myself.)
That sometimes the only choice I have is to accept that the most I can do in a day is sleep, just to get through it until the next one, which may or may not be better. That on the days when I can’t sleep, sometimes all I can do is watch the second hand on the clock and count down the minutes until I can finally sleep again.
It is the nature of the beast and it is a vicious, life-threatening one.
I know the melting point of the sky.
It’s that moment in which my brain morphs into a pump needing to be primed but lacking water; grinding away at its own parts until the heat generated starts to break each one down.
You have to start very small after such a long drop, to try to climb back up out of such a deep chasm, a hole that feels as inescapable as the black ones in space.
Today, I guess I’ll start by microwaving some water, and making a cup of coffee.
I might even remember to drink it.