Today is my anniversary

A “Jubilarian” is someone who is celebrating something special, especially the anniversary of something special.  Today is one of those special celebration days.

One year ago today, at this very hour, I was starving.  I hadn’t eaten anything since 7pm the night before.  I was standing in a carport, it was snowing, my head was pounding and I was having a full-blown panic attack.  They’d predicted snow, yes.  But only flurries.  This?  This was not flurries.  Flurries are not measured in inches.  Several inches, by the look of it.

I was waiting for my father, because I couldn’t drive myself.  No one drives themselves to surgery, much less something this big.  But if he couldn’t make it through the increasing snow, the rush hour, if there was just one accident, I wouldn’t make it.  They’d cancel the surgery, I just knew it.  I’d have to somehow live with this pain longer.  Maybe I could call an ambulance… could they do pre-op on the road?

As each minute passed my anxiety increased, my blood pressure rose and the pain reached new levels of “Kill Me Now”.  This was to be my second spinal surgery.  The first was on my lower spine to repair a ruptured disk (the other, still inoperable, remains to this day – probably the subject of surgery #3).  This one was to repair a rupture between C5-C6-C7.  Without the procedure I felt as though I’d been shot through the shoulder, close range, but somehow the shoulder was still attached.  My left arm was on fire and my migraine had a migraine.  I smelled pain, I chewed pain, my entire world was pain.

Suddenly, there he was.  Late, yes, but not by very much.  I was shaking with relief, nearly babbling gratitude.  Now all we had to do was make it across town, in an unexpected snowstorm, at rush hour.  I don’t know how we did it.  No one else was expecting heavy snow either – the normal procedure of “set your clock an hour early to get to work on time” hadn’t been factored in.  And yet, somehow, promising to hire a team of huskies if he had to, my dad got us through.  I checked in exactly on time, headed for my bed in OR… and waited.

And waited.  And waited.  And waited.  And oh my heavens waited some more.  The nurses continued to update me as best they could.  The previous surgery was taking longer than expected.  No, the doctor started on time, she was just being thorough.  She was thorough to the tune of an additional six and a half hours past when I was scheduled to go in.

The nurses were so grateful I was taking the delay so well, they bought my family lunch.  I wasn’t taking it well.  What they didn’t know is that I’d handcuff myself to that bed if I had to.  I’d wait until midnight if I had to, just don’t cancel the surgery.

Still, six empty hours is a long, long time to contemplate your mortality.  Oddly, this is the first surgery I’ve ever done that.  I’ve had my tonsils out, my knee operated on, I’ve had windows put into my sinuses and of course the first surgery on my back.  Sad to say, I’m no stranger to the OR.  But I’ve never thought I’d die, until this one.  In fact, I was so convinced I might die that I set up my will and signed a DNR.  I asked the staff to offer a prayer for me (it’s a religious hospital).  I even set up a “If I Die” app on my Facebook page.  I don’t know why it hit so hard this time.  Maybe just the words “spinal fusion” were enough.  Or just thinking about it.  She was going to slit my throat, push my vocal cords over, and fuse my spine from the front.  Really?  How?  I didn’t want to know.  I still don’t

I didn’t die.  In fact, the surgery was a blazing, almost startling success.  But 1 year ago right now I didn’t know that.  1 year ago right now I was in so much pain I couldn’t see.  1 year ago right now I had zero quality of life and very little hope.

At this moment I am looking out over a gentle bed of new snow.  My fingers are a little cold and I really should have worked out last night.  I’m training for my first 5K.  Apart from the fingers I’m in great shape.  My head doesn’t hurt, my shoulder is fine, I can feel my arm and the shot gun feeling is a distant memory.

Without going through that, I would not appreciate sitting here.  Sitting still, without the pain.  I’m grateful for the perspective.  I’m even more grateful I don’t feel like that anymore.  I’m grateful for modern science.  I’m grateful I had the opportunity to have this surgery that even a decade ago would have been much more complicated.

My attitude is one of gratitude this morning.  This is wonderful, and I can handle whatever comes next.

Today is my Birthday

A few years ago we were encouraged to keep a journal, under the assumption that 12 months later so many unexpected things would happen that the journal would offer powerful insight. 12 months after that challenge was issued, they were right. I was startled by the unexpected results, in that hardly anything happened that year of note. Of course… that was the last year I can say that about, but I digress.

At the moment I feel something similar. One of my primary and least likely goals was to survive 10 years after my diagnosis. Today is the anniversary of that 10th year. During the last decade I tried to imagine this day and always came up short. In many of my therapy sessions they’d ask “where do you see yourself in a week? A month? A year? 10 years?” I could never answer.

So here I sit, trying to somehow take an assessment of the last 10 years and what it all means. And I find that instead of a raucous celebration, I feel an odd sort of numbness. A bewildered sense of “now what”? I have climbed the mountain. What do I do next?

I suppose I should start with the obvious. My diagnosis is, specifically:

  • Premenstrual dysphoric disorder (PMDD) AKA “rapid cycle bipolar” (ok, I admit it. This is in ADDITION to the Bipolar I diagnosis, not instead of)
  • Borderline Personality Disorder
  • Prosopagnosia (face blind)
  • Anterograde amnesia
  • Degenerative Disc Disease in 5 disks
  • Possible stroke (undiagnosed)

Looking over this list, my knee-jerk reaction is to strongly advise anyone who enjoys good health to thank God every single day, and never take a moment of it for granted.

But what else?

I’m typing in the dark. The sun is setting but I haven’t opened the windows yet. Everything in this house is designed to combat heat and the Great Oppressor who delights in cooking us daily. Because of this, the only light source currently is the monitor. Looking down, I can see the scars that cover my arms in stark 3-D. The left arm is Much worse than the right, because I’m right handed. There’s a large round scar on the back of my left hand, and criss cross lines moving from wrists to elbow. The darkness does not reveal similar scars covering both legs, from knee to ankle. Most of these were inflicted in the first two years after the diagnosis, which means the freshest is 8 years old. Even still, they’re dramatic. Especially in this light.

Why the hell would anyone do that to themselves?

A mental illness acts on its own accord. Just as a tumor grows and gets larger without asking permission of the body it inhabits, so does a mental illness act without asking permission of the host. The best way to describe it is a parasite that occasionally takes control.

The Beast within makes a person numb, controls the exterior, including speech and motion. One way to bring myself, my lucid self, back to the forefront was by pain. If I could just FEEL something, my true self would react.

In this way, I fought for my life. I brought myself back. And then retreated. And brought myself back again. And on and on. It’s not the story of my life. It’s actually the story of my death. Whatever had been me died ten years ago today. The scars are her epitaph.

What came after? For a time there was the crucible of simple, pure madness. One that proves Nietzsche was right. After that was silence. A stillness of mind and body that, in retrospect, has more in common with death than life. Gestation, perhaps.

What do you think an infant experiences as it’s born? Discomfort certainly. The area is too small, and it can’t breathe. The lights are too bright, and it’s cold. There’s pain, and noise, and a desperate unhappiness that an uncongealed brain simply can’t take in. And so it wails, a piercing sound of confused betrayal.

That’s what happened when I woke up. It was sudden. It came with a question. “Wait, how can that be right? This doesn’t make sense, because …” This phrase ushered in everything I am now. It took maybe six years, and some part of me wonders if I shouldn’t be starting the first grade this September. In a certain way it would make sense.

Ten years. I have survived, and to what end? I used to think that Earth defined the pointless. That humans only existed to breed. A life, a death, the species propagates, and who cares? But now one thing I’ve come to understand is the journey. The part of this which can not be seen, unless gifted with a very special vision.

And that, at last, is the point. The answer to life, the universe and everything. The understanding of the journey, the paths that have been travelled, the promise of the destination, the lessons learned along the way.

Unless I had died, I would have no chance to live. August 17, 2001, was the best day of both my old and new life. It took ten years to understand that. But what is ten years, when on the path?