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.

The life changing diagnosis, part 1

Where were you when Kennedy was shot?  The death of Elvis?  John Lennon?  Princess Diana? How about Michael Jackson?  Whitney Houston?

Events like this shake a society by bringing it face-face with its own mortality.  It doesn’t always happen on a personal level.  When it does it’s usually good material for an After School Special, a Movie of the Week, or a “very special episode of…”.  Lucky me, I’ve never won the lottery, but I’ve had the life changing  conversation with my doctor twice.  For those of you who have never had that conversation, I’ll try to describe what the first one was like.

I had just turned 30 when I moved to New Orleans.  I got a job as a tour guide.  I used to walk miles every day.   I lost weight, I was in great shape. Then my back started to twinge.  Just a little at first, now and again.  And my left leg kind of hurt.  No big deal, just walk it off, right?

I walked and I walked and I walked and it got steadily worse.  After a few months I couldn’t sit, stand or lay without pain. Nothing I did made it better, and nearly everything I did made it worse. I had no health insurance, no access to a doctor, and no Web MD.  I carried on until I collapsed.

I vaguely remember standing in line at the ER of Charity Hospital, but I don’t remember how I got there.  By then the pain was so bad I was having trouble seeing, or even breathing. The flaming pain started somewhere at my hip and radiated down until it defined every second of every day.  Eventually, I fainted.  I don’t remember hitting the floor, but I do remember two bands of steel suddenly wrapping around me.  I was told later that one of New Orleans’ Finest saw me go down and got me to a wheelchair.  I don’t know who you are, kind stranger, but from the bottom of my heart I thank you.

I worked my way through the Charity system, which could best be described as “hurry up and wait”.  I was immediately scheduled for an MRI, but the first available was over a month away.  I waited.  I didn’t have a car, or a cell phone.  The MRI department was in the hospital basement, and I remember nearly dragging myself down a long, very cold hallway, only to be told they had tried to call me – my appointment was cancelled.

I burst into tears.  They gave me the MRI anyway.

That’s when things got surreal.

I believe it was the next day – I got a call from a neurosurgeon.  He’d seen the results and we needed to talk.  NOW.  Could I come in that day?  No?  How about tomorrow morning?

When I had answered his call I had picked up a normal phone.  When I put it down it seemed to weigh as much as a bowling ball.

The next morning I wasn’t directed to the hospital clinics, but to a floor of private offices. The surgeon walked in with a colleague, and the two of them were very serious.  I was immediately put through a series of simple tests.  Push, pull, stand, sit, can I stand on my toes?  I could do all that.  But when they asked me if I could stand on my heels… I could not.  I didn’t know that – how often do you stand on your heels?  I couldn’t do it.

Then my world changed.

When they said “degenerative disc disease” I didn’t know what it meant, though it sounded dreadful.  “Ruptured disc” got the idea across with more clarity.  There were two of them in my lower spine.  One was inoperable.  The other needed immediate surgery.  In addition, I suffered from a rare birth defect.  Normally it wouldn’t matter – unless I needed spinal surgery.  In this case if the surgery went wrong I had a good chance of ending up a paraplegic.  It could even kill me.  Without the surgery the pain would only get worse, and I was already crippled from it.

How did next week work for me?  They left the room to let me think it over.

Most people, when talking to strangers, try to be friendly.  I was smiling and nodding throughout the conversation.  After they left I realized I was still smiling, as though they had been talking to someone else, saying something else.  Subconsciously I was waiting for someone to pop out from a hidden door and say “just kidding”.  When I stopped smiling everything just seemed to… freeze.

It was as though I could hear the air, or the colors in the carpet.  I remember the fabric of the chair was burgundy, and slightly rough.  The carpet was made of tight little wine colored loops.  The frame of the window was black and the glass had tiny bubbles in it.  The people on the street below were walking in the sunlight, the cars were driving by like everything was normal, and fine.  Oddly, it was as though I was seeing a chair, a window, a carpet, even sunlight for the first time.

In retrospect I’m sure they’d seen a similar reaction before.  The surgeons left me enough time to get a grip, but not enough time to panic.  The surgery was scheduled for the following week.  I thanked them, and left.

I don’t remember getting home.  As I didn’t own a car then I took the streetcar everywhere.  Not easy with ruptured discs.  But I don’t remember it, or calling my parents, or telling my housemates what was going on.  My memories are all strangely specific, like the light and shadows forming cracks on the sidewalks, or the sound of people talking, but not their words.

My emotions were locked in a crazed merry-go-round loop.  I could be dead in a week, or paralyzed.  There was no getting out of this, it would never get better.  My choices were stop where I was or go through this nightmare of hospitals, surgeons and recovery, knowing that it was the first surgery, not the last.  My traitor back had become a dangerous hurtful thing I could not escape.

I had no choice, which was confusing.  Surely there had to be options.  Where was the guy who would pop up and say “just kidding!  Here’s a prescription – pop this pill for a week and you’ll be fine”?  I kept waiting for that guy.  In truth, a little part of me is still waiting for him.

Of course, I lived through it.  Or, more accurately, I survived.  I didn’t know it at the time, but the person I had been, the one who took things like good health and long life without pain, died that day.

The second time I had that conversation, it was even worse.  But that’s for another post.

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?

PEBKAC

… or, traction really hurts.

So… heh heh.  It turns out I did all this to myself.  Hey, what do you know?  Curling up on the sofa for hours on end hunched over a smoking laptop is bad for you!   So all this pain and drama was caused by yours truly.  Now, it’s certainly true that I have “advanced degenerative disc disease”.  But had I taken that into account and maintained good posture, none of this nonsense would have happened!  The moment I started acting like a baboon, my spine reminded me.

So the happy news is that with therapy and common sense I can avoid surgery.  OMG what a relief!!  And I can probably cut the narcotics to a bare minimum.  Unhappy news is that this is self inflicted and traction, at least for now, is unavoidable.  As my condition improves it won’t hurt as much.  In fact, it may feel good down the road.  But for now… err, yeah.  all those visions of the rack are pretty much on target!

Ow.

I must be better. I didn’t kill anyone.

I wish I had a better memory for dates.  I’m pretty sure this has been going on since Halloween.  But certainly before Thanksgiving.  So what happened is, I dislocated my right kneecap.  That hurt so bad that I finally decided to go to the doctor, and while I was there I’d have her deal with this pain in my shoulder, which I suspected was a symptom of degenerative disc disease.

She takes a look at my knee, now the general size, shape and appearance of a sausage, and tells me to make an appointment with some orthopedic specialist, if I can find one.  I clearly need an MRI, for the knee and my neck both.  If I can’t find a specialist who will take me soon, go to Emergency.

I call specialists.  None will take me without a referral from my primary care physician, or they don’t take Medicare, or they don’t take new patients.  Hum, says I.  Ok, I’ll go to Emergency.  3 days later I’m in Emergency.  Where they diagnose me with a “sprained shoulder, sprained knee” and tell me I’d only get an MRI if my brains were dripping out my ears.  Maybe not even then.

Grr.  says I.  It’s now mid-December, and I’m having a heck of a time dealing with holiday schedules, pain and what not.  So I decide to wait until the beginning of January.  If the magic elves of health didn’t waive their wand and fix me by then, I’ll go to another emergency room and ask them, point blank, what the hell to do.

January 3rd arrives, and I spend 4 hours on a gurney in a hallway.  3 doctors came to look at me, all with puzzled sympathy.  All agreed I need an MRI, and each one, plus a nurse, asked me why my doctor didn’t write a referral.  Um… I still don’t know.  But the only thing they could do for me was to write official follow up care for me to see… who?  My primary care physician.

Pain makes me bold – I make an appointment for her from the ER for 1 hour hence.  If I can get across town in an hour, she can get me in.  Oh good.  i’m sure that will solve ALL my problems.  I’m discharged and head for my primary care physician.  Who tells me there’s nothing she can do for me, but writes me a huge prescription for vicadin.  Gee, thanks.

Ok, I’ve had it.  Let me see if I can explain why.  Imagine being shot in your left shoulder, close range, from behind.  The pain radiates down my left arm, stopping at the elbow.  The pain from the elbow to the fingers mutates into wild tingling – imagine having a firm grip on an electric fence.  I can’t make a fist.  I can barely use my entire left side.  My last two fingers are numb, though I can still type.  The pain is 24/7.  Oh, and the headache.  I haven’t mentioned that yet.  See, with discs, the pain is never specific to the area.  Sciatica radiates to unrelated places.  When my back ruptured, I felt it down my left leg, not the back.  So this projects to the left shoulder and arm, and to a headache that, again, never stops.  Now, it’s no where NEAR as bad as a migraine.  But it doesn’t stop either.

Anyway, to put it briefly, quality of life has ceased to exist.  And this bimbo has me running in circles for months.

So I called the hospital directly, and I spoke to a very puzzled receptionist.  What do you know?  My doctor writes referrals for them all the time.  Why didn’t she just write one for me?  Hell if I know.  She DID write me a nice presription for an MRI, but not for any specific place.  Could I give that to them?  Receptionist is now deeply puzzled.  Um, no, they don’t take that.  But if her office could just fax the order, I could be scheduled for an MRI in a day or two.

Say what?  Yeah.  A day or two.  That’s all she needed to do.  Or she could play this horse shit game with me and have me feeling as though I’ve just been shot for a few months.  They say pain builds character.  OMFG.

I had the MRI last Thursday morning.  The experience was utterly surreal.  Soft music, soft lighting.  The MRI itself was warm, and inviting, with soft music, and a scented eye pillow.  No, really.  And get this.  When I left, they had… wait for it… fresh baked Mrs. Fields cookies for us.  Fresh. Baked. Cookies.  Yeah.

The first MRI I had was in New Orleans.  It was in the basement, at the end of a hallway, dimly lit.  They yelled at me for showing up, because they cancelled the appointment without telling me.  Finally, after I tried to kill a few of them, they decided to do the test.  It was cold, extremely painful, and there was this guy with a metal bowl and a jackhammer…

I’m pretty sure I just imagined the MRI last Thursday.  Probably the pain pills.

Anyway… I called my doctor last Friday.  Do you have the results?  No.  They’d call me the moment they arrive.

I call again today.  Results?  Um, no.

I call the hosptial.  Do you know when the results might be ready?  Oh!  Says the nice lady at radiology.  They knew how important it was, so they sent it to my doctor last Thursday.  Morning.  9am.  2 hours after the test was performed, my doctor had the results.

Oh fuck me.

I call my doctor again.  Um… results?  By now the receptionist is in apology mode.  She knew they were here, and has been leaving messages for the doctor.  That’s all she can do.

Ooook.

So I call the hospital and explain, in detail, what the hell is going on.  The nice lady helped me find another doctor, and put me in contact with radiology again, who bundled the results up for me to pick up personally.  My appointment with my new doctor is next Thursday.  Oh yay, no information until then.  But at least it was progress.   I called back my now former doctor and – very politely I must say – explained to the nice receptionist that I have a new doctor, and she doesn’t need to pester her boss any more.

I hung up.  Five minutes later the phone rings.  What do you know!  It’s my former doctor.  There’s a long awkward pause.  “I hear you’re getting a new doctor.”  I explained that I was under the impression she didn’t really have time to deal with me, so perhaps it’s for the best.  She explained that it could take up to 48 hours for her to call with test results.  Since it was now 4:30 on Monday and she’s had the results since Thursday morning, even that didn’t make sense.  So finally I just asked if she could tell me if the disc was ruptured.

Instead she reads me a few pages of jargon.  From what I can tell I’ve been re-confirmed as having advanced degenerative disc disease.  Thanks, but I knew that.  The problem may actually be one disc down from what I thought, C6 instead of C5.  And it looks as though it’s inoperable.  The degeneration is causing damage to the nerves.  I think.  Like I said, it was a ton of jargon and it was less than helpful.  But I thanked her anyway and hung up.

So, after this utter circus, it *seems* the problem isn’t a figment of my imagination.  However, that makes no difference.  According to the great font of knowledge, the internets, if it’s not a ruptured disc my only two options are narcotics or traction.  I’ve already tried everything else.

Christ on a pony.  I think I’ll have a little lay down now.  I’ll see what those in the know say on Thursday.  Maybe I can get a straight answer then.