Through the Eyes of a Child

I find that children are fascinated by my “otherness.”  They are enthralled with the adaptive devices I use.  They want to know how I manage.  Whenever possible, I share my world with them.  I let the children I know ride in my wheelchairs – they LOVE my powerchair.  I let them operate the buttons on my van that deploy my ramp, I show them how the hand-controls work.  I let them work Pearl through “bring it” by dropping things on the floor showing them how to have her retrieve. I show them how she pushes my wheelchair. 

Kids see right through my “otherness.”  They quickly understand that I’m just a person. A grown-up like all the rest but I come with all these cool toys. 

I was zipping through the lobby of a medical building.   A mom and her son of about 4 or 5 years old were playing quiet games to pass time.  The kid spots me and shouts out:

“HEY! WHY DO YOU HAVE THAT WHEELCHAIR?” 

The lobby goes silent. Poor Mom cringes and chastises said son.  I’m running late but I smile and roll over.  Kiddo looks and me and mumbles “Sorry…”

I tell him it’s ok and I mean it.   I tell him that I hurt my back and now my legs don’t work but it doesn’t hurt.  (OK, a little lie but I’m not explaining neuropathy to a child.)  I remind him to always wear his seat belt and look both ways when he crosses the street.  It doesn’t correlate to my injury but kids want something to hold onto and this, I’ve found, works.   

We talk for a couple minutes about how cool my chair is, how I drive, who helps me when I need it.  We part, kid satisfied, me amused. 

Kids are curious.  As a mom with my own share of cringe-worthy anecdotes tucked away, I know children have no filters; they say whatever pops into their little heads.  And, while capable of great sincerity and clarity, they can be rather… inartful in their questions. 

If I may, you’re not doing your children or people with disability any favors when you stifle your children’s curiosity.  When you tell them not to stare or not to ask questions, you turn me into something foreign and off limits.  We’re taught as kids not to stare and by the time we become adults, that becomes “don’t look” rendering people with disabilities invisible and left out of the main stream.   

I know you’re trying to be polite.  I know you’re trying to protect your child.  By setting me off-limits you unknowingly contribute to turning me into a pariah.  If you’ll allow us that moment to connect, we share our human-ness and moving forward, that child might just see the person before the disability. 

I find that kids are at first captivated by my differences then enthralled at my same-ness.  Your child is my hope.  If your child accepts and embraces my humanity, perhaps one day PWD will have true parity.  

Another day, another trip.  At the grocery store another little boy loudly points out “MOMMY, THAT LADY IS IN A WHEELCHAIR. WHAT’S WRONG WITH HER?” 

Mom says “Nothing’s wrong with her, but yes, she is in a wheelchair.  I have no idea why.”  

I like this mom and give her a little smile, she continues “If you ask politely, maybe she’ll tell you but you need to ask nicely.” 

She’s looking out the corner of her eye to gauge my willingness to interact.  I give a little nod.  She helps her little one with a more open question.  “Excuse me Ma’am, are your legs hurt?”  The kid and I have a great conversation including his promise to grow up and be a scientist and make a “leg thinger” to help me.   

Who knows?  Maybe he will.

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The View from the Floor

Gravity is no longer my friend. It’s more than an age thing.  It’s a spinal cord injury thing.

I fell last week.  I do that sometimes.  I was moving from my bed to my wheelchair when a spasm folded my body and I went down. Not like the last time where I broke almost every bone in my legs and feet and spend 4 months in hospitals and nursing homes.   

It was more a controlled slide but I was down nonetheless.  But this fall was different.  First, positioning. When I fell, my body angled – planked – against the side of the bed with one arm pinned under me and my legs wedged at an opposing angle between my wheelchair and the bed, my free arm at a difficult angle to reach down beside me or over me.  The second was timing.  With the holiday weekend, one aide left a bit early one day and the next came a bit late the next so I spent about 27 hours trapped in that one spot.

That’s right.  27 hours.  More than one whole day.  Trapped in one spot. Not in one small room like an elevator or a closet.  Trapped in one position. 

For 27 hours.

At first I tried to reach my phone. It went flying when I went down.  Even Pearl, my devoted service dog, couldn’t reach it.  Later, we found it was buried under my legs. 

Then I yelled and yelled and yelled.  At first “Help!” then “911! 911!” I yelled in Spanish “¡Socorro!” No one came.  I gave up, saving my voice for the moment I heard someone nearby.  They never happened near. 

I’ve trained Pearl for moments like this. “Pearl! Ring-ring!  Find the ring-ring.”  She goes searching for the phone.  She loves this game.  She searches the bed, under the millions of pillows. She sniffs the edges of the bed.  She widens her search; goes in the bathroom and out into the rest of the house.  She comes back and huffs.  I’ve made the game too hard this time.  This is no fun anymore.  It will be tomorrow before we find out just how hidden the phone was.

I tried to flip myself for hours.  I strained and wiggled but I was just too pinned.  My shoulders angled just perfectly against any hope of movement.  That trapped arm began to tingle.  After a few hours, I started to worry about the potential of losing it.  I focused my attention on relieving some of the pressure to preserve my arm – straining, shaking with effort trying to raise my paralyzed body off my precious arm just enough to let the blood flow if I couldn’t free it completely.  I don’t want to move too much. I cannot tell how bad my legs or hips are and I don’t want to risk breaking them (further?) or doing unknown, unfelt damage to them.

Once it became clear to me that I wasn’t going anywhere.  I began to try to mark time.  I had no visible clock, no television or radio on.  Just me and the girls, a sliver of window and the shadows. 

“Ok” my calm adult inner voice reminded me “you’re going to be here for a while. You need to save your strength, stay calm and keep your wits.”  I worked on a succinct message for when I heard a passerby and settled on “I’m trapped! Call 911!”  Then shouting my address.   

Next worry: my skin. As a person with a spinal cord injury, I have to shift my position regularly to avoid pressure sores.  General guidelines suggest that in bed, I should roll into a new position every 2 hours.  “How long has it been Jen?” I had no idea.  Was time passing faster or slower than I thought?  I had no measure.  I tried to wiggle, to shift but I was putting more pressure on my arm. 

Conundrum: which is worse, a pressure sore which may or may not kill you or losing your arm?  A pressure sore was a gamble, a big one that could kill me.  Losing my arm meant so much more.  Without an arm, I’d be unable to move, to wheel, to transfer, I’d lose what remaining independence I have. I’d rather be dead than deal with the consequences of the loss of my remaining independence.

Decision: better to risk the skin if you can protect the arm.  OK then.  What physical energy I had was to be used to relieve the pressure on my arm. 

I tried to assess my body.  Using the limited movement in my free arm, I felt around.  No wetness.  Good, I’m not bleeding…that I can tell.  No bones sticking out that I can find.  The angles my body formed seemed non-threatening.  I found my catheter and placed it in a position where it wouldn’t kink.  That could lead to deadly complications real quick. 

Why is it everything seems to lead to life-threatening complications when you have a spinal cord injury?  I made a mental checklist of the dangers I was facing while laying there waiting for signs of life from my neighbors.  Somewhere in the middle of that, my eyes closed.

When I awoke I was disoriented. Was it a few minutes or hours?  The sun spot I had been bathed in had moved.  How long does that take?  By my most conservative estimate, it had to be mid-afternoon.  1?? Maybe as late as 3?  If it was 1 then I’d already been trapped there for about 4 hours.  I have to move every 2.  “We’re not thinking about that” my mind corrected me sharply.  I took a deep breath and with the muscles I have left I lifted the weight of my chest and shoulders up off my trapped arm but only a bit. I cannot life my body even a fraction without the use of my arms.  Shaking, sweating, even my eyeballs were shaking I held it as long as I could and fell back.

Every so often, I ask Pearl to go find the phone.  She tries so hard but always returns without it.

I studied the carpet.  The patterns in the fiber.  The bits of fuzz here and there.  I looked at the wall, watched the dapples of light move higher and higher as the sun moved from the east window to the west window.  I analyzed how the paint color changed with the light value.   What time is now?  Has an hour passed?  2?  What if I’m way off and it’s only been a few minutes. 

OK, worst case, if no one hears me, how long will I be here?  My aide was due the next day at 1:30 PM.  “That’s not so long. Hell you were in labor longer than that.”  I began looking for ways to distract myself, to drown out that “are we there yet?” voice nagging in the back of my head.

I thought about my favorite movies, going through the plotlines in detail.  I thought about books I’ve read, again straining to remember every detail. 

I sang. 

Poor dogs.  They’ve never heard that sound coming from me.  It caused them to sniff and paw.  I found this amusing and spent a period of time teasing my dogs. 

Oh, poor girls!  Do they have water?  I hadn’t refilled it yet when I fell.  Hey, I’ve been without water too!

Great, something new to worry about.  Like every other aspect of SCI, my kidneys have a very delicate balance.  How will this insult affect them in the coming days?  I spent some time thinking on that and again dozed.

When my eyes snapped open, I panicked.  “NOOOO!” I cried out.  I breathed in, trying unsuccessfully to control my panic.  I sobbed “NO NO NO NO!”

It was dusk.  I hadn’t allowed myself to think about the coming nightfall and now it was well underway. 

It was all I could do to stay calm.  I couldn’t move.  I couldn’t feel.  Now I won’t be able to see?  The claustrophobia crashed in.  The confinement became overwhelming and I cried.  Since I was crying, I let it all out, the pain, the fear, the loneliness, and the disappointments of these many years since my spinal cord injury.  I felt so small, so tired, so helpless, so ready to surrender.   I slept again.     

If the disorientation of waking up during the day was bad, waking in the dark was worse.  I had no way of marking the passage of time.  It was just darkness then more darkness.  And it was getting cold.  People with spinal cord injuries do not have the automatic mechanisms to deal with regulating body temperature below their level of injury.  I liken it to heating a house with a single space heater.  

The cold became unbearable and lengthened the hours miserably.  My dogs came and snuggled against me.  Their body heat kept me safe through the interminable hours of darkness.  An occasional light touch with a nose or a tongue reassured me that they were on watch.  Occasionally, Pearl gets up and goes to look for the phone.  I can hear her sniffing around, moving things with her teeth and paws trying to find where I’ve hidden it this time.  Each time she returns with a quick lick on my face and a whimper. 

I could no longer create any feeling in my arm and now my neck was aching so bad it was all I could think about.  I needed a new exercise to distract my mind.  I made new lists.  Foods I like; almost everything ever.  Foods I dislike; beets, probably bugs too… oh and squid. No way. Not ever.  Foods I’ve yet to try; maybe some molecular gastronomy.  

I made a mental list of all the people I’ve known these past 7 years who have died from their spinal cord injuries.  It is a very long, sad list – 19 so far.  Everyone of those 19 people should still be alive.  (As I write this, I’ve just learned that another has passed. RIP Jessica) 20… 20 souls.  Spinal cord injury takes just too much.

I thought about the science of spinal cord repair.  I counted research projects and clinical trials; the number – not nearly enough. 

I waited for morning.

And waited.

And waited.

Somewhere in there I started finding it hard to breathe.  I found it difficult to pick my chest up away from my lungs to allow them to fill.  Positional asphyxia it’s called.  Now what?  If I cannot get some relief, I will suffocate.  “OK. Don’t panic” the adult voice in my head instructs.  What to do?  I try again to wiggle.  I need just a few inches of relief.  Just a few.  I manage to wedge my free arm between my mattress and box spring and lift.  I don’t get space, just a lessening of weight on my ribs.  It doesn’t last long but it does give me some relief.  I nearly weep again with relief. 

Am I going to die here?  Which will kill me?  The cold?  The asphyxia?  Am I bleeding and don’t know it?  What if my hip or hips are broken?  Is that just a headache or is it autonomic dysreflexia?  If there was ever a situation ripe for AD this is it.  What if I’m not found…

I wander back over my favorite memories with my son savoring each one.  I spend a good deal of time wondering where he is at this moment, what he’s doing.  Who will he be in his future? Will he have kids? I wish fervently that he has a happy life…whatever that means. 

When will it be morning?

Will they find me dead?  Will it matter if they do?  I ponder on that for a while.  What condition will my body be in? How traumatic will it be?  Will they remember the damned book?  I have a binder organized for the event of my death. 

My eyes open to grey streaks in the sliver of window and I am heartened.  I savor the victory of making it through the night.  It will only be a few more hours now.  Let’s see, dawn is at what… 7:30 or so these days?  Ok, let’s call it 7:30, my aide is due at 1:30 that’s only…. six hours.  Just six.  Or so.  I can do this. 

I sing again, just to torture the dogs.  Occasionally, I wedge my free elbow into that crevice I created yesterday and try to relieve some of the pressure off me.  When that pool of light hits my face I should be rescued. 

I doze. 

I am jerked awake by the deet deet deet sound of the digital lock on my front door. 

I call out “I’m here! In the bedroom! Hurry”  Nothing.  No more sound.  Did I dream it?  Did she try to come in and leave?  No, she’d have rang the bell.  Surely.  Right?  She didn’t just leave me did she?  Panic wells up and I fight. 

NO.  Look the light is still on the wall.  It’s early yet.  You imagined it. 

I watch that light slowly crawl down the wall.  “She is coming, right?” I start to worry that today will be the day my aide will flake out and just not show up.  It happens all the time in this industry.  No one will know she doesn’t show up unless I call.  I can’t call because my phone fell when I did.  How far away is Monday?

“Pearl!  Ring-ring”  I prompt.  She jumps up and searches yet again.  On the bed, around the bed, out in the other rooms.  She returns frustrated and whimpering.   I could be here for days if my aide doesn’t show up.  I become aware again of my thirst, my hunger, my pain.  Breathing is becoming more strained and I know this is an AD headache. Time has just become a critical issue.

Am I going to die before I’m found?  I wouldn’t bet against it.  There’s still plenty of time for something to go wrong.

“OK, don’t go there Jen.” Find something else.  What?  I’ve gone through songs of my youth, lists of old boyfriends, places, friends, Christmases… I’ve recited poems I memorized in school, made up a few of my own. I am out of things to occupy my monkey-mind. 

And still that light creeps down the wall.  How many hours left?  Wedge the elbow.   Doze.  Count the spots.  Lather. Rinse. Repeat.

I hear deet deet deet again.  I hold my breath.  Real or another dream?  This time, the girls jump up with a happy growl and bound for the door.  My aide calls out a hello.  I call out but my voice is a mumble.  My lips and tongue too parched to raise my voice.  My AD is fast becoming a life-threatening issue.   My eyes are dim and my brain sluggish.  The girls herd my aide toward my room.  She’s calling my name as she comes. 

There’s enough fluid left for 1 tear.  It streaks down my face. I can see it catch on my cheek and refract the light.

“OH MY GOD!” She shrieks as she finds me on the floor.  She instinctively rushes to move me. 

“Don’t” I manage a slurred mumble.  “Listen carefully” I grip her hard with my free arm and force her to focus.  “Call 911. Then put the girls outside and lock their door.  Please cover me with a blanket and please bring me some water. “   She rushes to comply.  Her accented English is much harder to understand in her panic and she has to repeat herself to the 911 operator over and over. 

Help is on the way.  I drift a bit. She is beside me relaying questions from the operator.  I mumble and drift.  I can hear the siren.  She leaves to let them in and suddenly I am surrounded a flurry in blue.  My wheelchair is lifted away and my legs finally fall.  I slump over and take my first good breath in many, many hours.

I open my eyes, slur out that I need treatment for AD. Some of these guys have been here before, so they’re up to speed on this very rare condition.  My aide runs for The Book and thumbs to the page I’ve drilled her about, the page on treating AD. 

Hands are everywhere, taking vitals, checking as best as they can for breaks, repositioning me.  One arm has a blood pressure cuff, the other receiving an IV.  I’m dehydrated, it’s difficult to start.  Questions punctuate my drift.  “What’s your name?” “When did this happen?” “What hurts?”

I ask about my pinned arm.  How’s it look?  Do you think I’ll lose it?  It’s cold.  Colder than the rest of me.  But once it’s freed the paramedic points out that I have capillary refill – when he pinched my finger nail, color (thus blood) floods back in.  I dry-sob in relief.   

In no time, I’m bundled up and packing into the back of an ambulance.  My aide feeds and waters my girls and calms them.  Then she cleans up the space I’ve been laying in all these hours.  There is blood from my shoulder and pee.  I overflowed the catheter bag and soaked myself and the carpet.  No wonder I was cold. 

My teeth are rattled with my uncontrollable shaking.  The IV, though necessary is making me even colder inside.  I am swaddled in blankets; the paramedic holds my hands, trying to warm me.  Hot tears slide down my face. 

At the hospital, I’m treated for mild hypothermia and dehydration.  They cover me in heated blankets as I thank them tearfully. Someone finds a stocking cap and footies and swaddles my hands in bandages to help stem my heat loss.  My IV fluids are switched to warmed bags.  The shivering subsides.  Medications to relief my AD symptoms are administered and finally a sedative while I’m scanned head to toe in CT looking for broken bones and damaged organs.  My arm is checked and my skin examined for damage.  Blood tests measure my kidney and liver functions.  Finally, I’m given warm broth to sip, my stomach growls embarrassingly loud.

Hours later I am fully alert.  The doctor tells me that I’ve survived with relatively minor injuries.  No broken bones, no additional damage to my already damaged kidney and liver functions.  My arm, while expected to be sore for the next several days, will fully recover.  My worst injury seems to be my skin, macerated in pee, my shoulder and hip badly scraped by continuous friction on the carpet.  Bandages and thick layers of barrier cream are applied.

My insurance has a very strict limit on the number of days one can be hospitalized; 25 days in a year.  I’ve used 8 and I still have 10 months to go.  Although no one wants me to leave, together we decide it’s prudent for me to go home.  I leave bundled in warm clothes, prescriptions for pain-killers and Ativan (a sedative) in hand.

The girls greet me inside the darkened house.  Auburn dances and keens in delight and I smile.  Soon, the silence is crushing.  Fear wells up.  I take a handful of pills as directed but wash them down with a shot of tequila, head to bed and cry. 

I left the light and the television on all night. 

As I lay on the floor my heaviest thoughts were about the nature of God. I kept going back there. Why do bad things happen to good people?  Does God truly never give people more than they can handle?  When one dies, what happens next?   

I’m still an atheist.  Nothing in that long night changed that.

I wondered about the process that caused many people I care about and respect to develop a belief in a supreme being.  I envy the comfort this gives in times of trouble but I still cannot ascribe anything positive or negative to God. 

I thought a lot about how to prevent this in the future.  Friends have suggested I wear a LifeAlert device.  I used to but gave it up when I found it faster to dial 911 myself than wait for LifeAlert to answer the damned button.  And, if I’d been wearing it as I used to, it would have been on the arm pinned under me.  I always ALWAYS ALWAYS have a phone on my person.  In this case, it flew in an unexpected direction when my body went the other way.  People have suggested that I keep a phone near where I might fall.  This fall was next to my bed.  The last one was in the kitchen, the one before that the bathroom.  The next one?  Who knows.  Maybe outside?  Or in the garage? 

I realized that there is no possible way to predict every possible unpredictable event and plan against it.  At some point you just have to trust that life is going to unfold in the way that does and you’re going to be ok.  Or not.     

I did turn on the heat; I usually wait until January.  I’ve also tossed a blanket on the floor just in case.  But now there’s this split second before I transfer where I wonder what will happen if I fall. 

I’m having some trouble with my aloneness.  Usually I revel in my solitude. 

I have spent much of my time since returning home reflecting on my time trapped on the floor.  I have no great revelation.  This bothers me more than the fear of a future fall.  I should have earned something for the experience.  No flash of wisdom.  No brilliant insight.  Just further evidence that life is random and unpredictable.  That we can endure far more than we ever believe ourselves capable of enduring. 

And one day I will die.  It may or may not be peaceful and easy.  I hope that it will be.  But if not, I’ll endure that too.  It’s not the being dead part that scares me, it’s still the dying.

 

 

 

Thanksgiving?

Two words that should never fit together in a sentence… Homeless and Children.   

And yet, Thursday morning I found myself joining a group of folks from Footsteps Church making sack lunches for homeless LGBT youth.  Kids who I’m told are on the streets largely because due to their sexual orientation, they’ve been rejected by their families.  

Stations were set up around the room; one for making and bagging sandwiches, and other stations for adding carrots, apples, cookies and chips.  And a card.  Each bag contained a personalized card.  This was the hardest part of all for me. 

What sentiment makes a homeless Thanksgiving more palatable?  I struggled to find something that rang of truth.  I’m not warm and fuzzy nor am I Christian so all the “safe” things one says they don’t know what else to say didn’t work.  I simply (and truthfully) wrote “you are loved” and hoped the words would help one kid hold on through another cold night alone.

The group was large enough that we completed our tasks quickly and packed up the hundred or so bags and headed off to the drop-in center.  There, the teens trickled in; some alone, some in small groups of twos and threes.

The drop-in center provided a full Thanksgiving dinner Wednesday night and the kids came back for left-overs Thursday.  They were going to have to fend for themselves over the holiday weekend; most valley services were closed until Monday.  Hence the bagged lunches.  PB&Js don’t spoil. 

I can’t pretend to know these kids.  I can’t pretend I have one bit of understanding what it means to be without resources.  I’ve never been without a bed or a meal.  I’ve never had to resort to the sorts of things they’re forced to do for survival. 

I could only see them through the lens of motherhood.    They were so young, so defenseless, so cold.  They looked hardened and wary but behind that all I saw were kids who needed someone to say “I love you.” That, a warm bed and the promise of regular meals. 

Were there tables around the valley where these kids were missed?  Were there moms out there stuffing tears and regrets along with their turkey?  Dads who drove up and down the streets searching for their babies when they went out for the forgotten milk or butter?  Or did those families take comfort in Leviticus?

It’s just November, it’s not yet really gotten cold here yet. What’s going to happen to these kids in thin jackets come January?  They only have what they can carry. Last winter’s coat has long since been lost, stolen, repurposed or jettisoned for more useful gear.  

Where will they get the next meal and the one after that?  More long-term, where will they get job skills and education and all that they’ll need to become adults? 

How many of them will survive to become adults?  Sitting there I could only think that “it gets better” must sound hollow from where they are right now. 

I was overwhelmed.  It felt like such a small dent in such a crushing need — a sandwich and a hand-made card.   I kept wondering if they’d eat the next day.  I was angry.  How could anyone deny their own child?  I wished I could believe in God and leave with the comfort that all this… the kids, the cold, the hunger, the need… was in his all-knowing hands and somehow all of this… the kids, the cold, the hunger, the need… made perfect sense and figured into that perfect plan.  

But, for Thursday, they were fed.  For that period of time at the drop-in center, they were warm and safe.  And today, for the folks running the drop-in shelter, it starts anew – providing food, comfort, advice and survival for as many of these kids as they can. 

The drop-in center is moving to larger, easier to reach location.  This one I understand will have showers and a washer and dryer. 

The Footsteps Church group that put together Thursday’s operation is working to provide each of these kids with clean underwear and new shoes for Christmas.  At that age, my kid wanted an Xbox.  

If you’re moved to help, WWW.UCCSWC.ORG can use your donation.  $40 will buy shoes and socks for a kid which, even in a Phoenix winter, can mean survival.

Jen vs. the Manicure Scissors

Because of my spinal cord injury, I have no voluntary control or sensation below the middle of my breasts.  I cannot tell hot from cold.  I cannot fully feel the warmth and pressure of a friendly hand on my knee.  It’s muted like feeling that pat on your leg wrapped in layers and layers and layers.  But I feel pain.  Always pain.  

I have neuropathic pain as a result of my body’s inability to communicate with my brain.  It’s a constant burning buzz that has become the white noise of my existence.

I have phantom sensation too which can be very confusing.  When I was first injured I had to sleep with the light on because my brain was sending the message that my knees were bent upward and my lower legs  were 90o the wrong direction from my thighs.  I had to look at them, see that sensation did not match reality before I could rest.  My brain made it real.   

Sometimes I’ll feel wet or cold for no reason and have to investigate.  Sometimes it turns out to be nothing I can discover.  Sometimes it’s how my body tells me I’m in pain.

In spite of all this, I tend to forget the lower half of my body exists.  I have ripped off more toe nails by ramming my feet in places they don’t fit.  When I get buried in what I’m doing and trust my body to auto-pilot, I can create quite a mess. 

If you’re squeamish, don’t read further.  But, if you’re curious…

I was trimming a sharp cuticle with those tiny manicure scissors.  I was distracted by a phone call and set the scissors in my lap and forgot them.  I couldn’t feel the weight or the coolness of the metal as they worked their way down underneath me.  I had no sensation of their unforgiving rigidity.

I did what I do on an average day; work, household chores, ran the dogs in the park.    

A few hours later I noticed blood on the bathroom tile.

One of the dogs must have cut a paw.  I examined both girls thoroughly.  I wiggled around in my chair, rocking this way and that to try to get a better view of any potential injury.  They were both free of any wound.  Maybe one of them abraded a lip on a chew toy.  I leaned over and with much effort, wiped up the floor.  Then righted myself in my chair and wiggled around until I was properly seated.

I went about my day but my spasms – the involuntary, often painful movements in my legs – kicked up.  Irritated, I took a handful of ibuprofen and continued on.  I weeded the garden, washed the windows I could reach in the kitchen, read a bit. 

Later, more blood.  Kind of a lot.  The dogs haven’t even been near me. 

I look at my feet and my lower legs, they’re fine.  I reach under me and pull back my hand covered in blood like the best slasher movie eh-ver. 

Crap. 

Time for the check list. 

  1. Spread towel on floor next to bed.  Quickly.
  2. Park wheel chair over towel.  
  3. Block from your mind the steady drip drip drip of YOUR OWN BLOOD. Do not panic. (repeat)
  4. Spread second towel on bed.
  5. Transfer out of wheelchair onto bed.
  6. Find the forgotten scissors on chair in puddle of blood.
  7. Cuss blue streak at personal stupidity.
  8. Curse the daily trials of a spinal-cord-injured life.
  9. Undress (I’ll keep it PG-13).
  10. Roll around on bed using mirror to assess damage.  Holy death-by-a-thousand-cuts!
  11. Clean and dress wounds as much as possible considering that:
    1. You’re unable to see them all,
    2. You do not have a third arm, and,
    3. You’re paralyzed and unable to move into a position to reach.
  12. Clean clothes, clean cushion, clean carpet.
  13. Head to Emergency Room.
  14. Wait…….
  15. And wait……
  16. And wait……
  17. Cuss blue streak at personal stupidity.
  18. Curse the daily trials of a spinal-cord-injured life.
  19. Know that some variation of this circumstance will happen again.

All of the movements of the day jammed those little scissors into me, digging and twisting, over and over again until I turned myself into human hamburger. 

It’s not the first time I’ve hurt myself and not known it.  And it’s not my worst un-realized injury.  I once broke almost every bone in the lower half of my body and went to bed and slept the night away before I realized anything was amiss.  I am that divorced from myself. 

My sensation is more intellectual than corporeal. 

It’s like when an infant cries.  You know the baby is distressed but you can’t feel its pain.  You run through the standard check list of things that make babies cry to no avail.  You want to cry yourself as the baby’s distress intensifies but you keep trying to alleviate the pain.  If only you could communicate, if the baby could just give some clue.

That’s what’s it’s like to live in the lower 2/3 of my body.  It’s there.  It has needs.  I don’t always know what they are or how to meet them.  So I must maintain a constant intellectual awareness of my body.  And I must integrate this into a day filled with all the things one regularly does. 

Each time, I am horrified that something so excruciating can happen to me and I can remain oblivious. How can one be so disengaged from themselves?

I have trained myself to visually scan my body semi-regularly.  Before I roll under a table for a meal or a meeting I inspect the area with my hand looking for sharp edges or lack of clearance.  I constantly check to make sure my feet remain squarely on the wheelchair footplate so that I don’t run them over.  Or drag them for miles until I grind off all the skin and nail.  Been there, done that.  More than once unfortunately.   And, I’ve learned to be careful with what ends up in my lap as it can just as easily end up under me. 

I need a separate on-board computer processor to replace my autonomic system.   I sometimes seem not to have enough bandwidth in my regular brain to think all the thoughts that come instinctive to you.   

Some days I feel like the Princess and the Pea. 

If she were paralyzed.  And sitting on manicure scissors.

2,555 Days

Seven years… 

The anniversary of my injury has sneaked up again.  How could so many of them have come and gone?  In my first days in the hospital I could not imagine seven years later I would still be sitting in this wheelchair.  I didn’t think I’d still be alive.  After so many life-threatening complications and a botched suicide, I am as amazed as anyone to find myself here.  

In past years, I’ve watched my anniversary approach.  I’ve marked the days, hours and minutes.  I’ve prepared – steeled my heart, guarded my soul and sanity.  In what I can only deem monumental hubris I thought I was beyond the power of this day to hurt.  I began my fortifications much, much too late.  I neglected the Enormity of Anniversary 7.  (In my mind, that last line has gravitas and full reverb when said out loud.)

This year is different.  Because of what comes after the anniversary.

Effective November 16, 2011; seven years and one day after those 5 bullets ripped through our bodies, the Statute of Limitations is complete.  The people responsible can no longer be prosecuted, even if they confessed.  So now it is a “perfect crime.”  Congratulations.  You got away with it.

But what was “it?”

I am left to ponder “justice.”  No punishment, no settlement of any kind will ever unshoot us.  David will remain blind and left to cope with the cognitive effects of a .45 caliber bullet roaring through his skull.  My spinal cord will remain damaged.  A successful prosecution would never un-paralyze me.  

I let go of the retribution aspects of “justice” some time ago. 

It’s the questions… 

Why?  

Was it road rage?  A “hit?”  A random act? 

Does whatever burned within you that day to cause you to point a weapon our direction and pull the trigger repeatedly still fester?  Was it sated in that moment?  Did it just fade away?   Are you happy with the result?  

Did you know us before you shot us?  Have you seen us since?   

Do you fear arrest? (Ok, moot point.) Did you ever fear arrest?

Do you fear God or Karma?  Do you worry about your eternal soul?  How have you been affected by shooting us?  Are you going to sleep better tonight knowing you are beyond prosecution?  I had hoped to one day face our assailant and ask.  I’ll never know the answers now.  

Through a bizarre twist of fate, I found myself alone last night sitting in the very parking lot where we were attacked.  I hadn’t planned to be there, especially so close to this anniversary.  But, there I was.  Fate is such a prankster.

It has become a foreign place that I think should have felt more familiar. Where exactly were we sideswiped?  Which tree was it that our truck crashed into?  Who had to clean up all the blood and glass afterward?  Who would have been hit if our bodies had not stopped those bullets flying through the air?

In the first minutes sitting there, I struggled against my memories — holding David’s hand, planning our wedding, the screams, the explosion of bullets, the searing pain,  David’s words melting to gibberish; the heat inside the truck after the airbags exploded.  

I held an irrational fear that I would be shot again. I braced for it.  As panic rose, I worked to breathe; reminded myself that the taste of blood and bile in the back of my throat was only a memory.  The aloneness was crushing.  I sat there until that space lost its power.  It was a long evening.

I wondered about all the other lives that day… the man who first opened the door to the truck and began to assess and assist us; an off-duty paramedic I think?  In my haze I never saw his face or learned his name.  The people sitting in that restaurant that evening?  How were they affected?  How about all the people in our lives that learned about our shooting as breaking news that night?  

How will this shape my son as an adult?   How does it impact all the lives that touched ours then? 

Yes Shooter.  You shattered us.  You broke our bodies, destroyed our dreams, and devastated our families and friends.  The funny thing about humans is we’re hard-wired to move on.  We rebuild.  

We are changed but not destroyed.  There are new dreams, new priorities that drive us forward.  Scars become testaments to tenacity and become celebrated as badges of courage. 

I no longer hate you Shooter.  I no longer pray for your pain and punishment.  It serves nothing.

If I were in charge of the universe I would sentence you to care for David. I don’t often speak about him publically.  He was utterly changed that night.  A .45 caliber slug ricocheting around one’s brain will do that.  David was blinded and cognitively altered.  He also deals with the consequences of his other “less significant” injuries; the shattered bones and mangled muscle from his other gunshot wounds – he was shot 3 times.   A fragment of your bullet still rests behind his right eye.

You would tend his daily needs; cut his food, help him move safely through space, read to him, narrate the world around him (brush up on your adjectives, describing something  as  “blue” or “big” or “cool” isn’t going to cut it).  You would watch him struggle with the simplest of tasks. Your heart would break for his ever-present pain. 

You would be responsible for keeping him grounded in reality.  You would mitigate the delusions induced by your gunshot to his head.  You would be blessed to tend a sweet, patient and gentle spirit who encourages those around him to aspire.  Ironically, I would describe him as an angel.   Maybe he’s not so delusional after all.

I left that parking lot finally resolved that there are no answers that can make this all make sense.  I can think of no justification for an act so horrific.  The answers will never matter. 

Sometimes victory is had by simply not acknowledging defeat.  This day will always have impact on me.  The shooter is now part of my life’s story.  His imprint on me altered my life’s course.   

Someone, I don’t remember who, shared this quote with me.  “When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something’s suffered damage and has a history it becomes more beautiful.”

My life is far from perfect and certainly light-years’ distance from easy.  It is, however, exquisite and beautiful and worth every breath. 

Happy Anniversary to me.

Moving Day

I’ve moved my blog from its former location.  Following are the “best of” posts (as determined by an impartial, although not neccessarily, sober judge).  The chosen pieces were all written over a span from 11/15/10 until January 2011.

Ignite!Phoenix 9

I had the honor of being chosen to speak at Ignite.  What a rush!  If you’re unfamiliar with the format, the speaker has exactly 5 minutes and 20 slides that automatically (relentlessly) advance every 15 seconds to share their passion. 

Ignite is to public speaking what haiku is to poetry. 

“Wheelchairs and Wisdom: Living Life at Butt Level”  

I hope you like it.

What’s your passion?  I hope you’ll share it at an Ignite event near you!