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.
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.
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 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.