An Ugly Dose of Reality
FACT: “The failure to diagnose a medical condition is one of the most common types of misdiagnosis.
FACT: Misdiagnosis–mistakes by medical practitioners–is common, error rates up to 40% and more…
FACT: 9 of 3794 autopsies revealed the undiagnosed spinal-cord infarction mortality rate of 25%.
FACT: I was medically robbed of my quality of life on Saturday the 15th of October, 2005, nearly six years ago. I’m still grieving.
* * *
I constantly dream of what I cannot have. To walk like able-bodied people, or even stand horizontally on limbs that was once healthy, athletic, vibrantly warm and fuzzy, full of energy, not the useless, paralyzed legs that they are now: As dead as door nails.
Oh how I long to salsa dance with my Latino husband, wearing sexy high heels. However, my tree stump appendages don’t even like wearing flat footwear, let alone the thick, heavy boots worn in winter. It feels like dragging concrete blocks around. Just putting on any footwear is daunting. Skiing is definitely out of the question.
If only I could walk (unaided) along the lakefront directly below my home – bend down and pick up river stones, duck feathers, and bygone artifacts that drift inland on occasion, without falling flat on my backside, or my face. A small consolation: I won’t break my nose–my boobs are too big!
Gardening–oh how I miss tending to the vibrant beauty of nature that springs to life each year in springtime. I can’t “balance” my numbed torso long enough to prune a small shrub. Even the simplest of household chores is a trial. Washing windows–no way! Climbing a ladder is a thing of the past. Oh, how I miss my legs. Where are they? Who took them? Someone I trusted. Someone I believed in. Someone I held above all others. Someone who truly cared about me and would never hurt me, betray me. And who is this someone who has left me inflamed from the inside out? My primary care physician is my kidnapper.
The ransom is still outstanding.
* * *
It was about 7:30 a.m. on a fine autumn morning Saturday, 15 October, 2005 (four days after my 60th birthday.) when I bolted awake. I was experiencing a pain like no other, not even the memory of an assisted breech of my bottom-first delivery in 1983 could compare with this blinding pain searing down the right shoulder and right arm. It felt like being stabbed repeatedly. I tried to gather my wits about me. What was happening? Then a tightly-knit ball of fears ripped through my consciousness: I was having a heart attack. I was going to die without instant help. In my youth, I had learned enough anatomy and physiology as a pre-med student (didn’t graduate) to know I was in deep trouble. The room felt frozen until my shrill, fearful scream awoke my husband. He jumped out of his side of the bed and asked me what was wrong. I informed that I thought I was having a heart attack. I’d never seen fear in his eyes. Calling an ambulance was on the tip of his tongue. There was something drastically wrong with my numbing, pain-ridden body, but not my protest. Because we lived in a rural area 31 kilometers from the nearest hospital and going by ambulance would have been fruitless. It would take an ambulance 30 minutes to get to me and 30 minutes back to the hospital. I just knew I didn’t have that precious time. I felt light-headed and was still experiencing pain like no other as my husband lifted me in his arms and carried me to the Chrysler Neon. I had always joked about this small silver car, saying it looked like a drug-dealer’s getaway vehicle with its aerofoil, fancy wheel rims, leather seats, tinted windows and sunroof. Would it be my savior now?
Pedal to the metal, my husband sped, shifted the car into a pilot mode, along a mountainous, bumpy, leaf-strewn road toward the nearest town. I remember very little, only being slumped in the passenger seat with the seatbelt strangling me. Unbearable pain overtook my consciousness. It was lights out for me. Unknowingly, our little car (living up to its whimsical description) with its panicked driver at the wheel, made the trip in eleven minutes!
My husband left me wedged between the seat and the floor and rushed into the hospital.
I was placed in a wheelchair and put on an ER bed. Leaving my husband by my side, the nurse went to call my family doctor. He arrived 20 minutes later. I was glad to see him, but not for long. Nor would I ever feel the intense love and admiration I had had for this tall, blonde Adonis of a man, again. You see, he is not only my doctor, but a good friend. We go back many years. I was transferred to him when my family doctor retired. There is not much choice in a rural practice. So with no breast examinations or Pap testing, he and I would get along fine.
Now fully conscious and in more agonizing pain, I begged my doctor for morphine. He gently placed his hand on my shoulder and told me that this would be administered only after the preliminary tests and his examination. I wanted to throttle him. Couldn’t he see that the pain barrier had surpassed tolerance? I was writhing in agony. My frenzied cries were like no other that had come from my lips. Could my dying [old] heart be saved?
I was hooked up to the heart monitor. While having blood extracted, I lay there biting my tongue because a barrage of abusive, pain-driven language was waiting to erupt. . . Give me some friggin’ painkillers, or I’m going to kill someone. . . Every nerve ending in my body was firing a bullet of excruciating pain.
A half-hour later, my doctor returned and informed that there’s nothing wrong with my heart and your blood tests don’t reveal anything to go on. But he added that he was concerned by the abdominal swelling and the tenderness on your right side. It could be your spleen? I could have choked him. Idiot! Check my records. I’m Asplenic. My spleen was removed in 1995.
Yes, swollen flesh had literally pushed out my and chest cavity, but what was causing this beluga whale bloating was a mystery. Having eliminated a heart problem, I wondered: Was it my pancreas? Was it my liver? Was it my gallbladder? It was sure as hell not my appendix–that too, was missing. I had no idea that abnormal deposits (leading to neurological impairment) in my brain, was about to shut me down for good.
At 12:10 p.m., I was placed in an ambulance for the four hour journey to another rural hospital my doctor believed would reveal the answer. I would be seen by the “best”–abdominal specialists. And at long last I got my morphine shot. I got a hug from my doctor who said I’d be in good hands at this hospital. Yeah right!
The roller coaster highway to my local hospital can be awful at times, but the four-hour journey I felt in the back of an ambulance to this unfamiliar hospital was horrendous. Bounced about from side to side, pain came back and hit me like a baseball bat. I could no longer lie on my back, or rest on either side. I begged the attendant to give me something for the pain.
I wasn’t happy with her reply. My doctor hadn’t authorized painkillers. Much later, to my embarrassment, I learned that I had used every foul language known and cursed this poor young man to hell. Pain had robbed me of all manners.
I was wheeled into the ER at this hospital, and over the course of the weekend I was seen by four “specialist” doctors. One chubby doctor wore a disgruntled smile. He was still wearing his golf attire who informed me that he couldn’t find anything abdominally wrong with me. I had to take his word because there was no trained MRI operator, there at the weekend. But by noon on Monday, Oct. 17, still no wiser as to why I was in so much pain and completely numb from the chest down, catheterized, and not prepared to “expire” in this strange hospital and made it clear that I needed to be sent to a better medical facility: Right now!
The contempt look I got was: Who is the doctor here, lady? But, I didn’t give a hoot. I was on a roll. Once more, my manners went out the window. I told him that couldn’t keep me in his hospital because I was fed-up of doctors playing the guessing game. If you had thoroughly checked my medical records you would have noted that, due to a vehicle accident, I’m Asplenic . . . no spleen, no appendix, and I’m not friggin’ pregnant. At 60, yeah right! To add to the list of my medical woes, I have had a discectomy . . . surgical Cloward (neck) fusion of C6 – C7.” This was the only explanation I could muster. Something had to be wrong with my neck. Had I herniated the replacement cow bone disc?
That same day, at about 2 p.m., I again saw the back of an ambulance. This time I was making the five-hour trip where I was sure I would finally get neurological help–the answer to my medical woes, a body that had been reduced to nothing more than a limp vegetable. But not the awful, debilitating pain! I howled liked a demented banshee. In and out of a narcotic reduced state, I was not to know that the ambulance carrying my useless body changed over at Grand Forks, BC, miles from our destination, Kelowna. My poor husband who had followed the ambulance in the worst fog conditions was not a happy camper. Neither was I when I learned it was a duty shifts changeover. (I have the ambulance bill to prove it)
At ten o’clock at night, eight hours later, I was admitted to Kelowna Hospital.
Lying immobilized on a steel gurney I tried to open my eyes, but couldn’t. I can only describe the feeling of eyelids being jammed by faulty roller blind coils. Underneath panicked eyeballs flickered. Slowly, the “blinds” uncoiled and slowly lifted eyelids sodden with grief. I stared upward. The iridescent lighting blinded me. Was I in a spaceship? Had I been abducted by aliens? Was I at the gates of heaven? Yeah right! I did not believe in higher powers so why on Earth would I be at some gateway. Matilda (my affectionate term for my brain) finally kicked in and screamed the reality: You are in another hospital, dear soul. Look to your right. There was no mistaking the steel pole holding a translucent bag of god-knows what. I looked at my left arm. Yeah, it was a butterfly clip deeply embedded into a vein. I tried to move to take a closer look. Now my insides screamed: Why can’t I move? What’s wrong with my body? Why does it feel like a dead tree? Why is it bloated like a puffer fish in predatory defense? I’m a concrete human. Am I embalmed? The tsunami of reflections continued to wash over me. My perspiration-soaked head dropped to the pillow. I sobbed. A young woman in green scrubs approached me, then turned heel and rushed out the swing doors. She returned minutes later accompanied by a short, dark haired man. His words were a blur, but not his face. I stared at him. Was I dreaming? Was it Al Pacino? Was I on some movie set? Doctor [Jones], a neurosurgeon examined the MRI neck scan. The disc fusion was remarkable. Then he asked for the name of the surgeon who had performed the surgery. Through blurred vision I sought out the voice. I wanted to scream at him: Haven’t you read my medical file! The overwhelming pain exciting every nerve cell in my body shut me up. I didn’t feel the needle entering my vein. Nor did I hear the sputtering talk between medical professionals. Nor did I know that my savior would come from “Paddy’s Heaven,” until I opened my eyes and looked into the warm, blue eyes of a rotund Irishman. His smile was heavenly and his soft voice angelic. Was I dead? I certainly wasn’t Irish. I was Sicilian bred, born in Africa, educated in Britain. As an English citizen of the United Kingdom, shouldn’t I be in another heavenly dimension from the Irish? Winston Churchill once said: “We have always found the Irish a bit odd. They refuse to be English.”
“Top o’ morning to you, Ms. Mann,” he said. “I’m Doctor [O’Reilly]?”
There was no mistaking the Irish lilt greeting: “Top o’ morning to you” (even though it was night!) or the ruddiness of a Jameson Irish whiskey drinker’s nose and cheeks. His Special Reserve breathe hung over me as he leaner closer. It brought my first smile. And God only know why the whimsical thought followed: God invented whiskey to keep the Irish from ruling the world.
Nothing could have prepared me for his diagnosis. I had had an extremely rare spinal-cord infarction. My raised brow reaction prompted the explanation. My stomach sank to my toes. I had had an oxygen deprived stroke that had caused my brain to shut down my nervous system, and the delay in diagnosis had led to my muscles dying. Without a doubt, I was paraplegic. How was that possible? How could I have had this rare stroke? I didn’t smoke. I didn’t drink. I ate healthy food. I was athletically fit: played tennis, jogged, rode my bike, loved gardening. I thought I was doing great for my age. I had had no symptoms prior to Saturday, 15th October, to suggest that trouble was brewing.
I thought it was a dream. I was going to wake up. Then out of the blue, I had a Sherlock Homes moment. It sparked my worst fear. Could it be? Was it possible? Had this rare stroke stemmed from—
I relayed my suspicions. In a startling turn of events, I told Paddy about the visit to the local clinic on Oct. 11, which happened to be my birthday, for the results of the testing done at my doctor’s request. He happened to be away that day. I was seen by a foreign locum. The results from the latest blood work, he said, indicated that I had type-2 diabetes; high cholesterol and hypertension. I was flabbergasted to say the least. I argued that I regularly check my blood pressure. It’s been fine. I eat healthy. I’m a little below my average weight. Ah, diabetes . . . maybe . . . the part of growing old syndrome. Maybe it was genetic, who knows.
With trust in my heart for this medical professional, I left the clinic somewhat perplexed, but nevertheless “accepted” the results. “Don’t you hate growing old,” I told a friend. “I’m eating well, doing all the right things for a healthy life, and I get diabetes and other nasty stuff. Growing old sucks,” I ended, quoting a modern day term used by the youth. That same day, I walked out of the pharmacy with three “powerful” prescribed medications. Now I want to beat myself up, scream in hindsight: You should have known better. Why didn’t you get another blood test done? Why did you take medication without checking the test results first? You’re supposed to be a smart cookie! As if a fire had been lit in my throat shocked, I demanded a spinal tap. Three blood tests and I wanted to see the results.
Paddy’s brows rose well into his ruddy forehead.
When the lumber puncture ( the physician put me through absolute agony—he missed entry TWICE) and the blood work results were revealed, I became prickly as cactus spines that were ready to dig into someone’s flesh—make them accountable for messing up—getting it wrong. I was NOT diabetic. My cholesterol levels were slightly raised but nothing to worry about. And I had abnormal levels of Glucophage-Metformine Hydro Chloride (oral diabetic medicine to control blood sugar levels) floating in my spinal fluid had developed lactic acidosis–a condition that could be fatal. It near damned killed me. Although it can NEVER be proven because they – medical professionals–they stick together like superglue in malpractice issues. There is no question in my mind that the incorrect blood work – the subsequent cocktail of prescribed medication–caused the brain stroke. However, it is the duration of time it took to diagnosis this awful error is unforgivable. Ah I forgot to mention my blood pressure. It’s off the Richter scale! Go figure!
My prognosis of this devastating misdiagnosis was grim—confined to a wheelchair for the rest of my natural life. To me, it was final. At that moment, I wanted to die. I closed my eyes, entered a dark tunnel. A tidal wave of despair drowned my soul. I willed my broken, paraplegic body to leave this planet. However, something deep inside brought me back to reality. I wasn’t going to let the obscenity of misdiagnosis be my executioner. Wasn’t I a natural born survivor? Hadn’t I survived childhood trauma of the worst kind? Hadn’t I survived a head-on collision, broken my neck, lost a vital organ, and lived to tell the tale? Didn’t I possess the best coping skills on the planet! One week later, I left the hospital on my own free will much to the uproar of my caregiver, Paddy, a specialist in these rare strokes. I had to do what I had to do.
Today, I’m doing the impossible–fait accompli. I’ve beaten the odds. Back from the brink of death, I’m walking/waddling (unaided)on dead limbs. I’m in control of my bodily functions; no diapers for me! And I’m in command of my disabled body, re-routing Matilda – not the other way around. I refuse to put one pill, not even a baby aspirin down my throat. I rely on Mother Nature’s remedies to get through some of the ongoing, severe spastic pain (I refer to this type of agony as being electro-shocked with a Taser weapon) that I sometimes suffer daily. The herbal remedies don’t always work, but it is a work-in- progress.
The best thing I ever did was to get out of that darned wheelchair six months after returning home, a broken, but positive-thinking human being. I still find humor when I fall flat on my backside (it happens a lot) then shuffle my bum like a baby across the floor. Hey, I did it once, why not again–learn to walk all over? It’s not easy being an “enforced” cripple. And sometimes, I struggle with the suicidal demons within me—urging me to end my “awkward” life. But then, I’m a hard-headed, old bat that will never go down without a good fight. Forgive the unforgivable? Hell no! I’m still inflamed from the inside out. However, I HAVE moved on. My zest for life, spent with my devoted, amazing husband, who shared the pain and the joy with me, gave me the strength to sit long hours in front of my computer to write a book about my incredible life–gutting myself intimately – before and after this unfortunate stroke. My published novels are proof. I now celebrate what I have accomplished. To anyone poor soul who finds themselves on the pity-potty, I have to say: Hold tight onto to a self belief. NEVER blame yourself for the wrong diagnosis. You are not paid to identify your problems. Become your own caregiver. Be adamant… insist that two tests of every procedure be done. Demand your medical right. Tell your physician: No more guessing . . . It’s MY life you hold in your hands. I am, (and many go under the radar) a victim of a medical wrong doing. I am paying the price. Don’t let it happen to you!
On a final note: I will always be grateful to the man who saved my life who said he could never forget me—the most obnoxious patient he had ever had—and: I was more English than the English. We talk on the phone and exchange Christmas greetings–in Irish, of course: “Dia dhuit.” And God be with you, too, dear Irish doctor. . .