The pain in my shoulder had not changed by the time of my appointment with Dr. Reed. As soon as I would lift my arm, pain would shoot down from my shoulder to my arm. I finally got used to the discomfort, but brushing my hair or brushing my teeth always hurt, and putting on make-up was a mission. It seemed unfair. One night I had gone to bed feeling fine and the next day I woke up with severe and debilitating shoulder pain.
The Day of the appointment started with a cup of coffee next to my bed. I got up long before my appointment to shower, apply make-up, and dress, in order to my mother's famous words or reprimand from piercing my skull. Since the tests would be performed on my shoulder, I dressed in a skirt and a strap top. I detested taking off my clothes for an exam if it wasn't completely necessary. As I was leaving, I grabbed my shoes and assessed my hair to ensure my appearance was up to my usual standard. Opening the front door, the crisp air and clear sky energized my thoughts
"How is your shoulder this morning?" my mom asked.
"It still hurts terribly." My thoughts were not on the test, but rather on heading out that evening to a club where there would be music and dancing. "Is it still okay for you to drop us off at the club tonight, Mom? I need to confirm with Lydia."
"Sure, but let's make sure you don't break any bones in your shoulder until we try to solve the problem," she said sarcastically.
"Sure mom, whatever." The sarcastic teen was responding yet again.
As we entered the doctor's office, my mom walked up to the reception desk.
"I'm here for the appointment for Amanda Venter." my mom said.
"Please fill out these forms, and then you can take a seat," the receptionist said with a soft voice.
Once they were filled out, my mother handed the forms and the reference letter from Dr. Kuhn to the receptionist. She placed the envelope with the form onto the clipboard, probably in order to enter all the information on the computer.
"You can take a seat; we will be called," my mother said to me softly.
I took a seat in a plush, dark armchair. In the middle of the room was a coffee table, lined with magazines. I leaned over and took one I wasn't especially interested in reading, but paged through it nonetheless.
I glanced over at the receptionist, who was putting my file in a tray, visible from where I was sitting, along with my reference letter, which was attached to the file with a tiny red paperclip. Who would have thought that this small, mundane item - the paper clip - a simple, everyday object, could have an obscure connection to my future?
I scanned the room around me and glanced at some of the people sitting in the waiting room. It had an eerie silence, similar to sitting in a church with no-one saying a word. I looked over to where an old lady was sitting. She seemed to be about eight years old. Next to her sat a man, also in his 80's, who I assumed was her husband, as they were sitting very close to each other. She looked up and our eyes locked for a few seconds. She smiled shyly, sending a ray of sunshine into the room. The room was a soft brownish hue, with doctors' degrees framed against the wall.
Finally, my name was called out by the receptionist. "Please follow me," she said.
She led us down the corridor until we came to an elegant wooden door with a polished brass nameplate that read "Doctor Reed." She knocked and opened the door.
"Doctor Reed, Amanda Venter is here for her appointment," she introduced us to Dr.Reed.
He wasn't that bad-looking, but I can't say the first impression made me feel at ease. He was dressed in a dark blue shirt with a brown/beige tie, no friendly reflection in his eyes, and he seemed stern.
"Please take a seat," he motioned to the two chairs opposite the mahogany desk. We sat down on the two leather armchairs positioned in the front of the desk. The receptionist handed him a file and I could see the envelope, attached to the file with the small, red paperclip, holding my fate to come. I took a look around the room and found it to be very welcoming. The same framed PhD. as well as posters depicting various parts of the body, especially the detailed functions of the body's muscles, were lined up against the wall.
I turned my attention back to the doctor as he looked up from reading my file. He removed the reference letter from the paperclip. That small paperclip released my demon that day.
"How can I assist you, Amanda?" He questioned in the same way Dr. Kuhn had asked.
"I injured my shoulder during a netball practice," I responded.
He then continued to ask me a few questions about how I had injured my shoulder and any previous injuries I'd sustained. I told him I had hurt my leg muscles when I took part in hurdles when I was 14.
"Did you continue with athletics?" He asked.
"No, my leg didn't heal properly after that day. I changed from sprints to javelin." I answered
"Did you play any other sports?" He asked.
"Netball in high school, and for my company's netball team. That was how I injured my shoulder." I explained, "I was the shooter, and it was difficult for me to raise my arm to lift the ball."
"Did you have any issues using your arm before joining your company's netball team?" He questioned.
"Not that I was aware of," I replied. I couldn't remember ever hurting my arm, but I also hadn't thought about how tough it had been for me to lift my arm in cadets and the Ms. Tygerberg Commercial dance routine
I politely answered a few more questions as he scribbled down notes.
Then he motioned to the bed in the corner and said, "Take a seat on the bed with your legs down"
Hey, what happened to 'please', dear doctor?
The bed had a white fitted sheet fitted over the mattress and a piece of plastic over the cover. I was sure I was going to slide off that bed and injure my other arm.
I stood up and sat on the edge of the bed, my legs hanging over the side.
He approached the bed, "I'm going to move your arm, and you tell me when you feel any pain." he told me.
"Ok," I answered.
For a brief moment, he concentrated on my shoulder blade, but not in a way that was alarming or concerning.
"That hurts," I said out loud, while he was moving my shoulder in various directions
"Lift your arm," he asked
I could not lift my arm properly as pain shot through my shoulder.
"It is too painful to lift", I answered him
He let go of my arm and turned to face my mother.
"Mrs. Venter, I want to perform an electromyography test on your daughter. The results of the EMG can help me determine the root cause of these symptoms. Possible causes include muscle diseases, such as those that affect the ability of motor neurons to send electrical signals to muscles. Muscular dystrophy, such as myasthenia gravis." He explained
'Hey, I am over here, you can speak to me. I am the patient', I wanted to say out loud, wanting him to respect me as the patient. Teenagers were handled differently than adults during those years, and we had to interact with adults through our parents.
My mother replied, 'I'm not sure what that means." I didn't have any idea what he was talking about, either.
"After I am done with the EMG, I will explain," he responded.
He walked towards the opposite side of the room and wheeled a table with a brown machine and monitor on it back to the examination table. Beside the monitor was a wire that was attached to sharp acupuncture needles that were covered with white see-through covers. These electro-needles were attached by wires to a recording machine.
"You will feel a degree of discomfort." He said when placing the machine next to me. Why do doctors try to "trick" you into not feeling pain by referring to it as "discomfort?" I felt nauseous. These were long needles and I could see every needle that was about to be embedded into my skin.
"Lift your skirt above your thighs," I was told
I did not understand why the focus was placed on my legs. I was confused but didn't ask any questions. So now he was going to stick needles in my legs when the issue was my shoulder.
He dabbed a piece of material in a bowl and cleaned parts of my legs with the swab. Without warning, he stabbed the first needle, twisting it into my skin. I had to use all of my willpower not to kick him. When I saw the second needle, I held my breath, waiting for the next stab.
It reminded me of characters in a horror movie getting stabbed, stomped, smacked, punched, or shot, and that hurts. I experienced the same level of pain, but it seems a little dramatic to describe it this way. No, I wasn't!
I lost count of all the needles despite the fact that I could feel each needle penetrating my skin.
"Relax your leg muscles' he instructed, then continued putting the electrodes in place. I was told to "relax your muscles" once more. Yeah right - let me stick the needles into your legs and see if you can relax you, idiot. Are you wired with magic non-pain-feeling nerves?
"Slowly and gradually tighten your muscles." I was given instructions
I contracted slightly, and it felt like the needle was penetrating bone particles and like my legs were on fire.
Arrrrrrgh! "Dr. it's incredibly painful." I was trying to persuade him to stop. I tried to remind myself it was temporary and I had to endure it.
"It is nearly done," he responded. That doesn't calm me! It's inexcusable that you didn't even bother to apologize!
I heard a printing sound and glanced at a printout that was released from the side of the machine showing images of wavy and spiky lines.
"Relax your muscles and then contract the muscles tightly as possible," he said. Are you kidding me?
"Okay," was all I said, instead. I tried to be tough and stoic and breathe through the pain. I also communicated pretty clearly that I was in pain and what level of pain it was, but he didn't budge.
Each muscle I contracted felt like an iron rod piercing my bones and muscles. With each contraction, I could see the needles going up and down, and it was excruciatingly painful. Again, the electrical activity was recorded and the next printout was released.
The electrodes were moved a variety of times in various areas of the muscle to record the activity in different areas of the muscle and in different muscles. I have a really high tolerance for pain but this was different. I could feel the burning sensation, produced that fatal 'watery glaze' over my eyes, and suddenly, desperately unable to rescue the situation, I had a tear in my eye ready to be released. I swallowed a knot in my throat and, as best I could suppress my tears. I looked over to my mom and she was fixated on the procedure that was being performed. She looked up, seeing my glazed eyes, and gave a faint smile
I returned my attention back towards the machine where the electrical activity in the muscle was shown as wavy and spiked lines on the video monitor. When I contracted my muscles, there was a slight machine gun popping sound. I tried to divert my attention away from the fact that my muscles were on fire and tried to entertain my mind with the video monitor images. A thirty-second break accompanies each muscle contraction, followed by another ten pulses. My leg shot into the air on more than one occasion, because the current was so strong. This went on and on in a kind of nightmarish rhythm: fear, pain, relief the pain was over, fear of more pain, then pain again.
It continued for more than twenty minutes, and the video monitor spewed out the printed image. When the test was done, the electrodes were removed and the areas of my skin where a needle was inserted were cleaned with some kind of chemical. The relief I felt seeing each needle being placed back next to the machine and not being inserted into a different part of my body was indescribable.
I felt paralyzed, and irrational, confused, barely thinking at all. Questions reeled through my head. Why didn't I stop the test? Why didn't I tell the doctor to turn the f***ing machine off and let me go?
An EMG is one of the most sadistic medical tests I have yet experienced. It was like being stabbed with an electric prod where my bones had been electrified. I imagine the sensation was close to being linked to an electric fence and then getting the electricity switched on.
I straightened my skirt and slid off the examination table. Even after the needles were removed, my legs were on fire. Doctor Reed made notes on a chart and I sat down for the verdict. I was cursing the doctor for his ruthless manner in dealing with me without even asking if I was okay. The pain persisted and I tried to rub my legs as fast and hard as I could in an effort to find relief.
What was the verdict?
"Mrs. Venter, the EMG testing showed a deterioration of her leg muscles"
That is all I heard. If there was any other conversation after that sentence I am not sure, I turned it off. My leg muscles are deteriorating? What was this, exactly? I went in for my shoulder, and the focus was placed on my legs. How can he just decide that I have muscular weakness? Isn't there supposed to be other information or assessments that need to be completed? How could he be so sure of himself?
"Amanda" I didn't respond. "Amanda", he tried to get my attention. "Amanda, could you please give me your full attention? I explained to your mom about the testing and I am not sure if you were listening, but the results show that you have muscular and will be in a wheelchair in five years' time'
I do not know if there were words in-between muscular dystrophy and wheelchair. I am sure there was, but I didn't comprehend those words.
It was clearly one of those weaponized sentences that get flung out to hurt, to end conversations. His voice trailed off - the conclusion to my fate was inescapable
Those words will remain with me for the rest of my life.
Words failed me and the conversation faded into the background of white noise, clouding my mind. My eyes were focused on him but the words he spoke were meaningless. I yearned to argue that his assessment was absolutely inaccurate, every single bit of it. It had to be. I am a healthy, active person, and now I have to embrace these words of his! His words were meaningless gibberish.
It was like being half-asleep and half-awake, you are trapped in a limbo state and you don't know what to do. All were moving at a breakneck pace. I was focused on an empty space in the air between us.
It felt like my body was "fighting to breathe" as those words traveled in my direction with such force and I had to open my lungs just enough to "suck" the air to breathe. I looked up with a nervous laugh, a reaction to the confusion and anxiety I felt, that had nothing to do with my sense of humor. My blood pressure started to increase, and my face became flushed. I couldn't recall if any words had come out of my mouth or if it had been something I needed to say. My initial reaction was one of total skepticism and on the defensive.
"You're kidding me, right? Tell me you're kidding, please! "I spoke silently. I understand there is no easy way to break such bad news, but he should have been more compassionate in breaking the news to me and giving more clarity about the wheelchair situation. He could have been gentler, breaking the news to me and offering detailed information about the wheelchair thing. When will I lose my ability to walk? Am I going to die? Didn't he realize what he was telling me in a casual "'I don't care attitude and my whole life was in front of me? I was nineteen years old at the time. I was young, I was healthy, and had my whole life ahead of me. What was he talking about!!!!!? And my shoulder, what about my shoulder? What exactly is going to happen to my shoulder? Is it possible to heal it?
I'd never heard of anything called muscular whatever before. I mean how could I? Why would I? My family did not show any symptoms, they were all still walking, no weakness in muscles shown. Why me? Why would I have whatever it was? This seems absurd to me; surely something could be done to try to prevent me from ever ending up in a wheelchair. I was so active, young, and healthy. I had no idea what you were talking about. Me in a wheelchair??? I was mixed up with all kinds of other emotions, including anger, grief, disbelief, and denial
What the hell? Ah, come on! The diagnosis, the horrible prognosis, would go away and he was so wrong. A pregnancy test is a good example. It appears to be positive, but a subsequent test indicates that it is actually negative. So, who's to say this isn't the case?
As I am typing these words, my eyes fill with tears. My eyes well up with tears as I write these words. It transports me back to that day, and it is almost impossible to put into words how I felt at that very moment when the doctor said those few words.
The period between hearing the results and the dialogue thereafter is blank. Emotions wreak havoc on human memory, and I'm sure I felt a variety of emotions during the diagnosis. I was distracted by my own internal monologue along the lines of "What, What, Whattttttttt!!!. Oh my god, what is happening!
I heard enough and walked out of the room, followed by my mother. I could hear my mom's heels making a click, clack sound as she walked behind me. I couldn't comprehend what was going on at the time. My emotions were muddled. I was emotionally exhausted. It was as if nothing made sense.
I left the doctor's office enraged, frustrated, infuriated, terrified, confused, resentful, and disbelieving, to name a few adjectives.
My eyes were downcast at every step I took towards the car. I wanted to see if there was any abnormality. One foot in front of the other examining the angle of your foot, the momentum I walked. I slightly raised my arm and touched my shoulder. Still pain. I didn't even get any painkillers for my shoulder injury. I glanced to my side to see if my mother was looking at me but she didn't. She was walking in silence, her face devoid of any thought. My mother was and still is a person who hides her emotions, except for anger.
We both climbed into the car, still not saying a word to each other. The car was filled with an awkward silence. I tried to come up with a variety of things to say to fill the gaps of silence. There was a sense of unease. It makes your mind race, and I was anxiously wondering what my mom was thinking. I was fuming and unable to communicate. Enraged and unable to find words. Afraid and scared speechless.
Only years later after having my own children could I understand her reaction? Fear is a powerful emotion. Fear for my future, fear for my mind-set, fear for my well-being, self-blame? Those would be my reactions. How do you, as a mom, handle this news? What is your reaction? What do you say? Silence disorients and confuses you. I realized that we had no control over the situation.
My mother and I didn't have a close relationship. She was the mother, and I was the child. The word friendship wasn't part of that relationship. We were just two women living separate lives, playing our parts. I always expected my mom to have everything basically in hand, because she was my mom, and that was her job. If I didn't discuss this with her maybe she would not have to bear so much responsibility or cast ultimate blame on herself if things went wrong in my life.
The road passed silently beneath us as we drove home. We drove home in silence, each of us preoccupied with our own thoughts. I could hear the tires gliding smoothly over the road and was brought back to reality when we pulled up into the driveway, still in silence. I sat in the passenger seat, still wearing my seat belt, staring at the front door. I was scared to get out of the car and face reality. My new life would begin as soon as I opened this door. My new life with uncertainty.
I was reflecting on the words spoken, the verdict given. How can the mere thought of your foot touching the ground be so powerful? I didn't want to put my foot down. If my foot touched the tar my life is over. I would only have 4 years and 364 days left before this happens. I inhaled deeply, unbuckled my seat belt, and got out. I entered the house blindly, passing my mother on my way to my room.
My thoughts wandered back to this morning as I stood in front of the door, closing it behind me to leave for my appointment. How could I have known that my life would be shattered in a matter of hours? I reached out and pulled the door handle down, then walked in. I softly shut the door behind me. I went up to my window and drew the curtains closed. I needed to be in the dark so I wouldn't see the truth when I looked in the mirror and gently sat down on my bed, tears streaming down my cheeks and mascara staining them. "Jessit, man," My eyes were burning as I rubbed them, spreading make-up over my face and into my eyes.
I looked up at the ceiling, which was covered in luminous stars, and then at my door, expecting a knock. I'm not sure why I expected that, given how much distance I'd built between myself and my family over the years. Despite the fact that I was surrounded by my family, I felt the most lonely I'd ever felt in my life.
Little did I know that my demon showed him, digging into my life with a grin on his face, proudly smiling, for he now had a hold on me, just as he had planned? His grip would get stronger as time progressed but to what extent I had no idea. He would have complete control over my emotions and movements, allowing him to do whatever he pleased, and I had no defense against him.
I was having trouble sleeping. During the night, I would wake up with the words "wheelchair, wheelchair!" ringing in my brain. I leaped to my feet, trying to see if I could still stand. "OOOhh OUCTH" I had forgotten that my shoulder had been the root of the problem in the first place. My shoulder hurt like hell, and the jerk didn't prescribe me pain medication. I finally fell into a profound sleep, my brain turned off. I woke up with a start and jumped upright, "god dammit" I clutched my shoulder as the agonizing pain shot through, and fell backward. I was half-awake, in a trance, confused. Was it just a dream?
I tried to control my emotions but I could not. Hot tears streamed down my face, smearing mascara over my cheeks and down to my mouth in a single line. My head was pounding from crying and immense anger. I rubbed my eyes, forgetting that I would make it worse with the sting of mascara still attached to my eyelashes. "F....", I stared blankly at the ceiling, and then my eyes drifted to my legs which were hidden by a scrunched-up blanket from continuous kicking throughout the night.
I just looked at my covered feet and wondered if my feet would turn out the same way, scrunched up and unable to maintain their form. Would I see a change when I removed the blanket? I gradually moved my toes. All right, they appeared to be fine. I slowly lifted my right leg. OK, seemed fine. Right leg...ok, also fine. I pressed down on the mattress to sit up, and again the pain shot through my shoulder. "Really!!" Oh yeah, great. I forgot to add another problem to the one I'd been diagnosed with.
I rubbed my shoulder till the pain subsided. I looked up toward my door. It was slightly open. Did my mom come and check up on me? Did she come and see if I was sleeping or crying? I needed my mom's arms around me and to hear her telling me it was ok. I needed her to hold me and hug me like a small child that fell and she picked me up. Hug me tightly, please, and tell me you love me. I was so sad, and it wasn't a sadness that anyone caused; it wasn't anybody's fault. I was sad about circumstances beyond my control.
There seemed to be nothing worth getting out of bed for. Can I put on a brave face and act like I wasn't in pain? On top of the pain I already felt, I wanted this to be secret and to isolate myself. Over the years I'd tended to isolate myself from my family, so why was this going to change? I was used to keeping my real thoughts and feelings inside while pretending to be okay.
What was this muscular .... Ditrop... muscular ... something? I'd never even heard this word before. I didn't pay attention to him after he said the word "wheelchair." Muscle atro ... I don't know what he said!
The rest of the day was a blank, a complete blank. I did not understand what happened after I woke up. Did I go bathe? Did I speak to anyone? Did I cry? Did I become enraged? Did I isolate myself? I could not remember! I was confused. Memories hid like shadows in the brain and couldn't be consciously accessed. I wasn't sure if my mother had discussed it with my father. It was hard to share personal feelings with parents; especially since I only did so in arguments before. A small part of me felt disappointed. Did they not care to know what was happening? I would have rather died than ask for emotional support. I was not sure what was going with me to even start a painful discussion. The doctor was completely wrong-so completely wrong. Screw him. What did he know?
When you're dealing with emotional pain or loss, you eventually learn that emotional closeness with another person is critical. This demon got hold of my emotions, keeping them inside my head so it was not to be discussed. I was slowly building this stone wall around me, to protect the people who cared about me. If they did not know my feelings, they could not influence them. I was so wrong. I'd spend hours naked, just looking at myself, poking and prodding my body.
I would stare at my reflection from every angle, under every kind of light, always ending up thinking the doctor was a fraud. I did not see anything. I would rub my hands against every inch of my body. (Little did I know that a mirror eventually would become my enemy?) What was it, exactly? I did not understand. What did he see that I couldn't? I did not get it!!! "Help me, I do not understand!" I used to be quite outspoken. I used to speak up. Sarcasm would escape my mouth, but here I was, standing with my mouth glued shut, no words escaping.
For some reason, I don't recall discussing it with Clyde or anyone else in the household. I do not remember his actions, his understanding of his words. I remember the negative feelings I had, but why did I block out people's reactions towards the diagnosis? Was that part of my denial? I convinced myself that I was cured and that I didn't have to do anything. I had recuperated and could put everything behind me. I became addicted to denial. Denial might be the biggest way we deceive ourselves.
While denial can help, we have to accept the truth. At some point in their lives, everyone engages in denial. It is a typical method for securing a sense of self that can get you through some extreme circumstances. Without it, we would probably blindly accept the problem that exhausts both mind and body. If you are in denial, you are trying to protect yourself by refusing to accept the truth about something that is happening in your life. In some cases, short-term denial can be beneficial, allowing you to adjust to a painful or stressful issue. Unfortunately, most people do not realize the negative consequences of denial until they are in the midst of a crisis. If you keep experiencing the same bad outcomes and you cannot seem to figure out why there is a good chance that you are in denial.
Later in my life, I would dream that I saw a shadowy, dark figure in the room with me, walking toward me, only to open my eyes and find nothing. In my dreams, it felt like a demon became aware of me and then latched onto me to feed on my life energy. Maybe my dreams prepared me for the future. I never bought fully into the meaning of dreams, remaining mostly sceptical about such matters. Was I attempting to flee my dreadful fate?
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