After a few days of being in the hospital, my mouth still tasted of medicine, it was sour from the lack of cleanliness. My skin and hair were greasy. They hadn’t been washed. I was fifthly, I smelled of medicine and hospital, of my own bodily sweat and fluids, but I didn’t care. But of course it was at that point when a nurse came in with her Pepto-Bismol colored bucket and a washcloth. Her sole purpose was to clean me, while I lay there motionless. She added the antibacterial soap to the bucket, and began to dunk the washcloth into the bucket. She “cleaned,” my legs and arms, and then proceeded to wash my hair. I just laid there, drugged and emotionless. At that point I was numb. I had lost all of my feelings to the process, to the surgery, to the reality, to my forever-euphoric medicated state I was in. I just didn’t care. The world around me could fall, and at that point I would have never even noticed. I was blank and emotionless. At least that was what I told myself, but then again, looking back there are those moments that left their imprint in my memory.
The moment I had to stand up to use the bathroom, instead of relying on my, oh so handy catheter, is still fresh my memory. I guess it was a moment of weakness, and that’s why it stayed, why it became imprinted in my thoughts. It wasn’t when they removed the catheter that laid it’s mark, it was the moment that I realized that I had to use a raised hospital toilet. I couldn’t sit down on a normal toilet seat because it was too low, and I wouldn’t be able to make it back up. I never commented about this to anyone. I never told anyone how uncomfortable it felt to rely on a raised toilet. It was only temporary, but it was something I never wanted to repeat. It signified a dependence on something I didn’t want to have. Writing this I realize that sometimes I feel like an elephant, were every wrinkle is a memory, an imprinted mark that left its print on my skin.
Waking up was like a distant dream. I was so drugged-up numb by the morphine, in shock by my reality, and in no way was I capable of much. I could tell you that if I could have, I would have walked right out of that hospital. I wanted to escape my reality. I felt like Jenny in that one scene in Forrest Gump when she prays to god to make her a bird so that she can fly far, far away. I too wanted to be a bird, and so badly did I want to fly far, far away. It obviously didn’t happen. I was trapped and forced to face the truth. I was going to need some help to do absolutely everything I was once capable of doing by myself. That truth was difficult to face. Needing help from others was not an easy reality to accept, especially when in my own mind I was so sure I could still do it.
Doctor Mark Sinclair came in the next day with a teddy bear and carrying his doctor-type clipboard. He asked me once again to move my toes, and said that everything looked great. He then said, “You know you tried to stand up when we were stitching you up,” and somewhere in a distant memory, I remember the hands that pushed me down. Incredible isn’t it? I was about to walk out during surgery. Thankful I only remember the hands pushing me down and nothing else. Right before he walked out he also mentioned that my physical therapist would be there in a few hours to help me get out of bed.
It was not long after that I had a nurse and a physical therapist come into my room. They were both geared-up and ready to help me stand. At that point I was lying down face up, with a few pillows supporting my right side. My mom removed the pillows, as the nurse pushed me onto my side, and then the physical therapist slowly lifted me to the center, so that I was seated on the edge of the bed. Sounds like a smooth enough process, doesn’t it? It wasn’t. Every movement caused extremely sharp pain, and I just wanted to hold my breath and not feel it. The therapist had me sit there for a while, and that too was extremely painful. There was so much pressure on my spine and my hips that I felt unsure of whether or not my stitches would resist. After a few minutes of sitting there, the nurse came on my left side and the therapist on the right side, they grabbed me under the arm to support me while I stood up. I held on to the shoulder of the physical therapist while the nurse gave me my walker. When I stood up I was taller, I was stiff, and I was immobilized. I couldn’t move too much, but I was so happy to be standing, and yet in so much discomfort. I decided I wanted to walk all way to the end of the hall way, and when I was done I felt like I had ran a marathon. I was so tried and in so much pain, but some how it was all worth it. I was moving and I was now on my way to recovery.
My happiness of success faded quickly with the arrival of some unexpected visitors.My father was one of sixteen children. Most of my aunts and uncles are people I don’t know with the exception of a few great ones, most have evaded being part of my life, and part of my family’s life. So when the time came to visit me in the hospital, I truly wished they hadn’t. I didn’t want people that were not part of my life to see me in the condition that I was in. But of course, they came. The herd of them walked-in, and all I can think of was how do I get them to leave? I was angry that, after so many years, they showed up in my life then. I couldn’t do anything else, I just cried, and asked someone to take them away. I don’t know who it was who kicked them out; I was too drugged-up to remember. I think about now, and I am not sure I would do anything different. They were never part of my life, they never made me feel as though they considered me as one of their nieces, and because of that, they didn’t deserve to be part of my life.
The days at the hospital are all faded together, I am not too sure in what sequence it all happened but I do remember that the experience was enough to make me want to hide from my reality, from the pain, and from the fact that I needed help to do just about everything. I was disabled, I was weak, and I was humblized. To make matters much worse, my monthly visitor came during my time at the hospital. So I was no longer just in pain from my surgery, I was now physically discomforted by the fact that I had my period, and all I wished I could do was escape.
As I slowly regained consciousness, the smell of medicine, of sickness, of a hospital transpired throughout my senses. I could barely open my eyes they were stuck together by the rheum gathered in each corner. I began to blink, to regain the lost moisture in each eye. My mouth was also dry, it felt like sand paper, and tasted of sore medicine, there was no moisture, I was parched and in desperate need of water. I wanted to stand, I needed to get out of where I was, I needed to find water. But I couldn’t move, I was trapped to the bed, stuck in my place by the heaviness of my body, by the foreignness of my new form. Should I cry? I couldn’t, I lacked the energy to do so. I couldn’t think, what had happened? Why couldn’t I move?
My confusion was interrupted by the sound of the nurse and the doctor approaching. The doctor looked at me and asked, “Can you move your feet?” I didn’t respond I just wiggled my toes for him. “ It looks great,” he gave me a smile, and I am not sure weather he stayed or left, but soon after the nurse said, “ We are waiting for your room, it’s currently being cleaned. Can I get you anything in the mean time?” I asked for some water, and my mama. She came back with ice chips, and said that I could see my family as soon as the room was ready. I grabbed the cup of ice from her, as if I hadn’t had water in days. The extremity of my thirst led to me downing the cup of ice, enjoying each chip as it moisturized my body, and allowed me to feel alive again. It was really all to no avail, because soon after it all came right back up. Vomiting water right after surgery felt like death. The pain left my entire body in shivers, I had never experienced anything like it, and I didn’t want to go through it again. Clenching my thirst was not worth the effort I had to make to vomit, and definitely not worth the pain it left me in. To relieve the discomfort I was in, I was given morphine, and it truly did make every so much better.
I woke up in my room, to my entire family staring at me. They looked worried, concerned, as if they really had no idea what to expect. In fact, I didn’t either. I had two IV’s in one hand, and one in my neck. I had catheter, and a morphine button, an endless supply of “happy medicine,” given to me in small doses every 15 minutes. I must say that I was in shock. Somehow I never really considered the fact that the new addition to my spine would make me feel so much heavier and so stiff. I felt as though I had bricks on top of me and a piece of wood strapped to my back. My entire body was foreign, I did not know how to move in my new shape, any slight adjustments would cause trickling pain throughout my back.
It was then that I realized that I had given up my ability to move, to be flexible, for a smaller curve and for life. The exchange was something I hadn’t considered until that point.
It’s been thirteen years since I stepped into Nemours clinic for the first time. Time passes, years go by, and now it feels like a dream I once had. A faded memory of a time that once was, and now has been distorted through time. Like thick fog that surrounds an autumn day, my memory has been washed away only leaving traces of the events. Those traces are moments that left scars, scars to be remembered even years after the time has passed.
Thirteen years after, I can say that Nemours clinic was a very nice clinic, which in its appearance resembled a hospital, it even smelled like one. It was painted in various shades of blue, and on the walls were cartoons and drawings made by all of their patients, all those children that entered and left Nemours clinic. I was one of the masses; I was one more child that had stepped into Nemours clinic in hopes of recovery.
From what I remember, Dr. Mark Sinclair was a very young Doctor. He had just recently been hired as an Orthopedic Surgeon at Nemours clinic he was married and at that point hadn’t had any children of his own. He was the kind of Doctor any child would want, young, nice, confident, and reassuring. My appointment with him was short and successful, for the most part. I was going to have surgery, but I would not have my full spine fused, he would only work on the top curve and leave the bottom curve alone. The only problem was that I did not have health insurance, and finding the means to pay for the surgery was one more step in the journey.
The day of the appointment had arrived, and it’s amazing the things I remember, and things my mind has chosen to forget. I can honestly tell you that I don’t remember much. I don’t remember the waiting room or even getting x-rays done. In fact, I am not sure I did. I only remember the moment the Doctor came into the room.
He was an older man, a retired orthopedic surgeon, who wore glasses and blue and white plaid shirt. He walked in, and immediately made his way to his rolling stool. He placed both hands on his knees, and looked at me as he bent forward. His stare was an empty stare, the kind of stare you give an enemy, numb and with no compassion, he did not exude any kind of friendly vibes, and in fact I am not sure he’d seen a patient under the age of 60, in years. He began by saying, “ it doesn’t look good. You have two major curves, both equally bad, 72 degrees in the lumbar, and 54 in the thoracic.”
He paused, and I stared and waited for him to continue. I think he saw my look of confusion. What he had just said might as well have been a foreign language, all I knew was that whatever he had just said, it wasn’t good news. He began again, “ You need surgery. If you do not get surgery, by the time your 30 your spine will have crushed your lungs and your heart and you will probably be dead.” He said it straight and to the point. There was no filter, he was accustomed to working with the elderly, people who had heard it all, but at that point I was just a child, no one had ever said anything like that to me. I just sat there, and held in my tears, pretending to be strong, it was all that I knew, if I couldn’t pretend to be strong, I would never muster the courage to actually pull it off. I replied by asking, “Can you do this surgery?” He quickly replied, “No. I don’t do surgery anymore, and I don’t work with children. You have to see a pediatric orthopedic. Suzy at the front counter will give you the name of a Doctor I highly recommend, there might be a long wait to see him, but he’s worth the wait.” He paused and continued, “Do you have any other questions?” I shook my head and he stood up, shook both of our hands and walked out. My mama began to question me, “what did he say, tell me what he said.” I couldn’t speak I had no words. Had I said anything, I would have broken down into a million tiny pieces, so instead I was just quiet. I needed to process what he had just said, and what that meant for me. We walked out of the room and headed towards the counter.
At the reception desk, I spoke to Suzy and she wrote the phone number and the name of the pediatric orthopedic Doctor at Nemours clinic, Dr. Price. I took the piece of paper and squeezed it tight. I thanked Suzy and walked out, with my mama slowly behind me. She continued to pester me, asking me what he had said. But I was in a zone, her words were washed out, I could only see her lips moving but there was no sound. I was in shock and once I sat down in the passenger seat of my mama’s corolla, I felt the fear over come me. Fear that pumped through my veins leaving every inch of my body in a tremble. It was a fear that consumed me, that left me petrified. A vacuum that sucked any ounce of confidence I had left. And that was it, I broke down and I just cried the entire way home. I couldn’t speak, I just cried. My mama stopped asking and just drove. We made it home, and as soon as I walked in the door my brother was there to receive me. I just hugged him and cried. Still gripping on to the little piece of paper that Suzy had given me.
Once I finally settled down, I told everyone I had to have surgery. From the point on, I never cried about having surgery again. Those tears were a way of mentally preparing myself for what was to come. Tears of fear and of sadness, for myself. Tears that once I wiped off, left traces of strength with every drop. I could only be strong, and fearless. There was no room for fear and sadness in the journey that lay ahead. I was ready, and prepared, I would have had surgery the next day had I had that option. But this was only the beginning; there was still a long road ahead.
I am convinced that in the end, every negative situation has a silver lining, a glimmer of hope that makes all the difference. In my life, I have experienced many glimmers of hope, many angels, and many possibilities. But, my most recent glimmer of hope came in the form of a Dutch Doctor, A Dutch Angel.
A few weeks ago, I received an email from My Dutch Angel. His email was simple and straight to the point. He offered me a silver lining. The possibility to receive treatment at his clinic to help with the pain and discomfort associated with Scoliosis.
Unfortunately, my glimmer of hope, my silver lining, did come with some bad news. Due to the fact that I have undergone spinal fusion, it may mean that the treatment that the clinic offers may not work for someone like me. The good news is that My Dutch Angel has promised to try to look for other options, and to speak to other Doctors, just to see what can be done.
If he comes back barring more bad news, his efforts will not have been in vain. It has given me a glimpse of humanity at it’s purest, a silver lining, and a Dutch Angel.
All girls, at some point wish that they could change something about their body. They wish they could loose those extra five pounds, or change the shape of their nose, it is that desire to be perfect blocks the ability to see the beauty in the imperfect, the naturally beautiful you.
Unfortunately for me, I too was a victim of “wanting to be perfect”, but in a very different way. Soon after I turned eleven, I began to be more aware of my deformity, there was no hiding it, it was clearly there. I used to spend so much time in front of the mirror evaluating my deformity, bending over, grabbing it, and wishing some how I could just cut it off. At the time I felt as though I could deal with the curvature, but the deformity made it visible, made it so much more real. My desire to hide my imperfections, and to look perfectly normal, led to me making a conscious decision to gain weight. I remember thinking that if I were a bigger person, then my curvature would be less visible, and all I wanted was to look like everyone else. It became much easier to gain weight and hide my deformity then to deal with it. If no one would notice it, it meant that some how it wasn’t really there, it made it less real.
I remember the day I realized that my plan was not as effective as I thought it would be. I was in fifth grade, I was tall and big, and I felt on top of the world. That day, began like all the rest. I had taken the bus to school and once we arrived, I gathered my things and waited for my turn to get off the bus. Stepping off the bus, I had back-pack in hand and I began walking to my class room. I paced myself, trying to extend the minutes between getting off the bus, and making it to my class. When suddenly I felt someone behind me, and soon after I felt the gentle touch of the two hands that pulled my shoulders back, and a voice that softly said, “you should work on your posture, your hunching over.” It was one of the teachers at the school, who I am sure didn’t mean anything by it, but at the time it was as if someone had pulled off my blanket and exposed me to the world. She could see it, and if she could see it, so could everyone else. I had nowhere to hide, I was exposed.