Consumed

Tags

Fiji, recuperation, Scoliosis, Surgery, Travel Channel

I was a servant to the Television—religiously consumed by the channels, by the same series on repeat, and yet through my recuperation it was precisely TV that was my salvation. Every morning I rose, I was stiff, I was in pain, but i didn’t have to move much. The bed I slept in through this time conveniently faced the television, so with no real movement required, I would grab the remote as if it held my golden ticket to the Fiji Islands on the Travel Channel, a plate of culinary master piece on the Food Network or the winning seat on the Price is Right.

After a few months of nothing but television and the occasional break to the bathroom and to eat, the images all faded together, like impressions of dreams I once dreamt. The channels began to all mold together– as if somehow after a while, they were all just one channel, one episode during one eternal day.

In retrospect I don’t know what I would have done without the convenience of that TV. It gave me a much needed escape and put me in so many other places.

But once I started to feel better, and was able to move a little more, I was no longer able to watch TV the way I did during this time of recuperation. In fact till this day, I still think twice before I turn it on.

My Journey

Tags

dispatched from the hospital, drugs, Family, Health, Hospital, Medicine, Mother, Parenting, personal hygiene, PMS, Scoliosis, Surgery, those memories, travel, wheelchair

My imprinted memories from the hospital go far beyond the episode with the toilet.  I am full of many memories I wish would vanish; disappear, because maybe they never happened. We all have those memories, those we wish never happened.  If we just don’t speak of it, or think about it, we will one day forget. Until recently, I was still trying to forget, still trying to get a magic eraser, but it really was all to no avail. Somehow, along the path to forgetting, I realized that it was the path, the journey, which made me–me.

My journey at the hospital was long and arduous. Privacy was ripped away from me, and my life and personal hygiene was in the hands of other people. To make matters much worse, I was menstrual two days after surgery, and all I wish I could do was take care of it by myself–but I was dependent on other people for everything. Which meant that too was in someone else’s hands.  Luckily, morphine hid any embarrassment I might have had, hid any feelings of dread, and it just left me numb.

Undesirably, my morphine was taken away two days prior to going home. Those were the worst two days. I couldn’t sleep. Everything hurt. I couldn’t get comfortable. My body was in array of sharp pain from the top of my spine to the bottom. I was given a high dose of oxicondine, but it did nothing. I still felt every ounce of pain in my body, and I thought I that this was just how it was going to be. Pain would be with me forever, and perhaps I would never feel normal again.

The day I left the hospital, my brother came in followed by a nurse and a wheel chair. He pushed the wheel chair all through the hospital, while my mom parked the car in the front of the hospital.  This memory is foggy. But I remember feeling as if I couldn’t really believe it had just happened to me, but it had, and it was now one step closer to being over. Surgery was now over, and what was left was recovery. But no one ever told me what to expect, and my expectations of what was to come was far different from the reality I was faced with, because my life would never be the way I once knew it. So being pushed through the halls of the hospital, was my transition, leaving my life I once knew, and entering a completely new life. The journey had only just begun.

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Like An Elephant

Tags

antibacterial soap, Beauty, catheter, Health, Hospital, life, moment of weakness, Orthopedic surgery, Pain, Pepto-Bismol, Scoliosis, Shopping, Skin Care, Surgery, Toilet seat, travel, vacation

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.

Escape…If only I could

Tags

acceptance, clipboard, distant dream, distant memory, Family, fear, Forrest Gump, Hospital, life, Mark Sinclair, morphine, Orthopedic surgery, Pain, physical therapist, Scoliosis, scoliosis pain, scoliosis surgery

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.

Borrowed from Ranta Sara Rez

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.

My Foreign Body

Tags

Back Pain, body, confusion, desperate need, Family, fear, Frida Kahlo, Health, life, Medicine, morphine, Orthopedic surgery, Pain, rheum, room, sand paper, Scoliosis, scoliosis pain, scoliosis surgery, shivers, spine, Surgery, water

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.

Borrowed by: World Art Resources

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.

 

The Abundant Silence

Tags

Back Pain, chuck e cheese, Family, gonna be alright, january morning, life, sadness, Scoliosis, sky diving, spine, Surgery, Teddy bear, thirteen years

It was 5:00am that January morning, when my sister, my mama and I drove to the hospital. I was thirteen years old, wearing my PJ, and carrying my favorite teddy bear in the world. It wasn’t really a teddy bear it was more like a stuffed dog from Chuck E. Cheese’s that my brother had won for me when I was 4 years. It was my favorite, and the one I slept with for many years. It came with me that morning to comfort me through my surgery, and throughout the recovery.

The ride to the hospital had an eerie feeling, as if no one really knew what to say. My mother’s sadness and her fear was felt throughout the entire car, as my sister drove careful to the hospital. I didn’t say much. I just starred aimlessly at the clock, and observed how time just stood still. As if the minutes never passed, the seconds didn’t exist, and I was no longer myself. I faced the reality outside of my existence, protecting myself from the fear, the anxiety and acceptance. Silence was all that was heard that 20-minute drive to the hospital.

Some times words don’t come out even if you really want them to, because sometimes, there is nothing really you can say. The silence carries with it words of emotions that transcends through space, like electricity carrying voltage. The silence that morning was filled with more emotions than I could handle. The silence lasted right up until we made to entrance, when finally it was broken by the sound of Sweetbox, “Everything is gonna be alright,” and soon after my sister said, “this one is for you.”

It was true, everything was going to be all right, and I couldn’t think about it too much. Because heading into surgery, is a lot like sky diving, you can’t think about it too much, because before you know it your no longer in the plane, and your no longer in control, your life is in the hands of the Doctor.

We walked to the hospital, and soon after I was called back. My mama and sister went back with me. I was given a hospital gown, and once I put it on the nurse came into the room. She gave an IV and soon after she gave me a shot, a “Happy Times Shot.” I was feeling great, and I was ready to head into the surgery room. I gave my mama and my sister a hug and I was taken away. Right before surgery, the nurse asked my, “whose your favorite Disney character?” and well, I am not sure if I had the chance to respond. The next thing I remember was trying to sit up and several hands pushing me down, and then, I was out again.

Blood Donation

Tags

Blood bank, blood donation, bruise, donating blood, Scoliosis, sore arm, Surgery

Donating blood is like giving life to a stranger, it’s selfless. You give a bit of you to someone else, so that they can make it.  It allows for a perceived connection, as if somehow we are all simply united and similar in the basic aspect of blood. I have never donated blood for anyone else other than myself. I would if I could, but I’ve had a few tattoos done, and I’ve been in Africa a few times, which means I can’t for at least another year or so.

Borrowed from mecostaosceolaredcross

The first time I donated blood for myself, was when I was thirteen. My surgery was scheduled a month a way, and in that month I had to donate two times, 1 liter of blood each time. I had no problem during my first visit to the blood bank, it was smooth, pretty much in and out.

The second time wasn’t as easy. I sat down on the chair with my arm facing up squeezing a ball as the nurse searched for my vein.  She of course couldn’t find my vein as easily as I would have hoped, which lead to me feeling like a piece of wood with a wood pecker, pecking away at my arm, and oh how unfortunate it was. It was that persistent digging that left a giant bruise, as well as a sore arm.

Eventually she did find my vein, and I managed to donate the second liter. Once I was done, I was given orange juice and a cookie and was told to stay seated for at least 5 more minutes. I sat there eating and drinking and when my time was up, I stood up slowly and then slowly fell down again. All I remember was a herd of people heading my way, and then darkness.

I don’t know how long I was out; probably just a few seconds, but finalizing the blood donation marked the last step before surgery. I was done, at that point I only had a few more weeks to go, and I would finally have my surgery done.

 

One Step Closer

Tags

dónde están los ladrones, Health, magnet lab, MRI, popcorn ceiling, Scoliosis, Shakira, shakira cd, Surgery

Have you ever had an MRI?

My first and possibly the last one I will ever have done, happened relatively soon after we found a pot a gold.  Getting my MRI was like breaking through a milestone, it meant that I was one step closer to surgery and one step closer to living a normal life.

MRI : Borrowed from Magnet Lab

Prior to getting my MRI done, I was told to bring my favorite CD so that they could play it for me while I lay there. The day of the MRI had arrived, and my mama and I arrived to the clinic at 7am. As usually we sat in the waiting room, while the nurse called me back.  Sitting there waiting for them to call me, I gripped my Shakira CD, Dónde están los ladrones? with anxious anticipation. I had no idea what was ahead of me, and I didn’t really know what to expect. Being the first to arrive I was the first to be called back, I stepped back alone and my mama waited for me in the waiting room. The nurse handed me a gown and I handed her my CD.  I changed in the bathroom, and when I was finished the nurse was still there waiting for me. She instructed me to lay down face up, on the platform that was positioned in front of me.  I lay down and the platform moved into the machine, and that was it, I was getting an MRI done. The wall of the machines encompassed my entire body and I only had a few inches of space. Inside there was a beige popcorn ceiling. Waiting for Shakira, to come on, I counted the popcorn in the ceiling instead. This didn’t last long, because I quickly fell asleep to the sound of the loud repetitions the MRI machine was making.

At the end of the experience, I was given my CD, and that was it. That was the first and last time I had an MRI done on my spine. It was nothing completely out of the ordinary, but it meant that my surgery was just one more step closer.

 

The Search For a Pot of Gold

Tags

financial counselors, florida kidcare, healthinsurance, Insurance, Leticia, Mark Sinclair, Nemours, own insurance, pot of gold, preexisting condition, small babies, Surgery, United States

As a small child I would daydream of someone like Opera finding out about my story. They were laverish daydreams, full of details. I would imagine that someone would just come over, and make everything possible. It was always a person that simply wanted to help make it easier for me to have surgery. By the end of my daydream, I was always perfectly straight and had, had surgery and everything was just perfectly normal. Well as you probably can guess that never happened.

Finding the means to pay for my surgery took a long time, and a world of patience.  At the time my mother worked from home babysitting two small babies, Diego and Nicole, which meant that she neither had insurance, nor the financial capacity to pay for her own insurance. So for me this meant that we had to either find health insurance that was willing to pay for a preexisting condition, or find a lot of money, relatively soon.  Well as you probably can guess that did happened.

We spoke to the financial counselors at Nemours Clinic, and they suggested that we apply for Florida KidCare, a health insurance for children under 18. So that is exactly what we did. After several months, of filling out paperwork and resending paperwork and filling out more paperwork, I finally received the approval to have my surgery done the coming year. At that point, I couldn’t be happier.  It was as if I just passed the eternal bureaucratic highway, and I was now looking at the other side, an oh how nice it was!

As much as I wish I could say that was it, and BAM I had surgery, it wasn’t. Florida KidCare only approved 90% of the surgery, and did not approve the MRI, which I needed to get done in order to properly have the surgery, and it didn’t approve the Doctor’s visits. Some how we were back to square one, back to trying to figure out how to find roughly $20,000, to pay for the remaining 10% of the surgery plus everything else I had to go through. I needed a pot of gold, and I needed it fast.

Borrowed from MX Sweep

While the search for options was happening, time passed, and it had been a year since I started seeing Dr. Mark Sinclair. A year of worrying whether or not I would actually have surgery, a year of watching my curvature increase without any possibility of stopping its growth, a year of paperwork and of illusions and disillusions.

And ironically, the pot of gold was right in front of us the entire time; part of my father’s inheritance, when he passed away was an apartment building in Jersey City, NJ. My family owned half of it, and my aunt Leticia owned the other half. This building was, in many ways our lifeline. A set monthly income, for minimal work, and selling it would be the solution to my problem, but it meant we would loose this monthly income.  The difficulty came with convincing my stingy aunt Leticia to sell, or to buy our portion. This part of the story, I don’t know too well, because at that age I was never told that we wanted to sell the building to cover my expenses, but that was the simple truth. I don’t know how long it took Leticia to give in, but I do know she finally gave in, and then after the deal was done, she regretted it. I often wonder how she lives with herself. If any of my nieces or nephews needed a life or death surgery, I wouldn’t think twice about selling my entire life for their wellbeing. But it was done, and even after she regretted it, I would have the surgery done, it was scheduled January 12, and what a relief it was.

The journey to find a pot of gold was tedious, and emotional. It’s not so often you feel so close to something as simple as life, and yet so far away from it. Money was my barrier to life. If I didn’t find the money, I could have lost my life. It’s a difficult thing to consume at a young age, and it’s even more difficult to watch the struggle my mother and brother went through to make it happen. They were fighting for my life with each paper they filled out, and with each day that passed.

The Fighters For My Life: My Mama and My Brother

 

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Thirteen Years Ago…

Tags

Clinic, Health, Medicine, Nemours, Orthopedic Surgeon, Orthopedic surgery, Surgery

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.

Borrowed from: Nemours Twitter Page

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.

 

 

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