Chapter Fourteen: Monster

I was officially a teenager by Autumn 1995 at 13-years-old. It was that special transition phase of feeling the teenage part with heartthrob posters plastered on to my walls, yet still a little girl at heart with plush stuffed animals lined on my bedspread. That Spring and Summer was a turbulent and memorable blur with receiving my second kidney transplant, Field Day, and then experiencing a kidney rejection. I often wondered if everything really happened. All I had to do was look at my scar that was fading into a discolored, meandered road to solidify that: “Yes, everything really did happen.”

Every single day, I thought about my organ donor and her family and this precious gift of life that I had to safeguard like an innocent infant. Little things that I never thought about now meant everything to me. Waking up to a dry bed because I no longer wore diapers and could control my bladder. Choosing my clothes in the morning, rather than staying in my pajamas from weakness and fatigue. Walking outside with the sun shining on me without having depend on my crutches or even think about the fact that I had used a wheelchair at once. Being in those moments with my loved ones without my mind drifting to waiting for life to begin again with a second kidney transplant. Peeing without a burning feeling. Eating and savoring foods that I could not eat before my second kidney transplant. So, this was life, I thought. I never knew how worthwhile life truly was until I almost completely lost it.

Here and now, it was the first day of school for 8th grade. I could not believe that I was actually going back to school. My heart hammered so loudly in my ears that my head was surely about to explode. My hands were so clammy that my crutches perched under my arms were slightly wet from the sweat. These nerves and knotted stomach reminded me of Field Day, but they were also somewhat different. For so long, I craved the normal routine of attending school, studying, being around my friends, and belonging somewhere. Now that it was happening, I was overwhelmed and so scared that I was going to screw everything up and never really know what it meant to be me and not my chronic kidney failure.

I gulped and stared at the mirror with my crutches as a physical support when all I really needed was emotional and mental support. I still needed the crutches when the walking became intolerable, but it was rarely ever intolerable ever since receiving my second kidney transplant.

“Get it together, Mary. There is nothing to be afraid of,” I whispered hoarsely to my mirrored reflection.

My mirrored reflection showed me a round and puffy face from the Prednisone immunosuppressant medication and heavy dark eyebrows from the liquid Cyclosporine immunosuppressant medication that tasted like how gasoline smelled. I looked beastly on the outside, but I had never felt more alive on the inside.

Getting to school was a big, hazy, and muddled dream. Before my second kidney transplant, I remembered that my classmates and I merged together as one big mass. But, now, in the chaos and frenzy of the first day, these were classmates that I did not recognize. Everyone was divided into the start of little groups within the larger umbrella of popular versus unpopular and the feel of hormones was running high. I was in another world of Goths whose favorite color was block, Jocks whose favorite item was either a baseball or football, Cheerleaders whose favorite clothing were tiny and tight. I was awestruck at my girl classmates with short skirts and trim, yet the onset of curvy bodies, and the deeper voices and hairy legs of my male classmates. The lights in the long corridors were unfamiliar and nearly blinded me compared to the hospital hallway lights. The scent of masked sweat with “Secret” deodorant and the sounds of slammed lockers, loud laughter, and high-pitched squeals of students reuniting with one another scratched painfully at my ears. I tried to focus on the couple good friends that I did have, including **Claudia and **Gina, but the bubbling blender of emotions that churned in my stomach left me speechless and with a dry mouth. I wanted to say to either Claudia or Gina: “What happened while I was away for just a couple months? Who were these people? What was going on?”

So far, everything was going as good as can be expected. Everyone was so wrapped up in their own nerves of the first day of school that they barely noticed me. Of course, the teachers had their eagle eyes and words of comfort and concern directed at me, but I could handle them. I just could not handle my classmates. I wanted and needed to get through this first day of school. No stares. No pitying. No asking me anything about my health, hospital, and time at home to recover. I was lost in my own thoughts when I heard: “So, Mary, you are back!”

I openly cringed and begged myself mentally: “Please, do not let him sit down. Please do not let him sit down.”

He sat down.

It was **Ed. When I first went on crutches and then a wheelchair, Ed was the one who spent many days fiddling and playing around with the crutches like little toys and cackling in my face. With his curly hair and light brown eyes, he looked more innocent than he actually was.

I sat with my arms crossed as Ed fiddled around with the crutches yet again and looked at the floor. “So, what was it like?”

“What was ‘what’ like?” I asked sharply. The tone of my voice could have cut glass. I almost did not recognize this voice. Where did that come from?

He stopped playing around with my crutches and his round eyes looked at me in shock. I had never spoken back to him. I had always just let him play around with the belief that if I ignored him, he would go away. My health challenges were slowly teaching me that ignoring was not the answer to situations that we did not want to deal with, but I had to face them.

He changed the subject. “You were at that Grasslands Hospital, weren’t you?”

I shrugged and stared straight ahead.

He smirked and whispered in a hushed voice: “You know, I heard a lot of people died there. Like, there are dead bodies all around at the bottom level or something.”

I turned my head slowly to him and gave him an incredulous expression. It was meant to be harmless, but something was set off in me that the guy was a real idiot! Was he for real?

“Grow up,” I muttered.

Ed looked confused, but I think I looked even more confused. Yes, I was talking, but this was not me at the same time. I had never spoken back, cold and icy. He whispered: “Were you scared of dying?”

I finally met his gaze and said defiantly: “What is there to be scared of now?”

His mouth dropped open and he left.

Ed was the first of many that I lashed out on to. From then on, the monster in me was released free and stayed with me for just about the entire duration of my teenage years and in junior high school and high school all thanks to the side effects from my immunosuppressant medications, particularly Prednisone and Cyclosporine.

The angel-devil, bipolar medication, Prednisone, caused erratic mood swings and me snapping abruptly and sharply without any reason at all. The bulk of individuals who were affected by my moods were my closest friends and especially my family. My moods were sudden and ranged from either all smiles and happiness one moment or then a biting verbal outburst or me crying the next moments. In addition to the emotional time bomb in me that exploded without warning, Prednisone taunted my tastebuds and caused severe and continuous hunger pangs. I transformed into a human garbage disposal, eating as though I was starved or that I had never tasted or had food before. I was quickly turning into an obese and ugly duckling on the outside after my second kidney transplant. I was short and stout with thick-framed glasses, double to triple chins, and plus size clothing. I drastically gained weight. No matter how many times I knew that I had to stop eating unhealthy foods just about non-stop, the uncontrollable desire for food and hunger pangs were no match for Prednisone.

Along with the dramatic emotional and physical gained weight and acne roller coaster ride that Prednisone brought on, another medication, Cyclosporine, was kicking my ass. Dark hairs emerged and grew on my face. To me, the facial hair was exaggerated to a bordering beard. In the mornings, I fingered the facial hairs on my chin, puffy cheeks, and above my upper lip. I poked and prodded at my eyebrows that resembled hairy caterpillars. I could have plucked or shaved, but I did not know how and I was too shy and awkward to ask my Father and my Mother was certainly not around for any assistance. I was also convinced that the hairs would just grow back even faster at super speed if I tried to remove them, so I let them be. No one at school said anything to this hairy, moody, and fat transformation. I assumed the wordlessness was equivalent to pity, and that made me feel all the more worse because I could handle teasing and taunting over me being a charity case. My classmates often did sneak glances and stares my way that seemingly shouted to me: “Wow…we have a Circus bearded lady right in our own school!!” The combination of hormones, puberty, and the side effects of my immunosuppressant medications that I was mandated to take in order to safeguard my second kidney transplant were turning me into an emotional and moody mess on the inside and a large, beastly creature on the outside. I saw myself as a victim to these medications and my health. I no longer knew who I was. I was turning into a monster.

1995/Age 13: This picture was taken just months after my second kidney transplant. 

You can see how round I was, the weight I gained,

and the heavy and hairy eyebrows and facial hair from Cyclosporine.

Before I knew what was happening, I started to dread and hate the social side to school. I felt more alone, isolated, and like an oddball than ever before. I envied the cheerleaders with their perfect hair, teeth, trim figures, and peppy demeanors. Unlike most girls, I did not pine away for the jocks because I judged them as utter jerks that were more into their muscles and a pigskin football than anyone or anything else. Instead, I had a soft spot and peaked curiosity for the shy or smart guys, wondering if any would ever find an inkling of interest in the Monster Mary that went from sweet smiles one minute and then snapped snarls another. I only looked forward to the logistical sides of school—studying and learning. I locked myself into my own group of one or two good friends (if that could be counted as a group) and buried my head in the books to focus on my studies and obtaining Straight A’s rather than any social life whatsoever. I fell in love with History and English, so I could get lost in other worlds and avoid my own reality and life. I disliked Math and Science, because the numbers and bunsen burners were too factual for me. I fretted about SAT marks, attending and participating in just the right amount of extracurricular activities for universities to nod and accept approvingly, and getting on the good side of my teachers. The class I unsurprisingly disliked the most was physical education—just like elementary school days. It was not so much the activities that I cringed at because I was placed in a modified physical education class to accommodate my ongoing hip problems, but it was the changing into and out of gym clothes that I absolutely loathed. I was ashamed to undress because my own fat slabs of skin hung and made me feel like the most disgusting monster in the whole wide world. No one laughed or whispered behind my back and, if they did, I did not notice because I was too focused on and paranoid about my own body. I slipped into and out of my gym clothes as fast as I could. I was convinced that I gained more physical exertion from that rush alone into a change of clothes than any other exercise or movement made in physical education.

If I were to be perfectly honest, underneath my scorn and eye-rolling at popular groups, there was a secret lust in me to actually be popular, belong, and be normal somewhere—anywhere. Yet, I knew that I had not fit in when I was a child and I was not about to belong anywhere in high school. I was a social recluse and as easy as it was to keep to myself in my very own box and category, it also hurt like hell to want this social status popularity dream that I could never attain because I did not look and I could not act the part. I managed to break promise number one post-kidney rejection: Normalcy. Silly and stupid me thought that perfect health was equivalent to normal and belonging, but as each school day past full of studying and lack of socializing, it was clear to me that a healthy physical body could not train and force me to be someone I was not. I was not a cheerleader. I was not a fashion or beauty queen, and I cared more about my studies and Straight A’s. So, it was time for me to really accept and embrace this abnormality me with hugs and kisses.

As my high school years went by uneventfully, I eventually pleaded with my Dad to find a way to get me off the Cyclosporine medication that made me into a hairy freak of nature. The solution that my nephrologist came to was increasing my Prednisone steroid dosage as well as taking a relatively new immunosuppressant medication called Cellcept. The Cellcept worked wonders and was my heaven-sent drug with side effects that did not hurt my high school years, but would affect and hurt me later on in adulthood. As soon as I was off the Cyclosporine, the dark hair that crawled on my face began to slowly fall off and reveal my chubby chipmunk face. However, the increased dosage of Prednisone reared its satanic ugly head with making me extra moody, crazy, snappy, anxious, emotional, and constantly ravenous. My sudden prickly modes surfaced sporadically. I became easily annoyed or upset by anything that did not go my way. I snapped and bitched about nothing and everything. The moments that I was happy, I was really happy with smiles and chatting excitedly with my friends and family. The moments I was sad, I was really miserable. I was soon spinning into a very vicious cycle of either crying or snapping at my friends and family without any reason, feeling guilty, and then turning to food to alleviate the bad feelings and moods that were eating me up alive.

My way of dealing with this monster was hurting myself. Hurting myself meant eating—and eating more and most unhealthy. In the darkest of nights, I tiptoed on the shiny kitchen floor and opened the refrigerator or freezer doors. The light flicked on in the freezer and illuminated my victim: Breyers coffee-flavored ice cream. With the moon glistening brightly and the TV humming softly with funny nightly sitcom sounds and my Dad snoring away, I savored my smooth, sweet, and silky coffee ice cream. As soon as I finished and drowned in the sweetness of it all, a salty craving overcame me and I always wound up scrounging for chips or cheddar-cheese flavored Goldfishes. As a child and post-first kidney transplant, I was a full out comfort eater, finding solace in crunchy and golden chips or sour and sweet candies doing a sultry tango on my tongue. With the Prednisone pumped into my body twice a day at an increased dosage to compensate for nonexistent Cyclosporine, I had an insatiable appetite. Food that was my constant reliable old friend had now turned into my addiction. Did I feel shame? Yes, but it was always AFTER I attacked my latest foodie victim. I created all these excuses and false promises to myself. I said that I ate the bowl of ice cream because I was stressed that day or celebrating a victorious grade A mark on a difficult math exam. I reasoned that life was too short as my health taught me and I finally had the chance to eat all I wanted to, so why not just go for it? I promised myself that it was the last time. I contemplated seeing a nutritionist. I stuck cut-out models from glossy magazines on the refrigerator to remind me to look like them, instead of looking like me. None of these helped or came through because of my failure to change the brutal cycle that I made. Even worse, often after I gorged into fattening goodies, I withdrew into a guilty and lonesome state and abused myself further by facing the full-length mirror. I eyeballed in awe at my grotesquely obese reflection and quietly muttered to myself: “Mary, what is happening to you? What are you doing to yourself?  What are you doing to this kidney?”

The digital scale in the bathroom laughed in my face as I reached a whopping 185 pounds at 14-years-old, which completely mismatched and endangered my 4’11” inch frame. Walking up the stairs became an obstacle course with me huffing and puffing until I thought I would collapse. Looking through girly magazines with thin models smiling sexily made me all teary and angry at myself. Instead of opting to exercise and make a change for the better, I searched like a rabid dog through the kitchen for the latest junk food to simmer down my raging hormones and emotions that were inflicted partly by Prednisone, but mostly by me. The harsh truth was that I broke another promise that I made post-second transplant rejection: Taking care of and safeguarding my kidney. Of course I knew all of this compulsive eating was senseless and harmful. How could I jeopardize my health and second kidney like this when I had fought so hard to live my life and was given my beautiful second chance at life? How could I break all these promises?

September 1997/14-Years-Old: My top weight of 185 pounds,

partly from Prednisone and mostly from me

When I went to see my nephrologist and he weighed me, I dreaded it and inhaled to suck in my stomach and appear as though the scale was hexed and that I was thinner than I really was.

“Mary, you need to lose weight and get yourself together. You are going to lose this kidney if you do not change your eating habits and let Prednisone take over your life,” My nephrologist said bluntly.

My Dad looked down ashamed and I turned red in the face.

“Is there a way to decrease the Prednisone dosage? Can I ever get off of it? It causes too many side effects: weight gain, moodswings, bone problems, acne…” I trailed off. The tears welled up in my eyes.

My nephrologist’s stern expression softened. He sat down slowly across from my Dad and me with his fingers laced together on his lap. When I saw that, I knew that he was going to go into his reasonable and factual doctor mode. He sighed and shook his head sadly. “I know the Prednisone causes nothing but all these side effects and other problems, but we can’t afford to put your second kidney transplant endanger again by lessening the dose right now. We can try to lessen the dosage in the future, but your Creatinine and other lab results or looking good now. I do not want to rock the boat. And, I hate to be the bearer of any bad news or anything, but the fact of the matter is that transplant recipients often have to take Prednisone for the rest of their lives.”

I did not say it to my nephrologist, but I thought to myself that there was no way in hell I was going to survive high school and certainly the rest of my life on Prednisone with everything it was doing to me. I could not understand this. Wasn’t my kidney transplant supposed to cure all my health problems, instead of causing new ones? Do not get me wrong. I was immensely thankful and felt extremely blessed that I was now healthy enough to live my life and do the things I could not do before my second kidney transplant, but I never imagined that all these other emotional, social, and physical side effects would happen all from these medications, causing me to not even know who the hell I was anymore.

My nephrologist took out his prescription pad and said methodically as he looked at my Dad rather than me: “Mary has to make every effort to lose the weight. Cut out the junk food. Exercise more. Whatever has to be done to lose the weight and take care of this kidney. I will make a recommendation to go to a dietician.”

I glared at him. I was a teenager and my nephrologist still treated me like I was a little girl by not talking to ME about MY own health and still directing anything about MY HEALTH to MY FATHER. My nephrologist ended the conversation with giving me a gentle, sympathetic, and sad expression my way. My responses were icy eyes and a pout playing on my lips.

I almost spat out: “Do you think I am stupid and do not know these things? Why does it have to be so easy to say and so difficult to do? Why does it always have to be an effort? Why can’t life just be easy?” Instead, I kept quiet and looked at the ground. All his words bounced around in my brain for a good amount of time. It was not as if I did not know what I had to do and it was not as though I did not think about losing weight nearly every single day of my life. It was not as if I did not know that Prednisone was an angel for my kidneys and devil for the rest of me. I knew all these things, but it frustrated and aggravated me to the absolute core that I now had to deal with new problems as a result of my immunosuppressant medications that I had no choice but to take in order to keep my kidney. I was winning my kidney, but losing myself all because of these stupid medications.

As I left my nephrologist’s office, there was nothing more to say. Now, it was clear to me that I had to take these medications for the rest of my life in order to keep this kidney. With that in my mind, the only option I had left was to find the willpower in me to lose the weight and overcome the side effects to these immunosuppressant medications. Most of all, I had to find a way to overcome my inner demons and prevent my worst enemy self possibly destroying my second kidney transplant. I now had to try to find out who I was underneath my chronic kidney failure and all these layers of fat and side effects that were slowly killing me and my second chance at life.

**denotes fake name to protect privacy of individual