Night Skies

And so my first semester at Southern Connecticut drew to a close. I inwardly breathed a shallow sigh of relief. My dissatisfaction seemed to mount as the days passed, as I couldn’t help but feel I was missing out somehow on the life I was ‘supposed’ to have. I felt I desperately needed to hurry up and get better so I could get back to living. This was messing up all of my plans.

My semester had begun abruptly in the fall, and I entered campus by sheer force of will and stubborn determination. I swallowed my pride as I stepped out of my car that late August day and walked to my first class, keenly aware of the bald spots on my head and my horribly swollen prednisone (moon) face. I hadn’t taken much time to get ready that day, as I already knew there wasn’t any amount of prepping that could bring my hair back or my bring face down. And so I swallowed my pride and took myself out of hiding. Those first few months were particularly grueling on my deconditioned body. I had trouble finding the energy and stamina to walk across campus. My legs felt rubbery to walk on which came as a surprise, feeling as if I was in someone else’s body. This ‘new’ body. This body that I had been left with. This was not my body. I had not ten months earlier been going for ten mile runs.  Not to mention playing competitive volleyball and weight training several nights per week. Now walking any distance had become an unbearable challenge. While I was glad to be able to walk again I hadn’t predicted it would be so hard. I began to eyeball benches across campus on that first day to rest on ‘just in case’. My muscles ached as I walked, and the end of the day was particularly challenging. I don’t think I ever did sit on one of those benches. I just couldn’t bring myself to let my body win another dreadful battle.

I remember feeling my face get warm as I passed a good looking guy on that first day. It didn’t take more than a few moments to realize that I was invisible. I kept walking, trying to distract my racing thoughts. All over campus couples were holding hands, guys flirting with girls and girls laughing with each other. I had never felt more alone. Or more different. Their happiness felt like an assault on my senses, as I didn’t want to think about how the rest of the world was moving on. I couldn’t think about others my age being happy. So instead, I threw myself into my studies and told myself it wouldn’t always be this hard.

It just couldn’t be.

My evenings were spent at home in the raggedly old raised ranch hid away in my room with my back leaned up against the cool faded pink wall where I was left with a pile of books and too many thoughts. Night after night I studied, pouring myself in my books. It was the one place where my mind was quiet, the one place where I could escape myself, even for a while. Sure, there wasn’t much joy found in studying microbiology, but there wasn’t any pain either.

And that felt safe to me.

Once the others had gone to bed I would often come and sit in the living room in the dark on the old floral sofa. I would sit and look out the large picture window. Some nights I would see a big bright moon staring back at me. Others only darkness. There was something very raw about seeing the dark night sky that I could relate to. It somehow calmed me while also bringing my pain to the surface. Tears soaked my cheeks many nights as I gazed out that window. I despised myself for my tears. I wished I could hold it together. I wished I could be stronger. What happened to the God I knew? Where was He now? If He really did love me like He said He did, why did He allow all of this? It pained me to feel so abandoned by a God I thought I knew, a God I had previously given my life to. Many times I prayed for help. Many times I prayed to hear from Him.

There was only silence.

Cellcept

Two days later I stood in front of the mirror in my room nervously holding the bottle of blue-green pills. My stomach turned as I considered what those next few weeks could hold. I knew the pills would dictate what my life would look like, and I hated that. I hated taking new medications. I hated the fear and dread that came with the unknown. I wanted to run far away from my own body. It was hard not to be fearful consuming a drug known to wipe out one’s immune system. I knew Cellcept had been used to treat organ transplant patients, and that sounded pretty serious to me. I knew side effects included possible nausea, vomiting, diarrhea, headaches and dizziness. I also knew my immune system would become compromised, leaving me susceptible to catching any and every illness in my vicinity. However, what truly frightened me was the knowledge that this medication would also put me at risk FOR cancer. I was at risk for lymphoma by simply taking the medication. I did not take this lightly. The risk was small. But it was there. I gazed in the mirror, looking myself over, staring at my own eyes and searching for strength. I knew there was no way around this, no matter what it looked like. My kidneys were in trouble, and there no going around that. Only right on through. And so I swallowed those first pills regretfully. But I got them down.  

It may sound strange, but I was relieved that I did not immediately die after taking those pills. I was weirdly proud though seemingly insignificant of having overcome another fear. And so came the nausea. On and off and on again. And with it came a sense of exhaustion that seemed to creep into my daily routine in a way I had not predicted. I was relieved however that the other symptoms I had so dreaded remained at bay.

And so it was back to living, as best as we could muster. I had been commuting to Southern Connecticut State University for the past semester. It had been a lot to handle, but I knew in my heart I was not ready to give up on my dream. I despised going to Southern. It was a shot to my pride, as I had previously been offered the chance to play college volleyball at Southern Connecticut as a high school senior. But I wanted to get away. I wanted to have an adventure. Commuting to school sounded awful to me, as I had so wanted to discover myself in a new place with new people. I remember feeling so misunderstood in high school. And I knew too many people from high school were going to be attending Southern. I had wanted something different.

Something different.

For a brief moment I recalled a prayer I had prayed more than once during my schooling in New York. It was during a time that I had felt very close to God and was praying regularly.  I had been annoyed by the “ring by spring” mentality of the conservative school I was at, with seemingly everybody getting married as soon as possible. While I deeply loved the people, I just couldn’t get past the idea of so many getting married at barely 21 years of age. And it wasn’t just my school. It seemed to span across the entire Christian community. Didn’t anybody want to accomplish things?

I thought about my time with Dr. White in Kenya and all the doctors and nurses working at Tenwek Hospital. Such good was being done. From the woman who underwent an arm amputation because of a gangrenous infection, to the man who had been shunned for years in his home and was able to finally undergo tumor debulking surgery, to the man with an arrow removed from his head, to the woman recovering from being stabbed with a sword by her husband, to the many undergoing upper endoscopies for esophageal cancer screening and treatment; so so much good with seemingly countless stories. There were scary parts too. I had inadvertently learned of two women (a resident and a nurse) working at the hospital who had traveled off the compound to do a prevention clinic two weeks before I arrived and had been raped. During my time in Kenya the American Embassy was shut down due to bomb threats. There was a lot of danger too, which made the intentional sacrifice of those that worked in the hospital all the more amazing. I couldn’t help but hope a position like that was in the cards for me. Such raw generosity and courage to be able to live that kind of life. I only hoped to be that brave. I knew there were doctors all over the world making change and helping spread love. I wanted that for my life even more than I had wanted a family. I wanted to do something big.

With my growing annoyance I had asked God to give me something different. To not let my life be “normal”. I told him I didn’t just want to do the traditional settle down and have kids. I wanted a challenge. I wanted to do something different for him.

Something different.

I dismissed the thought immediately. Clearly God had gotten the memo all wrong.

Chemotherapy

It had been ten days since the kidney biopsy, but it may as well have been one hundred. As relieved as I had been to conquer my fear of enduring the kidney biopsy and subsequent admission to the hospital, a brooding sense of unrest came over me. I was oddly proud of myself, though seemingly insignificant, for getting through what I had so previously feared. It was our last resort. I had repeatedly done my best to persuade Dr. Arnold out of the need for the biopsy. That seemed too severe. I was so young. I was only just 21 years old. I wasn’t convinced I even needed such an invasive procedure. After all, the prednisone had seemed to help. I could walk again, move my joints fluidly and even exercise. But my body had other plans. My urine had continued to reveal protein and red blood cells. And so here we were, in the same solemn waiting room we had sat so many times before. I glanced at the pile of looked over magazines and noted an elderly woman with a cane and chalky red lipstick sitting directly across from us. Her eyes looked past us, and her thoughts were clearly somewhere else. Out of the corner of my eye I noted a small black portable radio faintly playing easy listening music. No one seemed to enjoy music in the waiting room. A large older man across the room with thick dark sunglasses sat with his head down. I began to wonder if the music in the waiting room ever helped patients to relax as the studies had claimed. It just added to my sense of unrest and growing annoyance at the whole situation. It distracted me from concentrating on the moments ahead. I scrambled to get my thoughts together and heard a petite brunette woman call my name. We quickly followed her and her turquoise scrubs into the exam room. We didn’t say much as she shut the door behind us and started to take my vital signs. The sound of the blood pressure cuff coming off was searing, and I felt my stomach begin to churn. I hated how the small exam rooms made noises sound so severe. Maybe it was the thin walls. Maybe it was lack of furniture against the walls. Maybe it was me.

Dr. Arnold entered the room moments later with papers in her hand. I knew those papers told the story of what my biopsy had revealed. I studied her face carefully for any clues. She sat down on her stool and looked at me with her big blue eyes and told me it was as we had presumed. The lupus had gone after my kidneys. I had what was called glomerulonephritis. There were six stages of this type of kidney inflammation. I was a stage 4, which was the most common and also the most dangerous. This meant lesions on over 50 percent of my kidneys. I was sick to hear this and almost in disbelief. I recalled my reading on that dreadful purple page and that patients with kidney involvement may go on to require dialysis and even kidney transplantation. What was happening to me? How could I not feel that occurring? It felt like a sick joke. She went on to say this required treatment. Aggressive treatment. There were several options. These options were ALL immunosuppressive medications commonly called chemotherapy.

How was this happening? I didn’t have cancer. Only cancer patients need chemotherapy! The sick joke continued.

I questioned how I could possibly require MORE medication? I had barely come to terms with the prednisone and all of its side effects. Or the Plaquenil that I had needed to take twice per day. Now to add on to this instead of subtracting from this seemed so unfair and only further solidified my fear that I was in fact not going to get better.

Dr. Arnold explained that the medications would work to knock out my immune system which had been in overdrive for nearly a year, ravaging my entire body. The prednisone had helped but the chemotherapy was needed to give it another good punch. By killing off the immune system the medication would help to also kill off the cells that were attacking my kidneys. I swallowed hard.

There were two options. Cytoxan or Cellcept. I was not anxious to learn about either, but she continued. She felt Cytoxan may not be the best decision for me, while aggressive, has been shown to cause sterility and may leave me unable to have children down the line. Instead she felt Cellcept would be a good choice, as an immunosuppressive it had been shown especially promising in patients with kidney involvement. I agreed. I knew I wanted a family someday. Although I didn’t know if that day would ever come. In fact it was looking more and more unlikely.

What would this chemo look like? Would the Cellcept make me lose my hair? I had only just started to regrow my hair that had previously left me with bald spots. Would I spend my days battling nausea and vomiting? I sighed deep, agreeing to give the medication a try, inwardly desperate for escape.

Kidneys

March 12, 2014

Four short days later I stubbornly faced my fear head on and underwent a kidney biopsy. I was awake for the procedure, though I wrestled in my mind if I would have preferred to have been asleep, as both options completely terrified me. As I lied on the cool table covered in royal blue cloths, I felt a cool liquid sweep across my side. I knew I was being prepped. I could smell the Betadine. I looked to my left and noted several large needles filled with medicine. I watched as Dr. Hansson selected one at a time. I knew these were to help dull the pain. I felt the large needle slowly enter my side. I didn’t budge. I was more concerned with what she would find. I hoped she would pick a good spot, a spot perhaps where my kidneys were properly functioning. I hoped she would see that she was wrong, and all was well. I didn’t feel like my kidneys weren’t working. I knew she was wrong. I knew Dr. Arnold was wrong. At least I tried to tell myself they were. Though, the growing number of doctors in agreement seemed to be mounting which did not bode well for my security.

I suddenly heard what sounded like a hole puncher being punched and simultaneously felt a jolt in my side. I knew she had gone in for the biopsy. I watched as she placed a pink chunk into a small fluid filled container. I knew that was part of my kidney. My flank felt cool. I figured it was blood. I was admitted to the hospital for the night for “observation”, given the risk of severe bleeding following the biopsy. I hoped I would clot soon. I hoped I wasn’t bleeding too much.

I did my best not to move. Unfortunately upon arrival to the unit we learned the only available bed was “broken”. Its only position was 180 degrees flat. I found myself irritated as my mom feverishly tried to prop the two pillows we had been given into a position to help me sit somewhat upright. By that time the numbing medication had started to wear off, and my side had begun to ache. I lifted the cover of my breakfast tray to distract my mounting crankiness. The eggs were cold. I took in a deep breath and told myself I only had to get through this one day and then I could go home.

A few moments later a male nurse with grey scrubs and tattoos covering his left arm entered my room with a smile. He informed me that if I needed to use the bathroom I would need to use a bedpan and to ring for help. I heard a faint mumble and peaked behind the curtain to the other half of my room. I noted an elderly woman making noises to herself. My stomach turned as I realized I was not alone in the room. I stiffened at the thought of using a bedpan.

A few hours passed and I began to smell a foul smell coming from the other side of the room. I knew the elderly woman had soiled herself. The odor permeated my nose and I turned myself in bed to face away. We waited for a nurse to come. It felt like hours. I became angry, noting my own sense to urinate. I slowly made my way out of bed and to the bathroom. I refused to use the bedpan. After all, I had not undergone surgery. It was a biopsy. I felt it would be fine. My mom glared at me from the foot of the bed in disapproval. I needed to move. I made my way to the bathroom and back with great caution. It felt good to move. It felt good to take control. Even if it was just over my ability to urinate on my own terms. I sat back in bed and took a deep breath in, feeling a small amount of stress fade away.

The following morning I opened my eyes to see Dr.  Hansson sitting at the foot of my bed. I was surprised to see her and didn’t think I would see her again until we had scheduled a follow up in her office. I liked that she sat on the bed with me. It made me feel safe. It made me feel like I could trust her. She wore her purse across her chest as she always had and I felt myself inwardly smile. She told me we would have to wait for the pathology results of the biopsy to return over the next week. It didn’t surprise us. She told me we could go home.

Over the next week we did our best not to focus on the impending news. I found myself still trying to “will” my kidneys to work, as ridiculous as I knew it was. I couldn’t help but hope.

RED BLOOD CELLS

Three days later we pulled into a darkly shaded parking lot under the entrance for a large brown office building where we would meet the nephrologist. We circled around a few times, waiting to find a spot. Being in the city of New Haven, I knew it would take a while. I knew it would be difficult. I breathed in deep, enjoying the air conditioning that softly bristled against my bare legs. We finally found a car backing out of a nearby spot and pulled in. I waited impatiently as my mom backed her car up, only to pull it in again, adjusting the oversized tan Buick ‘just right’. She was famous for backing in and out a few times before getting out of the car. That just seemed like too much effort to me. I opened the car door inhaling the muggy summer air that felt heavy on my lungs and began to look for a sign that would tell us where to go. We made our way down a grey hallway and entered an old wooden elevator. Its doors creaked open as we got on. We made our way up to the fourth floor toward a blue sign that read “Metabolism Associates”. I thought that was a strange name for a nephrology office. It sounded more like a weight loss clinic to me. I wondered what kind of patients would be on the other side of that door. I tried to envision what I might encounter in hopes of preparing myself, but my mind felt empty. We entered the waiting room, as we had so many others. I immediately noticed the aged brown carpet covering the floors and yellowish lighting that shown down over several rows of tan chairs. I caught a glimpse of a solemn African American male with a large protruding abdomen and dry skin sitting against the wall. I then saw an older Caucasian male with frail arms and legs and sunken in eyelids look up at us from across the room. I was disheartened to see another waiting room, another room full of ‘old’ people. And me.

I looked out the large picture window and wondered how I would fit in this world. Everything seemed to be telling me I was different. Everywhere we went I was reminded. I wondered what my friends from New York were doing. I quietly sighed.

Five minutes later a door opened and a tall woman in royal purple scrubs called my name. We quickly got up and followed her down a long narrow hall with many rooms. I noted a large microscope hanging off the wall at the end of the hall. I watched as an Indian woman with a white coat and a focused gaze walked by. We entered the last room on the left and I shivered, hearing the white paper crinkle as I sat down on the exam table. I was immediately asked to take a small cup into the room across the hall and leave a urine sample. I did my best to fill the cup, wiping off the sides carefully and pretending I hadn’t just gotten it everywhere. I was sure I wasn’t the only one to play this game. I neatly placed my sample with the others in the silver box on the wall. I carefully washed my hands and met my own eyes in the mirror. I rolled my eyes, annoyed by what I saw. I heard myself take a deep breath as I opened the door, making my way across the hall. For a moment I stopped, secretly hoping my sample wouldn’t show anything. I hoped Dr. Arnold was wrong. I hoped there would be no red blood cells found. At that moment I tried to “will” my kidneys to work. I knew it didn’t make sense. But I also couldn’t help but secretly hope that maybe they were wrong. And that just maybe everything would be okay.

A few moments later a middle aged woman with unkempt brown hair and glasses dressed in an oversized black shirt and black pants walked in. She introduced herself with an excited smile, telling me her name was “Joni Hansson”. I knew she was the doctor but she didn’t look like one to me. I noticed a small leather strap draped across her chest from her right shoulder to her left hip which supported her small leather bag. I wondered if she had forgotten to take her purse off.  Maybe she was rushed that morning? I hoped she wouldn’t forget other things. Other important things. I thought about telling her she was still wearing her purse. Instead I decided to pretend not to notice.

She began to tell me she had viewed my urine sample under a microscope and had seen red blood cells in my urine. She went on to say this was concerning for damage to my kidneys. I had trouble believing her. Although she confirmed Dr. Arnold’s findings, I hadn’t seen any blood. I had no lower abdominal pain. I had no flank pain. How was this possible? She went on to say that I needed a kidney biopsy. She went further, telling me she needed to assess my kidneys and determine what level of damage had occurred due to the lupus.

I swallowed hard. A wave of fear came over me, as I pictured her taking a chunk of my kidney out for sampling. How far down would she have to go? Would I be awake for this? I knew more pain was in my future. I hated that. I hated the unexpected surprise. Could we just skip this part? I hated that that we couldn’t. I hated knowing this was another something I would have to get through. I had done my share of reading on that dreadful purple page. I knew there were many lupus patients who had kidney involvement. I knew there were many lupus patients who went into kidney failure. I knew many required dialysis. I pictured my kidneys for a moment and wondered what they were doing. I wondered what was happening with this body that I couldn’t  trust. This body that had so betrayed me over the past months. This body that I had been left with.

Good Intentions

Later that evening I heard the screen door slam and familiar footsteps coming up the stairs. I peered my eyes around the corner and saw the familiar smile of my dad. I looked forward to seeing him come home each night these past months. His familiar smell somehow brought my tired heart comfort and also reinforced that I had made it through another day. Covered in sawdust from a day’s work, he held a yellow card in his hand. The moment I saw it, I knew it was for me. I couldn’t help but feel special. I hadn’t even opened it. It was just nice to feel loved.

I turned my head his way as he walked toward the couch and he handed me the card smiling.

I opened the yellow envelope, noting a pink and white card that read:

Things people say to cheer you up:

 “Look on the bright side.”

“Things could be worse.”

“Hey, it’s not so bad.”

I turned to read the inside:

Things you can say back to them:

“Shut up!”

“Shut up!”

“Shut up!!”

I immediately grinned, feeling relieved for the reminder that he understood. Knowing he got how I was feeling. And that those words were really all anyone wants to say to someone trying to ‘fix’ things. We had had our share of ‘things people say’ over the past months. Things that well meaning people say. I recalled the past week getting an unexpected visit from an older woman from the church. She had taught a few classes of mine growing up and we had known her for years, mostly in large group settings. I knew she loved my parents and with that followed my sister and I. I also remembered her terrible temper during Sunday school classes as a child. I peered out the window and saw her large maroon car driving in. I quickly called out to my mom, asking her what she was doing here. My mom scurried down the hall, flashing me a glare, telling me to ‘behave’ with her eyes in a way that only mothers can do. Seconds later I listened, hearing my mom answer the door in what we often called her ‘phone voice’, the high pitched soft voice that mothers often turn on when in public, despite the craze that may have occurred only seconds prior. I listened, hearing steps approaching down the hall, and I embraced the awkwardness I felt as I watched her short stocky frame draped in a denim jumper sit down in the white wicker chair in my room next to my bed. I looked into her full rosacea covered cheeks and watched quietly as she began to roll up her sleeves. She asked me how I was doing and I gave her the short version of recent findings. Oddly, she then began to point out large scaly lesions to her legs, measuring a few inches in diameter. I felt them glaring at me in an odd private ‘show and tell’. My stomach turned. She pointed out more on her arms. I wondered what they were and she began to tell me it was her psoriasis. She began to tell me how hard it had been for her to cope with the lesions over the past few years. I knew I should feel compassion. I knew I should try and empathize. I did my best to smile and nod. I did my best to say the right things. But inside I felt myself growing annoyed. Why was she showing me this? I didn’t have psoriasis. I didn’t even have a rash! I knew she was just trying to help. I knew I shouldn’t think those thoughts, but I felt my body harden. I had only turned 21. How were we similar? I half figured illness came with the turf for people in her age bracket. She had already lived a healthy life. She had already had a family. She already had grandchildren for goodness sakes! No, we were not the same. I wondered if I was now going to be a magnet for others, with any illness or infirmity, to come and show me their ‘battle wounds’. I didn’t want to hear it. I could barely acknowledge my own. And I certainly didn’t want to see it!

She left that day and I watched from my window as her maroon car slowly hobbled over the stony driveway. My mom tried to tell me she was only trying to help. She tried to tell me it was her way of caring. I knew that.

But I wasn’t ready to hear it.

Two days passed and for the first time in months I felt well enough to go to church. The church where I had grown up. The church where I had known so much love. I recalled my years of attending school in the two room field house. I recalled the seven of us in total learning about math, science, history, English and Spanish. I recalled us learning about each other, learning about life. And facing the very awkward junior high years together. I remembered driving in with my dad each morning down the long windy driveway to the church, my sister and I packed in his blue pickup truck, which was usually speckled in sawdust and old coffee cups. I used to love those drives. I recalled the past months and all the flowers from various friends from church that had filled my solemn room. Multiple bouquets poured in. We had no where to put them all. They came, and they came for months. They spilled out of my room into the living room and dining room. All the cards with well wishes that had come. Never had I felt so loved. And so, I decided it was time to return.

I anxiously entered the foyer of the church that day, all too aware of my face that had so rounded. I remembered the bald spots on my now apparent scalp, and I fought back waves of shame. I hoped others wouldn’t notice. I hoped it wouldn’t be a big deal. I needed for it all not to be a big deal. I needed some kind of normal. I needed to pretend I was normal, even just for a little. I swallowed hard and entered the sanctuary, as I had so many times before. I was greeted by many familiar and smiling faces which helped calm my nerves. I just wanted to get to my seat. If I could get to my seat I felt I would be safe, perhaps hidden in the crowd. I sat next to my mom that day and tried not to look around too much. I felt myself on edge and tried to tell myself to calm down. We sang a few songs and I saw others look my way. Several women approached me as the church sang, giving me long extended hugs. I felt awkward, knowing I wasn’t hidden. During the announcements the pastor welcomed me publicly to the service, as he had offered many public prayers for my health over the past months. I knew many were concerned, but I couldn’t relax. I sat tensely in my seat throughout the service, hoping it would soon end. At the end of the service I was approached by a woman who told me that “God was going to heal me”. She was convinced of this, as I saw the intensity behind her eyes. She told me she was going to continue praying for healing. My underarms started to sweat and I felt my stomach churn. I had had no sense of this. More, I was just finally attempting to come to terms with accepting what was before me, and that had been hard enough. It frustrated me that she could so easily approach me and tell me it would ‘all go away’. How did she know? In my heart, I knew it wouldn’t. In my heart I knew my road had just begun. I breathed in deep and a few moments later I was approached by another woman who told me I would “have a great testimony from this” and that “God was going to use this”. I felt myself growing more annoyed. Why was she using Christian clichés on me? Why was she trying to interpret my life for me? I hadn’t asked any questions. More, this was not even coming from a close friend. I think that annoyed me the most. I left the church that day feeling defeated, feeling like the broken girl that others wanted to ‘help’. But I didn’t want help. I just wanted some part of my life to be normal.

Later that afternoon I sat on the screened in back porch with my parents, eating our Sunday brunch. I listened, hearing the wind gently blow through the trees and felt a warm breeze brush past my face. I looked down at my plate of freshly made scrambled eggs, sausage, toast and melon. The smell of sausage and eggs wafted up to my nose, but I wasn’t hungry. My heart was still heavy from that morning. I pushed my glass of orange juice away, feeling my stomach in knots. I began telling my parents what had happened and what was said. My dad had been playing the guitar at church that day and noted all of it from the podium. I watched as my mom’s ears listened intently, and she began to tell me that “people were just trying to help”. I saw her frustration with me grow, as I told her that “It didn’t!”. I told her I only felt worse. I told her I didn’t want to go back. She couldn’t understand. I could tell by the look in her face. I knew I disappointed her. I knew she thought I was being unreasonable. I knew she thought that anything said with ‘good intention’ should be regarded as ‘nice’. I strongly disagreed. Sometimes, things said with ‘good intention’ were just not nice at all. Sometimes they were hurtful.  I looked over to my dad who didn’t say a whole lot. He told me he saw different people approach me. His brown eyes looked at me and said he couldn’t blame me for the way I felt. I felt myself finally exhale. So I wasn’t crazy? It wasn’t me? Nonetheless, I knew these were the people and the church we had poured our lives into. I knew I couldn’t give up. Not just yet.

We hoped with time things would settle down and I would learn a ‘new normal’ in the place that I had known so much love. So I decided to give it another chance. The following Wednesday I entered the week night service, knowing there would be far less attendees, secretly hoping that would make all the difference. I entered the foyer a second time that week, nervous and uncomfortable, but wanting to push through. There weren’t as many looks during the songs which brought some relief, but moments after the service ended a shorter middle -aged man with brown hair approached me. He began to tell me about pain he had been having in his right shoulder. I watched as he grabbed his short arm and began to twist his shoulder in circles, telling me of the pain that “kept him up at night”.  I wasn’t sure what to say, so I smiled politely and tried to end the conversation as soon as possible. I felt embarrassed. Why was he telling me this? I wasn’t having shoulder problems. I knew my fear of becoming a magnet for others to ‘show and tell’ their infirmities was coming true.

A few others approached me, asking me how I was feeling. I knew they were just trying to care. I also knew I was just tired of talking about it. I left that night feeling uneasy. Feeling the church home I had once known and loved was somehow different. Maybe I was different. I wasn’t proud of how I felt. But I also couldn’t help it. I told myself I was done with being a spectacle. I was done with being someone for people to ‘help’. Maybe once I got back to looking ‘normal’ things would be better. I didn’t know if I would ever look normal again. And with that, I decidedly informed my parents that I wasn’t going back.

And I didn’t.

Not for a very very long time.

Sweaty Palms and Air Conditioning

Two days later I sat on the cool exam room table of Dr. Arnold’s office. I looked down at my legs, in jean shorts now covered in goose bumps. I wished I had brought a sweater. I couldn’t wait to get back outside to the muggy humid air I had moments earlier ran from. I couldn’t wait to be any place but here. Seconds later Dr. Arnold entered with a warm smile. She sat down on the small stool next to the exam table and crossed her legs under her long conservative blue dress. She began to tell me she felt the lupus “may not be calming down as we had hoped”. I was confused by this. I was taking all of my medications, as much as I despised them. I had nearly given up on my appearance as a result. How could they ‘not be working’? And what did that all mean? She went on to say that she had noted some red blood cells in my urine and was concerned about my kidneys. My kidneys? I had never seen any abnormalities in my urine. No blood. Nothing. I had no pain on my sides to suggest kidney pain. I was sure she was wrong. I thought I had lupus, not kidney disease. I already got my ‘diagnosis’. There wasn’t supposed to be more. That was not allowed! I hated that there was more. She went on to say that she wanted me to see a nephrologist. She went further to say I may need to have a kidney biopsy.

At that moment the room never felt colder and at the same time I became increasingly aware of my now sweaty underarms. I took my cold clammy hands and forcefully stuffed them into my jean shorts, walking into the waiting room feeling defeated. I glanced at the now frayed brow of my mom and knew she too was concerned. She didn’t say much. She didn’t have to.

My mom had always taken the reverential approach with her doctors. She was the type of patient that doctors dreamed of having, never stepping out of bounds, never questioning judgments. She was respectful and nervous around them. She sometimes even forgot what questions she came to ask. She profusely thanked them at the end of each visit, no matter how little or much was accomplished. I knew she saw their advice as coming from an almost divine source. That was a bit too extreme for me. I figured maybe it was a generational thing. I figured maybe I had just seen too many doctors. I knew she became angered at the near mention of me stepping outside the box from what I was told. I saw this at the mention of me going to the gym. I knew I scared her. I also knew I had to find my own way, and living inside the bounds of what everyone else was going to tell me ‘I was allowed to do’ for the rest of my life because I was in some way ‘disabled’ was not an option. I felt suffocated. And to me, exercising, even at a very minimum, was my way of fighting back. My way of telling my body it hadn’t won. My way of reminding myself I was still in there.

We sat in the car driving home that day, our thoughts to ourselves, as had become our norm following these visits. I recalled the piece of good news from Dr. Arnold who had told me she was “proud of me” for my efforts to exercise and that it may in fact “help the lupus”. I had hoped my mom was listening. I knew she was. I knew she just wanted it all to be okay for her girl.

Curly Locks and Classes

The next few weeks were filled thoughts of picking out classes and buying books. I enrolled in several classes including microbiology and calculus II. My mind was busy with thoughts of getting back in the game. I hoped I could handle it as I once had. I wasn’t sure. I wasn’t sure I could take the pressure. I recalled being in my junior year, the year to prepare for the MCAT, the entrance exam for admission to medical school. I wasn’t sure how it would all fit together. I could see the pieces floating in my mind. I was just happy to be thinking of my goal again.

The following day I woke up and snuck into my parents’ bathroom as I had so many times before. I grabbed my mom’s soft yellow round brush and began brushing my curly hair. Moments later something peculiar happened. A large chunk of hair came out in the brush. This startled me, as I had never seen anything like it. My eyes widened and I wondered if what I saw was true. I felt my heart sink to my stomach. I ran to my mom and told her what had happened. She assured me it was a ‘one time’ occurrence. She told me it was probably from wearing my hair up too much and that I should put my mind off it.

And so I did. Or at least I tried.

The next day in the shower I noticed more hair coming out. Not a few strands. I watched as chunks of my hair filled the drain. My heart raced and my mind was brought to a panic as I saw my locks leaving my body. I pictured myself with a bald head. This wasn’t fair. I didn’t have cancer. Why was my hair coming out? I was rational enough to know my head was too big to ever pull off a sheik bald look. Then I recalled my face. My face was still so swollen. How could my hair be coming out too? This was not happening!

But it was happening. And it continued to happen. As much as I willed it not to.

I watched over the next days as my pale scalp became more and more apparent. Bald spots came in as we watched my strawberry blonde locks come out. My once full head of hair became so thin I could no longer pull it into a ponytail. Over the next week I lost 90 percent of my hair. I saw it on my pillows. I found it on my sheets. I picked it off my shirts. I feared even getting in the shower. There was nothing I could do to slow down the progression. And I hated that. I hated it with every fiber in me. There was no hairstyle I could find that would cover the balding scalp that now shone so ruthlessly. My swollen face never looked larger. And my self esteem was at an all time low.

I wondered how in the world I would face a new school like this? How would I walk the halls of a new school among the jocks and pretty girls? I dreaded seeing young couples holding hands. I dreaded hearing laughter. How would I ever make new friends? How would I ever look a cute guy in the eye again? I couldn’t even look myself in the eyes. How would I survive this? More, I wondered what was happening to me? Was there something else they were missing?

Stepping Point

Days passed and with it came more steroids and more side effects. I had resigned myself to chronically feeling unattractive. No longer did I plan my outfits. No longer did I spend time primping and fussing over lip gloss or hair spray as I once had. I did only the very basics. In fact, I had thrown a towel over the mirror in my room. I didn’t want to remember my face that had so rounded. I didn’t want to remember my growing double chin. I could feel them. My hands to my cheeks mocked me with every touch of my face. I could feel my puffy face with each turn of my head. I could feel the deposits of fat with every turn of my neck. So I covered my mirrors in hopes of covering me in the process.

I secretly hoped I would wake up from this very bad dream.

Still, there remained a small part of me that wasn’t completely ready to give in.

 A very small part.

A part of me that wasn’t ready to throw a towel over my life. I found myself still wanting to push.

And so, for the first time in nine months, I brought myself to the gym. It wasn’t the gym where I typically worked out. No, I would have rather died than be seen in that place. The place full of new state of the art equipment, laced with hard tan bodies and straight blonde hair. The place full of guys looking at girls. The place where girls ‘get ready’ to go to the gym. The place where girls wear push up bras to ‘work out’ instead of sports bras. The smoothie bar. The spinning room. The perfume. The cologne. No, I knew I would never feel okay with any of that. Instead, I racked my mind for a place where I could just blend in, or better yet, not be noticed at all. Without all the fuss.

So, I drove myself to the next town over. I would have driven to the next state over if I thought it would have helped. I half heartedly enrolled myself in a membership to the local YMCA. An elderly woman with short hair and a deep voice greeted me sternly at the door. I heard children shouting from the nearby pool. I had always hated the Y. I hated the smell of chlorine and dead air that permeated the entire facility. I hated the old used equipment and sight of old men in short shorts. I hated the dark rooms and poor lighting. I felt a knot in my stomach as the stern woman looked at me. But I wanted to push. And this is where I was going to do it. And so, I made my way down the old stairs and found myself getting on the elliptical, which to my dismay faced a very large floor length mirror. I darted a glare at my reflection in the mirror across the room and a wave of motivation passed through me. I began moving my legs forward on the machine, one at a time, not aware of what my body could handle. That first day, I lasted ten minutes. I was wiped, having only done ten minutes with a few stretches that were once so easy. I came back the next day. And the next. Slowly ten minutes turned into fifteen and fifteen into twenty. I found myself pushing to fourty five minutes and then started adding in the stationary bike and even the treadmill. I began incorporating some weight machines into my regimen, excited to see the progress I was making. My body hadn’t changed at all in appearance. I still avoided all mirrors. But it felt good to do something. Anything to prove that I hadn’t given up.

Anything to prove that my body hadn’t won. I hadn’t died. I was still in there.

And so with my new found drive, I found myself curiously getting back thinking about the future. For the first time in as long as I could remember, I allowed myself to think about the road ahead. I even noticed a little glimmer of hope begin to emerge which surprised me. I remembered the road behind. I remembered the discipline. I remembered the sacrifice. I remembered the countless late night hours of studying. I remembered staying in when others were going out. I remember turning down friends to push through general biology. I remembered roommates going on dates while I went to the library. I remembered the grueling physics. I remembered the organic chem. The calculus. I remembered all of it. And I knew I had come too far and given up too much to give in now. So with my newly rekindled drive, I filed an application for the fall semester at a local state school called Southern Connecticut State University. I was accepted two days later. I knew I would get in. I knew based on others who had attended. I knew based on the admission application itself which was minimal and asked questions such as “have you ever committed a felony?”. This of course provided me no assurance for a good education. But I knew it was a stepping point. I knew this was my chance. If I was ever going to take one.

Side Effects and Constants

The next week brought with it increased nervous energy and more prednisone. I recalled reading about side effects of the medication, but like most drugs, I figured I would acquire practically none of them. I was quickly proven wrong. The days that followed I began to note extreme nervous energy, feeling as if I had consumed five cups of coffee round the clock. With that came a motivation to move, which manifested in odd need to clean. Anything and everything. While my mom worked driving school buses, I found myself organizing, dusting and polishing her closet. I reorganized her entire wardrobe by color and size. I scrubbed bathroom floors and vacuumed every room. I cleaned with such intensity. I don’t think the old raised ranch ever shone so brightly. I feverishly placed all of my efforts into daily projects. Anything to keep my mind off of reality. Anything to keep at bay the feeling I would soon crawl out of my own skin.

With the increased nervous energy came other, less productive and certainly less desirable side effects. I began to notice my weight increase. At first, I didn’t so much mind. At first. My abdomen began to fill back in and I could no longer see my protruding ribs. My thighs began to again resemble legs rather than arms. My jeans were no longer loose, and my shirts began to feel like they were mine again. But my body was different. My once toned abs and arms were gone. The years of training in volleyball had vanished in only a few months. I was no longer fit. And I knew it. I was frustrated, having a large portion of my self esteem once placed in my ability for athletics. I would enter volleyball tournaments, play any pick up games I could find, anything to be competitive. I spent hours at the gym weight training and getting stronger. I pushed myself and then pushed some more. I prided myself on my ability to push past any physical pain in an effort to achieve a goal. And now, I looked down at my barely 21 year old body, barely recognizing it. It didn’t feel the same, and it certainly didn’t look the same. Each movement I took felt like I was in someone else’s body, moving someone else’s knees and flexing someone else’s hands. I often found myself looking down and watching my joints move, feeling I had to ‘relearn’ my new body, which ultimately felt nothing like a new body. I felt someone had swiped my once athletic build for the build of a tired 75 year old lady. No, I wasn’t familiar with this body. And I didn’t trust it.

Days passed and I noticed my face begin to swell. I knew it was the prednisone. All too soon the ‘deposits of fat’ that I had read about on that dreadful purple page had become my reality. My neck, abdomen and face began to swell at a rapid rate. And they continued to do so. My face changed, as my cheeks filled in and for the first time in my life, the girl ‘too skinny and too tall’ developed a double chin. I was horrified and angered by this. In disbelief, I placed the palms of my hands to my cheeks, feeling how they had grown. My jaw bone was no longer palpable and my face had rounded to the point where I could see my cheeks puffing out by simply looking down. I could feel the deposits also on the back of my neck, creating a less than attractive ‘hump’. I was devastated, feeling there must be something, anything I could do to make this stop. I had finally resigned myself to taking medications, and now it was not so much my disease, but my medications that were giving me problems! This was unacceptable.

I knew I looked different. I had become squeamish at the sight of my own reflection in the mirror. I began avoiding even making eye contact in the mirror in an effort to try and forget my appearance. But I could feel it. I knew my looks were rapidly changing and certainly not for the better. There did however, still remain a small part of me that hoped ‘it was in my head’. That what I saw somehow was not what others would see. That maybe I was being too much of a ‘girl’ about things. My mom tried desperately to reassure me that I was beautiful and that ‘it didn’t matter’.

But to me, it did matter. It mattered too much perhaps.

That afternoon I heard a familiar laugh coming up the stairs. I lied in my bed and knew someone had come to see me. I heard my mom tell the familiar guest that I was in my room. I paused a few moments and looked to my doorway to see the smiling face bordered in soft blonde hair of my friend Rachel. She had been a constant for me these past months, more than I could have imagined. I was surprised to see how few friends actually remained constants. It’s easy to feel loved and ‘popular’ when things are easy. I learned quickly that things are not always as they seem, and the pack quickly thins with change. Most of my ‘friends’ had quickly faded into my memories, and I resigned myself to letting them move on with their own lives. I couldn’t blame them. A lot of them were still in New York, a full eight hours away. And more, I was the one who had changed. I was reminded of that by the cards they had once sent and things they talked about. The trivial drama around campus to me was no longer relevant. But I was happy for my constant friend. I recalled her spending hours with me these past months, simply lying on the floor in my room without a complaint while I lied in my bed. We talked for hours about anything and everything from college to crushes to our fears and our plans. The sicker I got, the more she came. She even began bringing me presents. Scented lotions, bath gels, back massagers. Anything she could think of to help alleviate some of the pain. I was surprised to see how my physical pain affected her. I could see it all over her face. I never did use the lotions. But it was nice to feel loved by my friend.

Some time had passed, and I braced myself for what I feared would come. That day she entered to door frame to my room. I saw her blue eyes take one wide look at me in bed and instantly hit the floor. I knew she was startled by my changing appearance. I was startled by my changing appearance. To my horror, her look confirmed my fears. I wasn’t being a ‘girl’ about things at all. No, things were as they seemed. And things were out of control. A wave of shame washed over me and a strong urge to curl under my covers pressed on my mind. I knew I shouldn’t feel that way which brought only more feelings of guilt and shame. She quickly smiled and busily started talking about something light. Ignoring her efforts to change the subject, I blurted out in horror, ‘look at my face’. We were both stunned. I was no longer the girl ‘too skinny and too tall’. I had no control over how I felt. I knew that. I had no control over my pain. I knew that too, having only just come to terms with my ‘new’ body. But now, to not be able to control how I looked? I was in my 20’s. How was this happening? Would I ever be seen as pretty?

For a while I considered not eating in an effort to curb any more weight gain. I wondered if I skipped meals if my face would go down. Those efforts were faced head on with a fierce increase in appetite, another side effect of the prednisone. I played over in my mind Dr. Arnold’s words that most her patients “gain a minimum of 60 pounds” on the dosage I had been on. I believed her, recalling how I no longer felt ‘full’. I recalled the sad looks from the receptionists in her office. I remembered the goldfish I had hid under my bed. My weight had returned to what it once was and while I certainly hadn’t gained near what the typical patient had gained, I was no less devastated by the ravaging effects of the prednisone on my appearance.

With the prednisone also came intense mood swings. The tears came. And they came a lot. I spent hours in my room with my knees curled to my white wicker chair, crying. I wasn’t always even sure why. I grieved for the life I once had. I grieved for the dreams that had now gone. I grieved for the body I was left with. My mom desperately tried to cheer me.

I was inconsolable.

Ready

Over the next few weeks, we enjoyed a time of restorative relief. I had begun moving again. But it was not in the same way I once had. I was more aware of my joints than I had been in the past. They didn’t feel the way they once had. I was aware of my wasted muscles due to weight loss. I was aware of my knees that felt weak and fluid filled. But still, I was happy for a break from the pain.

My appetite had also returned which brought great relief to my Italian mother’s tired heart. She began enthusiastically making trips to the grocery store, returning to show me all of the ‘goodies’ she had purchased. She pulled out chocolate donuts, ice cream and strawberries from the grocery bags, presenting them to me with a huge grin. I smiled, pretending to be excited and feeling lucky to have a mom like her to care for me. Over the next few weeks she eagerly began making all of my favorite dishes, from baked ziti with Italian bread and salad to chicken fajitas with salsa and sour cream. I knew it was her way of taking care of me. I knew she had been so desperate to do something, anything to help these past months. I knew she just loved her girl. And so she continued. Each morning she came home from work on her break and quickly scurried about the kitchen making me eggs, toast and a fruit cup. It was nice to eat again. I had forgotten that one could even enjoy eating, as it had been such an unbearable chore over the past months.

Two weeks passed and my relief was soon replaced with new feelings of unease and a new unwanted understanding of my disease. I had avoided reading about lupus at all cost. I was not about to go online and learn about it. I had refused to look into any support groups for lupus. And I was certainly not about to buy a bunch of self help books on how to cope with the disease. I would take my pills each day, which at the age of 21 seemed like a lot to ask of a girl who had always been so healthy. That was all the effort I would offer. To me, reading about lupus felt like giving up. It felt like saying ‘okay you tell me what my life will look like’. I didn’t want to know what others would say. I didn’t want to know what doctors wanted me to know as a patient. I preferred to just not be a patient altogether!

My mom had become frustrated with me. She couldn’t understand how, being pre-med in college, I could not want to learn? Of all people, she thought I would delve into medical knowledge regarding lupus the most. That would be incorrect. In fact, I felt myself growing more annoyed with her for wanting to so eagerly learn about the disease since the very night of the diagnosis. I felt I had already been through enough. I was afraid I couldn’t handle any more bad news. And anything having to do with lupus and not being ‘all better’ was bad news. Very bad news.

The questions did soon come as much as my stubborn will tried to delay them. My mind wandered during the day and I slowly found myself wondering about the disease. Would I always be on prednisone? What are the side effects of the prednisone? Will my pain return? Will I be handicapped? Will I be able to work again? Will I ever get married? Does anyone with lupus lead a normal happy life? And so, I reluctantly began searching the website “Lupus Foundation of America”, knowing it was a reputable source. I opened the purple page to my internet browser and felt my heart race. I knew whatever words were on this page would not be easy to swallow. I knew what I was about to read would dictate my days ahead. I breathed in deep and told myself to read quickly and only for a little. Bits at a time, I began to learn about lupus. I learned it was an autoimmune disease, where the body does not recognize its own DNA. So, the body’s immune system mounts an attack essentially on itself, causing the familiar symptoms of joint pain, fatigue, fever, rash, mouth sores, enlarged spleen, anemia and hair loss. The next day I read about life with lupus and that lupus patients are to avoid the sun. I ignored this, unable to imagine what life would be like without sunbathing for hours at the beach each day over the summer. That was something I looked forward all year. I was a summer girl. I loved wearing a bathing suit. I loved swimming at the beach. I loved beach volleyball and running. I loved cookouts. I loved everything about summer. No sun? I told myself this did not apply to me. Who has even heard of a disease where you can’t be in the sun?! Annoyed, I closed the browser.

I wasn’t feeling better with any of this knowledge. It was instead creating more inner turmoil and frustration. I had a life to lead and all of this was getting in the way. Had God forgotten my plan? This was not how things were supposed to go. Would I ever be a doctor? Would I ever work in medical missions again? It felt like everything I was passionate about was getting taken away at a rapid rate and replaced with an unwanted swampy mess.

That night I found myself sneaking onto the internet while lying in bed. I opened up the dreadful purple page, feeling drawn to read more and disgusted at the same time. I read on to see the side effects of the prednisone which included increased appetite, rapid weight gain, fat deposits to the face, back of the neck and abdomen, weakening of the muscles in the arms and legs, severe mood swings, aggression, easy bruising, thinning of the skin and osteoporosis. I read on to see that lupus not only affects joints, which often need replacing, but also can affect organs (heart, kidneys, lungs and brain).

That was all I needed to read.

I closed the browser with a heavy heart, knowing that while the pain had dissipated, I really would never be ‘all better’. And for the first time, I was ready to hear that.

A New Normal

The next morning I awoke to the sun peering in through my window, gently warming the side of my cheek. I opened my eyes, hearing the birds busily chirping outside and was reminded of summer. It was late in July and everything was in full bloom. I wondered how I had missed that. I hadn’t noticed the budding rose of Sharon that was now brimming with soft purple petals. I remembered its light sweet scent. I had somehow missed the budding of my favorite yellow flower bushes whose name I could never recall. I looked down at the fiery yellow flowers from my window, taking in their bright radiance and for a moment I was thankful. Thankful for life. Thankful for new life. I felt a warm breeze blow in past my window and watched as a large bumble bee buzzed by. I wondered what the days ahead would hold.

I turned to my side in bed, slowly hoisting myself up to a sitting position. I could feel my heart bounding and the lymph nodes in my neck were so swollen I could feel them ucomfortably bulge as I moved my neck. One by one, I tossed my frail legs to the edge of the bed. I felt searing pain in my hands and wrists as I attempted to support myself up out of bed. I deeply sighed. I thought I was supposed to feel better?

Making my way out of my room, I grasped the walls of the hallway for support. Hunched over as I had been for months, I slowly made my way to the couch. I collapsed into the large sage cushions, hoping their comfort would envelop me. My heart bounded and I caught my breath. I secretly hoped a change of scenery, even just a few steps away, would somehow bring waves of relief. But my pain followed.

I tried to escape it. In my mind, I desperately ran from my own body.

It followed me down every hallway. It screamed at me each stubborn step I took. It had taken over my bedroom. My own bed had become a place of discomfort and aching pain. Every twist of my body in the night rudely awakened me. I felt my body quiver, as I inwardly attempted to assuage my nerves.

I grabbed the polyester floral pillow neatly positioned on the couch and feverishly pushed it behind my neck. It wasn’t particularly soft but I was happy for its support. Moments later my mom approached with a large protein shake in her hand and a few pills she awkwardly held in the other. I watched her try not to drop them. I quickly swallowed those pills, not wanting to think too long about them. All I knew is that I was supposed to “feel better” and if these were what would do it, I would play along. For now.

That night I sat at the dining room table with my dad, secretly hoping my appetite would return. I had seen the sight of my ribs protruding through my frail abdomen in the mirror earlier that day, and my thighs had diminished to the size of my arms. Weak and startled from the sight of my own wasting body, I knew I had to eat. Even if it meant forcing myself.  So I sat at the dining room table with my shorts now loose around my hips and attempted to force down a few bites of a banana. My stomach filled so quickly. Feeling as if I had consumed a large four course meal, I began to wonder if Dr. Arnold’s promise of “getting an appetite” and “feeling better” somehow did not apply to me. Discouraged, I wondered if my body was somehow different than others who had had success with prednisone. Maybe the steroids wouldn’t help me like they had so many others. Was I somehow different? Did I even have lupus? My mind raced with frustrated thoughts.

Two days passed and I reluctantly continued with the prednisone 60mg. I was sitting in the passenger seat of my mom’s car, and for the first time in as long as I could remember, I could move my knees. Without pain. A spark of hope shot through me. I quickly buried it in disbelief. Not wanting acknowledge any sign of improvement for fear of it being quickly taken away, I ignored any sign of change. Further, I knew that if I did improve, that would mean Dr. Arnold was right. That I did I have lupus. And worse, that I did need medication.

That. Well that I was not ready to swallow.

Over the next week, more change came. I began to stand up tall, no longer walking hunched over as I had these past months. I could move my arms and bend my elbows. Without pain. I lied in my bed in disbelief, slowly moving my ankles and then knees. I flexed my fingers open and closed, waiting for them to start throbbing as they had so ruthlessly. I couldn’t help but doubt my own body, wondering if at some point it would turn on me again. Wondering if I would begin to hurt again like I had. I was happy for the change but something in me knew I wasn’t ‘all better’. Something in me knew things would never return to the way they were. Too much had happened. Too much had been taken away. Things were different now. And I was different now. Something in me told me my fight had just begun.

Silence.

I felt the room get cold, and suddenly my world seemed to stop moving. I could no longer hear Dr. Arnold’s rustling with papers or the medical assistants chatting down the hall. I didn’t hear the man in the next room coughing violently. No, at that moment, everything in my mind went silent. Hearing the words “you have lupus” sent a chill through my body and I felt myself inwardly jump back in shock. For so long we had yearned for answers. For so long we had desperately persevered. That day we got our answer. It was then that I realized that I didn’t truly want the answer. Feeling as if I had had the wind knocked out of me, I wondered what the heck was lupus? I was annoyed that I “had something”. Wasn’t she supposed to tell me this has all been a terrible mistake and I can go home now because things will all be fine? I had always been so healthy. What would my life look like now? Dr. Arnold gently smiled and suggested I go home and do some reading online to learn more. I saw my mom eagerly nod her head and felt myself get annoyed. I would be doing no reading. I didn’t want to know more. I already knew too much. I knew I had something. Something that was permanent. Something that wasn’t going away. I could sense it wasn’t something small either. By the way Dr. Arnold and her nurse looked at me, feebly hunched over on the exam table, I knew it was big. I breathed in deep, attempting to summon what little mental strength I could. Dr. Arnold told me she would be starting me on a medication called prednisone. She told me that I would begin on a very high dose of 60mg and that we would taper this over time. She also told me I would be starting another medication called plaquenil, which I would take two times daily. I asked her how long I would remain on this medication and she told me indefinitely. “As in the rest of my life?” I blurted out. She nodded and smiled. I told her we can try the medication but that I felt I would get better. She just had to be wrong. I told myself I would play along with her little game. Just for now. She would see I didn’t need all of this.

And so I reluctantly played her game.

She was never wrong.

She then told me in a few days I would feel better and that the prednisone should increase my appetite, help alleviate my pain and help me to gain some weight. That I could hear. I didn’t believe her but I didn’t mind hearing at least that much.

We left her office that day exhausted and in just as much pain as when we had come. My heart was heavy with news of a diagnosis. My mom grabbed my frail arm, helping me down the stairs and into the car. I could feel myself short of breath and my heart pounding in my chest, and I had only gone a few steps. My mom drove us a few blocks down the street to Friendly’s for some dinner. I agreed to go, hoping it would calm her nerves. We sat in the restaurant and placed our orders. I knew I wouldn’t eat. Food hadn’t tasted good in months. I looked around and all I saw was dismal grey. There were no words to be said. I felt no emotion. Numbness had taken over and I felt like a shell of a person, completely hollowed out. I glanced across the isle of the restaurant and instantly wished I hadn’t. It was a family with two young children, each laughing and eating ice cream. I felt myself stare for a moment, taking in their smiles and felt my own heart drop. I watched my own dreams as a mere outsider, watching others live my happy life. The life I was supposed to have.

But everything was different now.

And everything was difficult.

My mom finished her meal quietly. I tossed my chicken fingers around on the plate a few times over.

We headed home, both heavy in our thoughts, not saying a word.

Waves of change.

That night we learned about Still’s disease. More than I cared to learn. Part of me wished I remained in the dark about the whole thing. Still’s disease was a chronic disease characterized by high grade fevers, splenic enlargement, rashes and severe joint pain and swelling. Over time the joints fuse together, leaving its victims “still”.

The picture painted before me was not exactly how I pictured my life. There were no bright colors. There was no warm sunshine. I looked instead at the cool grey canvas and saw dark clouds moving in. I saw waves of change ahead and was unnerved as I couldn’t help but picture wheelchairs and handicapped signs.

“How had this become my life?”.

 I was frustrated by my own helplessness. My complete loss of control. My plans that had come to an abrupt halt. Deep down I knew I never really had control. Of any of it. Deep down I knew the one who had control. But he had been so quiet. He had let all of this happen. Everything was different now.

Everything was messy.

And everything was difficult.

A week passed and we returned to Dr. Arnold’s office. We returned to the waiting room scattered with frail elderly people with deformed knuckles, swollen knees and sore backs. I was still in disbelief that I was actually in the right office. I didn’t believe that the doctors in this office would have anything to offer me. Barely 21 years old. “No the doctors who took care of these patients, they knew what to do with the elderly.”

I was starting to wonder if there was a doctor who knew what to do with me. A few minutes passed and we were brought back to the exam room. I didn’t know it at the time, but I would leave this room different than when I came.

 I didn’t know that I was about to receive news that would change the course of my life.

 I didn’t know that everything would be different.

And I do mean everything.

Had I known what was waiting for me on the other side of that door, I can’t say that I wouldn’t have tried to run.

Had I known what I would encounter on the days ahead, I can’t say that I wouldn’t have turned fast in the opposite direction.

But we didn’t know. So we entered the exam room, as we had entered so many other exam rooms. Exhausted and hopelessly yearning for answers and relief.

As I boosted myself up on the exam table I noticed I could hear Dr. Arnold’s voice. “She must be with a patient in the next room.” I tried to listen but their voices were muffled, and I couldn’t make out their words. Seconds later I heard laughing. I hoped she would hurry. I was so uncomfortable, sitting on the table with the crinkled paper. I was annoyed by the loud crackling of paper each time I moved.  

Moments later Dr. Arnold entered the room. She carried with her a clipboard and a smile. She greeted us warmly and sat down on a nearby stool. She looked at me and began to tell us that I did not have Still’s disease. She went on to say that my lab work had come back.

She told me that my ESR had reached an all time high of 121 and that my body was “hemolyzing”, or killing off its own blood cells by causing them to burst. She told me I had a “positive ANA”.

I had no idea what any of this meant. It didn’t sound good. It only confirmed to me what my body had been screaming for months.

She told me I had “lupus”.