“There is only one problem in the world:
How does one break through the chrysalis and become a butterfly?”
She spread her wings, leapt and surrendered herself to the mercy of air, now and then channeling her flight. An immense expanse was in front of her, and she was free to fly far and wide. She had nurtured the dream of flying for so long. She was cocooned. People wouldn’t have called her a lifeless shell, had they had any inkling of the chaos inside. Her wait came to an end, her patience was rewarded. Tiny cracks budded, heralding dawn. Soon the day came when she was the happiest entity on Earth. Her beloved dream of flight was granted, and the most anticipated moment arrived. She slowly stretched her wings, bubbling with delight. She leapt and flapped her wings; gravity pulled her down a little but she didn’t fall. She flapped her wings one more time. She was able to fly higher. She perched on a stone for a moment, scanning the environment. She saw a flower and flew toward it. She drank the nectar which gave her strength. She then perched on a tree for a while. She only wanted to fly unstoppably. She began to explore everything, aiming to fly as high as she could. She sprang and tried to beat her wings. Something was different. She couldn’t fly. She struggled a lot and felt a jerk. She tried to flap her wings again but felt oddly deranged. Instead of flying high, she was falling down. She hit the ground. A moment before closing her eyes, she saw her broken wing, dangling on a tree branch.
I wake up with a jerk. My heart is racing. It was the most beautiful of dreams. It was the saddest of dreams. Pain siphons me out of the dream and I adjust the pillow and my position to soothe the pain in my neck and shoulders. I wonder why my alarm didn’t ring. Did I oversleep? With a dread I pick up my phone to check the time. It is 5:50 am. Perhaps I could stay in my bed for ten more minutes to soothe the pain. My alarm shakes me awake, and I lurch out of the bed only to welcome the pain in my stiffened knees. I look at the clock and realize there’s not much time to get ready and leave home for university. My brain tells me nothing is unusual, and limping slightly, I urge myself to get on with the daily chores.
I leave home in an hour for my university. It takes me two hours to get there, as I have to drop my sister at her university first. The two hour drive gives me a good opportunity to contemplate. Today I eagerly anticipate this time to think about the dream.
Only a few days back, I found a broken forewing of a Monarch butterfly. It was so beautiful and so perfect as if it had been removed with great care. It was velvety soft when I discovered it sitting on the hood of my car. I was scared of causing its scales to come off, which would lead to discoloration. Before preserving the wing in a book, I took a lot of pictures of it.
I soon reach Occoquan Bay and hate the fact that I can’t stop to admire it. I still sneak a quick glance. The water is so serene. It reminds me of my favorite beach, Manora in my home country, Pakistan. I miss my visits to Manora, a small peninsula on the outskirts of my hometown. My distant relatives lived there, and that gave us an opportunity to visit the beach often. Pain siphons me out of my thoughts yet again, and I realize how uncomfortable my seat is. My posterior shoulder blade regions hurt again. I put my brown microfleece jacket behind my back to create some cushioning. It feels better. Just like water flowing around rocks, I constantly strive to find my way around pain.
I am a warrior: a Rheumatoid Arthritis warrior. The battlefield is endless and the enemies are fierce and powerful. Sometimes it seems that I am fighting a losing battle. I know I won’t win the battle at any cost, but I fight nonetheless. Rheumatoid Arthritis (RA) is incurable but not uncontrollable.
RA is a chronic systemic autoimmune disease. It’s a bundle of disorders which slowly unfold and manifest themselves over the course of time, inflicting some harsh realities which you’ve just got to accept for good.
In an autoimmune disease, the immune system, which is the defense mechanism of a body, starts working against the body. RA basically affects all the joints in the body but eventually may also affect the eyes, skin, lungs, kidneys, heart, and blood vessels etc. in some way. That’s the reason RA is addressed as a systemic disorder. It may also cause local osteoporosis and eventually a complete loss of functionality and mobility. The state in which RA is particularly troublesome is called a flare up and the state when it is not so active is called remission.
I precisely remember the moment when I got diagnosed with RA. It was such a chance and unexpected discovery. I was having some slight pain in my knees while bending them or climbing stairs. The doctor gave me a few tests, and the one for RA turned out positive. I had no idea of what it meant to test positive for RA or what on earth RA was. The doctor gave me a brief introduction to the disease, saying, “It’s a chronic disease of the joints. You’ll have to take these medicines regularly. The medicines have a lot of side effects, so I’ll have to keep you under my observation.”
I came home and searched about RA on the internet. The details were quite overwhelming, and so much of it didn’t even make any sense. I probably was at the very initial stages of the disease and so I didn’t have many prominent symptoms. The mystery of RA was only solved a teeny bit for me. I deduced that RA would always be a part of me from then on and would affect many aspects of my life. It was a disease associated with all the joints in my body. It might cause them to distort eventually. Pain would stay my constant companion. The silver lining of the RA cloud was that it was controllable, just like my asthma. I learned loads about RA in the course of time. I was only nineteen then. It was quite unusual to get inflicted by RA at such a young age. I had no family history of RA, and the strangest thing was that there was no known cause of RA.
I soon reach my university, and luckily find a good parking spot. I step out of the car, pick up my bag and start walking toward the library. After sitting for two hours, walking feels wonderful. It also eases the stiffness. As I enter the library, thanks to the momentum of the train of my thoughts, I recall something.
I was lying on my bed on a cold January afternoon. Numerous medicines, some biscuits and a glass of water were sitting on the side table. I had been bedridden for almost a week. I couldn’t move my body an inch. Any slight motion shot excruciating pain throughout my body. My final exams were going on. I had not been able to prepare for my upcoming exam, which was just a week away. I couldn’t move my head from left to right, let alone study. Tears rolled down my cheeks, as I tried to accept the fact that I would have to abandon my education. My sisters were planning to go to Manora with some family friends in three days. I really wanted to go too. My health surprisingly improved over the next two days. I felt like a butterfly emerging from its cocoon. Saturday night, not getting my hopes up, I asked my father.
“Can I go to Manora with them tomorrow?”
“But you are not well,” he replied, worriedly.
“I feel better now. I really want to go,” I said timidly.
“Well, we’ll see how you are doing tomorrow morning. If your health improves, you may go,” he said pensively.
I felt so happy after hearing his reply. Although I was still dreading the upcoming exam and still hadn’t touched my books, I felt as if the sea shore was calling me and it would heal me completely. The next day, I felt physically weak but way better than the previous night. I was fueled by my determination. I went to Manora and spent a wonderful day sitting on the sand in front of the water. The lapping waves of the sea soothed me so much. I felt rejuvenated. I spent my day taking pictures at the beach. In the next four days, I studied rigorously for my exam. I passed my exam with decent scores. My worst flare up passed. The sea shore healed me physically and spiritually. I could fly to greater heights in the academic world.
Over the years, due to RA I have been battling with joint pain, stiffness in joints, wear and tear sensations in my joints, chronic anemia ( iron deficiency ), scleritis ( inflammation in the eye ) to name a few trials. Special medicines used to treat RA are called Disease Modifying Anti-Rheumatic Drugs (DMARDs). They are pretty effective in controlling the prognosis of the disease, but they also have many challenging side effects. Without medicines there is no hope, but with them there’s a hope for a reasonable quality of life.
RA has taught me that having a chronic condition is about being strong. Whether our illness is invisible or otherwise, when we are sick, we are suffering, we are physically weak, and struggling. An ailment often crops up like a bamboo and catches us unaware. We might reject the facts, lament over our luck, and eventually accept it. We then fight hard as long as we can. Our momentum gives us the strength to stay in form and not let our boat sink. It takes strength to accept what life throws at us, it takes strength to bear excruciating pain, and it takes strength to fight it.
Not everyone understood the turmoil and multitudes of emotions that I went through. My acceptance of my condition didn’t guarantee others’ acceptance. It took strength to face it all. At times people close to me found it difficult to see me suffering, and I was at a loss of how to handle them. Yet again I had to wear my garment of strength to assure them that I would be okay.
I’ve also come to realize that depression itself is no less serious than a flare up, for it rapidly aggravates RA a lot. Psychological pain is as bad as physical pain. It either breaks your wings or forces you to retreat into the cocoon. In any case, transformations are always painful. It is so crucial to have a healthy relationship with yourself and if you are lucky, have sincere and supportive friends. It is nourishing to laugh often, stay happy and motivated, remain physically active, read good books, have meaningful pursuits, and connect to Mother Nature. Whenever I succeed at this, the butterfly in me starts fluttering, and then I cherish each day of my flight so much.
I suddenly realize that I have reached the library. I find an empty study room in the library, where I can complete my assignment. I am about to enter, when I hear someone call out my name. I turn around and see an old friend.
“Hey, how are you?”
“I am okay,” I respond after a while, smiling.
By Ratna Khatri