Award-winning essay: Live in the present!

In 2015, our expert panelist Charlotte won the Edgar Stene Prize for her essay: 'Live in the present'. The prize is awarded annually by The European League Against Rheumatism (EULAR) and was presented to Charlotte at the annual EULAR Congress in Rome in 2015. Below you can read Charlotte's adapted and translated essay.

Author: Charlotte Secher Jensen

I still remember the day. The day I was diagnosed with rheumatoid arthritis. My thoughts were everywhere and nowhere. They wandered confusedly in circles… why, what then and what now? The night – The night after the day is probably the one I remember best. How I silently cried into my pillow until it could be twisted. How I crept into the kitchen in the dark, so as not to wake the family, and turned the thermostat on the radiator to full power. I remember the monotonous soothing knock from the radiator and the heat, the hissing meditative sound like the ocean, which gave me peace and a strange kind of artificial comfort. I sat down with difficulty on the hard kitchen floor and leaned against the invisible arms of the radiator, which gave me a warm, fragile hug. Here I sat in the darkness. Heavy on my heart. Felt the burn marks on my back, where my angel wings will hopefully one day sit in the thoughts of my imagination. The burning pain gave me seconds of peace from the stabbing pain in every joint. The tears dried up. And something happened. The wings of my thoughts folded, I took a deep breath and stood up with determination. The bright thoughts fought against the dark ones. And won! I want to live in the present and in the future. It's my life. My decisions. But I clearly sense that I need someone to support me. A long journey awaits me.

I quickly learn the hard way that there are 3 different types of hospital visits. The ones where I leave the place and don't get any better. A waste of time. A waste of money and a waste of the present. Then there are the visits where I leave the place crying. Either because I wasn't seen or heard. Or because I had to deal too much with the fact that I am chronically ill and a patient. Maybe it's one of those visits where I have to go through examinations and blood tests that I can't bear at all. Which feels like an assault on my tired body and frayed mind. With a doctor or busy nurse who I feel holds my future life in their hands. He or she barely looks at me, but only looks down at the record they should have read or skimmed before I came through the door. Tired eyes and a neutral statement: "Your blood tests look fine. So you must be doing well." I feel like a number. Number 13 in the line of endless patients in line. With a extinguished hope, they leave. I leave.

And then there are the last ones. The best ones. The visits I prefer. The ones where the doctor or nurse asks: “How are you doing?” I answer: “It’s going very well.” They nod, lean back observantly and say again: “And how are you doing?” I sense the person behind the coat, their warm eyes and their desire for me to thrive, to have a good life, despite inhuman pain and powerlessness. They have read or at least skimmed the medical record. They remember my name. I am not a number. Those visits are the light at the end of the tunnel. When you are sitting there all the way down in the coal cellar and the nurse smiles warmly at you and tells you that everything will be fine. I can always call and have a chat about anything. That even though she doesn't have arthritis herself, she recognizes – has seen it before, the powerlessness, the fear, the helplessness over medication and side effects and everything else I end up pouring out of my sleeve because it has burned itself into my soul and there is finally someone who knows how to push the right buttons. I feel the stone fall from my heart. It all comes loose. It will pass. My shoulders sink and I can breathe freely again. She gently pokes me and comforts me in the meantime. Gives me hope and a belief that the present is ok. The future will be better. That you can learn to live with arthritis. It takes time. Both body and mind have to get used to the upheaval. And so do family and friends. You are not the same. Your body creaks and complains.

I sit nervously and wait in the waiting room. I look around. I am surrounded by old and young people. They probably all have arthritis. Some are accompanied by their loved ones. Others sit there alone and wait. It helps in a way to know that there are others who have the same disease as me, but at the same time I feel their pain. Our shared insecurity for the present and the future. We all have the same burning desire to get the best out of the diagnosis, of life, and to take control of the disease ourselves? I sigh….I know it is written in my journal that she, the female doctor I saw last time and I do not have good chemistry. That I do not want her to ever write a single word in my journal again. My strength and ability to say no were present that day in the midst of all the hopelessness, disappointment and unbearable pain. The nurse and I had a good chat. A chat over the phone, which was promised and taken despite their busy everyday lives. I'm grateful for the conversation and nervous about who I'm going to tell my life story to this time. It feels like an exam every time. A 10-minute exam where I have to tell as much as possible before I'm interrupted. Before I say goodbye. See you in 3 months. Remember the blood tests. I almost know the grade in advance.

I feel the anxiety clinging to my beating heart and my protective invisible wings hugging me so tightly that I can barely breathe. I gasp for breath when my name is mentioned. I look up uneasily and meet a pair of warm eyes. There he – the doctor – stands welcomingly and casually leaning out of the door frame. In a T-shirt, unbuttoned lab coat, tennis shoes and jeans. My senses are alert, however. I follow tiredly. I sit down heavily in my chair and swallow the nonexistent saliva in my mouth. I can barely bear to start my story over again. The doctor pushes himself forward in his office chair. He flips through my journal and I feel hope growing inside me. I secretly watch him and my twisted mind can't help but think that it's not appropriate for someone to have so many small books stuffed into the pockets of a lab coat. Not good for the back. I meet his friendly eyes with a cautious smile, which only grows wider when I hear the sentence: “How are you doing?” I hear myself lying – answering him: “It’s going well.” He quietly rolls towards me – the books gently knock against my knee. He asks again with life in his eyes. I can feel the relief and that I smile all the way to the top of my eyes, even though tears are trickling and slowly rolling down my cheeks. He politely hands me a napkin. He smiles encouragingly and examines me with caution and yet with firmness and pleasant pressure. I relax.

He scans my jaw, wipes the transparent cream stage-wear away from my cheek and notes with humor in his voice that it probably won't do anything good for my hairstyle. I pull on my smile. Never mind that it's still stuck all the way to the back of my neck. He's forgiven. He hands me another napkin so I can try to remove the last of it myself without the hairstyle completely disappearing. While he talks, explaining, he comforts me by gently stroking my sore leg. A warm and soothing hand lies on my thigh. He holds my gaze. We are both present in the present. The tears fade. I hear myself telling the truth. And I come to the realization that it probably won't get better. That it won't go away. But that it will pass. I'm okay. The touch on my body and mind is borderline, but not in an uncomfortable way. He listens, he sees me and he hears what I'm saying. His hand provides seconds of pain relief in my leg, his words give hope and his interest helps the honest words make their way from my mind to my mouth.

He carefully examines each joint in my fingers and his warmth, vitality and charisma flow as positive nourishment to my realization that there is a life with arthritis. Maybe not the life I had dreamed of, but a good and meaningful life. I leave the hospital with a smile on my lips. When to send one or two to patients in the waiting room. Outside, the sun's rays hit the last tear in the corner of my eye. I take a deep breath – straighten my back, feel the inner strength awaken – walk purposefully out into the parking lot. Out into the world. Ready to live in the present and face the future. That the journey with arthritis in the backpack of life exists if you get help to pack correctly. – I kiss the present and kiss life!