by Sam M
To make my life a living hell. That’s its only purpose. That’s what it was made for. And I must live my entire life without knowing why it chose me. If I want the answer, I have to wait forever.
The sunbeams burned through the window. Maybe I was waiting for something. Or maybe I was just tired. Something, in any case, held me sitting there in front of the window.
"Would you like some tea?" my father asked.
"No thanks", I answered as I looked at my red arms.
"You look tired", he said. "Perhaps you should consider staying home from school today?"
But that was certainly not an option. I had an important day before me.
"No", I answered firmly. "I’m leaving now."
But the very second I stood up my eyes grew dim. I tried to maintain my balance, but fell desperately to the floor.
"Sam!" my father shouted. "What happened?"
He bent down and worriedly held me in his arms.
"I don’t know", I said dazed and tried to connect what had happened.
I know God hasn’t made it – he only make good things. It must have been the devil itself. I can’t imagine anything else.
"Preferably the entire week", the young doctor said and looked at me with sympathic eyes.
I was about to spend the entire week at the hospital. My problem was still unknown and I had absolutely no clue that I was about to face the toughest period of my life.
"You’ll meet our specialist Peter Malmberg in a few moments", he continued. "He’ll explain everything to you."
The doctor left the room and I shared a few silent seconds with my father. There was nothing to say. The time had simply come. I had been examined and now it was time to do something. I couldn’t fight it alone anymore. I needed help.
"So you’ve lost twenty pounds?" Doctor Malmberg asked. He was apparently very experienced in this area. But that didn’t matter. Because what I didn’t know at the moment was that irrespective of his experience, he couldn’t help me. Not entirely. No one could. Ever.
"The results show that you’re short of almost all the vitamins and iron."
"What exactly is wrong with him?" my father wondered and wished more than anything that it wouldn’t be something too severe.
Doctor Malmberg looked me in the eyes and gave us our answer.
"Have you heard of Morbus Crohn?"
Sometimes I talk to it. Thank it if it’s been nice during the day and fire at it if it’s been unusually bad. But since it’s made for destroying my life, I’m afraid I’m just telling it that it once again has succeeded with its purpose.
"Morbus Crohn?" my father wondered.
"Yes," I said with my eyes fixed at the floor. "I know what it is."
Then I couldn’t say a word. I had just got the worst scenario I could ever imagine, and that wasn’t exactly the easiest thing to accept.
"Sam", the doctor said and wrinkled his forehead. "I know this isn’t something one can accept right away, but we’ll talk about it as much as you need. And I’m going to tell you this immediately; you’re going to almost completely recover."
But he knew as well as I that I couldn’t be fully recovered. That was what frightened me most. That my children had to see me get up in the middle of the night because I just had to eat something immediately.
A nurse showed me to my room. It was rather nice with a TV, two beds and a large window. The walls were yellow with a small table in the corner. But there was a cloud of gloominess in the air. A cloud that made me want to leave and never come back again.
"If you ever need anything, just call", the nurse said and referred to a button beside the bed. "Anything, anytime."
Chronic inflammation – or, in other words, a monster that follows you your entire life with only one goal: to make you miserable. That’s what Morbus Crohn is. No medications can make you well. No doctor in the world can cure you. Collect all the money on the earth if you wish, you can still not be like everyone else.
I was lying on the bed just looking at the walls. The trees outside were bare and the heaven had got a darker shade.
"Hi", I said. "My name is Sam. It seems like the two of us are about to live the rest of our lives together."
I put my hands on my stomach and groped over it slowly with my fingertips.
"We’re going to experience the world and everything it has to offer together, so I hope we’ll get along as well as possible."
The door suddenly opened and two eyes peeped in carefully through the doorway. My mother had left her job to visit me. At first, she just stood there and looked at me with her glittering eyes, but then she entered the room and sat down at the bedside.
"How are you?" she asked concerned.
"Much better than one could believe", I answered with a forged smile.
She seemed very concerned, and it hurt me see her like that.
"If I could, I would be lying here in your place." she said and stroke my cheek carefully.
The tension in the room augmented and I started to feel slightly uncomfortable.
"This is nothing to worry about. I’ll be out of here in a few days." I said with a smile on my face as an attempt to break the tense atmosphere. But it didn’t seem to work. She blamed herself.
"It’s all my fault", she said and looked at me with broken eyes. "I should have seen that you got worse."
A lump grew stubbornly larger in my throat.
"You knew as little as I what was wrong." I said.
She got tearful and when I reached out to grab her hand, all her sorrow welled out. Her tears fell down and left wet marks on the sheets. I had never seen her like that before. It seemed like a bottomless pit was opened beneath her. The fall was long, dark and endless.
It had been a long time now. And still they hadn’t done anything. How many times had I been sitting in a waiting room with my heart in my mouth waiting for my name to be called? How many times had my body frozen like ice when I got a mail with that horrible hospital mark? What were they about to do next? Another x-ray? Colonoscopy?
Still this was only the beginning.
"There are about 15,000 patients with Morbus Crohn in Sweden today", the doctor said. "Therefore, it’s a relatively unusual disease that we don’t know very much about."
"How about outside Sweden?" I wondered. "Maybe I should go abroad to get help?"
"It’s just as unusual in the whole world. You’ll get good treatment here", he said and clicked his pen a few times.
I was in a good hospital. Perhaps the best in the country. But still I was worried. And afraid. Incredibly afraid.
"There are two sorts of Crohn’s patients," he said and suddenly got much more serious. "First, we have the patient that only stays at home feeling sorry for himself. He has no goals in life since he has a chronic disease."
Now he had my full attention.
"Then there’s this other patient", he continued. "He has accepted his disease and takes one step at the time. He has goals and does everything to reach them."
I raised my head and our eyes met. He was startling but at the same time convincing. He tried to get me motivated. Motivated to start over. And somewhere inside I had to confess to myself that he was right. My dreams could come true as well. If just tried hard enough.
And all of a sudden I realised that my life wasn’t over. It had just got a new beginning.
Others can choose their partners, and if they don’t get along, they can simply leave each other. I would do anything for the opportunity to make that choice. But I must live with Morbus Crohn for the rest of my life. Till death do us part.
My prayers to God have decreased in proportions. When I was well I wished for millions and millions of things.
Today I just wish for one thing.
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