Fight Back

Date: 8th September 2014. Weight: 8st 11lbs. Stage: Three. Estimated time of survival: Three years, I hope.

The women in reception didn't know what was wrong with me. I sat in there every fortnight, waiting for Phil. A long time ago the school decided they would allow Phil a pass to come into the school to see me. As well as access to me any time of the school day.
There are things I noticed when I was sitting waiting for him to arrive - there were more cups in the water dispenser and the school albums were arranged in alphabetical colour-coded order. The swirly pattern on the beige carpet was getting a little too thin and worn.
The sound of the buzzer made me look up. The door was opening and the tall, slim figure of Phil was walking towards me. I stood up and without meaning to a huge grin spread across my face. He smiled back at me and I felt a warmth in the pit of my stomach.
“Pippa." he smiled brightly, calling me by my middle name. He opened his arms to hug me.
“Hi Phil.” I said and wrapped my arms around him, letting him give me a squeeze.
“How have you been? Feeling okay?” he asked seriously.
“Yeah, but shall we talk about this later?” I asked and he nodded in understanding.
“Okay, come on then.” Phil smiled and led me through school with one arm wrapped around my shoulders. “You're looking a little pale.” he stated.
“I'm always pale." I said.
“You're not.” he countered. He held the door to the nurses room open for me and took me in. Phil fiddled in his pocket for his keys. He unlocked the door to a side room and let me pass through.
“We don't need an intense medical, do we? Just a quick one?” I asked hopefully.
“Just a quick one.” Phil agreed. “But we need to do a blood test.” he told me and I sighed in annoyance. I should have been used to blood tests but I just couldn't get over my phobia of needles.
“Great.” I moaned and sat on the examination bed.
“Stop whining, Pippa." Phil said as he leaned against the silver filing cabinet. “So, how have you been?”
“Okay, it’s harder to walk with loads and I feel weaker after walking for a while." I shrugged.
“That's normal for someone with Infirma so nothing to worry about. It'll be the number of red blood cells in your body. You need to remember not to exert yourself.”
“I don't, only in gym class.” I stated.
“I wanted to speak to you about that.” Phil said and sighed.
“I'm not giving up gym.” I said firmly and he looked at me carefully.
“If anything happens you will,” he told me and I rolled my eyes. “Jacket off." he ordered and I slipped my hooded jacket off. “Have you had any weight loss?” he asked and slipped the blood pressure cuff around my upper arm.
“I haven't noticed anything.”
“I'll weigh you in a minute,” Phil said and scribbled down something in my notes. “Blood pressure's a bit high."
“How high?”
“Not too bad, we just need to keep an eye on it,” he said and clipped something on my forefinger without asking for permission. “Did you have a good birthday?” he asked as he carried on.
“My birthday was at home with Dad, Evelyn and Sasha.” I stated dryly.
“Well, was it better than last year?” he asked hopefully.
“Worse, much worse.”
“Oh, that's not good.”
“No." I agreed.
“Do you want to talk about it?” Phil asked gently.
“Nothing to talk about,” I shrugged. “I opened presents that I'll never use for reasons you already know, then we talked and we argued and I got pissed off.”
“About Infirma or about the baby?”
“Both.” I admitted.
“Did they listen to what you were saying?”
“They never listen.”
“Do you want me to talk to them?” Phil asked after a pause.
“No.” I said. Phil nodded once and then busied himself with placing a stethoscope over my heart. He listened intently and I laughed.
"What?" he asked.
"I bet you've been listening to normal heart rhythms all week. Mine must seem messed up."
"It's like a vacation." he joked. Then he pulled it away and scribbled on my notes. “Time to do your bloods,” he said cheerfully and I cringed. “Come on.” he urged and took a needle contraption out of its wrappings. I looked away but felt the rubber cord being tied around my arm, Phil slapping my skin until he could find a vein. The thin needle pressed painfully in my arm until it broke the skin and Phil pushed a vial into the contraption, forcing the vial to be filled with my scarlet blood.
“Ow,” I shuddered as I pressed the ball of cotton wool against my skin to stop the blood. “Done?” I asked hopefully.
“Done.” Phil confirmed. “Hold it on for a while, for some reason I don't seem to have your current platelet count in your file.”
“Okay." I nodded.
“Now, I need to talk to you about some more symptoms to watch out for.”
“Like what?” I questioned.
“More fatigue and tiredness, sickness, high temperature, hot or cold sweats and feelings of faintness, more weakness and weight loss, excess bruising and bleeding, shortness of breath." he listed.
I sat and looked at him for a minute. When I was diagnosed I was given symptoms to look out for. I was given the same list that Alex was given when he was diagnosed. But when Alex reached his final year he was given another list, the same one Phil had just recited to me.
“There's something wrong, isn't there.” I commented and watched his face darken.
“Everything is fine.” he tried. Phil was trying to reassure me. But I could see the crease form in between his eyebrows.
“It’s not.”
“Look, we don't have time now. We'll talk after the meeting.”
“So, there is something wrong?”
“Something has-” Phil tried.
“What?”
“Please Pippa, after the meeting.”
“Fine.” I growled under my breath. I walked out of the door that he was already holding open for me. Phil locked the door behind him and we walked out and along the corridor. At the end of the corridor was the principal's office.
“Don't worry about anything, if they ask any questions you don't want to answer or say anything you don't agree with just look at me.” Phil said to comfort me.
“I can cope.” I said and he looked at me oddly. But he knocked the door sharply and held it open for me.
Inside the room was the principal, Mrs Stow, behind her desk. There were four chairs ready and only two of them filled. On the right sat Mrs Telle, the school nurse, and Mr Taylor, my tutor. I sat on the far left, as far away from the teachers as possible.
“How are you, Helena?" Mrs Stow asked.
“Spectacular." I said dryly.
“Now, this is to just review things and decide what is best for you,” she explained for the third year in a row. “Mr Green, would you like to explain what the disorder is, please?” she asked Phil.
“Yes,” Phil started. “Infirma is a disorder concerning the blood. Named by the discoverer in 1967.
"It reduces the number of blood cells in the body drastically. It causes the sufferer to become weak – because of reduced red blood cells preventing oxygen from the lungs travelling to the bodily organs - until they one day can't carry out day to day activities.
"Reduced white blood cells means that the sufferer is prone to disease and infection because the cells can't fight it off.
"Low number of platelets causes the sufferer to bruise and bleed easily and sometimes uncontrollably. In some cases the sufferer has been known to bleed from the very pores of the skin. Eventually the disorder disables the sufferer and causes the major internal organs to shut themselves down due to lack of oxygen,” he told the room without looking at me. "That's a quick overview. I could go on for hours about the dynamics of the disorder and include medical jargon." he smiled.
I knew what all this medical jargon meant and what it looked like. I'd seen it happen to Alex. While he was left alone after his friends and girlfriend had left him to die. But knowing this thing that my parents had given me would eventually shut down my kidneys, lungs and then finally my heart was terrifying.
“You've had the disorder for three years?” Mr Taylor asked, reading my notes.
“No.” I told him.
“Helena was diagnosed three years ago but has had the disorder from birth." Phil corrected for me.
“Last year we had allowances for Helena to leave classes if needed, be in constant contact with Mr Green and to leave school when needed,” Mrs Stow read. She was talking like I wasn't there. “How are things looking for this year?” she asked.
“The same.” I shrugged.
“You'll continue with your studies here?” Mrs Stow asked.
“Yeah.”
“Is there anything else?” Mrs Stow asked.
“Actually, there is something else I'd like to bring up." Phil suddenly said and I turned to look at him. He was still looking straight at Mrs Stow.
“Yes?” she asked.
“I would like more involvement with Helena while she is here." Phil explained.
“How so?”
“I currently see Helena once every fortnight, I would like to see her every week.”
“May I ask why?”
“I need to monitor her." Phil said simply.
“You do?” I asked and he nodded, still not looking at me.
“That's doable, assuming it is when Helena has a free period.”
“Yes,” Phil bowed his head. “Now, I'm sorry but I really must get back." he frowned and rose from his chair.
“Thank you, Mr Green." Mrs Stow said and Phil turned to walk out of the office. I watched him turn the door handle and a lump grew in my throat.
“Phil!” I exclaimed and jogged to the door. Phil was halfway down the corridor when I stopped him. “Tell me what's wrong?” I asked. “What's wrong with me?”
“Please, Helena." he said. I suddenly found it difficult to breathe; he never called me by my first name.
“Tell me.” I ordered and he looked me gently in the eye.
“Something came up on your blood test last month." Phil told me after taking a deep breath.
“What?” I asked faintly.
“At the lab, something was wrong with your cell count. We’re not sure at what rate things will happen yet, but we need to keep an eye on you." Phil explained and I stood motionless.
“Does this mean . . . you know.” I urged, dreading the answer.
“No, I'm sure it doesn't.” he said, trying to calm me. I looked at the floor. “Everything will be okay, Pippa." he reassured me and pulled me into a hug.

Notes

Hey! What did you think? Infirma has been explained! Any questions? What will show up in her bloods? Will she tell anyone? Do you like Phil? :)