Sickle Cell Strong

I have really amazing news which I want to share with everyone!

I am one year hospital admissions free! #Sicklestrong

As I am sure you all know I have sickle-cell anaemia an inherited blood disorder. Red blood cells which are round and soft become hard and sickle shaped, this causes a multitude of problems such as painful crisis, organ damage and organ failure, extreme fatigue, strokes, swelling of extremities, bacterial infection and may lead to death.

Through the years I have struggled with having sickle-cell, there has been many ups and downs, bouts of depression in dealing with a life long illness but it has taught me many lessons, some hard but always necessary in making me the person that I am today and despite not realising it at the time I am grateful for everything I have been through.

It is a credit to all I have learnt and the support system around me that has kept me out of hospital this year. In my lifetime there has never been a full year without me being admitted to hospital, every year since I was born I am admitted to hospital five or six times a year from one to six weeks at a time.

I had enough of always being sick and I have tried different things throughout the years. But last year I decided to try something different subtle. I kept meditating, I tried to eat a little healthier but the main thing I have changed is drinking alkaline water. It has revolutionised my life, I drink four litres of it every day and it works! It really works. I am not saying I have not been sick for a year, I still get daily pain, and ‘mini-crisis’ every few months but the really bad crisis that I used to get has gone. I know it is not forever but I have enjoyed a year without once having to deal with that level of pain and I am beyond grateful. I am looking forward to more healthier days ahead.

 

Advertisements

Commentary

Good Evening,

I just want to thank everyone for all their support on Friday, we raised £200 for sickle cell awareness day!

I wasn’t able to post as much as I wanted as everyone was very busy, but I hope you enjoyed the poem I wrote.

As it’s summer, cue the dating season and I will be writing something about it in my next post!

Till then.

 

Sickle Awareness Week: Poem: The Mutant Gene

You were created for aSCD Awareness Ribbon better era.

You once had such pure intentions.

You advocated progress.

You brought instead constraint.

You changed the world forever.

You broke the circle.

You bent what was once whole.

You, my problem, my pain, my DNA, my sickle, my cells.

 

Commentary

Good Evening,

I hope you enjoyed The Witness, it is just a little teaser, more will come later.

As it is almost World Sickle Cell Day, I am going to be posting stories and testimonials about what it is like living with sickle cell. Some of these stories will be written by me others will be written by guest bloggers.

I will be having a bake sale to raise awareness for sickle cell on Friday 17th of June from 10.00am till 16.00pm at Hammersmith Hospital, W12 0HS. Please come and support.

Thank you.

Short Story: A Conversation with Death

03theendWeb-blog480

Alyssa’s eyes fluttered closed, she couldn’t take the argument’s anymore she just wanted to sleep, was that so difficult for them to understand?

A warm hand on her shoulder had her eyes opening again.

“It’s you,” she breathed with a smile.

A nod of a dark head, shrouded in darkness his features weren’t easy to distinguish, but she knew this man, trusted him, with her life, which was ironic really, considering who he was.

“You are still decided then.” It was a question but like everything he said it sounded like a statement, an absolute truth.

Alyssa sat up and nodded eagerly, the people around her bed ignorant of her actions, still arguing and reasoning amongst themselves, over her. Her opinion wasn’t sought, it didn’t matter to them what she thought.

“Please,” Alyssa pleaded.

A slow shake of his head, sending his dark hood shifting slightly, even though the room was brightly lit, he stood in darkness, it clung to him like the robes he was wearing.

“Why do you dress like that still? I’m not afraid of you.” Alyssa said tilting her head to the side. She had seen him wear casual clothes, but he was back to his robes again as though he wanted to remind her who he was.

“But you should be,” he said quietly.

“I’m not, I’m ready –”

“You are not, you think you are, but you are not. You are too young to understand that; you will miss out on things, you have not even realised you will miss.” He said.

Alyssa just stared at him her face stubborn.

He held out his hand.

“Come with me,” he said.

Alyssa eagerly complied; stepping out of her body came naturally to her now, like it no longer belonged to her. She looked down at the stranger, hooked up to the life support machines, surrounded by her family and the best Doctors and Nurses she had ever known, but still it was easy to step away and leave them all. It was far easier for her to take his hand.

He took her to a house she knew too well, a bedroom she hadn’t seen for almost a year. It hadn’t changed; a picture that her sister had brought to the hospital was here in her room before she had gotten really sick. Her bed never as neat as her sister’s had her teddy bears assembled on her bed waiting for her return.

“Why have you brought me here?” She asked him a catch in her throat as she slowly touched the light pink walls, she remembered having an argument with her sister over the choice, they had settled on painting two sides of their room yellow and the other two sides pink.

“I want to show you, all you will leave behind.”

Alyssa gasped as her sister stepped into the room. She looked happier than Alyssa had seen her in a long time. At thirteen Penelope was two years older and being tall always looked more mature. Alyssa took a step back as she, or rather a projection of her walked into the room. It was strange seeing herself so vibrant and full of life. Alyssa’s projection and Penelope’s began painting their nails.

Alyssa’s eyes shimmered as she looked away at the scene; so normal and yet something she had been longing for.

The scene shifted, Penelope and Alyssa’s projection were older in their mid-to late teens. They were chatting excitedly as they made their way downstairs. Alyssa followed the duo as the doorbell rang. The house was different, the pictures on the wall depicting the passage of a life she couldn’t know. She stopped short at the sight of her parents, they looked exactly the same, except Dad’s hair was greyer. Mum whispered something in Dad’s ear a smile on her lips as Dad narrowed his eyes at a boy who looked to be sixteen; he was shifting from one foot to the other.

Alyssa glanced at her companion.

“The first boy you ever love.” He explained.

The scene shifted again and she was graduating, she looked so different, the hair she had always struggled to grow, had been cut very short almost pixie, but it suited her older face; she’d even pierced the top of her ear. The older version of her smiled as she went to hug her sister and her parents who were applauding and beaming at her.

Alyssa wiped tears out of her eyes at the image.

“I don’t want to see anymore.” Alyssa said, the tears wouldn’t stop as she kept wiping her face over and over again.

“One more.” He said.

The scene shifted and it was her and her sister’s bedroom again, except everything was different, the walls were painted a dark plum and a deep purple, even as they grew older they would always disagree on the colours. The shelves were empty; boxes lay around everywhere as though they were moving. An older version of both of them lay on separate beds but they had both closed the divide by reaching out their hands to each other.

“Ally?” Penelope said softly.

“Yeah?” Alyssa’s projection said.

“Even if we are miles apart, promise me that we will always find our way to each other?” Penelope asked.

“Always,” Alyssa’s projection responded.

The scene shifted and she was standing in the bedroom again, the one she had left behind.

“Why are you doing this?” She asked.

“You are too young to die.” He responded.

“You have taken younger, why are you hesitating?” She asked.

“Because you have a choice to live, take it.” It was as close to a plea she had ever heard him make.

Alyssa shook her head.

“Let me show you something.” She reached out for his hand, “take me back.”

Suddenly they were back at the hospital again and her broken body was before them, her parents were still arguing with the doctors and Penelope was sat in the corner, doing her homework, but every so often she would look up.

“Listen to them,” Alyssa said softly.

“I know what I said but I can’t bear to give up on her, I want to keep her on life support for as long as possible!” Mum said angrily.

The Doctor sighed.

“That’s fine Marianne, it really is, but Ally will still be in pain, we are talking about multiple organ failure, she’ll be in constant pain until the end, if she doesn’t want to prolong things –”

“She’s eleven for Christ sakes! What does she know about a decision like this?!” Mum said.

“We will not take any action without your consent, but –”

“You’re damn right you won’t!” Mum said and she glared at Dad who hadn’t yet spoken.

“We won’t, but,” Doctor Anthony said slowly, “please re-consider, think about it from her point of view –”

“I am, and she is a child!”

“For a child to even be considering this option, says something about her mind-set, she’s spoken with the therapist –”

“I don’t care whose she’s spoken with, who in their right mind would sign off a child on their decision to die?” Mum said glaring at Wilson, the therapist, in disgust.

“We don’t want to upset you anymore,” Doctor Anthony said placidly and she and the other Doctors left the room.

Mum burst into tears as she turned to Dad, and Alyssa watched them with a lump in her throat and a heavy feeling in her chest. She looked up, but her companion was staring at her parents with a sad look in his eyes.

“See how much pain I cause them, and I’ll only cause them more and more, even after I’m gone I’ll cause them pain, so why should I prolong things any more than I have to. Every day I will be in pain, and they’ll be miserable watching me in pain. I can put an end to this right now, right here, I can choose, I can die and set them free.”

“You are too young, to speak so easily of death.” He said turning to her.

“I wouldn’t speak to death if death didn’t speak back.” She said.

She could already feel the pull of her body again; she had been away from it for too long.

“Think about it,” she asked him, as she slipped once more into her body.

“I will if you will.” He said before he vanished.

The monitors began beeping as soon as Alyssa fully merged with her body. She didn’t know how she could forget this level of pain, she gasped for breath even as the tubes fed her oxygen, was in agony even though the medicine numbed out her body. She felt pressure on both her hands and she slowly opened eyes, it was funny how much such a small movement cost her, when she had walked and talked so easily in spirit form.

“Penny?” She asked softly, her vocal cords raw and rough from abuse and disuse.

“I’m here,” Penelope said from the foot of her bed, she was blinking rapidly and Alyssa felt herself beginning to cry before she stopped herself.

“Mum,”

More pressure on her left hand.

“I’m here baby, I’m here,” Mum said, her voice thick with emotion.

“Dad?” Alyssa tried to turn her head, but the movement was too painful and she stopped as she felt a tear slip down her face.

“Shh, don’t move Ally, I’m here.” Dad said softly kissing her right hand and he pressed something on the machine so it would give her another dose of medication.

“Please, please, I can’t do this anymore,” she paused as she took in a ragged breath, “you have to let me go, please let me go.” She pleaded, and she felt the tears rolling down her face.

“Don’t ask that of us Ally, you don’t know what you are saying.” Mum said crying.

Alyssa looked at Dad, after weeks of asking, they had both agreed with her yesterday.

“How can I let you go?” He asked, tears in his eyes.

“I understand,” Penelope said slowly, “I don’t accept it, but I understand.” She wiped furiously at her face.

Mum began to cry harder.

“You have to fight Ally, you have to fight this.” Dad said squeezing her hand a little harder.

“I have, and I’m tired, so tired. Please, I don’t want to fight anymore, I just want to rest.” Alyssa said slowly, her speech was slurred as she felt the effects of the increased dose.

“We want more time.” Dad said.

Alyssa tried to shake her head but her eyes were closing as the medicine overtook her compulsion to stay awake.

*

Alyssa came awake slowly to the sound of hushed but urgent voices.

“Just let me just hold her in peace.” Mum said.

“I know you do, but I can’t watch her dying before she actually dies.” Dad said sadly.

Alyssa tried to open her eyes to tell them to stop.

“She’s only a child, she…she can survive.” Mum said desperately.

“Stop this, she’s dying and,” Dad cleared his throat, “she wants to die, and as hard as it is for me to even consider, I have to let her go.”

“No, no, I need more time.” Mum said.

“We always knew we were living on borrowed time, eleven years, the Doctors didn’t think we’d even have one. Her sickle cell has ravaged her enough, we were only burrowing her from heaven, but we have to give her back.” Dad said.

Alyssa felt herself drift into unconsciousness.

*

Alyssa woke up again, she felt oddly peaceful as she opened her eyes and she saw the dark figure at the door.

“You’ve come for me?” She asked hopefully.

A slow nod.

“Say goodbye.” He said softly.

“I love you and thank you” she said looking at Mum, Dad, the doctors and nurses then finally at Penelope.

There were tears everywhere.

Alyssa smiled as she felt her eyes flutter close.

 

 

Short Story: The Longest Bus Ride

I opens my eyes, I’m not awake, but this isn’t sleep. I’m drowsy but my mind is focused. A jolt of electricity rushes through my body. The pain is powerful; like a whispered secret in my ear. I control the trembling by concentrating on the noises washing over me. The whispers and the silence. The movements and the stillness. Another jolt, the pain wants my attention. I focus for a moment, and really try to feel. Should I be alarmed that I knows this much pain? But it’s like music, da dum da dum da dum, with every pump of my heart, fresh pain. I marvel at the body’s ability to endure so much, it’s like war and I have not yet learnt how to lose. I suck in a breath. My moment of weakness has cost me as someone turns to look.

Concern? Fear? Suspicion?

I wants to explain; I opens his mouth, then closes it again.

More attention from the stranger.

A splash of water on my trembling hands. I forgot about the tears.

I jolt in my seat as the bus stops, my eyes flutter momentarily and I almost lose control of the reins. The stranger gets up and with one last look leaves me.

I’d feel relived but all my body knows is the pain, all my feelings and all my mind. The whole world is pain.

The pulsing in my head blurs my vision for a few moments and my body stops taking in oxygen as panic seeps through vulnerable thoughts.

My stop is fast approaching and I prepare my body for what I’m about to do, but obedience will not be had and the pain ups the stakes.

It’s my stop, my eyes strain as I gazes at the open doors slowly closing.

I lurch out of my seat, my ears pick up alarm from the other commuters but all I know is the exit. I stumble but I do not fall.

Slowly I’m made aware that the bus is not moving despite my presence on the pavement. I’m being looked at but I have no time for them.

I’m single minded in my need to get home. Every step is absorbed by my body.

Stopping never occurs to me.

Something more important is demanding my attention and that’s time. I can feel the countdown scarping against my bones. The beat is obnoxious in my eardrums.

I’m through the front door.

Alarmed voices and softly spoken words. I’m at the centre of the calmest storm.

My body wants to give in and I’m tempted but peace will not be found at home.

The wait almost breaks me but I endure another ride on a different type of bus.

I’m lying still; the screams are so loud but I can’t open my mouth to voice them. The pain doesn’t no defeat but nor do I.

The Hospital is close but I know the pain is in my lifeblood, my very DNA, my sickle cell anemia.

Short Story: Dr Luella Lee part 3

Name: Valery Asante

Occupation: Student

Age: 15

Evaluation: Miss Asante is a bright young woman, who has been diagnosed with a rare blood disorder. She has attempted to take her own life several times, in the past. It has been a little over a year since she has tried to kill herself. She has had several questionable therapists in the past, one who tried to abuse her. Due to this reason she has trouble opening up to therapist, and people in general, but if she is to be cleared to attend secondary school she must come to therapy twice a week.

The patient

“No, I haven’t tried to kill myself.” Valery says softly. “I am handling it. Don’t worry. I have finally accepted my fate, this is who I am.”

“I heard you were having trouble with your medication.” Luella replies gently.

“I just don’t like being on so many tablet they…” she closes her eyes briefly as she takes a breath “but I am being a good girl, don’t worry.”

“Do you think I should be worried?”

“No.”

“Miss Hill, I just want to get to know you.”

Valery stays silent.

“Why don’t you tell me about your day?”

Valery stays silent and refuses to answer any more questions; she walks out of the room at the end of the session with a simple nod.