As the new year approaches self-reflection is natural and setting goals is an almost mandatory practice. It’s usually the first thing people ask after wishing you a ‘Happy New Year’. Some view a new year’s resolution with a certain derisive scepticism but I find it a popular yet important tradition to continue to strive to be better and improve every year. Despite the fact that New Year’s Resolutions may not always make it through the year, and that we inevitably begin to doubt ourselves or take on the doubts of others, we can find strength and inspiration if we just remember the past.
Some really remarkable things happened in 2018 affecting the african diaspora but let’s start off by addressing possibly the highest profile source of representation inspiring the african diaspora globally.
Black Panther was awe-inspiring, beautifully written, intentionally intersectional, an almost all-black cast, a visionary black director and A MOVEMENT. The film did not only inspire and affect the film industry but addressed xenophobic, anti-black and sexist sentiments that became more prominent due to the socio-political climate in 2018. The cast on their promotional run went on to initiate important conversations about representation, the effects of colonialism, xenophobia and pan-africanism.
In sports, LaBron James opened the I Promise School, his vision is to house 240 underprivileged kids in his hometown Akron, Ohio. When he was growing up James missed 83 days of school in fourth grade because his family did not have a car several families offered their support and the following year he started playing basketball. He wants to create a family environment and hopes the school will help kids who are falling behind in education and struggling at home.
There were some amazing pro-black literary advancements in 2018 such as: Becoming by Michelle Obama, Brit-ish by Afua Hirsh and Rise Up: The #Merky Story so far by Stormzy. As a collective, all three books are inspirational and clear evidence that it is possible to follow your passion and succeed.
Becoming was a necessary read and a prime example of just how far education can take us. Michelle Obama’s beautiful and frank account of all the sacrifices it takes to succeed and all the setbacks and pitfalls that as a woman, especially a black woman you will have to, unfortunately, be willing to face in order to push through.
Brit-ish was an illuminating read and Afua Hirsch didn’t pull any punches or shy away from the questions that many find difficult and sometimes even awkward to address though necessary if we ever want to achieve a truly equal society. Brit-ish teaches us that when it comes to race, ignoring the truths that are sometimes glaringly obvious won’t solve it.
Rise Up, by Michael Ebenazer Kwadjo Omari Owuo Jr (or as we all know him ‘Stormzy’) as the title suggest the book was an account of his rise to fame, his story and his message is so important for our generation to know and understand. Stormzy has been very vocal when it comes to the misrepresentation of black youths in London, his opinions about the government and his dedication to levelling the playing field. He has not only launched a Cambridge scholarship for black students, but also a new publishing programme: #Merky Books an imprint of Penguin publishers. His commitment to helping others in the black community is a perfect representation of a good role model.
So as we continue in the New Year, it’s important to remember that we are capable of so much and that we have achieved so many things and will can overcome whatever is placed in our way. This year, you can be your own source of inspiration and when you need it; look to others for it. I implore you to remember this inspiration, the way it made you feel, what it made you believe in, how it led you to act and what it changed about you. In 2018 I will always remember how I felt, the things started to believe in and how that led to set-up a platform for gamers of colour and spread awareness about the lack of diversity in the gaming industry. I set up Melanin Gamers in late October to champion this cause and bring together a community which I hope to grow into a wider community.
Hello and Happy New Year everyone.
I will be posting much more and as a testament to this please pop over to legacy events who kindly asked me to write an article for them about inspirational pro-black role-models.
A Conversation with Death
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 sisters 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.
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.
What is Sickle-Cell Disease?
Sickle cell disease (SCD) is an inherited condition that affects the red blood cells and various organs in the body. SCD affects the production of a protein called haemoglobin that carries oxygen throughout the body.
Each person inherits two haemoglobin genes, one from each parent. A normal gene will make normal haemoglobin (Hb). Sickle cell genes produce abnormal haemoglobin (HbS) which causes the red blood cells to change from a soft doughnut shape to a hard, sticky and sickle shape [like a banana].
Sickle cells can get stuck in small blood vessels and block the flow of blood and oxygen to organs within the body. These blockages can cause many problems.
The most common types of sickle cell disease are haemoglobin SS, haemoglobin SC, and sickle beta thalassemia.
Potential Health Problems of people with sickle cell disease
The spleen helps the body fight infections. Sickle cells may get caught in the spleen, preventing it from working as well as it should. As a result, people with sickle cell disease are more likely to get infections. Children are put on antibiotics until their immune system matures.
Sickle cells do not live as long as normal red blood cells. This causes anaemia (a low blood count). Anaemia can cause weakness and fatigue.
Sickle cells that get caught in the small blood vessels of the body cause the interruption of oxygen and blood flow; these ‘sickling’ crises can be very painful. This includes pain and swelling of the hands and feet.
Acute Chest Syndrome
Blockage of the flow of blood to the lungs can cause acute chest syndrome (ACS). ACS is similar to pneumonia; symptoms include: chest pain, coughing, difficulty breathing, and fever. It can be life threatening and should be treated in a hospital.
Sickle cells can clog blood flow to the brain and cause a stroke. A stroke can result in lifelong disabilities and learning problems. Children under 16 are at the highest risk for stroke.
Living with Sickle-cell
Pursue a Healthy Lifestyle
Like all people, you should strive to maintain a healthy lifestyle that includes:
» A nourishing diet
» Enough sleep
» Regular physical activity
» People with SCD often tire easily, strenuous activities should be avoided.
Prevent and Control Complications
Avoid situations that may set off a crisis. Extreme heat or cold, as well as abrupt changes in temperature, are often triggers.
Avoid overexertion and dehydration. Take time out to rest and drink plenty of fluids.
Support from family, friends and professionals
Like any other chronic illness sickle cell is difficult to live with. It is important to ask for help and talk to your family and friends. Receiving help and advice, sharing experiences and meeting with others with sickle cell disorder can be beneficial to you.
What is Sickle-cell trait?
Sickle Cell Trait (SCT) is an inherited blood disorder.
It is important to know if you have sickle cell trait.
Sickle cell trait is inherited from your parents, like hair or eye colour. If one parent has sickle cell trait, there is a 50% (1 in 2) chance with each pregnancy of having a child with sickle cell trait. Sickle cell trait rarely causes any health problems. [Not enough is known about SCT to definitively state that it doesn’t cause health problems]
Potential Health Problems of people with sickle cell disease
This is a yellowing of the eyes and skin. It is painless and occurs because of rapid breakdown and death of sickled red blood cells.
Living with a lifelong chronic disease can cause a multitude of social, economic and personal problems.
Complications during pregnancy
A woman with sickle cell disease can have a healthy baby. However, risks are involved; both she and the baby should be closely monitored by a healthcare provider. Prenatal care is very important!
Other problems include:
» Chest pain and trouble breathing
» Organ damage
» Painful erections in men
» Blood in the urine
» Eye disease