THE CRIMSON LOVE: by Udy Osaro Edobor

I had a reputation for sleeping with anything in skirts. Girls threw themselves at me shamelessly and I took advantage of it big time. It's not my fault that I'm such a fine man. I was a player and girls were my play thing... you're not far from the truth if you call me a bad boy but hey, don't hate the player, hate the game. 

Anyway, I met Nkasi and my perception about the opposite sex changed drastically. It happened that I needed someone to do the interiors at my house and she came highly recommended. This chance meeting marked the beginning of things to come.

I was used to ladies undressing me with their eyes or ogling over me but not her. She didn't even do a double take or give me a second look. She was very thorough and professional. I even tried to flirt with her but this girl barely noticed me. I wasn't used to being treated as if I was invisible... I was used to receiving the celebrity treatment but here I was being treated like a nonentity. Kai e pain me sha. This was a first for me. It was a challenge that I was willing to take on.

By the time Nkasi and her team were done at the house, I was convinced that I liked her a lot and she wasn't someone I wanted to mess around with. She was different. She was not like any girl I've ever met and that was a huge green flag as far as I was concerned. 

I tried to woo her, as a matter of fact I tried every trick in the book to get her attention to no avail. It took me all of two years, three months and six days of persistence and consistence before I could get a date with her. This was the longest I've ever had to talk to any girl to go out with me.

It beats me how I was able to sit across the table from her without thinking about taking her to bed. I even shocked myself. I enjoyed how she stimulated me intellectually and mentally. There was no way in the world I was going to let her go. She was a keeper.

That first date was beautiful and it led to several others but Nkasi still refused to be my girlfriend. She continued to friend zone me even when she knew that I wanted more. I knew she liked me, It was obvious from the way she smiled when she looked at me yet she was afraid to commit to a relationship and I was willing to wait until whenever she thought she was ready. She would be worth the wait. Days ran into weeks and weeks into months and I was loving her more. I was addicted to her and I needed her the same way I needed oxygen to survive. Anyone that knew me could tell that I was a better man and it was because of her.

We were celebrating our first year "friendship-versary" over dinner. Nkasi had earlier informed me that she had something to tell me. I was eager to hear what she had to say and I made up my mind that nothing she said was going to stop me from loving her.

Dinner was lovely until Nkasi told me that she was a sickle cell warrior and the issues with her health discouraged her from having any serious relationships. I didn't believe her at first but I knew she would never lie about such a thing. This was a hard bone to chew but it wasn't going to stop me from loving her anyway. Nkasi looked healthy. She didn't have any of those traits that gave sickle cell warriors away. It was a tough one but I still loved her regardless.

I assured her of my undying love for her. I was in it for the long haul and nothing was going to change that. I'd never turn my back on her no matter what.

My darling Nkasi hardly fell sick but whenever she did, it was always like a battle for her life. I wanted to protect her at all cost. I wanted to be there whenever she was in pains. I wanted to be there through thick and thin. I never wanted her to be alone. I wanted to do forever with her so I proposed to her. Of course she turned it down. Nkasi did not want to be a burden to me. She also knew how much I love children and she wasn't ready to bring any child into this world to suffer. I understood her fears. There were high chances of having one or two sickle cell kids considering both our genotypes. I had to make her understand that I wasn't with her because of children. I loved her too much to make her go through more pain than she was already experiencing. It took a while to convince her before she agreed to be my wife and it was the best decision I ever made because she gave me the best 35 years of my life. 

Our two adopted kids were divinely sent to complement the peaceful and loving home we had. They were our special gifts from God. Some biological kids could never compare or measure up to my children. They were an absolute delight.

As the years went by, it became clear that my Nkasi's strength to fight was beginning to wane. She woke up one morning and everything that could go wrong started to go wrong. She was slowly losing her hearing, then she couldn't walk properly because of the wear and tear of her bones and joints due to chronic pain over time. 

One day, Nkasi fainted at home and had to be taken to the hospital. Just as we had seen in recent times, she had become anaemic (again) and that called for the routine blood transfusion. I watched helplessly as my wife deteriorated by the minute. And little by little she began to lose her speech but not before she asked that I get our children and grandchildren to come visit her. My once vibrant and lively wife was in a vegetative state and I knew it was just a matter of time before she left me. I knew her condition was bad but after she was diagnosed of multiple organ failure, I kept asking myself how much worse it could get. All we had to do was watch and wait until the inevitable happened.

Nkasi was a indeed a warrior and even though she was weak towards the end of her life, she really put up a brave fight until she took her last breath. She died in her sleep surrounded by the people she loved the most. I am grateful for the life she lived and for the years we spent together. If I could do life all over again, I will definitely do it with her.

- Written by:

Udy Osaro Edobor.

udy1717@gmail.com

SICKLE CELL: An Interview with Mrs. Tola Dehinde

CONTENDING WITH SICKLE CELL DISORDER IN NIGERIA 

On the seat for the session: ‘Contending with Sickle Cell with DISCON’, we present to you Mrs. Tola Dehinde, a humane Warrior, Advocate, Author, Blogger and Punch Newspaper columnist to share interesting perspectives on Sickle Cell and her life living with it.

Enjoy the interview.

SICKLE CELL: An interview with Dr. David Owoeye

CONTENDING WITH SICKLE CELL DISORDER IN NIGERIA 

As advocates, nonprofits organizations, coalition members, caregivers and stakeholders intensify efforts to tackle and stem Sickle Cell in Nigeria, we bring you an interview with Dr. David Owoeye, a Sickle Cell Warrior who's a medical practitioner, advocate and author in commemoration of World Sickle Cell Day..

- by: Tayo Faloye.

ENJOY THE READING...

PROTECTING FUTURE CHILDREN FROM SCD (2)

- By Tayo Faloye

...in her bid to be separated from him and the drama that ensued, family members had to intervene and were asked to see a Pastor. They obliged. A pastor was consulted. He requested their personal details for use in seeking God's face on their matter and asked them to come back days later. On the return visit, Pastor proclaimed God told him during prayers they are destined to be spouses. The rest is history. 

PROTECTING FUTURE CHILDREN FROM SCD (1)

- By Tayo Faloye

Recently, on a visit to a Veterinary outlet, I discovered one of the young boys that works there wasn't around, so i asked after him from the Veterinarian. I had taken an interest in the young dude whom I immediately knew was a Sickle Cell Warrior from the very first time I set my eyes on him. When engaged in a bid to create a bond and draw him closer, he vehemently denied being a Warrior. I laughed but went ahead advising and encouraging him nevertheless.

Sickle Cell Pain Crisis Suppression

- By Tayo Faloye, 06-07-22

Woke up to some cracklings and discomforting frictions in my hips and thighs. I could feel a crisis trying to rear its ugly head. The experience isn't new. It's been raining for days. Today's is a bit intensified. Change in weather is one of the triggers for Sickle Cell Crisis. 

I decided to stay back at home as a preventive measure without informing the family before they'd all gone out for the day. Contacted my staff not to expect me at the office. Prepared my dogs food, set her loose to go poo, and stayed back for awhile to watch her run around under the rain playing with relish before ordering her back into her crate to eat. 

Discriminations Against Persons with Disabilities

It's good the plight of former Governor of Nasarawa State, Mallam Tanko Al-Makura, over his aspiration for his party's chairmanship position as a hearing impaired person is bringing this topic to the fore.

If a two term ex-governor, and currently a serving senator could be facing alleged discrimination in his party because of his disability, we can imagine what the common man with a disability faces in eking out a living for himself. I know this from personal experience as a sufferer of Profound Sensorineural Hearing Loss due to Sickle Cell Disorder. Getting anything achieved has been tortuous as a result, but not impossible. I wouldn't bore you now with details. My book will do the needful in due course. I can only but Thank God for the strong-will to keep going.

WREATH2WARRIORS: In Memory of My Friend from Childhood

 by: Tayo Faloye.

He had just concluded his mandatory one year NYSC programme and returned home to Lagos from Benue State. He had plans to return back there someday. He had fallen in love with their ways of life.

Before his final discharge from service, he would regale us with stories of the beautiful culture of the Benue people, anytime he came home on break from service. He was a school teacher in a remote village.

Knowing he was finally back home, we (myself & another close friend) visited him to catch up on gists as usual. Behold, we met him ill. He was having a pain crisis. His condition dampened my spirit. Just like myself, he was a Sickle Cell warrior too. He was one of my closest friend and was two years ahead of me in university then at LASU. He had more bouts of crisis than I did. We stayed with him for a couple of hours and promised to return later in the evening to check up on him again as he was being attended to by his folks in the house.

Discovering he wasn’t getting any better on our return visit, we billed ourselves to raise some money and set out for a nearby pharmacy to buy some drugs to help relieve his pains. He could hardly talk. We stayed by him into the night and promised checking again the following day.

As early as about 5am the following morning, I was awoken that my friend, whom we had gone together to visit our sick friend, wanted to see me outside. Still feeling sleepy, I drowsily made my way downstairs to see him. Looking sullen, he said: “Muse is gone.”

I screamed and spontaneously sprung into a sprint down to our friend’s house, which should be a distance of about 400 meters. Can’t recollect if I wore a slippers or not. Meeting his lifeless body, my mind went riotous as I stared at him lying there free of pains and worldly worries. There were doubts in my head if he was really dead. How could it have happened? Why choose this period to leave? Why wait till after done schooling and serving the nation? Did the drug we bought react, which is my own personal pain relieving crisis medication? Was it negligence? Why succumb to this when he had surmounted worse crises? I wept in disbelief as questions swirled in my head. Just like that, my childhood friend, health discussant, knowledge exchange companion, a brother from another mother and Scrabble game playing partner was gone never to be seen again? Who would fill his void? Tears cascaded down my face in effusive torrents.

The news of his death was already making the rounds as the morning aged and brightened. Sympathizers trickled in. It’s a Muslim family. We were asked to leave the bedroom for the sitting room. I buried my head in my hands and wept out my soul like a baby.

What could I had done better to have saved him? He didn’t seem like he was in the red zone. My mother, who had always risen to such occasions for me and my friends in those days whenever in a precarious situation had already retired from the banking sector. On two occasions in the past, she had had him put on hospital admission at the Golden Cross infirmary, Festac Town, during his crisis periods, given a blood transfusion once and footed both bills lovingly. But this his particular crisis that saw to his demise caught everyone unprepared. It was sudden and brief. Couldn’t imagine the anguish of his aged parents who had toiled to see him come this far, medically and academically, only for him to lose the battle at the point he was at the finishing line. I thought of the emotional trauma his siblings would be passing through. It was a heart-wrenching period.

Another of our friend, a born-again Christian and pastor in the making, who lived within proximity heard and rushed in with bible in hand, agitated. He demanded to be given space in the room for prayers. He was adamant our friend wasn’t dead and would be brought back to life. He was obliged to exercise his faith alone in the room with the body. He sang praises, prayed, rebuked, commanded, quoted the Scriptures, bound the devil, wept, wailed, whimpered and all. His faith was contagious and made me hopeful for a miracle like that of Lazarus in the Bible. Anything to restore my friend back to life was welcome. But it never happened. Our friend was far gone to the great beyond. Obstinately, he held on to his intercessory prayers as time wore on until he was compelled to leave the room.

In procession on different canoes, paddling across the river to Ibeshe Village, where they hail from, for his burial, I could find no more tears to shed due to dehydration. My system was dry from weeping, with deep bilirubin stained eyes. Weakness and numbness engulfed me as he was laid to earth according to Muslim rites. My co-warrior had finally bid me goodbye, leaving me in the battlefield to continue with the struggle. The battle which rages on and far from being won. A battle that has even become fiercer than ever, but for sure, victory is ascerta.

For you all warriors who had lost the battle to Sickle Cell Disorder, we fight on for your memories. We relent not for us who are in the heart of the battle. We trudge on to prevent more humans thrown into the battlefield. We brave on assiduously to stop more casualties. We shall salvage humanity from the scourge of SCD regardless how exhausting, gut-wrenching and long-drawn it takes.

Rest on my friend & brother, NURUDEEN MUSE. It’s two decades you have been gone now.

As we draw the curtains on September, the Sickle Cell Awareness Month 2019, we make bold to tell the world that Sickle Cell Disorder is real and hope for a cure in the shortest possible time. It’s not a death sentence neither is it anything to be toyed with. Endeavour to know your genotype today. And, do so at 2-3 laboratories to be 100% sure. Also ensure children are made aware about their genotype and the compatibility dynamics from primary school age. When we all join hands to do this and much more, Sickle Cell would be largely curtailed and relegated.

Thank you & God bless.

– Tayo Faloye,
DISCON (Disability & Sickle Cell Organization of Nigeria).

ACIDOSIS & SICKLE CELL CRISIS

DIET INDUCED CRISIS IN SICKLE CELL WARRIORS

Learn about Acidosis and how to stay free from Diet-induced crisis, mostly body aches, once it is triggered...

AL-AMEEN'S DEATH CAME AS A RUDE SHOCK

 Public Notice:

The 3year old sickle cell boy, Al-Ameen Shoneye, down with a stroke in 2018, whose plight we took up and shared to source for funds to save his life, and whom you kindhearted people rose to the occasion by donating money to the tune of over half a million (N575, 000) or thereabout for his medical treatment, had DIED.

GOOD NEWS: Al-Ameen Discharged from Hospital

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DISCON is happy to inform you all that Al-Ameen has been discharged from hospital on Tuesday, 4th December. We were reliably informed by the boy's father, Mr. Shoneye.

NOTE OF GRATITUDE: N520,000.00 RAISED IN DONATION

Re: Save A Toddler's Life

#HopeForAlAmeen

Recall we brought to the notice of the public the story of a three year old Sickle Cell Child, Al-Ameen Shoneye, who is down with a Stroke and needs over N1m to be transferred to a ICU and get suited urgent medical attention?

The GOOD NEWS is that we have been able to raise N520, 000 from kindhearted individuals who responded to our distress call for help. We wish we could mention names but they had informed us they would rather remain anonymous.

SAVE A TODDLER'S LIFE

#HopeForAlAmeen

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https://web.facebook.com/discon.ng/posts/710456942663753

Al-Ameen Shoneye is a 3 year old patient of Sickle Cell Disorder who is presently suffering from stroke and lying critically ill at the Federal Medical Clinic (FMC) Idi Aba, Abeokuta, Ogun State. He was referred from the Sacred Heart Hospital, Abeokuta where he was on admission for over a month.

Al-Ameen's doctors recommend taking him to the Intensive Care Unit immediately in addition to urgent blood transfusion among other treatment strategies. Sadly, there is no money any longer for his treatment as his father has expended all his resources on his sickness. The boy is really in dire need of expert medical attention urgently.

LET’S STOP THE SICKLE CELL CYCLE

By: Tayo Faloye, February 21, 2018

We found ourselves at LASUTH early in the year via another hospital referral for my son. Thought I had unburdened for January by hurriedly paying up my kids school fees in December. Life!

So, I was sitting at the reception area. Wifey and son were with the doctors in the examination room. As I busied myself with my phone in wait, a loud shrill jolted me to attention.

A VISIT TO TEENAGE WARRIOR

On Good Friday, April 14, 2017, prior to the establishment of DISCON, Mr. Tayo Faloye, was able to fulfill a promise he’d made the previous month by paying a visit to the home of a 12 year old Sickle Cell Anaemic boy, 

PREAMBLE TO DISCON

 

Based on the personal experience of one the Trustees of this humanitarian organization as a Sickle Cell Warrior who lives with a disability as an offshoot of the debilitating effects of the disorder, the vision to birth DISCON was conceived.