Body & Health

Living With Sickle Cell Disease : A Young Woman's Memoir.

   

It took his death to make me realize what he gave me.  He was my best friend, my confidant.  Far away in a strange land, he built on the foundation of faith he already had.  Despite the high cost of calling, I always wanted to talk to him and this I did diligently; not because I didnt have what to do with money but because I felt I had so much to learn from him with such short time.  Little did I know that the time I thought I had to learn from him would be shorter than I had imagined.  He was younger but he showed me how to reason positively even in the midst of so much negativity.  He taught me to be bold and to speak out; from him, I learnt the essence of humanity.

I lost my brother late last year; brief life he lived but full of fame for the lives he impacted with all the positive things he did.  I asked myself if I could be like him, live like him and get to use my talents to impact lives like he did.  Despite his pains, he made great use of his talents; something I have not been able to bring myself to do due to my so-called constraints.  Today as I pick up my pen, I mourn the demise of, not just my brother, but my confidant and best friend; I also celebrate a life so well lived.

My life, I can say is a mixture of pleasure and pain.  I noticed at an early age that I had always felt depressed and timid so I decided to study and understand myself.  I learnt my situation was genotypic.  So many things in life bring one stigma and being born with the Sickle Cell disease, I learned to live my life being overly conscious of everything I did and became completely withdrawn from everyone; I built a world for myself.  I cared so much about what people thought of me and gave maximum attention to odd questions they asked like “ why do have yellow eyes or why do you have such tiny fingers?”. I remember quite well in the past years of my life, I would breakdown and cry so much when these questions were asked.

Because of the seeming fear for brevity of life in people living with the Sickle Cell disease, most families, especially mothers, become antagonistic when their sons or daughters date or want to marry persons with this disease.  This was my case for so long.  Even after we did medical examinations to be sure we were compatible, I lost great relationships that I thought had bright futures due to antagonistic pressures from the guy’s family.  One was very recent with a medical practitioner who strongly believed we could make it work despite pressures from his family; but on my path, it was difficult to go into a family where everyone was totally against you as wife; so I had to put away sentiments and stop the relationship for my own good.

As I grew older, my confidence level grew.  My brother taught me to build my self esteem by always pumping great words into my life.  He made me see myself in a different light.  He told me often that I am what I imagine I am and so urged me to imagine only positive things about myself. I have composed so many songs which I never had the boldness to produce.  He always told me I could do it.  Now I am working on them because I have faith in myself.  So when I am asked those questions I used to feel embarrassed about, I simply see it as another opportunity to educate people about the disease I live with, how it can be avoided and how it can be managed.  I no longer see it as embarrassing.

I often tell myself, especially during my past crisis, that nothing has more power over me other than that which I give it through my conscious imagination; I learned this from my late brother.  I have not had crisis in such long while.  I stayed the past years without visiting the hospital.  I know it’s the power of He who created me, working with my new world of self esteem and positive mentality about myself that  I can do it and I can make it. In my life, I have learned to speak out loud, I am bold and I believe constantly in the creator of life in me.

Through the stigma society seemingly associates with this disease, I believe people living with this disease should find what gives them hope, and develop an inner strength by building a positive angle for themselves, avoiding any form of self pity and rather take any opportunity they have to educate the society on how this can be avoided.  As I write, I wish that people in the society, colleagues, spouses, friends, family, all who read this piece would also help fight against the seeming stigma this disease may bring. Let us show some more love to, and, be patient with those we know, we see who have this disease knowing that with complicated situations like these, emotions especially can never be predicted. As families and friends, let us be committed to them in the little way we can; trying to understand what they go through. We can help build their faith in life and what it can offer them.

Writer : Enigma

Photocredit: gettyimages


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0 Comments

  1. bomi@jollynotes.com'

    Bomi

    February 2, 2011 at 12:28 pm

    Beautiful Enigma – Thanks for sharing your experiences and your practical words of wisdom… Some of my favorite parts –

    “So when I am asked those questions I used to feel embarrassed about, I simply see it as another opportunity to educate people about the disease I live with, how it can be avoided and how it can be managed. I no longer see it as embarrassing…

    I often tell myself, especially during my past crisis, that nothing has more power over me other than that which I give it through my conscious imagination; I learned this from my late brother.”

    Thank you very much for sharing!:)! Stay blessed, Stay strong, Stay positive…I certainly wish you all the best in all that you do. I pray that God will continue to guide you and direct you every step of the way…just like I pray for myself and all my loved ones.

    Thanks again.

    ~Bomi

    • ejehi4luv@yahoo.ca'

      ejehi

      March 9, 2011 at 4:05 pm

      Enigma thks for the encouragment.i also had an experience like your’s and i know how it was.simply because of this disease i was pushed away by some one who loved me before. God has his way of making things good for us.am very sory for your brothers death.i pray we all suceed and fight this stigma in Jesus name.

      • mulemyu@hotmail.com'

        mulenga

        April 14, 2011 at 3:35 pm

        i live with the disease every single day and im very ashemd to say i have it. im only 19 years old and i feel like if i do tell my friends most of them will reject me and others will make fun of me.i feel like no body will ever love me and that il die alon.i sit in my room for hours and cry, because i feel with everyday i die a little…does this feeling ever go away??

  2. rahabmemoirs@gmail.com'

    tolulope

    February 2, 2011 at 12:43 pm

    Enigma,this is so touching and truthful and u re right to write ,sickle cell is not something to be ashamed of. Am so sorry about your brother,am at the same glad that he lived his life for God,that is the ultimate.sister,pls never stop holding on to God,He loves you so much and He is working it all out for you.

  3. enybeejesus@yahoo.com'

    Eno

    February 2, 2011 at 1:03 pm

    Everyone ‎​​ωε meet in life has a challenge and it takes seeing through the eyes of God to stand out boldly or live above them and this is one profound story.
    Personally, I do not put away Sickle cell patients,I still believe God can do the impossible on their behalf. Enigma, I trust God to make your story cum testimony an encouragement to all and sundry amen. This piece is awesome!

  4. arewa81@yahoo.com'

    omo'ba adeteju atanda-ajimotokan

    February 2, 2011 at 1:08 pm

    enigma, thanks for sharing!!!
    Very touching…

  5. bolajuwon2002@yahoo.com'

    ayobola

    February 2, 2011 at 1:18 pm

    but you didn’t suggest how it can be avoided n how you have been coping or your age.

    great piece all the same.

  6. luvaramide@yahoo.co.uk'

    Aramide

    February 2, 2011 at 1:26 pm

    Very touching story I did say. Its only when you faced with such situation that you can really imagine how it feels. Growing up could/is hell but the storm can be weathered. With loving parents who are conscious and educated of their kids situation a lot can be done. Also on the individual’s part keep hope alive, be happy always-stay positive. Like you said, Enigma you really need the courage and bravery to be able to push forth. Self pity aint it neither seeking for pity cos its depressing. After the hurdles of growing up, finding a life partner is another great challenge-there are many guys out their but so many shafts in the mix of wheat. Someone who understands, who cares, who is kind, responsible, loving and capable(wealth wise) also with a loving family. You aint asking for a hundred percent but atleast 60. It takes two to tango and it that HaPPINESS you find that keeps you going. Enigma, refering to your recent relationship which ended. I believe if both partners keep it to themselves(Only if the sickler is obvious looking) and act accordingly, I don’t think the family members knowledge later would destroy something good. Do not dwell on the past, if something is for you, it would always be for you-par la grace de Dieu. To everyone, he that’s not a sickler passes away, sickler does, its by Almighty Allah’s grace. There is a verses in the Quran that says from Him we come from and to Him we shall return also another one that says. He, Allah has not placed on man a burden he can’t help carry. Therefore, stay positive, work and pray hard. JUST LIVE ur Life!
    Aramide

  7. a.friend_1@live.com'

    Anon

    February 2, 2011 at 2:10 pm

    Thanks for sharing ur experience, its enlightening.

  8. ericalistens@yahoo.com'

    Erica

    February 2, 2011 at 2:51 pm

    Woh!This piece is lovely.Am touched.

  9. sameolg19@yahoo.com'

    Abisola

    February 2, 2011 at 7:25 pm

    Very well written…I am 27yrs old with genotype SS…The education is what we need, as even in this age, many people link ‘sickle cell’ to ‘death’…I actually was seeing a guy sometime last year with the same thoughts. His excuse for not being able to be with me was ‘ what if we get married and you die’…That was a bit short sighted cos sicklers DO NOT just drop dead. The condition can be managed.When I read write-ups like yours, I’m happy and it confirms to me that being a sickler is only just one of the challenges I have to face. And like other challenges, we will overcome! God bless you!

  10. Bussy72@yahoo.com'

    Olubusolami

    February 2, 2011 at 8:46 pm

    Very touching & educating write up!I gues i av an idea of what u r going thru!Am frm a family of SS history!My paternal g’ma had 6children out of which 4 were SS! 3 of them are dead but they all had children.The 4th one is still alive & is over 60yrs!He is a born again christain & he loves the Lord.Recently,he checked his genotype & it has changed to ‘AC’.I pray that your creator ll touch cos u r fearfully &beautifuly made& u belong to God!

  11. ogo.okonji@gmail.com'

    Ogochukwu

    February 3, 2011 at 8:08 am

    Thanks Enigma….I do not have sickle cell but in reading this, i have drawn strength from your words.

  12. miajiamah@yahoo.com'

    MAVIS AJIAMAH

    February 3, 2011 at 11:22 am

    MAY THE SOUL OF YR BROTHER REST IN PERFECT PEACE. IT’S JUST SO SAD THAT MOST PEOPLE LINK SS TO DEATH WHEN IT CAN BE MANAGED. IT’S SO GOOD THAT YOU HAVE WRITTEN THIS PIECE. YOU MAY NOT KNOW BUT YOU HAVE HELPED TOUCH A SOUL NOT ONLY AN SS INDIVIDUAL BUT THOSE FACING OTHER HEALTH ISSUES. THANKS FOR SHARING.

  13. adenike.omotoso@buckingham.ac.uk'

    Grace

    February 5, 2011 at 5:58 pm

    Thanks Enigma for your article. its very encouraging! Most of the articles iv been exposed to lately are about sickle cell. iv never really bothered about sickle cell anaemia until recently, when i started a relationship and found out my boyfriend’s genotype is SS. i was very sad and depressed at first, but then again i thought,what if it was me, what if i was born SS? i’m AA, so we are a good match.my only problem is i dont know if i want to tell my parents about his genotype.i don’t see myself leaving him cos of his genotype, but rather, iv read loads and loads of article on sickle cell and how to manage it. I wish more research would be conducted in this area and im seriously hoping for a miracle!!!!

  14. cathyidiong@yahoo.com'

    cathy

    February 8, 2011 at 3:43 pm

    I honestly don’t know much about this disease but all the same the write up is touching and i say lets stop with the stigmatization.

  15. chiliz722@yahoo.ca'

    Liz

    February 18, 2011 at 10:18 am

    What a touching write-up!
    Courage, Enigma! Nothing is permanent in life.
    I would like to use this opportunity to say a loud KUDOS! to this site for bringing to light topics usually swept under the carpet in our African society. I wish to see here articles on HIV/Aids, physical disabilities, FGM, Forced & teen marriages, rape, unemployment, natural black hair, albinism, autism, stuttering, inter-enthnic & inter-racial relationships, cosmetic surgery, skin bleaching, spousal abuse……….

  16. p.allenjones@yahoo.com'

    P.Allen Jones

    September 3, 2011 at 10:26 pm

    Keep speaking, the world is listening.

  17. aniekanukh@yahoo.com'

    Aniekan Ukoh

    December 13, 2011 at 7:47 am

    Lossing a dear friend and class mate and having dated a couple of Sicklers,I’ve many atimes seen,noticed how this friends of mine go into a shell of depression all of a sudden and this really doesn’t help,I really want to encourage any person who is an” SS”to have courage and Faith.
    Often thinking that what if I was an SS…hmm this gave me a rethink and helped me LOVE and CARE for all my friends who are Sicklers.I also want to say thanks to my dear friend Enigma for the courage to write this,you have in a special way inspired others and I pray the future be a sweet one.

  18. aniekanukh@yahoo.com'

    Aniekan Ukoh

    December 13, 2011 at 7:51 am

    And pls forgive me if I may have treated anyone badly,I only acted in ignorance.

  19. hardeysheun@yahoo.com'

    oseun

    January 25, 2012 at 11:45 pm

    Dis I̶̲̥̅̊s̶̲̥̅̊ §☹ overwhelming,pray GoD spare U̲̅я live to tell d̶̲̥̅̊ story.ℓ̊ Ħave SS arnd ♍ƺ ‎​Ąπϑ ℓ̊ knw wat U̶̲̥̅̊ guyz go tru during crisis bur Ħave seen 70+ SS pt dat ‎​α̲̅я̩̥̊ε̲̣̣̣̥ alive §☹ ℓ̊ knw its nt d̶̲̥̅̊ end of live.maritally jst Ħave faith same tins go Fø̲̣̣я̅ ‎​ AS its jst easier wen U̶̲̥̅̊ cum across AA bur Δξy ‎​α̲̅я̩̥̊ε̲̣̣̣̥ scarce.nevertheless kip bin optimistic abt life ‎​Ąπϑ Kudos to u

  20. saniyusuf87@yahoo.com'

    Yusuf Sani Yusuf

    February 22, 2012 at 12:24 am

    My SS girlfriend wants to break up our relationship as she discovers that I want to know more about the disease on the internet. I did’nt mean to embarrass her but rather to know more about the disease so that I can be beside her in managing the disease…but she understands my action differently, and now she is mad at me! What would I do to make her understand?

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