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‘Sickle cell disease is a lonely condition to live with’ 

I COULD’VE DIED LAST NIGHT!

As my tissue and vessels are stabbed and ripped, it’s a struggle every day just not to lose grip. I’m running on the inside while standing still the outside, but at least I didn’t die last night.

Your blood is life-giving, my blood is life taking. I’m too weak to go and too strong to stay. Complacent by force, still it could be worse, I could’ve died last night.

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What you see is a smile, what I feel all the while is my body exploding from a pile-up. Piercing pain running through my veins, still I have to maintain my composure. It’s a very tough fight because it’s out of eye sight, but at least I didn’t die last night.

No oxygen to my body, the pain is unreal. If there was none to my brain, a stroke is what I’d feel. So I welcome the curse, because it could always be worse. Hey, I could’ve died last night.

You say I don’t look sick, when I don’t know how sick looks. You say what number is my pain, but it can’t be described in your books. You’re still not better? …is what you say. But my blood runs all year, every month, every day. Sympathy we don’t need, because we all bleed, just educate yourself and take a little heed. Silent for too long, just trying to be strong. Do you know I almost died last night?

How does it feel?

Your mind is not designed to comprehend the bind, still I entertain your curiosity and try to explain it sometimes. Take a glass, break it up and give it a good grind. Put it in a needle and shoot it through your veins, now the glass is moving, hows that for pain?

It’s slicing me up from the inside out, still I don’t let out a yell, scream or shout. The glass travels around, exposing tissue inside, but you think I’m ok just because I don’t cry. It gets stuck in my spleen and cant get out the other side, now my spleen is three times a normal person’s size. To keep me alive my heart works over time, yet God is still good cause I didn’t die last night.

When death becomes a welcomed option just to escape the pain, can you imagine living everyday with that on your brain? Of course it’s not cancer, so the supporters are few. They come and they go and you’re left with just you. No one believes me because I look just fine, but how about taking a look at the war on the inside. A war in my body, a war in my mind.

Could you… Would you be able to fight this fight?

I know I can and I will
Cause God didn’t take my life
Last night.

Hi my name is Ebony Mac, I’m 39 and I live Rochester, New York. I have sickle cell disease, which is a genetic blood disorder. Pain develops when sickle-shaped red blood cells block blood flow through tiny blood vessels to your chest, abdomen and joints. Severe pain is an emergency called acute sickle cell crisis, which can require hospital treatment and can even cause death without the right care.

It is estimated that each year over 300 000 babies with severe forms of these diseases are born worldwide, the majority in low and middle income countries. Approximately 5% of the world’s population are healthy carriers of a gene for sickle cell disease or thalassaemia, according to the World Health Organisation.

I write poetry as an outlet to deal with the pain. People tend to understand more once they read my poems than they would if I express it verbally.

I have been discharged from the hospital while still in pain plenty of times because my blood work “looked fine” even though the pain was excruciating. Some of my co-workers would visit me and/or send me cards, but after a while many supporters disappear because they expect you to get better but you don’t.

Sickle cell is a lonely condition to live with because you’re left alone a lot to ponder as to why you were chosen by God to live with this curse.

I have a strong faith in God and when doctors tell me to go on different medications and have surgeries that they think I should have, I research the potential outcomes and most of the time, I refuse. My faith doesn’t allow me to just succumb to this disease and let it overtake me.

I don’t take the pain meds for fear of potential dependency. I drink lots of water and pray healing scriptures to avoid crisis. There has been a low point earlier this year when I wanted to give up. The pain was so overwhelming, at that time, I wished that God would let me die because that was my only escape from the pain.

Since then, I’ve counselled others out of suicidal states and that was a revelation to me of my purpose. Since I have been doing so, my pain is gone. I take no pain meds, have no need of a support and have not been hospitalised in five months and counting. When before I was being hospitalised once every 3-4 weeks for 7-10 days at a time.

I believe that facing death has given me a different outlook on life and the things that are truly important like family and God purpose for keeping me healthy.

It’s a blessing. I don’t count it a coincidence that I’m right here right now.

Read more about sickle cell disease: Do nurses and teachers need better training and education? 

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Discussion

5 thoughts on “‘Sickle cell disease is a lonely condition to live with’ 

  1. Hello, am schola dzame also have sickle cell. It pains when no one understands the pain you are going through. I ve always been living a dilema cause l find it difficult to tell my boss what my condition as it will lead to him and some of my colleagues sympathize me which is something l dont need

    Like

    Posted by Schola dzame | October 3, 2016, 6:15 am
    • Hello Schola, My name is Kehinde and I featured in an article and founder and director of Sicklekan CIC.

      I must stress to you as a sufferer that is living with the condition the reason why sickle cell is at the back of the queue in regards to treatment, care and perception is because nobody talks about the condition. Its not about sympathy its about your workplace putting the necessary adjustments to cater for your working there. If you need more rest breaks, ventilation, allowances when winter comes etc. You are doing yourself and the millions of sickle cell sufferers around the globe by not speaking about your condition as its the first step to social change and understanding of the condition.

      First step is to talk to your employer and get them to book an occupational health review of your condition where they will put adjustments in place to support them to support you while you are working. Its not about sympathy its about getting the support that you are entitled to by law.

      If you do need to contact me or more information on what I do please contact me on http://www.facebook.com/Sicklekan or Sicklekan.info@yahoo.co.uk
      You can also donate to the cause via http://www.gofundme.com/sicklekan

      I’ll be ready and willing to help you in any query that you have.

      Hope you reconsider your stance and make sure that you are supported while you work.

      Like

      Posted by Kehinde Salami | October 5, 2016, 11:34 am
    • Hi Schola thanks for commenting. I hope one day you are able to talk to your boss about sickle cell and you receive the right support. Good luck!

      Like

      Posted by maryisokariari | October 6, 2016, 2:00 pm
  2. I have a 4 year old with the disease, it has been a challenge but with God we have been able to make it through..we are hardly in the hospital.

    Like

    Posted by Wunmi | October 6, 2016, 1:23 pm

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