S is for Survivor: Book reading and Tea Party

Sunday, 15 June 2014




I invited my cousin who is also a sickle cell warrior to attend the event with me.  We arrived early for the event and was met at the door by Samira, she welcomed us and we headed in to find our seats. But as it normally is at Nigerian events, there was ‘African time’. 

Whilst waiting, one of the warriors, Zulaha, walked around the room giving the guests a placard to take a picture with. I decided to indulge and participate as well. On it was written #Cellfie and #WSCD here’s a picture of me…

#CellFie and #WSCD (World Sickle Cell Day)
 After waiting for a while, and by then the room was packed, Nura another warrior gave the opening remarks. He talked about the life of a Sickle cell soldier, how they go through the same things we do but not in the same way. Being too happy or too sad can result in a crisis. He mentioned how sometimes people do not understand his pain or think it is exaggerated. 



Then it was time for the reading… Samira chose excerpts from the book that was dubbed as the most crucial part or as I like to say the core of the book.

 
Samira reading S is For Survivor


Sitting in a room filled with “soldiers”, family and friends, care-givers and well-wishers, Samira tells her story in an assured voice. 


“For a minute, I thought I had been abducted and was being probed by aliens. I was on a big bed in the center of a large room with glass sliding doors. My legs were propped up and kept immobile by pillows. Different parts of my body were hooked up to about fifteen machines that were beeping, displaying odd symbols and different LED indicators.”


She gives a vivid description of the beginning of her journey in Vienna. She tells us the story of a girl who woke up to find herself in a prison of some sort that she didn’t understand nor welcomed.  Thrust into a reality of hospitals, physio-therapies and alien-like machines, Samira had to find solace in the people she met and her books.


S is for survivor is the tale of a girl, not unlike most teenagers I know, and of whom I see a lot of myself in, A girl who loves Harry potter, sleepovers and hanging out with friends. But the difference is she has had a plethora of experiences that is unlike what most teenagers go through. She was able to win the battle, and ten years on share her tales of victory. (More on 'S is for Survivor' coming soon!!)



After her compelling read, Nura added to it by saying this of samira’s story 


“These words aren’t just stories, each word was a sharp pain in her system, she felt it to the point that she couldn’t walk, and she asked herself if she should give up.But she had a family praying and hoping for her recovery. This motivated her to keep fighting”



Another warrior, Zulaha, A 38 year old Sickle Cell soldier, spoke a bit about the fallen warriors (those who lost the fight to Sickle Cell). She then gave a brief intro about the Origin of Sickle Cell Disorder. It was first discovered in 1910 in the U.S when an intern for Dr James B Herring was sick. Dr James referred him to a hematologist who ran some tests and made the discovery. 

 

Zulaha’s parents upon her diagnosis went on a two month-training to learn about the disorder and effective ways of taking care of her. This shows the level of dedication and love that care-givers of the patients exhibit.


“Sickle cell disorder soldiers do not want to be called patients but warriors or soldiers”
 
Amin, Nura and Zulaha



Some tips given by Zulaha

How to take care for a warrior in crisis

  • Don’t Panic!!!!!!
  • Ask them for their pain medication and the dosage.
  • Ensure they drink lots of fluids and are always hydrated.
  • If the pain is dire, take them to the hospital immediately.
  • Don’t cry or show them pity.





Some Common triggers of Sickle Cell Crisis

  • Anemia
  • Infections
  • Anxiety
  • Inflation
  • Extreme temperatures
  • Malaria hence avoid mosquitos
  • PMS


At this point one of the guests said if he could ask Samira a personal question to which she replied in the affirmative. His question was along the lines of Samira giving a vivid description of what a crisis felt like. 

This sparked conversation among the warriors saying how it was
 "an indescribable pain and can’t be compared to anything." 
However, they asked if he’s been to an Abattoir and seen how the butchers break the bones of animals, just imagine that pain and double it. 

Another warrior said you should imagine continuously hitting your hand with a mortar, but imagine that in every joint of your body. 

Someone tried comparing it to childbirth, but then again, it was a man who asked the question. So I guess he wouldn’t know what the pain from childbirth is like. 

Zulaha then mentioned that a sickle cell warrior in crisis once said 
"she’d rather give birth ten times than to go through a crisis."

Now we may not be able to understand this level of heightened pain but we do get a picture. I guess pain cannot be put exactly in words. They really are warriors!!!!


Samira asked the man what his genotype was and he said ‘AS’, he added that the reason why he asked the question was because he had a son, Josh, who is SS and he wanted to have an idea of the level of pain his son goes through. His son cannot describe it to him because he is a child. I guess this shows that a father’s love has no limits.


Another warrior, Amin who is about to turn forty, said this

“Just like any disorder, SCD varies from patient to patient. Every patient has a different trigger and in his case it is Malaria and lack of ventilation/oxygen which causes two main things, infection and pain.”

He also said, As you grow older you realize that this is something you have to live with and as you begin to understand the pattern of your crisis, you try to avoid the triggers. I have been able to successfully avoid my triggers and hence I haven't had a crisis in three years. 
“SCD is a lifestyle” – Zulaha

An audience member asked why there aren’t Sickle Cell soldiers in the medical profession researching on the disorder as nobody knows best what they go through so their input will be most beneficial. 


Nura responded by saying he had always wanted to be a Doctor and that was the profession he was aspiring for until he got to SS1, when it dawned on him that it wasn’t feasible. 

To study medicine, you have to be 100% committed but an SCD soldier cannot do that because the disorder holds you back, plus the stress that studying medicine puts on a person is a trigger for crisis. 

Nura
Therefore he decided to go a different path and ended up in media, where he feels he is fully utilizing his potential and also helping bring awareness to SCD. He told us a few stories of himself whilst growing up, of moments where people believed his disorder will prevent him from accomplishing certain things. But he proved them wrong and ended up excelling at it. This shows us that just because someone has SCD doesn’t stop them from living a full life.


Through some questions I learnt that an AS person can also experience crisis, albeit not as severe as SS. In cases where your S gene is stronger than your A gene then it is more severe than the other way round.


To conclude the event, Zulaha told us how when she was in school, every exam - from primary up until she finished law school was written on a hospital bed. She always had crisis during exam period so she got admitted. But this didn’t stop her from accomplishing her dreams and becoming the person she is today. 

She also encouraged SC warriors and their care-givers to keep a journal of what happens during crisis, so they could use it to compare and figure out what works best for the soldiers.


A care-giver came out and said a few words that left an impact

“Take the message away, KNOW YOUR GENOTYPE!!! Let’s save the future, let’s end Sickle Cell.”

For more information


Samira Sanusi Sickle Cell Foundation

Twitter: @ssscfoundation
Email: ssscfoundation@gmail.com


The Sickle Cell Aid Foundation
 

Twitter: @Scaf_Nigeria

Tel no: 07030694141, 09093500097.


The SCAF is celebrating World Sickle Cell Day, check out the details below:




P.S: Stay tuned for an interview with the Author and Warrior of 'S is for Survivor' Samira Sanusi.

P.P.S: Quotes not ad verbum.


 with love,
meera
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