Arrey Echi was diagnosed with Sickle Cell Disease when she was only two years old. Some where along the line, she lost her ability to decipher sounds. Yet she is one of the most confident people I have ever met. So confident that some people consider her saying she is hearing impaired an alter-ego game. She is hosting no pity party and is so comfortable in her own skin. This is why her telling me of her impairment “just like that” was such an inspiring shock (if there’s anything like an inspiring shock).
Arrey gives a whole new meaning to the saying, “when life gives you lemons, you make lemonade.” She has not only made lemonade with the lemons life threw at her. She has made lemons look like oranges. Very sweet oranges! Recently featured on world renowned Time.com and a social networking site for women, Worldpulse.com, she is doing all she can to be a sickle cell voice. It was from her that I first learnt to address those who suffer Sickle Cell crisis as “warriors”. What a positive way of putting it! She wants the world to know that Sickle Cell is neither a death sentence nor witchcraft. Let me add here that it is neither contagious. She recently organised a successful workshop in Yaounde, Cameroon to raise awareness about Sickle Cell. The warrior writes to defy myths surrounding the disease on her blog, Joy2Endure.com.
I have never met Arrey physically but I feel like I have known her because we have bonded virtually like sisters. She is one of those people I imaginatively think I have met face-to-face. I just can’t explain when and how. Her sanguinity, poise and warmheartedness can be felt through her words.
I had a chat with her about what growing up with the SS gene entailed. She shares her struggles, her survival techniques and some sageness for the world. Lean in and enjoy!
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How old were you when you first discovered you were a Sickle Cell sufferer?
What was it like in school, growing up with the disease?
Sometimes, my friends and sisters helped me but copying was my middle name. I learnt to read ahead of time so that even when I was sick, I would still be able to write my exams. I hated pity and I never wanted people to feel I go ahead because of that so I worked hard and passed well. Unfortunately, I had to repeat my Advanced Levels because revising with intense pains was just not possible.
What’s the one thing you want people to know about Sickle Cell?
What are your major challenges?
The challenges are many and they range from physical to psychological. For example I have what I call my thorn in the flesh… an accident that happened while I was in high school and left me with an ulcer that recurs from time to time. I blogged about it in my blog post, “Warrior’s Stripes”. When it recurs for no apparent reason, the pain and financial burden are a major challenge.
What is it like being hearing impaired?
And when there is a party for example and people complain of noise and being unable to sleep, well, I don sleep me since like small pikin no stress. I don’t mind telling people I have this problem if I have to. I am comfortable in my skin and it doesn’t define me.
What are the circumstances that led to this?
How do you cope with your hearing impairment?
So with a hearing aid now, you could hear certain things if you choose to?
Any advice for families of Sickle Cell warriors out there?
While acknowledging the challenges, parents should also look for opportunities and talents of their warrior kids and embrace them. That way, they motivate their kids and the condition is easily managed. The challenges become stepping stones to a healthier, happy and fulfilling life for both the parents and the kids. This is because they make them feel they are NOT different from others. With just a little more love and understanding, parents will push their warrior kids to keep standing tall.
Oh my, this was such an inspiring read to me! I hope it inspired you too. No matter who you are or what you face, you can always live up to your potentials. Always! Just make sure you maintain a positive mind.
To further spread the word about Sickle Cell, please click one of the social media buttons above or below to share. Stories are keys that unlock others from their prisons so please don’t hesitate to click because someone on your timeline needs to read this.
Thank you so much for sharing your very powerful voice, Miss Arrey!
Now over to you, reader: Do you know anyone living with Sickle Cell? What are some of the myths about the disease you have heard?