Disclaimer: This is a very touching and inspiring read featuring Arrey Echi- a very good friend, a sickle cell fighter and advocate.
I live with sickle cell anemia. A genetic blood disorder which affects predominantly people from Africa, Mid-Eastern and Mediterranean descent, though migration and inter-marriages have seen it spread across the globe.
I was diagnosed when I was 2 years old. That means practically from birth, I have been on one form of medication or another; especially pain killers because sickle cell is a condition characterized by frequent episodes of excruciating pain which are called sickle cell crisis and which can be fatal and life threatening if not properly managed.
I grew up surrounded by love and support and because of this; I was sheltered from the stigma, discrimination and misconceptions directed at people living with sickle cell.
Not many sickle cell warriors are fortunate to have such a supportive and loving family and as such, the stigma and discrimination usually always cuts deep especially if it also comes from within the family circle.
There are three things you can do when life gets tougher. You can choose to wallow in self-pity, blame everyone for your woes or rise up and look for ways to handle the situation. There is a well-known saying that when life gives you lemon, use it to make lemonade. In my experience, I’ll say when life gives you pain, turn it into a purpose.
The journey of turning my pain into purpose began about three years ago. I love writing and after one article about sickle cell and stigma which I wrote online generated so much negativity towards people living with sickle cell, I decided to start speaking out, using my own personal stories and experiences to break the silence and debunk the myths around sickle cell. The purpose was just to write. Initially, I was naturally apprehensive about making my life an open book but I knew someone needed to talk about what it means to live with sickle cell. I also knew if we do not tell our stories, others will tell it for us and do so in all the wrong ways which would not help in dispelling the myths and taboos around sickle cell.
My blog, Joy2Endure was born out of this desire and also my sickle cell advocacy journey. Article after article and mentoring other sickle cell warriors and their families gradually turned the tide around as apprehension turned to fulfillment. The more I wrote on my blog and social media handles like Facebook, the more I could see how perceptions were gradually being changed and slowly but surely, people started talking about sickle cell. People began joining me in my activities… online color awareness campaigns organized yearly around June to raise awareness about sickle cell. Workshops on sickle cell, etc. It became very clear that the stigma and misconceptions were borne out of ignorance and mis-education of the public about sickle cell.
Mentoring a lot of sickle cell warriors to build up their confidence despite the sometimes challenging life as a sickle cell brings has been very fulfilling too.
Life as a sickle cell warrior is not an easy one. It is not easy dealing with pain on a regular basis for life. It is not easy having this pain disrupt your life goals because you sometimes have to make decisions with that in mind. It is not easy having this pain dictate even the smallest detail of your life like if you should wear that dress or go on that trip or that party or just go on and have a good life. And because of this, it can be very frustrating.
However, I learnt a long time ago that the anger, the frustrations, the disappointments, the financial burden, the broken dreams, etc will not make the pains go away and so instead of wallowing, I choose to rise and seek ways to deal with it. Instead of focusing on the pain, I choose to focus on the blessings that comes my way. Instead of crying why me, I choose to focus on the fact that it is me because I probably is the one capable of dealing with this unique life challenge. Instead of mourning over what probably never was, I choose to focus on the here and now and make the most out of it. Instead of focusing on the pain and feeling sorry for myself, I choose to let go of the pity parties and look at life beyond my pain. I decided to be the one in charge and not let sickle cell rule over me.
The choices we make in life determine on the most part, how we go about dealing with the challenges life throws our way. Staying positive doesn’t mean life is an easy ride. There are thousands of thorns in this journey, but positivity helps me see the roses and other beautiful flowers scatter along the path and so, helps me look for ways to constantly transform my pain into purpose.