It is September, sickle cell awareness month. Yey! We get a whole month! If only we could affect policy, change mindsets and such. We all do our bit, to brighten the corner where we are. I have been doing a bit on social media, retweeting and sharing other people’s stories. It is quite refreshing, all the information available to anyone who will spend just a little time to read. I especially like all the stories about strong black women living with sickle cell disease, having successful carriers and families. Sickle cell is really not all gloomy. You just have to look to see that a good number of us live relatively normal lives despite all the challenges.
I was all excited about sickle cell awareness month, then out of nowhere, tragedy struck. I was hit with some sad news. I read about the death of a 4th year university student. She was just a month to graduation. I carried out a little research, and turns out this lady was actually someone I attended elementary school with. She was a year ahead of me. On further investigating, I found out she passed suddenly after a short sickle cell crisis. Yeah, it does that, sometimes. I tried to get confirmation on this. I really had no memory of her. I resorted to facebook, and it was evident her death was sudden. No condolences, nothing. She had actually recently updated her profile picture. Now, what struck me, going through her pictures; that could have been me! I am sure most people had no idea she had sickle cell disease. She didn’t have the typical look, but wait, what is the typical look? That is a discussion for another day. She could have been some 90 or 100 kilos, full of life, fashionable, and suddenly she was dead. A month to graduation!!!
Of course, my condolences to her family, friends, loved ones, everyone who she was dear to. I can only imagine the anguish her parents must be feeling. A child, seen through all those years of life, education and just a month to graduation passes on. Sad! Then there is me, only child of my mother, father’s last child, medical student, big hopes and aspirations…Oh! Lord, spare me. I pray for long life and health. This is just one of the things we have to deal with, living with sickle cell. So much uncertainty! Every time I hear of another sickle cell related death, I’m shaken a bit. But hey, we will all die someday; let’s consider where we will spend eternity. Honestly though, tell me, when you hear a young person died suddenly, what do you think of? For me, first, road traffic accident, second, sickle cell. Definitely sickle cell.
A while back, a friend recounted her mom’s anger at another lady who had recently lost her son due to sickle cell disease. The boy was probably 10 years when he passed. As the mom of the deceased wailed uncontrollably, my friend’s mom was simply incensed. To her, this mother, was at fault. She caused her son’s demise. Subjected him to a life of disease and pain and ultimately death at a young age. I couldn’t understand why anyone will take such a stance. This mother needed sympathy not condemnation. Especially not at that time.
While at home, during my current Va-K-Tion, my mom and I had a chat. You know those mother-daughter conversations that daughters generally hate? Yeah! Suffice it to say, I am not having one of those ever again! So, we eventually got into a conversation about sickle cell, and my future. Her grand kids. mmhmm. Apparently, being the fussy person that she is, oh yeah, for those who know me, I truly am my mother’s daughter. Quite fussy myself. Knowing her haemoglobin genotype, she actually took my dad to get tested. Story has it that, everyone, ‘by the way, they already knew her, my mom is quite a popular person’ said she was too fussy. She should let it go. My dad was too well looking and handsome ‘he really is, no bias’ and healthy and such, to have the disease or trait. Yes, so they didn’t test. Then what do you know, I am six months old, falling sick a lot, pain in my fingers (that would be sickle cell dactylitis (hand-foot syndrome) [-extreme pain involving the hands and feet due to a block in blood circulation. Often the first symptom of sickle cell in babies.] Detailed family history, labs, the works, this would later prove that I have sickle cell disease. Thus the journey begun.
I was shocked, to say the least. Really mom! No really, am I the only one thinking SERIOUSLY? Like for real? Don’t get me wrong. Of course I love my parents. They’ve given me more than most, ensured I live as close to normal a life as possible. But, since normal is relative, I’ll say I have a pretty good life. I still got to ask, seriously? I could not believe what my mom was telling me. So here is the thing, my mom, is a nurse. A good one at that. She is smart, learns really fast, my dad, also a smart guy. So now, two educated people with adequate knowledge actually set out to get tested but didn’t? OK, so it was 1990, there wasn’t as much information blah blah blah, but my mom? She really knew better.
So will someone be right to be upset with my mom, if I happen to die young, just like the young lady I recently found out about, or that 10 year old boy? Well given this story I think they would. I now have a fair understanding of my friend’s mom’s reaction. I understand her, but really is there any justification for her reaction? My mom has done a lot to keep me healthy and I am the best judge of this. So, hear this, ‘AINT NOBODY GOT THE RIGHT TO BE PISSED OFF AT MY MOM FOR ME OR WITH ME. I AINT ASKING FOR IT. I DON’T NEED IT. IF I WERE TO DIE YOUNG, WHAT MY MOM WILL NEED FROM YOU IS LOVE AND SUPPORT NOT JUDGEMENT. LET HIM WHO HAS NO “SIN” CAST THE FIRST STONE!’
The issue here is this; there are some kids who hate their parents, for well, this genetic gift. I can’t say I am pleased. I am certainly pissed, but, I don’t know, it is still unsettling to have someone judge a grieving mother. Also, the love is definitely far more than the anger. My parents went all out for me. What if they couldn’t afford to keep me healthy? What if they could not pay for expensive schools, extra tuition to ensure I did not fall behind in school work even though I was hospitalized quite a bit? What if they couldn’t afford all the hospital bills and medication and expensive medical tests? Did not have adequate medical knowledge and access to provide the quality of life that I have? What if like others with sickle cell, it was viewed as a disability, an obstacle and prevented me from aiming high and making giant strides in my life? What if it was all sickness, and my parents weren’t supportive, will I feel the same way?
It is a tricky place to be as a child. Hate/ love for your parent. It is real though. There have been times, where in extreme pain, on admission I felt resentment for my parents, despite all their efforts. I hope sometime in the future, your child does not end up in a similar situation, especially at young age. They could just break your heart. You know how younger kids are brutally honest. He could just tell you, mom, I hate you for making me sick. Especially so, if you do not have the finances, support system and adequate knowledge required to enable your child, living with sickle cell to have a relatively healthy life.
Thing is, we all have different stories, you cannot be armed with information and decide to do nothing. For those who are ignorant, they may be excused by some, but come on! We are in 2013. Ignorance stopped being an excuse a very long time ago. There is so much information out there. Saying you had no knowledge and thus subjecting your child to illness is unpardonable. There are options now. If you think you love that person too much to let them go. Well, find money for in-vitro fertilization (IVF) with genetic selection, or for a bone marrow transplant, or whatever else, and oh, these are some expensive stuff, no cheaper than the health, financial and emotional cost of raising a child living with sickle cell disease. Brace yourselves! And, for those who want to PRAY AWAY the sickle cell, marry someone you have a high probability of having a child with the disease with, and have ‘faith’ that they won’t get the disease. Here is a quote a pastor once shared relating to issues concerning sickle cell disease, trait and marriage.” What I can do by intelligence, I don’t expect God to do by miracles…” (Of course this is open to varied interpretations)
Again, I love love love my parents. Am grateful they have helped me get this far in life. For those who think I am being critical, remember in the scenario I am the dead one. ‘aint nobody wanna be dead’ I got stuff to do. So help me GOD, I am going to live a long healthy life, and when am done with everything I have been called to do, by all means, I will rest in peace. As I said, we’ll all die. Honesty is good. It is sickle cell awareness month. A different perspective is always refreshing.
Again my condolences to the loved ones of the young lady who recently passed due to sickle cell. Please don’t judge parents of kids living with sickle cell, especially in their time of grief. I try not to. And please don’t judge people living with sickle cell. We need all the support we can get. Our parents need your support too. But for real, get information, get tested and do what is right, for you, your children, your family, lets even add on generations yet unborn.