2021 And We Still Cry: In memory of Evan Smith & Richard Okorogheye
A Real Lives Blog by Laurel
This week has been a sad, shocking and devastating week, I weep as I read stories of loss, inadequacies, lack of training and stories of events that should not be still occurring today.
I have made it one of my missions in life to advocate for sickle cell disease, to raise awareness and to let people hear my story, especially because I was born in 1963 when very little was know about this chronic blood disorder.
I thought we were getting somewhere, I thought things were getting better and I appreciate that we have come so far from where it all began but this is the last straw.
Look at what is still occurring today, why are these things still being allowed to happen, I am in total shock and feel as if I have lost two brothers even though I did not know them. I may have not been related to them by mother and father but genetically we had a bond that all sickle cell sufferers have.
I weep as I write this piece because I know what it feels like to know what you need, ask for it but not receive it: or to be questioned over it. I weep because having to beg for more pain killers and being told “it’s not time for your next dose, stop screaming, your making too much noise, your disturbing the other patients” – echos in my awful memories of time gone by.
I weep because everybody should know that a patient in a crisis needs oxygen, hydration and pain medication.
Evan Smith I am so sorry that you had to go through what you went through and were not heard, I weep because you lost your precious life because of ignorance and lack of education in 2019 and I feel ashamed for the people that caused this.
I feel ashamed for the nursing staff who have to live with this for the rest of their life and I feel ashamed for the Hospital in London that now want to put a specialist ward in place and educate their staff so that this doesn’t happen again.
While these terrible stories occur around us the reality is that sickle cell services in parts of London are being drastically cut, specialist wards closed access to important treatment and specialist care will be affected.
We do not need and will not accept any more apologies and definitely are not prepared to accept any more deaths. We must be heard and I for one will fight so that others, especially our young ones with sickle cell feel safe and assured that they are listened to and can receive the specialist care they need.
I also weep because shielding has been one of the hardest things mentally that I have had to deal with especially this final time, when thoughts of struggling, achieving and where I am in life has taken over my space in times of confinement. I could have done better if I had that opportunity but everything was just a struggle and just took too much energy which I just didn’t have.
I wanted to be somebody, I wanted to be given a chance, I simply would have just been happy being able to live a normal life without all the medical baggage that followed me on my journey.
I weep for Richard Okorogheye and his family because I know how tough it must have been as a young person growing up in this society with sickle cell disease, the madness that the world has gone through over the past couple of years. The trying to stay positive, the trying to continue strong when you don’t feel strong.
My siblings were a tower of strength for my mental health and wellbeing and growing up in a big family where brothers and sisters treated you as if you were 100% part of the team has helped to make me the person I am today.
My heartfelt sympathy and love goes out to both families especially the parents, I cannot begin to imagine how you are feeling, but please know this is the beginning and not the end.
Your children’s death will not be in vain, we all need to make a stand and end this lack of education, failure in our services and hospitals.
We need to stand strong and shout as we are tired and fed up of not being heard or taken seriously.
You can find Laurel on Instagram @laurelbrumant
This blog is part of the Real Lives blog series, sharing the real stories of people living with sickle cell. Read more here: www.sicklecellsociety.org/category/real-lives-blog/