Sickle Cell, An Undocumented story.
Lets get things started.
Take a look at these two pictures and tell me what you see?
The picture on the right is what people tend to see when they look at me which is fine however when it came to times in need nobody understood, helped or actually realised the magnitude as to how this crippling condition (Sickle Cell Disease) affected me.
Male Sickle cell patients tend to get pushed to the side, dealing with the condition, we are told that any expression of emotion, distress is a sign of weakness, as a male you are told , chin up and get on with things without the reality that we also feel the physical, mental and emotional pain of dealing with Sickle Cell a condition that could potentially kill us.
Speaking from experience I have had an up and down relationship managing the condition. Being of Nigerian Origin from very stern no-nonsense parents the norm was just to do what you had to do, face the pain and just go about your business. This was an ideology that I often took upon myself to fullest mainly due to the detriment of my own personal health and wellbeing.
The thought of not wanting to let people down, of not being that guy that regularly cancels on events, the label of being that lazy person because I was fatigued and exhausted through overexertion just at doing everyday things. The constant feeling of wanting to prove them wrong often got to me.
Five to six years ago my life consisted of pain killers just to get through the day on the days that I did have “Manageable” crisis episodes. It came to the point that I in effect was an actor playing the role of perfect health. Id be jacked up on pain killers to family events, work, social meetings with work only when I’m away from visual distance to be hobbling, crippled by the pain of my body turning against me. I can recall several incidents that reminded me of the Usual suspects scene where Kaiser Soze turned his limp into a walk when he was out of distance from prying eyes. For me it was the exact opposite, I turned from a forced natural walk to a hobbling train wreck many of walks home due to extreme back, hip and feet pain associated with the condition.
For me the pressure often got worse when the few occasions I’d disclose the pain and discomfort dealing with the condition to only get told to “Man up” “Stop Over Reacting” “You’re Being Over Emotional” “Your Not The Only Person With Sickle Cell” Like clock work this would be the reaction at work, from friends, family to the point that the over reliance on pain killers especially in my case just increased and increased rendering the time I eventually got home being a walking Zombie, unable to function and affecting my emotional and mental wellbeing.
We have to come to the conclusion and I will be blunt here, being a black man with a medical condition in the current society that we live in is tough, the provider, pillar of strength, hard worker and social sponge to most BS of the world takes its toll, it grinds your gears and wears you down. It’s not surprising that in the period of my life where I was putting mass importance on my education work, kids, finances, people and kids above my own personal well-being is where I faced the worse period of ill-health to the point where it changed me, the constant pain made me irritable, emotional and sometimes irrational, I wanted someone to understand, to relate to actually see the pain I went through then just tell me the magical words. “I understand”
To put it into perspective most sickle-cell patients are given a pain score from one to ten when monitoring sickle cell crisis pain.My Normal day would consist of 5-7 with the need of pain killers masking and dulling things down in order to function, go to work or even see friends and family. This had side effects as the over reliant on these medication meant that I needed more and more to get through the day as my body was getting used to the dosages. Now in my mind I didn’t want to be heavily reliant on pain killers so decided to wind down while the pain got worse. For those of you who are unclear as to what sickle-cell pain is let me tell you, its like being stabbed by a knife as hot as molten larva all over your body while being poured over with acid.
No way am I discrediting the pain women with the condition go through, however I am highlighting the fact that many Male patients often go through the same often under more ignorance and stigma.
I remember the days leading up to when my world came tumbling down to a massive stop, I always thought of myself to a certain extent of being invincible some sort of superman that If I took my pain killers got at least 6 hours of sleep and prayed that Id keep sickle-cell at bay. Two years ago I was stripped of my powers. I remember on doctors orders being faced with an imposed period off work due to fatigue for about a month!! I woke up in a fever, shaking, gasping for air holding my chest disoriented, alone and just on the brink of passing out due to the pain.
I managed to get into an ambulance was whisked to hospital and then was discharged now I know was well before I was ready. Only to be back in hospital a further four more times within the same month with sickle-cell related complications mainly due to breathing and acute chest syndrome which is the number one killer of adults and children with the condition. Bare in mind each and every sickle cell crisis episode is unbearable to handle but to go through that four times in the same month I thought I was actually going to die but the stubborn Nigerian in me was clinging on, holding on defying the powers that be.
Then came the incident that almost made me give up, I was suffering from another sickle-cell crisis and clutching my chest and my lungs, it came to the point that every breath I took led to two nerve membranes being inflamed and rubbing against each other causing more pain on top of the sickle cell pain so breathing was no longer natural but premeditated. I was planning when I needed to breathe to regulate the pain caused to the membrane, but that wasn’t all, I noticed that I couldn’t see in one of my eyes, my left eye, all I saw was pitch black, darkness, it was eerie almost supernatural feeling, I was spooked, tried to go to the bathroom bumping into walls breaking glasses ony to see my left eye covered in blood, I suffered from burst blood vessels due to a sickle cell crisis in my eye that then made me blind. I was inconsolable, left broken I couldn’t even gather the strength to cry I just sat there for what seemed like an eternity waiting for the universe to take me, I had nothing else to give. So no longer regulating my breathing just waiting for everything to fade to black.
I must have woken up, must have been a minute tops asleep and saw a flicker of light through my left eye with visions of my children flickering, which gave me renewed hope, which then led to me deciding to call the ambulance, where I was given the news that I was blind in my left eye, it was a formality the doctors saying that sickle-cell was the reason why as I already knew. I had to deal with that issue for two years untill recently where my vision has now been restored.
Now that personal testimony to bring us back to the main point highlighted my personal battle with the condition at my own personal detriment to appease others, “Manning Up”, “Getting on with things” and often proving to myself that I wasnt “lazy”, That I had to do what I had to do to get by.
These a thoughts and feelings from speaking to various men with sickle-cell that they all have been faced with. The bravado of manhood the constant feeling of always having to protect others before yourself, yet when the crisis happens the sickle cell patients are the ones more often than alone faced to pick up the broken pieces of a war-torn internal battle with a deadly disease.
One thing that myself and many other male sickle-cell patients often have to battle with is our mental state not just males but females aswell but for the sake of this piece lets focus on male mental health which often like sickle cell is not talked about within the black community. There were many instances where having sickle cell can have a detrimental effect on ones mental health and become a very very hard complication to handle. I can admit I, like many others have faced dark times with this condition mentally, there were times where I felt like giving up but was fortunate enough to have always had the inspiration of other forces such as my family and in particular my kids being my beacon of hope.
I’ve had to make a lot of adjustments to manage my sickle-cell now days and often becoming more selfish about my very own needs above the needs of friends. Taking it easy, not over exerting myself and making sure I avoid extreme weather conditions, monitoring my health and also paying very close attention to my number one sickle cell alarm system, my body. As the reality here is we can go about appeasing others breaking and bending when at the end of the day, the cant and wont be feeling the pain of sickle cell for us, that’s something we will always have to deal with ourselves and most often alone.
Point I’m making here is us male sickle-cell patients are here and we need your support. We struggle, we bend and sometimes we break. Take time to understand the struggle we face and lets address the issue about awareness, breaking the silence together.
#Breakthesilence #Speakup #Sicklekan
Be sure to share, re-tweet and engage in the conversation, lets all do our part to raise awareness for Sickle cell