Memoirs of hemophilia : (Living with hemophilia)
If people were given a chance to chose what struggle they'd want to be born into, I'd definitely not have chosen hemophilia. Because unlike all the demons I fight that have faces, this one is invisible for its in me. Maybe if I'd have gotten a chance to stare it in the face, maybe we'd have come to an amicable understanding. I'd have started by saying keep my weekends sacred, so that I get to enjoy my weekends outdoors and not indoors due to joint bleeds. I'd have said leave my school days, I want to make the most out of those. To build a future that if you one day come grasping to, atleast I'll have the means to keep you at bay. I'd have said leave my generation out of this, lemmi suffer and die with it so that it does go down my lineage.
Yes hemophilia has kinda made me who I am. The guy who can sit and come up with words that move for when I'm in pain all I can do is write. It's like I'm working on my memoirs for when I'm gone people have something to hold onto. It's made me age with wine for I'm young at soul, old one at heart. For in this 16 years (from '07 to date) I've been through dark storms, the light was all the way up and that's why I keep scaling heights. Cause I tell myself the further up I go, the higher my chances that I won't drown in this pain. Its not been all gloomy but I'm sure life would have been worth more without this hemophilia. Cause now, I live planning on my life taking into account hemophilia, it's that baggage that I have to carry with me for life. And even though I've managed to live with it, at times it just gets hard but we keep hoping for better days.
I'm planning to live out the rest of my days
Not caring about the next day
Cause hemophilia made me live that way
For I was scared of what it could do
It's robbed me off the kisses I could get
Made me lust over laughs over on phones
For I'm unable to get there in person
Cause I don't rule my body
Its made me afraid to take big leaps
For I'm already limping
I tried it once and it didn't turn out well
Left me walking with crutches for life
It's robbed me off my good years
Years I should have been standing
All wasted on that seat
Thinking of my next move instead of just moving
I'm planning to live out the rest of my days
Watching sunrise and sunsets by the horizon
So that as the sun drops below the horizon,
I throw myself and go down with it
The dating maze
Some might wonder, how comes I'm able to draw girls despite being a person with disability. Firstly I'd like to forgive their ignorance on thinking less of me in any form and secondly I'd back them up at the amusement. Because dating hasn't been easy for a whole lot and here I am as a person of disability whose had a success I've left them guessing. The obvious thought is I've lured them with money. Because poetry can be lucrative if you know just where to get the audience.
Having been able to perform at gala dinners and corporate events the idea sure fits. Some might think that maybe my poetic charms are doing their thing. But just like any guy out here whose a smooth talker, I don't need poems to charm my way. Though it's possible I've got a sweet tongue cause I come from the coast others might conclude. But all this stem from one aspect of me confidence with a personality that's hard not to notice.
From a young age I'd taught myself and mastered the art of confidence. This was as a result of good performances in school work, handy talents (cause from a young age I'd sing and sketch well) and coupled with being a fast thinker I had it all. But my secret tool had always been power of observation. Being that when I got injured I stayed in hospital for 4 months bedridden. That's enough time to lose one's mind.
What people felt like boredom during Covid-19 pandemic, was nothing compared to being helpless in the hospital. It taught me the skill of focusing my mind on things around me and trying to question everything. This sparked interest and with time I'd start learning people behaviours and patterns. It helped me know when to talk, when to crack a joke, and when to walk away. And when I got back to school, I had plenty of real life people to practice on and since practice makes perfect I became a natural.
It taught me how to keep a conversation, to be firm and to detach. Essential skills that in dating come really handy. And since I had success beaming my way, it was hard not to get noticed. But then comes the downside of my disability, appearance. In the dating world, impression is the first that comes to mind. I for one walk with crutches, that means a slight tilt on one side.
My strong suit will be when I'm seated cause you'd not notice the impairment. Appearance makes people dismiss you off from a far just as you dare come closer. So definitely I'd not be the one approaching since I didn't believe I stood a chance that way.
I'd spark interest by joining in on a group conversation, or by being silent cause curiosity would make someone take the initiative to reach out. And that's how it came to be that most of the bonds I had would be of people who were already impressed by what they've heard about me, or by the people I'm in the company of. And because once someone gets the chance to know me, I'm an instant vibe, I find myself having a smaller battle before I conquer hearts.
But recently ever since online dating became a thing, it's made the situation better for some and worse on others. Since I'm all chatty, I can easily have a great time with someone online. And as any other dating where we only show each other the good bits of ourselves, I don't easily share on my disability.
At times it's out of shame while most times is because you simply don't want it to end. Plus at times you not even sure if the bond will take off so why spoil it sooner. And that's why most of my pictures and poses are without crutches. Cause in the dating world one gets the chance to reimagine themselves hoping that they'd get to see the best side before seeing ugly side.
Most times if the conversation sparked interest and it was down to meeting each other, I'd opt to say it there and then or let it be an awkward surprise. Luckily it's never been that bad cause other than my crutches, I kinda have a great smile, hair ( dreadlocks) and lips (or so I'm told) that all is forgiven. I look better in person than in pics. That's why I prefer them seeing me in person rather than telling them on phone.
In my time,I've gotten to meet great people who were open minded. People who'd take me in for me while maybe some out of sympathy (cause they'd never tell me to my face) , some might have said no to being lovers simply because of the disability but they pretended not to like you so as not to hurt you even more.
Cause if you think rejection hurts, it hurts even more for persons with disability cause its hard not to shake it off your mind that you weren't considered all because of your disability. I noticed for those girls who've traveled, well read and have encountered disability before, have big hearts cause their love is genuine. And just like any other person, its that genuine love we all crave for.
The dating maze
I've been in and around the garden of love
Seated by the rose bushes waiting,
Waiting to see lovers come pick them
But everyone didn't come near cause of the thorns
They walked on to the hydranges
Some chosing to go for lavender
So why would they chose to be pricked
While the sweet jasmine was inviting
While other aisles were teaming with life
My aisle was all out empty
People in their numbers going for the easy picks
No one bold enough to take in the prick
And as I was walking away from the roses
One fine gentleman came along
All dusty with a lowered gaze
Went on and picked a rose flower
He didn't mind the thorns,
to him they were guarding the flower
He said if everything has a price, so does love
He didn't mind bruising for his lovers smile was a sight to behold
Fishing for love
There comes a time, when just being alone doesn't cut it and one seeks out to get a partner. Someone to share with the journey of life. They're others who go on in the journey of life without having a partner or without seeing the need of a partner and that's okay. While some are just reckless and prefer having many encounters in the name of partner, others just enjoy the great companionship that comes with sticking to one. It's a matter of choice.
Cause it might be easy bringing two people together but them staying well together being a whole lot of a tussle. For this are two people from different lives. Two people who've grown up to different set of values and beliefs and holistically getting them to walk in the same direction ain't easy. The other day while in church, the topic was about marriage.
One thing I picked from the teaching was, marriage is perfect, what makes it not perfect are the two imperfect people. Cause this are two imperfect people who might have pieces of themselves that haven't pieced together and now add another person to the mix it becomes chaos. That's why we called upon to first get to work on ourselves first before delving into any relationships so as not to project our imperfections into it.
Being that there comes a time where one wants to fall and be in love, it calls upon a great sacrifice of just getting there. Cause since its not easy, it needs a certain level of maturity and great understanding with communication taking centre stage. One of the most important stages being dating. That's where one gets to know the other and from there one would be able to make a decision.
Though dating has been marred with the feel good emotions where everyone wants to put their best foot forward, leading to people being duped into relationships that simply won't work. A classic tale of flogging a dead mule. It's made a generation that have increased rates of dysfunctional families, broken homes, divorces and separations. A generation that love is transactional and its barely even considered real. Cause some have had it rough, others have been killed for it and over it.
This is just but a picture of what love looks like for some, from stories told and experiences shared. Now if this is how it is for everyone, now picture when disability comes into the mix. For persons with disability too feel just like any other and just like any other person, they'd want to express it.
This comes in with new set of challenges in the inter-able relationships, depending on nature of disability. For some families,just the thought of marrying a person with disability spells out spoiling the good gene. Cause there might be an underlying genetic issue causing the disability that might trickle down to the generations.
Some families would even go to the extent of advising against marrying the person with disability cause it will burden the spouse. Others just see inter-abled relationships as relationships that occured out of sympathy. It's like being different negates you to not be loved or unworthy of it.
For those who acquire disability after an accident later on in the married life, some are even dumped. Cause the spouse feels, I didn't meet you this way so there's no way I'm living with this. It's a whole lot of a new discussion since topics on disability have been kept shush.
This poem tries to show, just how for some, finding love is easy. Others have to leverage something to even be considered, while some fall unlucky and miss out all in all. It begins with taking a chance then a choice. After all, if it doesn't work out maybe it wasn't just made for you but you'll only know it if you give it a try. So keep trying and be safe while you do cause people are keeping to themselves.
Fish & hook
I've gone out to the waters
Many times ever since I hit sixteen
I went out hoping to get fish
And in this few years, I've had good catches
With my small hook I've been able to trap big fish
Fishes only thought to be in the deep sea
A surprise cause I only wade shallow waters
Where my dangling feet can easily play in
I'm not a good swimmer yet
That's why I've not gone to the deep sea
Plus it's not like my hook doesn't get fish
That's why I'm still okay treading familiar waters
I'm a good fisherman however
For I stick to the same waters,
long enough to know its depth
Floating long before I sink in
I've always prepared bait on my own
Cause I only trust my hands to do the job
For it's a family secret held deep within my tradition
That's why they wonder how every time I come back with a catch
Do you know what hemophilia is?
Let's talk hemophilia. Do you know what hemophilia is? Have you heard of it. If the answer is no, lucky you I'm here. I'm hemophilic. From time to time I have bleeds in my joints (knee, ankle,elbow, shoulder) which might take days or some times weeks, it depends. The bleeds occur even without provocation, knock or injury. Bleeds also can happen in the mouth where one feels blood oozing even without having bite themselves.
When I get bleeds, the affected limbs become sore hence movement of the limb is hindered. After repeated bleeds over the years, it can cause impairment of those limbs. This is the case with my elbows, which can't fully stretch out hence my palm can't touch my shoulder. At the same time I can't put alot of strain on my elbow hence exercises that would require flexing of the elbow are a no. And if one attempts to, there's the fear of injury hence need of medication.
I got injured in 2007. In that year I got my first surgery on my right knee. They're two types of hemophilia A and B. Mine is A, which means I lack factor 8, while those of B lack factor 9. The medication (factor A in my case) at the time (2007) was hard to come by so it was also hard in the treatment plan. I had to get lots of pain meds, be infused with plasma and get blood transfusions.
But over the years things have gotten better thanks to associations like Kenya Hemophilia and Jose Memorial. Cause now its easier getting factor and now it's easier also for those who yet to be diagnosed to get screened. If you've come across a person going through signs like mine it will be good if they go get checked out.
Why I decided to tell you from a patients perspective is simply because, Google can tell you what the condition is all about, but it won't paint for you how bad the condition is when it manifests itself. I'm simply giving a face to what hemophilia is.
I too have a dream
On Friday, the long awaited results were out. The KCSE results of the exam that was done towards the end of last year were finally released. Last year being a year of firsts, cause two national exams were done in the same year. The year too being a first for the first lot of CBC final class doing their exams and set to also join junior secondary. With KCSE now out, the fate of students is now known. With some dreams now seemingly feel crushed, some dreams are now just setting off while for a few there's uncertainty. Uncertainty because With new directives and plans set to motion, there's the fear that with HELB being scrapped off and in comes something different and fees soaring, many might not get to further their studies. But the uncertainty also exists in the form of dilemma on what course to do and its even a harder dilemma if there's a disability coming into the way. Me being physically disabled and hemophiliac, at the time I received my results I was at loss. Simply because despite not getting the grade I wanted, I still qualified for quite good degree courses Engineering being top of the pile. But then, problem comes with my condition. For Engineering needs a hands on approach and its intensive to the mind, mentally and physically.
I personally walk with crutches, and to add to that, I've got the occasional bleeds into my joints. The bleeds hinder movement of my joints and as such has left me having joints that can't perform at a 100. And with each bleed varying from a few days to heal, to some taking weeks and months, that complicates the equation. Cause you here trying to juggle between books, disability and the bleeds. From time to time you'll miss out on classes and that will set you off especially in demanding courses. It's at that time I opted not to do engineering for that. But the one true question is, can the courses be tailored to work around my in-abilities or I'm simply doomed for being different. Cause it will also be torture getting yourself into a course that will strain you and maybe even break you as time goes. I pray and wish we had more understanding on disability and see how we get to a point where it reduces the chance of getting in the way of our dreams.
I have a dream
I too have a dream
A dream just like any other
But I'm far away from making it my reality
Cause I've got to work more just to get there
Simply because being different is an obstacle
And learning to work around it harder
Cause life too has its obstacles
And it's draining finding a way
I haven't given up on my dream
But I've had to make more stops on the way
For my body can't push through it all
I have to listen closely to it if I need it to work for me
I too have a dream
A dream that needs effort
But I need help to erase barriers
Cause I've already got mine to get over