Retinitis Pigmentosa and the lessons learnt about Fatherhood

Can you see?

I love my life and the journey it has been thus far; it has been a very interesting one and kind of reminds me of a line from Deadpool.

” Life is an endless series of train wrecks with only brief commercial-like breaks of happiness.”

I was diagnosed with Retinitis Pigmentosa (RP) in 2010 and before that, life was a series of unknowns and I have stories a mile-long; from falling into sewage manholes to near death experiences. I should write a book about it and maybe call it – Falling into a Hole with My eyes Open: my experience with RP.

Before I dive head-long into the stories, to save you the hustle of googling ‘Retinitis Pigmentosa” let me tell you what it is and its significance in this whole conversation and why It bears some importance in the great scheme of things.

Retinitis Pigmentosa

Retinitis Pigmentosa (RP) is a degenerative eye condition affecting the retina; which is the part of the eye that aids in light perception i.e. the part that help with seeing both in bright and dim light. The condition affects the rods cells that help with light perception in dimly lit areas which in effect causes night blindness, tunnel vision among other things.
To see a clear picture of this (pun intended) check out this article on

Yes, and as you might have figured out, I am night-blind, and I have tunnel-vision, and this would be a good segue for my “interesting stories” on my experiences with RP.

One of many…

I had gone for my cousin’s funeral and I felt hungry and my young mind decided to go get some money from my dad who was in a nearby pub, so on my way there I fell into a ditch and was unable to get myself out; this would be a good place to add that this was an unfamiliar neighbourhood which was known to be rather coarse to ‘outsiders’.
Since I had learnt to navigate by feeling the ground on which i walked on, I reached a raised ground which I thought was a bridge to get over the ditch, but it was just the pavement beside the ditch and like the wile e coyote chasing the road-runner, I stepped into nothingness and down into the muddy ditch i went. Not my finest moment, I might add.

As I was in the ditch trying to figure out what had just happened and finding out if I had broken anything. thankfully apart from the painful bump on my shin, a bleeding knee, a bleeding palm and a thoroughly bruised ego, I was otherwise intact. Having established I hadn’t crossed over to the land of the dead, my plans to get out we now in high gear.

While in there, I saw the silhouette of someone on a bicycle riding towards my location and I sighed in relief for behold my savior cometh but I was in for a rude shock because when I called out to him, what had before seemed to be a leisurely ride around the estate became a local install of the Tour de France as he added speed and for a sweet minute there, I was sure if the bike didn’t go fast enough, he would carry it and take off.

Still muddy and in pain, in a ditch in a foreign place, I had to remind myself that the next person I might call out to might decide to scream and because I was unknown in that neighborhood, I might just be worsening an already crappy situation. I started feeling around in the dark where i was to see if I can pull myself out. I grasped at what felt like a plant growing out of the ditch wall but when I tried to use it to pull myself up out of there, it came out and back in I went. Falling into a ditch is nifty way to deal with hunger, who would have thought?

I have many other stories like this and maybe a couple worse than this one; one which would have ended with me being a bloody smear on the tarmac; maybe i’ll share about it next time.

Living with this condition has in some way influenced my fatherhood journey and the way I interact with my girls. I have had to do things that I would not benefit from but because it meant the world to them, like going to the cinema which my elder daughter had to hold my hand and show me where to sit, I did them.

Having such a rare eye condition has made me learn some lessons on fatherhood:

I don’t know everything

I learnt that being the parent doesn’t mean that I always know what is best, sometimes I have to allow myself to be guided by my kids on what they want/prefer and so long as it’s within reason and will not harm them (you can check out the difference between what is harmful and hurtful in regards to our kids here) then we can proceed.

Learn to ask for help and/or clarification

I am night-blind among other things, no need to belabour that point and that means that there will be instances that I will not be able to see what seems so obvious to everyone else and i can fight it and bump into things or argue until I am blue in the face or I can simply ask for help. When it comes to my girls it can be from simply asking them to hold my hand and guide me in dimly lit areas or even just asking for clarification on things that may not be clear to me.

Admit your shortcomings and be willing to apologise for them.

I am sure admitting you are wrong is already hard, now imagine apologising to your 9 or 4-year-old because you have done something or said something that has hurt them. Failure to see something might inadvertently lead to a faulty conclusion and consequently wrong action, so when such an error is brought up especially by someone you call your child, swallow that lump in your throat that tastes a lot like pride and ego and admit you were wrong and apologise.

As science has it, the condition will continue to degenerate until complete blindness, so while I still have my sight (as funny as it might be) I will continue to remain teachable regarding my kids.

What lessons are you learning in your fatherhood journey?

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