Sickle Cell and Me

1996.

I am sitting in a white room. The machine is rumbling, warming up. My scientifically-trained mind has deciphered what the nurse has said.

‘Let me break this down for you. We’re going to strap you into a chair and fire red hot laser beams into your eyes. We have no idea what we’re doing but you seem like guy who’s willing to experiment.’

My Sickle Cell medical situation had led me to having to go through this ‘experimental’ procedure. They gave me the option of not going through with it but in reality, I had no choice. For, as they so eloquently put it – If I’d turned up a week later I wouldnt have had any options. My eyesight would have been gone.

1996. I had been in the northeast for less than 12 months and I wasn’t happy.

It was cold.

People couldn’t handle the way I spoke and every school I went into as a Careers Adviser, I’d spend a lot of my time being the fountain of knowledge for all things Black as most of the pupils had never met a real-life black person before. No pressure then.

Career-wise, my progress was stunted. I was doing better and advancing quicker when I was working in the Manchester area. My old boss hired a brass band when I left. (That’s not to celebrate my leaving, by the way.).

Why had I moved to the northeast? My girlfriend found me a job. I did the worst interview of my life but I still got the job, so I went with it. We ended up living opposite a drug dealer, nice. I then discovered that my extremely quiet prospective Father-in-law was silent because he didn’t like the colour of my skin. More and more things added up to make me think being in the northeast was a bad idea.

I went to a work conference. My old boss was there. He said: ‘We’d love to have you back.’ I was excited. I had options. I had a way out of this mess. The meeting was in a dark lobby. Everything was still dark when I left the conference and came back to the northeast. My girlfriend was off to see her parents. Cool. I’ll sit this one out. The world was still pretty dark. Maybe I should get a new set of glasses?

I mentioned it to my girlfriend. She hassled me to go to the doctors.

Had I been in a fight? He asked after looking into my eyes for a minute.

He sent me straight to the Eye hospital.

I had an army of consultants poking me.

Fortunately, having studied science, I could translate their gobbledygook.

‘The type of sickle cell you have, fucks with the eyes. The blood vessels leak. We’re going to fire lasers in to seal them up. We have no idea how much to do. If we do too much the retinas will detach and you’ll be blind.  if we don’t do enough the problem will persist and you’ll be blind.

 

Each shot burnt. My tears were hot.

I had fantastic vision for about a week, after that it was like looking through a kaleidoscope. It’s only after my retina detached in my right eye and six months of regular laser surgery that I found out the tablets I’d been given to improve my vision had side effects which made the problem worse WTF.

To cut a long story short, I have half an eye that works. Every day is a good day. I wake up. I can see. I’m already winning. I can see my kids. If this hadn’t happened I’d probably still be working in an office somewhere, probably being unhappy managing large groups of people. I’d be a number in the corporate system. I’d be replaceable. I had to fashion a life that would work for me. So I did (I’ll probably cover that in another post).

Has the experience changed me? I swear more. I have an abrupt telephone manner. I am more goal-oriented. Some hobbies I used to love, like parachuting, I don’t do anymore. I don’t drink alcohol. The doctors said if I did I’d go blind. I am no longer friends with the guy who tried to spike my drink.

This is not a sad story.

There are many types of Sickle Cell disorders and in the lottery I got lucky.

The type I have is a minor inconvenience to me. It just means I stay warm, never take my glasses off and have higher insurance premiums. I don’t need blood transfusions or chronic pain relief. My life expectancy is OK.

I’ve known people who have not been as lucky as me. Next time I’ll talk about how I mitigate the effects of Sickle Cell disorders.