My Health and Eye, Rants & Reflections

The Journal – Part 3

But now it’s just another show.  You leave ’em laughing when you go.  And if you care, don’t let them know.  Don’t give yourself away.

My first full time job was in publishing.  I remember being amazed I even got the role.  In my mind, I had tanked the interview but there I was, offer in hand.  Hours were long, bus commute was awful but I was on the ladder.

My boss was a bully.  Not just to me but her whole department.  I would feel sick the moment she entered the room.  A few months after I started, it materialised that I was the only member of staff to be subjected to a medical.  I was also made aware, all staff had been summoned to the office and advised what I looked like, before I started.  This was to ensure all staff welcomed me kindly without incident.  I was mortified.  

I look different yes but I can’t be seen from space!  To me, this signalled one thing.  My appearance and people’s reaction to it was not limited to the playground.  This was going to be my life.

My second job was as a civil servant.  Massive company.  Lots of friends, politics and drama.   Apart from being caught in the crossfire between two girls for a time, I escaped relatively unscathed here.  People who noticed me were more ‘intelligent’ about their enquires.   It was here where I was hot topic in the canteen.  They were playing guess the disease.   The most thought out suggestion, was that I had a brain tumour removed and my face was damaged on extraction.  

Eloquent but no.

Bells Palsy came up a lot, alongside a stroke, dental negligence and a miscellaneous accident.  Well, this was a step up from name calling and bad impressions but I wouldn’t call it a win.

I do wonder if wheelchair users get this treatment?  Would people pass a guy in a wheelchair and ask if he had MS?  Would people sit in groups and shout out random ideas.  Car Accident?  Polio?  Muscular dystrophy?  I very much doubt it.  

Needless to say, I’m always upfront with what happened.   I was born like it.  The stories, people make up, are usually far more interesting than the reality.  When people follow me around the shops or take photos of me in the street, I often wonder,  what they think happened.  I’m definitely a person of interest.  Just not in a good way.

At work, I find it hard to be the new girl.   For all the reasons most people do but also because I have to start all over again.  I have to try harder, be funnier and put up with a lot more to gain my seat at the big girls table.  It is a task I undertake each time but I am getting tired of the same routine.

Sales guys love my humour and accent but the face to face meetings are very different.  Their confident swagger and flirting, becomes a shoe shuffle, with eyes at the floor.  I’m tempted to wear a T Shirt that says ‘Please do not worry, I know you have been nice to me but I don’t fancy you’.   

Reception and Retail positions are always challenging.  Nothing more cutthroat than a customers face in your face.  It is also, very hard to do my job, when I’m being openly mocked by strangers in public.  People assume I am deaf or have learning difficulties.  People also seem to check their manners at the door.  Each day is different.  Keeps things exciting I guess.

Sometimes I am the one left laughing.  Nothing more amusing, than people walking into lampposts.  Or mother’s falling over their own toddlers.  These poor folk, only fall flat on their face because they are far too busy staring at me.

Now I’m a mother and taking a break from the office life, a new situation has presented itself.  People look at me as normal, then rubber neck with zero finesse, as they try and see what my child looks like.  Morbid fascination?  It’s ok.  You can breathe Joe Public – She’s normal.  My little lass is beautiful and physically and mentally perfect.  She is my gift.  When she smiles, she smiles for the both of us.

My relationship with surgery is not over.  As I get older, more will have to be done, to keep me comfortable and looking like a plausible human.  It’s tough to live the life I have.  It’s a struggle some days that’s for sure.  Even friends have said some harsh things without really thinking;

‘I don’t know how you do it.  I would have gone home and taken a bottle of pills by now’

‘If I found out my daughter was going to be born like you, I would have terminated the pregnancy’.

I find myself thinking of the guy in the wheelchair again.   Does he get this?   Friends that would kill themselves or abort their children if their reality was ours?

I don’t have all the answers.  I’m not sure what the plan was for me.  If I believed in God, I would definitely advise, that he was proving a little tough to figure.  As my life enters a new phase, I am holding on to one truth – I have made it this far.  Friends and family may have disappeared but giving up is not an option.  People think I am brave.  People think I’m unlucky.  People can think what they want – they usually do.

I just keep going.  Maybe I will find out what my plan is.  Maybe I will inspire someone.  Maybe I already have…

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