35

I was a moody teen who thought she knew everything. I wanted to be done with school already and if I’d gotten my way I would have quit school at 15, done my American Fitness exams and become an aerobics  instructor. My mum was that ninja mum you found yourself obeying because I stayed in school long enough to sit my KCSE and then sit IGCSE A levels.

If things had worked out my mum’s way, I would have enrolled in a university degree immediately after my As because by then I had turned 18. But things dragged out and the money didn’t come through, so I missed both my enrollment at a US University as my mum hoped and then later at the Kenyan University that gave me a place.

Looking back now, I realise that though I missed out on the formal education I became so desperate for after that initial teen angst, I did end up getting a good enough education that I can be proud of.

I studied for 3 diplomas, one in early childhood education, one in creative writing and another in publishing. I have worked as a teacher, educator, writer, ghost writer, editor. I’ve worked in marketing, social media marketing, and content management. I’ve worked in resource management and personnel training.

My life has allowed me to go where I’ve wanted and put me in situations I wasn’t quite prepared for but surprisingly those situations became just what I needed either as lessons or as new directions.

The one thing that has been ‘the thing’ of my life has been having to live with Lupus. Lupus in unpredictable, debilitating, devastating and a completely life changing autoimmune and chronic illness.

Lupus changed the way I live my life, the way I work, the way I love. I am limited in so many ways. I go through long periods when I am housebound because of pain or because of low immunity. Even when I can go out, I must be accompanied, and often I can’t really do much because I suffer from severe UV sickness.

As a result of my Lupus circumstances, I have had to modify my work situation so I can work, teach and live at home. It works for the most part. But it can get awfully lonely. Lonely, not because I don’t have contact, but because sometimes it feels like no one quite understands the Lupus life.

Persons living with Lupus are called Warriors. I’m not very sure why it happens but people get so used to us being brave and strong and smiley in spite of illness, that if our smiles falter questions arise. And yet, our being brave and strong and smiley, was supposed to be ‘in spite’.

This expectation to be brave and strong all the time can be lonely. You don’t want to be a complainer. And yet sometimes you need a listening ear, someone you can vent to, who will not judge you for being whiney and weak for a moment.

The other thing that can make the Lupus life lonely is if you chose to be an awareness advocate in which case you have to be publicly sick. Sharing your journey on social media  platforms, makes people feel like they are there for you if they just post a few words of encouragement. Friends love you online and never come to see you in real life. Besides, you get sick so often, you can hardly ever go out with friends, so they just love you online.

This is where I am. It is a far cry from where I thought I would be when I was 15. I thought by now I’d be a superfit retired fitness instructor turned best selling novelist. I’d have 16 titles  and half of them would be International Best Sellers. I’d own a house on the beach, an amazing v-8 jeep for off road adventures, and a custom built Mammot Road Bike.

Wow!

Instead, what I am is a 35 year old writer & editor living with Lupus and surprisingly content with my lot in life.

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