The Plan – Lupus Life

Are you one of those people who has always had a blueprint of your life? Always known that after school, you’d go to Uni, then get a job, find the one and get married, have a bunch of mini-mes and watch them grow beautifully to adulthood, and then retire with the love of your life to the countryside in opulence? Or maybe after the kids grew up, you and the love of your life would go travel the world and fill out your bucket list?

I have never had a solid plan for my life!

As far back as I can remember, my life has been about putting one foot in front of the other, getting to tomorrow. It’s always been about surviving today.

I was born a sick child. My current doctor thinks I may have had Neo-Natal and Childhood Lupus. Lupus is an autoimmune disease, in which the immune system goes rogue and attacks cells, tissue and organs as if they were infections or foreign bodies. I was not diagnosed while I was a child, but the symptoms seem to fit in.

I spent the first 10 years of my life in and out of hospital, with so many disruptions to my childhood schedule. Because of this, I basically never fit in with my schoolmates, or potential playmates my age.  I learnt to occupy myself by reading everything I could get my hands on. My mother indulged me and provided all the books I could ever have wanted.

My situation as the little sickly child often left behind made me so very vulnerable. An abuser was quick to identify me as a victim. He worked his web around me, isolating me even further from children my age, and from my own mother, and doing it so cleverly in the name of God. He pretended to be helping me and my mum, who was a single mum working long hours to provide for her children.

When I was 12, I found the courage to tell my Mum, and Mum defied so many incredible odds to make sure that man was put behind bars. It was something he never thought would happen when he said, ‘No one would believe you.’

Those 4 years of being sexually molested by a monster hiding behind God left me scarred emotionally. But soon after that man was jailed, my illness seemed to lift.

I became a very active teen. I was dealing with depression and anxiety, for which my mother did everything she could to get me mental health support, but physically, I was at my best.

‘Juliet, slow down!’ I must have heard this so many times from my mother, my teachers, and other authority figures. I moved like a storm. I took on too many things. I lived like I was making up for lost time, or living on a deadline. I think it was both. But behind it all, I was very depressed, very anxious.

When I turned 19, the shroud of illness came back. At first, it was just severe migraines that lasted days. They only came about once a month. Mostly, they danced around my menstrual cycle. Once in a while, one would hit me after an emotional upset. Unfortunately, the late teens are prime time for emotional upsets.

I should have gotten used to my life not following any kind of plan. I completed high school at 16 years of age. This was partly due to my childhood illness. I spent so much time confined to a bed, so my mother occupied me with lessons. When I went back to school, I’d be far ahead of my classmates, so a few times the decision was made to let me move to the next class so I wouldn’t be too bored.

After sitting my KCSE exams, however, I found I had to wait two years to enter a public university. This was standard practice countrywide for all high school matriculants. But my age and the lack of an identity card which is issued at age 18, also played a part.

At the time, this did not bother me much. I filled my life with sports, volunteer work and part time jobs around my home town, Mtwapa. I loved working with kids, and my mum had several friends with young kids, so it wasn’t too hard for me to be paid to watch out for the kids on a few afternoons or over a weekend while the parents worked or went away.

But then I turned 18, and unfortunately found I couldn’t join university. This time, it was because there was just no money. My family’s financial situation had changed drastically. This hit me a lot harder than I expected.

In the year, it took me to turn 19, I also lost my brother in a violent shooting incident. That, in itself, was enough to floor me emotionally.

In spite of it all, I kept moving, one foot in front of the other. I needed to survive.  So, I did.

I never went to University, but I did get an education, an unconventional one, a lot like my life. I put together 2 years’ worth of coursework in Early Childhood Education – which is what I wanted to follow as a career – and some Creative Writing course work. I studied Publishing Procedures, and put in some course work into Communications and then later, Human Resource Management. Through the 12 years it took me to gather up all of these, I also worked, sometimes as a volunteer, and later as a paid employee.

I worked through as a crèche assistant, and later as a teacher assistant in a Kindergarten. I stopped working with babies and toddlers because I found that my immune system just could not cope with being around babies.  I volunteered for a term teaching English and Literature at a chartered school, then in the same year I started my internship as a writer / editor at a publishing firm. Much later, I made the decision to switch jobs and explored the communications field while working for a literary festival.

Through all of this, I suffered. I suffered migraines, severe fatigue, joint pains, severe anxiety and depression. But I functioned. I functioned through it all.

I was diagnosed with Systemic Lupus Erythematosus when I was 27. At the time the symptoms were mild, in my opinion. I think this is why it was so easy for me to dismiss the diagnosis and make an attempt at continuing to function. One foot in front of the other.

I didn’t really have a plan, except to survive.

I think this fact, my not having a particular plan for my life, contributed a lot to how things worked out with a lot of things in my life, my friendships, my relationships.

On the one hand, I felt this urgency, like I was on a timetable. There were so many things I wanted to do. Sometimes, those things were more than my body could take. But after all that blitzing, I was not really going anywhere.

I didn’t want to build a business empire. I wasn’t very sure about marrying ‘the one’ and setting up a life in a nice little fenced compound I couldn’t escape from. If anything, my day dreams only floated as far as writing a bunch of young adult novels and maybe a volunteer job working with children in some capacity.

This was such a disappointment to certain persons who expected more from me. My only goal in life was to survive the day.

And I did survive, right up until the day my heart couldn’t take it anymore. A heart attack is what stopped me and right there, while clutching at my chest, watching the lights fade away, I knew what my plan was.

I want to live.

I want to live with everything I’ve got. I want to love with all my heart. I want to sing, and dance, and try out new flavours of ice-cream, and figure out what it is about flowers that makes me smile.

I don’t want to live in fear any more. I’ve chosen to believe that I can overcome my worst fears if I try. And I do. I will not carry grudges in my heart anymore. I forgive. And I forget. I may not let repeat offenders into my life again, but I will not carry grudges.

Most importantly, I will forgive myself. I forgive myself for the times I was not as strong, as smart, as decisive and as determined as I think I should have. I forgive myself for the times when I have been human; prone to anger, jealousy, fear or apathy.

I will give of myself, to send positive ripple effects to those who need it, through sharing my hope and faith, through small kindnesses, through spreading Lupus Awareness, and through working as a literacy advocate.

I’m figuring out so many things yet. I have a lot to learn about life, love, hope, courage and defying odds. This means going out of my comfort zone. I find that the more I dare, the easier it becomes. So I’ll keep daring, and living and loving.

That’s the plan.

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One thought on “The Plan – Lupus Life

  1. If I could take that awful disease away from you, I would. You have a strong, beautiful spirit. You are hardworking and hopeful. Stay well.

    Like

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