A woman goes to see a neurologist in an office located somewhere in the USA, in Europe or in Australia. She is having problems with her vision in one eye. She suspects it could be MS, her mother had it. After an MRI and a spinal lumbar puncture the doctor confirms her suspicion, it is multiple sclerosis.
Another patient (Lucy) in Kenya who has noticed a problem with her balance and coordination. Her mother, aunties and grandmother had a mysterious disease with similar symptoms. But no one knew what the strange disease was.
People said her aunties were cursed.
They also said it was a generational curse that afflicted the whole family.
People snickered, jeered and laughed at them.
They did not want to touch them in case the mysterious disease was contagious.
She remembered how people stared at her aunt when she tried to take a walk to the shop to buy milk.
The shop person refused her money. He did not want the curse to fly from her money onto his family. He was so proud of himself as he told his neighbors what he did that day: refused the cursed woman’s money. His neighbors thought it was a hilarious and gutsy move.
So after remembering all that her mom and aunties went through, she decides not to tell anyone. She does not have money to seek medical attention. She becomes more and more isolated, the disease progresses very fast, she becomes depressed and her demise is swift and merciless.
So my father and lot of his siblings had ataxia. Some ataxias are not hereditary, this ataxia is and also dominant, meaning if only one parent has ataxia there is a 50 percent chance that any of their children may have it.
Any patient in the West who is told they have ataxia know that their cerebellum is damaged.
The cells there gradually die off. They can’t get the oxygen needed to keep cells alive. But since this is a gradual process, there are still living cells in the cerebellum. These cells work extra hard to coordinate balance, movement and coordination. They therefore need optimal nutrition and all ataxia patents need to work out to have a strong core, strong muscles and to prevent atrophying of muscles.
We are in 2017 and I decided to announce to the world I had ataxia. The move was rather naïve.
Kenyans are up in arms telling me how I need to deal with this diagnosis. My diagnosis.
They have repeated the same things that all of us have had to endure for decades.
We are cursed.
I must have done something to cause this. I need to call prophetess so and so who dreamt I had ataxia. Like dude, really? Did you have your dream before February 22nd?
If she prays for me this ataxia will vanish from my body in an instant. If I command the ataxia out of my body it will vamoose.
And so called Christians in Kenya are telling me what Bible verses to repeat so that God will heal me and heal everyone else in a flash.
Christians who have side chics. Christians who will date a married man in a flash as long as he is rich. Christians who are physically violent and beat up women. Christian men whose bills are paid for by an elderly sugar mummy. Christians who only want a relationship with a God who does what they want.
They don’t want the God who allowed Janet Ikua to die.
Christianity is not about you. It is about allowing God’s will in your life to prevail. But don’t tell that to the microwave Christians I know.
Spare me your messages.
Do you guys see me calling you out? I don’t because whatever you do is your business.
I focus on my walk with God, continue being luke warm till kingdom come, it does not affect my walk.
I do me. Could we all respect that I have a choice to do that.
I don’t know why people feel the need to offer unsolicited advice.
You give me advice about my blog.
About my career choices in Sweden.
That I work out too much.
Listen, do you. Focus on your blog. Focus on getting your first degree before you offer me career advice.
Don’t go to the gym ever. Get diabetes and get your leg cut off if you want. Do you boo.
Basically as long as I don’t ask you to pay my rent every month, I can do whatever I want with my life.
When I need advice, I know where to go. I turn to people smarter than me. These people know themselves.
Yes at this moment with me dealing with ataxia, people want to tell me how I should behave.
You with your E in high school Biology, want to tell me the science of ataxia.
You want to come up with a new solution our family has not tried before. Finding out if my dad (a whole doctor) stole cows from a neighbor and once these cows are returned the ataxia will be healed. Queuing for hours to have pastor A, B, C, D, E, F et al pray for Elizabeth.
It is my diagnosis. Writing I have it was to inform you; it was not to give you permission to piss me off the way some of you are doing.
I called my dad’s sister this weekend. She has been in the funerals of all the sick siblings.
She does not have ataxia.
After that like a whole bunch of people have it now because people don’t want to understand the science of this disease. So they multiply and pass on the disease to a new load case of children.
The ataxia is not affecting me the way it has done people in Kenya. My cells receive optimum nutrition. I work out alone, with a trainer and a physio therapist to make my legs stronger.
And I take a bunch of supplements. That a radiologist from the USA and also an ataxia patient advised me about to get. What works for her.
They are working for me too.
So I wanted to buy the supplements and send them to my relatives. And give them exercise and diet tips. I will still do that. With the help of my very special friends.
I however had to find out how many cousins, nephews or nieces I was dealing with here. I thought they were 4 people. My aunt tells me there are way more than 4 .
I ask her how she is doing. She never mentions the ataxia even once.
What has been worse has been the pointing fingers. The having to defend herself to others.
There is a root cause of this thing.
You guys must have done something to cause this.
The way she has been avoided and isolated.
The way no one gives a flying F.
The way no one visits.
The extra burden of shame and guilt every Kenyan constantly reminds her family to feel.
She was worried about how people would treat me.
“I’m worried for you because people have mostly been cruel and unkind to us.”
No wonder my Mum begged me not to tell anyone. No wonder my friend mentioned not disclosing a diagnosis of a simple disease. I could not get her but now understand how people can be cruel and thoughtless. It is easier dealing with a diagnosis without the added chatter of outsiders.
And people in Kenya think it’s not 3rd World.
Janet Ikua said people even thought cancer was a curse.
Seriously you guys, I see your Two Rivers Mall, your overpriced MAC village market store, your Dubai vacations …whatever. But as long as anyone thinks ataxia is a curse, you are ……….no comment
Anyway coz it might take decades for you guys to agree on how………. you really are, let me help you out.
Ataxia is worsened by stress. I see the component of stress you add to patients, as if the diagnosis is not enough. (cancer, AIDS oh God the stigma)
This is not happening with me. I have to be super healthy. That’s all. I will continue doing what I am doing.
If you guys know a Kanyari who can huddle us like cows and pray our ataxia out of all of us, by all means take him to my aunt.
But do not come to me offering unsolicited advice or acting like what I am doing is wrong and is offending God somehow or it does not show Him I trust Him.
I am not adding the stress of handling you people on my plate. It is not happening.
My health over rides me putting up with crap. Approach my phone with caution.
Meanwhile google the words compassion and empathy and figure out how you should behave when you see my aunt.
A visit with fruits and a how are you doing would be appreciated.
Allow me to run my life.
The ataxia will force me to check and block you. Be warned.