When my neurologist Dr. Arce told me I had ataxia on February 22nd, my first thought was, ”This disease will never let me be, I guess I need to deal with it once and for all.”
I was working and living in the USA and Dubai when Elizabeth was sick. I never knew how sick she was until I went home to visit. I did not know what I do now.
I still tried to save her life by sending frantic emails and even taking her to see a top neurologist in Kenya who admitted her to a private hospital for 2 weeks. Material for another article. She died in 2011.
I have always suspected I had ataxia and went to see a neurologist here in 2014. She looked at me and said, “No you don’t. “
So I thought I would never have to deal with it again.
Enter 2017. Enter Dr. Arce and his genetic blood test that confirmed I indeed had spino cerebellar ataxia type 2.
Now because I have been religiously gyming for the past 3 years and attending all kinds of Les Mills group classes at my gym, my ataxia symptoms are barely noticeable. I however had fatigue that was gradually worsening. Fatigue that made me weak, feel dizzy and be wobbly. I was very concerned, thinking the ataxia was progressing very quickly.
Lo and behold, I got my blood tested on April 18th and this week I found out that I had anemia. That was what was causing the fatigue. My muscles had no oxygen. My brain was not getting oxygen.
Ataxia is worsened and activated by a secondary condition. The ataxia symptoms I was experiencing were a result of the anemia.
I feel like those audience members who got a car from Oprah.
Despite my fatigue, I was still writing and decided to tackle the ataxia menace in my family. I knew that no matter how bad it got for me here, it was a million times worse for my relatives in Kenya.
Even at the depth of this crippling fatigue I still knew they had it worse.
I mean, I have access to Dr. Arce which is a miracle in itself. I am able to research very easily so I know what supplements to take. My gym is super cheap. I know what to eat. I don’t really care about what others think of me.
So the first piece of the puzzle was figuring out who were sick. I thought there were 3 people.
Getting this information from Kenya is like drawing blood from a stone. Most of the people I need to speak to don’t have WhatsApp.
I gave up trying to just use Wi-Fi and called my aunt from here.
This list is in order of the sickest people with the least resources. Who did not mind me writing about them.
My Dads baby sister, Aunt Nyaruai had ataxia. She died in 1997. She had a daughter; Agnes who had ataxia and also died. She had a son; Shakim who is 18. He has ataxia. He goes to high school and is wobbly and has no balance. He lives with Aunt Nyambura who doesn’t have ataxia. She is unemployed. I thought he was the worst case.
My Dad’s sister Margaret Nyakarima had ataxia. She died in 2008. She had three kids; Mercy, 54, Richard 52, Joyce 30 something. They all have ataxia. Mercy and Richard’s symptoms are the worst.
This is not the worst part.
Mercy has two children Mwaniki 31 and Ciiru 28. Their symptoms’ have just started showing. Ciiru has a 4 year old son and Mwaniki has a nine year old daughter.
My Dad had 2 more brothers who both died and had ataxia. Uncle Muturi and Uncle Theuri.
Uncle Theuri had 2 kids; Wangui and Njuki who both have like 2 to 3 kids each. Uncle Muturi had 2 kids Kevin and Njeri. Njeri has a daughter. This lot is asymptomatic so far. I am still working on getting all the details I need.
The answers are trickling in.
These numbers are mind boggling to say the least.
Luckily I have been able to talk to Baba Mwaniki, Mercy’s husband. He has WhatsApp thank God.
I also spoke to Aunt Nyambura in length.
Stigma, isolation, witchcraft
Their biggest complaint was how people treated them in Kenya. They never mentioned the ataxia once.
People think stating you have a disease in Kenya is an admission of weakness. Airing your dirty laundry. That is with a normal disease.
But the stakes are raised for ataxia.
It is a curse. You must identify what you did to God so you can have it.
God can heal you if you pay a million Kenyan shillings to a certain anointed man of God. And if you recite a Bible verse 55 times and fast on Monday. Like they know the formula to use to manipulate God to get the results they want. Never mind these spiritual guides are super promiscuous. No they know. Listen to them. Call a prophetess to be prayed for.
I pay them no mind. I just do my own thing. I’ve already shut down this kind of talk that has been repeated to me since March 22. Shut it down.
I am very tight with God. I think I prayed once about ataxia. I have come to Him for more dire problems. After the things I’ve gone through in the last 4.5 years, which God had to address, ataxia was like being told you have a cold.
He has always come through for me so I could not start hyperventilating now coz of ataxia.
He said, “You are fine. Leave the ataxia at my feet.”
I did not panic even when I could not walk 10 minutes to the gym because I felt faint.
I was in His hands.
I trusted Him and knew that if God thought I would live my best life having ataxia, I was OK with this decision.
Tell this to these Christians in Kenya. Don’t come to me with your verses when you know the things you do after church. Mistreat servants, mistreat my niece, sleep around with all the rich men and women in Kenya. You think God does not see you.
I have anemia. I’ve already started taking medication for that.
With the anemia gone, I can make my ataxia symptoms lie dormant.
There’s healing for you.
But see the thing is it’s not me in Kenya. Me and my don’t care attitude.
My relatives have been isolated, avoided, made fun of and blamed for not knowing the cause of the ataxia.
They are like caged animals. Skittish, afraid of people, not trusting.
Baba Mwaniki cried when I called him.
He told me how lonely his family is. No one visits them.
If anyone does it’s to stare, blame and criticize. And offer their dumb solutions.
He is so damaged, if I don’t send him a message on WhatsApp for 3 days, he goes like, “Are you tired of us? Please don’t leave or forget us. If I upset you, just tell me.”
This idea that a person in Sweden cares about his family and is here to help them permanently is foreign.
He is cautiously optimistic.
You wonder what has this man gone through to be this traumatized?
What have people done to him?
Plus no there’s no medical help.
I mean with all the ignorance and lack of brain cells in these people down in Kenya tormenting my family, how will these patients even think to go get their blood levels checked for a nutritional deficiency.
There’s no taxi money to ferry them around sans the stares.
There’s no money to buy a blender and juicer and eat healthy.
There’s no Dr. Arce.
There’s no gym. There’s no money to pay for the gym. And even if they could gym people will stare at them all day.
There’s no physiotherapist.
They are depressed and hopeless.
No wonder their symptoms have progressed like a Californian bush fire.
My call was the only flicker of light that has been shone down Baba Mwaniki’s dark ataxia tunnel. And he does not totally trust me.
This was to introduce the serious cases right now.
I will cover what is happening on the ground now and my immediate plans for the next couple of months.
PS. This is not a fictional account. They were all adamant they did not want publicity. But my friends will go and see them and see that this is all true.