I normally get 2 comments on my articles. I got 40. I did not know what to do.
But my blog has been there since October last year. Where were all you people? LOL.
I felt pressure to be an ataxia advocate but I’m just going to be me.
I wanted to write the basics of ataxia but that is boring coz all the facts are online. Google ataxia. My blog is number 3 on the first google search page.
Anyway, you must have seen my photos by now. My smile, my lipstick, my faux leopard jacket. My hair.
And I’m sure it’s pissed off some people. When you think of a terminal disease ……yes I am dying….. it should conjure images of despair, doom, depression etc.
Your ataxia does not resemble the smiling, lipstick rocking, African, rocking her natural extensions.
You think I am the way I am because I am a lucky ataxian patient. I barely have symptoms and was just diagnosed.
“Give her 10 years you say.”
You went through denial for 16 years, did not tell anyone for 7 years because you were afraid no one could love you and your shakes.
And you drunk yourself to a wobbly stupor to help you cope with the disease.
And you asked God “Why me” for 5 years. Like He comes down to visit and would send you your answer by mail.
This is your story and it should be mine.
“What do I know?”
How dare I think I can represent anyone? I am probably a phony. I am doing this for the attention.
However, everyone’s story is valid and just coz this is how you handled your diagnosis does not mean it is the cookie cutter recipe we should all follow.
Don’t judge me if you haven’t walked in my shoes.
I’m not going to judge you for drinking yourself to a stupor. We all cope differently.
You can judge me all you want. I don’t really care.
But before someone dares leave me a nasty comment talking about I am not a real ataxia patient or says I should not rock my lipstick, let me check you right now.
First of all if anyone has a PhD in ataxia it is me. In terms of the years this disease has been in my life.
My dad had it. I remember my Dad visiting me in boarding school and needing support. I remember him having his food all over him after a meal because he could not control his hands.
The ataxia got worse.
When I went to university, my dad would hire a driver to drive me and him to school. He could not drive. I remember his bank was in Nairobi and we would go there for him to get out my pocket money for three months. An always inflated amount. I remember Michael the driver and our friend, having to support him when he went to the bank.
I remember people staring at him.
People are bothered about staring in the western world?
In Africa people get out their chairs and popcorn, sit and stare. This activity is a respite from their normal day. I would be like “Daddy is so embarrassing.”
He was a gynaecologist. At the height of his career he had like a trillion patients in his clinic. Ataxia took them away. But my dad went to the clinic daily even with zero patients.
Then my sister Elizabeth got it. In her 20’s. Because there is no management for ataxia in Africa and coz all people focus on is it is terminal, nothing much was done in her case. Actually the rumour was our family was cursed.
It was better not to be seen or heard. My sister became bedridden, her muscles atropyhed. It is no joke. She could not walk or move. Then the bed sores set in. Then the descend into madness and talking to herself. When she died, she could not blink.
You are kidding me with all the functions the cerebellum (the part of the brain that controls movement and coordination and is damaged in ataxa) controls. She lost her voice in her final months in hospital. I wanted her to die. Like the day she died my mum was throwing a fit trying to resuscitate her, I said, “Let her go.”
By the way my younger sister is currently sick in Kenya. Her symptoms’ are bad. Let’s not even go to all my relatives who have died from ataxia. And all the ones currently suffering with very bad symptoms now.
Ataxia has a characteristic called anticipation. It shows up at a younger age in the next generation. Like if your Dad first had symptoms at 50 you will have it at 20.
My dad’s youngest sister who had ataxia died when my dad was alive. I remember him crying at the news. She had a daughter Agnes who would have been my age. She died. She had a son Shakim who is 15, depressed and has bad symptoms.
Ataxia is excarbated by stress, poor nutrition, hunger, depression, lack of sleep.
You get stressed when people stare at you, so you start to prefer isolation.
On an ataxia scale of how things are for Shakim, I will say a 10.
A 1 being a westerner with access to money, doctors who know what the fuck ataxia is and physical therapists.
And speech therapists. And occupational therapsts. And balance centres and pilates.
And balance vests that cost USD 1000 and have to be fitted. I emailed the company that designed this vest coz I need one for Shakim and they told me the only person who can fit it is in Denmark. So my question is I’m I flying her to Kenya and who has USD 1000? Not me. I have been unemployed for the past 4.5 years.
Will Shakim go to the USA to be fitted for his vest? Visa, money, being let in to America. What is the probability of all that happening?
And yoga. And personal trainers. And all the vitamins your body lacks. And support groups. And conferences. And money to build modifications in your house to help you with your disability. And chia seeds, maca powder, for your smoothies. And you can get people to come help you clean and cook. And a heated pool for your muscles. And access to trehalose from some pharmaceutical company. I forget. The array is dazzling.
And amazon ships that balance ball to your house. Do they ship to Africa? Is that a country or what? The place where every person has ebola? What do you mean East and West Africa?
But who I’m I to judge you if you want to hold a pity party for yourself for 6 years? Go right ahead.
Meanwhile I am thinking how I will improve Shakim’s life. He does not even have a blender.
So yes I have a PhD in ataxia.
My mum is a mumbling mess of a person. My mum goes to church weekly, says she’s a Christian but really is mad at God. Does no trust Him one iota. I told her I had ataxia and she begged me not to tell anyone. It has only caused humiliation and suffering for her. And people even insulted her. She has been ridiculed.
I tried to tell her good can come out of ataxia but I’m the crazy one so my mum just agreed. “If you say so.”
Can you imagine the guilt she has coz she married my Dad?
A second reason I rock my MAC and have not sunk in a sea of depression and held a meeting with God to ask him stupid questions is that I have seen what not doing anything about ataxia will do to you. I saw my sister. Don’t let the one month diagnosis fool you. I have years of experience here. I do not have 10 years to deny I have ataxia. This is my story.
If you want to be denial and live like “normal” people, do you boo.
A third reason I am handling this ataxia the way I am is my niece Nicole. Elizabeth’s daughter.
This girl right here is the star of this show.
I left Kenya in September 2012 and went back on vacation in December 2015. My niece already went through trauma seeing her mom not be like other moms. The she had a poor father who was banished from our home because I mean my doctor was a doctor. So this girl grew up without parents.
When I went to Kenya is when I realized how traumatized she was. People had been unkind to her in the 3 years. People can be so short sighted, thinking who you were determines where you will go in life.
They told her mean stuff. I found out she was being physically abused by a male relative. They taunted her. They told her she would never amount to anything. And my niece started believing she was not like other kids who had their parent visit them in boarding school. She was always going to be poor. She was not like those kids whose parents flew them to Dubai on holiday.
She told me she cried herself to sleep. I bought her Justin Bieber perfume coz she loves him but she has not used it because she is not sure I will bring her another bottle. Ever. My niece has ulcers from stress all the time.
She manages her money like a hawk. Because she knows she can’t spend it foolishly. When I was her age I was spoiled rotten and the apple of my dad’s eye…the ATM.
I have been working on this girls psyche since Dec 2015. And she would not get that I had her back. Or God even.
Just the other day the fog lifted. She finally got that someone had her back. Yesterday she called me while hanging out with her friends and I told her to say hi to them. She turned to them and said my mum says hi.
Anyway, Nicole can’t see me sick. I can’t break her heart like it’s been repeatedly done. She can’t see me bed ridden. So excuse me if I am not going into denial. I have to be healthy for her. She has to view me with lipstick and a smile.
Personally, even before I went to the neurologist I knew what supplements to start taking. I emailed Linda a radiologist in Nebraska who has had ataxia for years. She was told she would be in a wheel chair in 20 years, it still has not happened. The woman is fighting ataxia tooth and nail. She even has a support group and a non profit.
I have been going to physical therapy weekly. I have been gyming.
Another reason I am smiling and walking is coz I started working out religiously three years ago. Coz blogging was going to turn me alcoholic. So apparently that delayed the symptoms a lot. My neurologist says so. My physical therapist says so.
I am not judging you. I have not walked in your shoes. You just want to eat doughtnuts like normal people. And have a glass of wine.
I’ve stopped eating gluten and the doctors have not even told me I am gluten allergic. Linda told me something about gluten. I stopped drinking ages ago because drinking in cold winters speedily turns people into alcoholics.
I am a weirdo anyway and I question everything. People want me to cry coz I am single but I am really so happy. I pity them instead. The doctor told me for me to have kids I have to do very expensive IVF. I’m not doing that. I already figured I don’t really need a baby pushed from my womb, but don’t tell that to the world. I will be labeled selfish.
I am definitely weird. I don’t buy everything. Come to me with your holier than me attitude coz you are a leader in church. Well God has no favorites.
I carve out a path that makes sense to me and it pisses people off. I am quite the quagmire.
I don’t get normal people talk like, “I am lonely.”
What does that mean? You are probably just idle.
I’m not popular and I rock it with pride. I don’t expect to be more popular with ataxia. Give me an ataxia script and I will make my own.
It’s only natural for me to turn this ataxia on its head. I intend to do that.
Another reason I am not mopping around is I have a relationship with God. I know God. God knows why He allowed this to come up now. He knows I write. I trust God. I mean with everything. If He says “Stop whoring yourself around.” I shut down shop. If he says this man you want so badly is not the one, He goes. I have had to trust Him over so many issues in the past almost 5 years; I couldn’t stop now just coz of ataxia.
But most of you don’t believe in God anyway and you have been hurt by church folk.
Plus you know Christianity is boring. You can’t watch 50 Shades Darker or whatever that stupid movie is called. You were made by aliens in space.
I get it. Turn to alcohol to cope.
Most of you also live in a bubble. No one really cares about your disability. No one cared about Elizabeth. They did not airlift her from Kenya.
Rock your disability with pride. Like Stephen Hawking. And Ann Wafula Strike. While you are busy mopping around she was getting an MBE from the queen. I don’t hold a candle to Ann. She has written a book, models, is a paraolympian and a mother. #Icanteven
Money rules the world. We need money.
Money to find a cure.
Money for research and development.
Nothing will happen if ataxia is not common knowledge to everyone. Once it’s in everyone’s vocabulary……including Richard Branson there will there be a cure for this. And Oprah.
We live in a time where crazy people like Elon Musk exist. If we can’t cure ataxia in the next 10 years, something is seriously wrong.
You need a crazy, weird, bad ass like me with my freaking MAC and my natural hair.
I’ve read a lot of Nelson Mandela. If at my funeral I have left Nicole an inheritance and my efforts created a cure for ataxia then I will have done my work on this earth. Then I will go to heaven and tell my Dad his crazy ass daughter got herself on Necker Island.
I want “As it is in Heaven” by Hillsong played in my funeral.
Watch me. I have nothing to lose.
Don’t hate on me. Cheer me on.
Sorry for the long post. Read it over 5 days!
PS. I am not making light of anyones ataxia. There are so many types with different manifestations. I have SCA3. I was lucky to go to the neurologist early for detection. He told me most patients go to him when things are really bad. So don’t take offense or think I am downplaying your suffering.