So I wrote an article yesterday and did not put a lot of thought or effort into it.
Apparently people liked it. I will write more about ataxia on my blog.
To help ataxia patients and their families.
To bring a greater awareness of the disease to the general public.
But before we start, there’s one thing I have to do.
Thank some people who played a supporting role in this first month of diagnosis.
People think I am handling this well but I had a lot of support. They kept me afloat.
The first person I have to thank is Dr. Martin Arce. And the SCA network which is a foundation set up by Sofie Trellmans’ family. The foundation covered the cost of my genetic test. #thankyouJesus
Thanks for new friendship Sofie.
I cried on February 22. But that was because my closest friends immediately stopped what they were doing when I whatsapped them the news. (Yes, there’s WiFi in Karolinska Institute) They are busy people but all called meon that day.
Shout out to Francescar Kinyua who I was in university with, Lillian Mumbi Kamonjo who I went to high school with and even attended my late sister’s Elizabeths’ funeral and Kenneth one of my closest friends in Kenya.
Kenneth checked on me almost daily and asked if I had taken my supplements, asked how I was doing, how I was feeling, if I had eaten and so on. He also helped me find a way to drop the ataxia bomb on my niece, Nicole and my mom. You are a gem Kenneth.
I’ve not cried since then. I think I am a little strange to begin with. I remember calling Azaliah my friend from church and asking, “Why I’m I not crying? I think I should be crying.”
It’s all been action for me: getting physical therapy appointments, getting a local neurologist, buying uber healthy food and working out… … I figured let me get that out of the way first. The tears can wait.
Thanks Njoki Mugambi for your encouraging messages and checking on me.
I also have to thank Sarah Axelson for all her help calling doctors in Malmö on my behalf,Hanne Tragardh for good conversation, Azaliah who helped me process and decipher what I was even feeling, Jackie Howard an American in my church who wanted to help in any practical way and even drove to my house and had lunch with me, Charlene from Australia but currently in Malmö, Julia a Kenyan who lives in Brisbane and called me for several hours last week, Caroline a Kenyan blogger in Netherlands, Phillipa Roy from Scotland for your encouraging call, Joan, a Kenyan in Malmö for good conversation and laughter and Grace Mungai for good dinners and offering to help me practically. To my cousin Shelmith for keeping me laughing.
I have to thank my Swedish landlord David for letting me talk and examine my feelings. David was a kind sounding board.
Thanks Steve Muchiri for the wonderful song and uplifting messages.
Thanks to Elin who trained me hard on a Saturday for next to nothing. Sweet, pretty Swedish trainer. Very fit.
Thanks for my niece who handled this very well and even encouraged me.
I also have to thank everyone in the National Ataxia Foundation Facebook page. Any time I had any questions, they gladly answered them. It was sweet to be immediately accepted and connected to so many people living all over the world because of having this disease. Their support and allowing me to vent was highly appreciated.
Everyone who called me on Wednesday; Rita Nyambura, Atieno and everyone who reached out via Facebook and left comments on my blog.
Shout out to Evans Wafula, Kenya, who left a very kind and kind message on my blog.
To Mark, USA, who showed me ataxia does not affect your sense of humor. He observed very few black people have ataxia. Yes, this is a white people disease. I have “ablaxia”. He coined that. OMG.
Finally, shout out to my best friend Viola who cracks me up and treats me like she has always done.
I seriously have been doing something right because so many people really care and love me. Aaaaaaaaaaaawwww.