I am grateful for the things that He has done. Hezekiah Walker
It is not even a month since I announced I had ataxia.
That was such a good move.
I know this kind of admission in Africa is associated with witchcraft, generational curses, shame, stigma, stares and will cause your untimely death bla la bla. But that’s not how I approach it and will prove to my relatives that this disease could be a blessing in disguise.
“She has finally gone mad.”
Since March 22nd a lot has conspired. A very good friend, Millicent Githinji wrote me after reading something I had written. We were friends in university but had a silly falling out several years ago.
Now we chat and speak every other day. Yesterday we were laughing at how people spell journey mercies. Journey masses. Journey marcies.
Fud for food.
Thank God. Thanx God or denx God.
As soon as I got the diagnosis, I knew that I had to help my relatives in Kenya who were 200 times worse than me.
I have previously thought of opening an NGO related to ataxia in Africa but never got round to it.
I decided this would be a good time to start one. I wanted to register it in Sweden.
I went to the office you do this at. They gave me a form to fill out. In Swedish. I got a friend to translate it. There were no sample formats I could look at.
So I kind of gave that up.
Right now I am trying to manage the new always tired me. So I’m not attending to things which represent struggle to me.
I was a bit low wondering how I would manage helping others when it was just plain old me. With my meagre resources.
A few days ago my friend who lives in Washington DC told me that there was a group of girls I went to high school with who were very concerned about my predicament. And they wanted to help out. Then she asked me, “Can I send you money via Western Union?”
Who asks me this question? No one ever.
I told her I did not need money but told her a little bit of what I wanted to do for my relatives and about the NGO.
She said we should explore the possibility of registering the non-profit in the USA.
I joined the WhatsApp group of my former high school mates on the weekend. They asked me, ”What can we do for you?”
I told them I will formalize my plans and let them know.
They have already done some wonderful things on my behalf in Kenya.
I wonder why people would hide a diagnosis, only good things are happening with me.
I feel so wonderful now. It’s not just me. I have support from my friends.
To achieve any big goal, you need a team of people to help execute a vision.
I also have to thank my friend Cathy Kiruthi; a pharmacist in the USA who has been helping me out with drug research.
People are just coming out of the woodwork to help me. And I am eternally grateful.
The ataxia is a real pain in the butt.
It is so funny how you suddenly manifest symptoms on one day. And that day signals your former life is over.
It has been 4 months since someone noticed my funny walk but things are moving at a fairly quick speed. I was not prepared for this.
My symptoms (a visible tremor and loss of balance) are brought on by hunger and fatigue. I am also experiencing fatigue which is worsening. I can’t go to church. I can’t buy groceries. A friend of mine invited me for pizza yesterday out of the blue. I couldn’t go. If I’m going to go anywhere I need to plan it days ahead. I have started using a taxi to go to doctors and physical therapy appointments.
I can’t push myself in the gym like before. I can have one good complete workout on one day but must rest the next day. I have learnt the need for a reak the hard way.
This SUCKS. Accepting my new normal is very difficult.
No wonder many ataxia, Parkinson’s disease and multiple sclerosis patients suffer from depression.
I am such a busy body; I am learning to slow down. I hate it.
But knowing me, I will find a solution to this. Dig, dig, dig. Trial and error. Patience. Even with the solution, I still need to really slow down. The old me is gone.
I am grateful I don’t have worse symptoms, however.
But all in all, I am excited for the future and for the help some really deserving people will get soon.
Keep it locked!!
photo credit: Boris Thaser <a href=”http://www.flickr.com/photos/123982963@N04/23332566164″>Hue, Vietnam. 2015.</a> via <a href=”http://photopin.com”>photopin</a> <a href=”https://creativecommons.org/licenses/by/2.0/”>(license)</a>