I Have Ataxia

It is week 12 of 2017. The year started innocently enough.

I went a little crazy buying new clothes and accesories at the big “end of the year” sale that started on December 26th in all stores in Sweden.

On New Year’s day, I sought shelter indoors to escape the cacophony of the fireworks display.

I bought five outfits in Zara to celebrate my birthday on January 3rd. Any excuse to buy a dress or two or five.

I met my friends that evening for a chai latte and sushi later on. A friend observed, “You are walking funny.”

I’ve always had a problem with my balance and could not walk up a flight of stairs without holding on to the railing. It was only noticeable to myself; however. This was the first time someone had noticed anything.

I knew what “walking funny” meant. My paternal grandmother had a rare genetic disease called ataxia that she passed on to five of her 8 siblings. One of them was my dad. He passed it on to my 2 sisters. We buried Elizabeth in 2011. Ataxia ravaged her body and ended her life in a short 12 years.

I always imagined I was a carrier of some sort with mild symptoms. I however knew I had to get checked.

3 years prior, I had seen a neurologist in Malmö who assured me I did not have it. Here I was again, having to deal with it.

I did a little digging online and found a Dr. Martin Arce who was sponsored by the SCA Network in Sweden to conduct a study that involved testing for a form of ataxia; SCA 3. I sent him my details and he arranged an appointment to take a sample of my blood.

I went to see him on February 22nd.

I did not think I had ataxia. I thought he would tell me I was a host or something or had it lying dormant in me and I would never experience full blown symptoms.

In fact I had met a new guy who was supposed to come to Sweden in March so I was busy choosing my outfits and planning to keep the doctor visit mysterious and hush hush. And if he noticed me walking funny I would say I had an ear infection earlier. Or something.

My first impression of Dr. Arce was that he was pretty young. I thought he’d be like 70 or something. He had a lively personality.

So he prints some paper and asks me to do a bunch of activities. This is apparently the Scale for the Assessment and Rating of Ataxia (SARA).

Then he told me I had ataxia. And the symptoms were just starting to show.

He ordered my blood taken by this lady who could not find my veins. They roll and no one can ever find them. She pricked and prodded and after leaving me black and blue, retrieved a vial of blood.

It will be a month since I got diagnosed this Wednesday.

Having ataxia has been a real shock to my system. It consumes so much of my time. I’ve started going for physical therapy and have to gym even more than I used to.

I write about so many things on my blog. Just today a reader sent me a message that she was making better choices in selecting her men and no longer felt the need to just have a man to avoid being lonely.

So I am glad my writing has had a positive effect on people.

But I now have to write about ataxia. It has currently engulfed the old me. I can’t escape it.

In the next couple of articles I will write down what really stood out to me in this first month.

For instance, I was mad at God and did my best Job 6:12 impression; “Do I have the strength of stone? Is my flesh bronze?”

But God knew about my diagnosis 5 years ago when he orchestrated my move to Sweden. My neurologist also happens to be the top ataxia expert in Sweden. I usually don’t stay mad at God for long. He sees 10 years ahead of me and He uses ALL things in my life for my good. Be it crappy ataxia, or my writing or whatever. ALL.

Anyway, I will cover all this and more but for today I am just telling everyone that I have spino cerebellar ataxia.

The disease is extremely rare. My family is the first family with ataxia in sub-Saharan Africa. The first reported family. Most cases in Africa are in South Africa.

My neurologist treats me like a celebrity. “How are you African and you have ataxia?”

My physical therapist has never seen an ataxia patient. I tell her, “Well tell your colleagues you have an African ataxia patient.”

My family is very special and unique. Rare is special.

I am starting a hashtag and pretty much no one shares this hashtag…in the whole world. #theafricanataxiagirl

Ataxia sucks big time and has caused so much death, anguish and suffering in my family. I feel there was a bigger reason I got it at my age, with a writing platform and living in Sweden.

My symptoms are not too bad and I have Dr. Arce to take care of me. I am good…it could be much worse.

So no need to panic and call 911. Calm down.

I am handling this the best way possible.

But boy don’t I wish for the days I was thinking of a boy LOL.

Does he love me or love me not? Those were simple days.

Talk about putting a spanner in the works of my life.

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This article originally appeared on www.nyakarimaking.com

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