I joined a few private ataxia Facebook groups when I was diagnosed in February. I met a whole new community who answered my ataxia related questions.
At the same time however, I did not immediately gravitate to everyone. I wanted some people to look up to although I made a whole bunch of new friends.
There was a guy called Mark who posted an exercise video on one of the groups, daily.
Mark never posts about what was bad about his day. There is another group where you can do that.
He is also drop dead gorgeous. Like for real.
The man is Swedish, Irish and Mexican. Hubba hubba.
Mark is 37. He lives in sunny California. (GROAN)
His condition is ataxia with oculormotor ataxia type 2 (AOA2). I have never heard of it. He started manifesting symptoms at 13 but was officially diagnosed at 18.
He is the dad to AJ, a 7 year old boy. He shares custody with his ex-girlfriend but AJ spends 80 percent of his time with Mark.
On March 23rd I sent him a message to say his exercise videos were a motivation to me.
They always saw a diagnosis does not define an individual and that is the clear case with Mark.
He has a personality that would pale all others in a room.
The man has presence and charisma and I can’t remember the last time I met someone like that.
(Don’t worry, he in love with a girl, I am more of his sister.) My annoying white brother.
His personality. Discuss.
He is a smarty pants. I ask him all my scientific ataxia questions. He goes like, “Yeah I know your ataxia is dominant. Mine is recessive.”
And I go like, “What is that?”
“Recessive means that both my parents had the faulty gene and there was a 25 percent chance that their offspring would inherit the disease.”
Mark is the only one with the disease for as long back as the family has investigated.
The other day I asked him why I was fatigued.
He gives me a few answers speculating why I may have fatigue then says, ”But I know in Friedriechs Ataxia it is because of the mitochondria and ATP.”
“What is ATP?”
“ATP is an energy transporter. It moves energy from the mitochondria to different cells.”
He is funny and witty AF.
With a wicked sarcastic sense of humor. He really cracks me up.
Because I am black he said I don’t have ataxia, I have ablaxia. This disease affects more white people than blacks.
When you have ataxia you can’t run.
“How come you are Kenyan and you can’t run?”
He never ever allows me to whine. Ever.
“Mark how do you guys deal with fatigue.”
“He says, “Oh we just deal with it.”
In other words, Suck it up!
If you want to vent and complain about your sucky ataxia day, please don’t go to Mark.
As he says, “Exercise is our medicine!!!”
Mark is a beast with fitness. He does so many different things, I can’t keep up. He goes paddle boarding, pilates, weight training, and his workout videos are a constant on one group I’m in. DAILY.
I like Mark. He has guts and nothing gets in the way of getting what he wants.
He just goes to the gym and does his workout. He has a slightly visible tremor but that does not stop him.
He puts me to shame.
I decided early on what attitude to have in regards to dealing with ataxia.
I get that all of us have a valid reason to having whatever attitude you have towards ataxia.
Mark told me he was depressed and had the why me attitude until AJ was born.
This is common, but I can’t afford to linger in this stage.
Anyway, that’s when things changed. When Andrew Joseph was born.
He does not take any medication. I will not necessarily do that, but I like the fact that he is the captain of his ship.
Do you know how many doctors have no idea what ataxia is? So putting your 300% trust in these people is kind of not very smart.
I am so the captain of this ship. Like Mark.
I have a Scottish friend Phillipa who has a kind of ataxia called SCA3. She could not walk but after a lot of hard work is now walking.
Phillipa called me this morning. We both agree if anyone will walk and not need a wheelchair, that person will be Mark Aguilera.