Duck, Duck, Duck, Goose!

Remember that game you played in pre-school? When one kid walked around a circle of kids, tapping each one on the head saying, "Duck, Duck, Duck," until one unlucky kid who got tapped with a "GOOSE!"

The new "Goose" had to chase the old "Goose" around the circle and try and tag them before they sat in the empty spot in the circle.

All the kids hoped beyond hope they wouldn't get stuck being the "Goose".

That game where the goose is chosen somewhat at random reminds me how someone with an illness feels and asks, "Why me?"

I know there are many spiritual reasons people use to explain life's randomness. I have heard:

"God only gives you what he knows you can handle."

"Suffering is God's way of bringing you closer to him."

"You must know the bad before you understand the good."

The list goes on. Those who believe in past lives would say any hurt or difficulty you face in this life is retribution for an error from a past life. Some say all aspects of life are pre-determined and fit in with God's bigger plan.

For someone with genetic disease, passed on through the generations, it's a question you ask often when you are affected and others in your family are not. Why me? What happened to make me get this faulty gene but miss it in my cousins or sibling.

For me, it's part of what makes it hard for my family to understand FSHD since I am the only one in the family who has it.

I have a brother. My big brother who I secretly adore and look up to. But on the outside, we are two stars of your favourite comedy show, making fun of each other whenever possible.

He is strong, successful, humble, a natural athlete and leader and is always the person in the room you want to know. And I was the geeky, pesky younger sister who couldn't do anything right.

Don't misunderstand, I have never once asked, "Why not him?" That would be unbearable for me. I suppose I was the right choice, if I can make some good come out of it. But it took a long time to get t this point where I accept it and simply try to make the best of it.

I just didn't understand what I had done wrong. I must have done something wrong in this life, in another life. I must have hurt someone or put them through equal pain to suffer with this disease. "Why me?" became "What did I do to deserve this?"

I'm not sure there is ever a good answer you can give to comfort someone who is suffering through an illness or difficult time.

For me, I believe there is a reason it was me and all reasons will be revealed in time. In the meantime, I try not to be too hard on myself.

A Bit About Me

Since I haven't posted a profile, I thought I should share a bit about me. First, the FSH stuff -

I was officially diagnosed when I was 21. I still remember sitting in the doctor's office after showing him the 'neat trick' I could do which was touch my shoulders together in the front. Made for a great party trick!

But of course, I knew there was something odd about it. Something strange about not being able to lift my arms very high, the way my shoulder blades stuck out. Well, it was the first time I saw a doctor scratch his head and bury his head in his medical books to figure out what this thing was he had never seen.

He emerged with a possible diagnosis "Sprengel's Deformity". Not a bad first guess. He wrote it on his prescription pad with a question mark and instructed his nurse to call an associate who specialized in back-related issues.

I have to admit, at first it did seem like an adventure or an answer to a riddle. Such an oddity that you try to accept as normal, when you know something is not quite right.

The back specialist seemed to recognize it far more quickly and sent me to a neurologist for some tests. Never in my wildest dreams did I think he was going to say what he did when I walked into his office with my test results.

He sat at his desk, pulled out his file and said you have a rare type of muscular dystrophy called facioscapulohumeral muscular dystrophy. I could barely say it, let alone know what it even meant.

But at that moment, I felt a weird sense of relief to know that I had "something" that would explain my every failure in any athletic endeavour I made. To know me, you would know I am ambitious, driven and have a fierce sense of competitiveness and fight against failure. Here I was, failing at everything I tried and I tried everything.

It soon became clear to me, I shouldn't have breathed any sign of relief because there was no cure to this "something" with the impossible name. The next part of the conversation with the neurologist was a ghastly explanation of a surgical option called scapular fusion where the risks included punctured lungs, broken ribs and well, death if the surgery went wrong. Now let me quickly say, I did end up having the surgery and they did nick a piece of my lung during the first operation, but it was by far the best thing I ever did for myself. It gave me independence and as anyone with a disability knows, that's what counts.

To this day, it amazes me how little most doctors and specialists know about this condition. I had to take a patient brochure with me whenever I went to a health care specialist. No one seemed to know what this was. I have to admit, I was and still am on occasion, tired of explaining it. It's hard to explain this condition that even the most informed person on the subject will still answer with "I don't know". I don't know how fast or slow it will progress. I don't know how I got it (no one in my family shows signs of it). I don't know if it will affect any kids I have. I don't know when the condition peaks and plateaus. I don't know what the worst looks like.

On the other side, I am a 40 year old female living in Canada. I have a full time job and have a great family, wonderful friends and a life I sometimes take for granted.

Since the whole blog is more about my story, I will leave it here and tell you more in other posts.