Silence

So this post is one of the reasons I decided to write anonymously for now.

One of the biggest challenges I faced when I was diagnosed with FSH 20 years ago, was the reaction from my family. Interestingly, my friends asked questions, did research and tried to understand what I was going through and how they could help. No one, not one person, knew what FSH was. The closest they got was, "Muscular Dystrophy, like Jerry's Telethon?" (Well, it was his telethon until he was turfed.)

For the most part, people were pretty confused since I looked just fine. So the diagnosis was just a bunch of big words that made no sense. But my friends did what they could and always showed sensitivity even if their approaches varied.

When I told my family, they didn't even stop what they were doing. My parents just looked at me and said, "What's that?" When I explained what the condition was, and that it was typically genetic, there was silence.

My father is the strong and silent type anyway. A very soft-hearted person who would do anything for anyone. I think he heard me explain it. I think he understood it better than my mother in some ways and just decided to shut down. To this day, the most he has ever said to me about it was over breakfast last year.

We sat at his favourite table at his favourite McDonald's (my father has simple pleasures) and he looked at me with tears in his eyes and simply said, "I don't understand any of these things you are going through and I don't know how to. But I pray for you every day and that's all I know what to do."

That was enough from him. I can't stand seeing my family upset particularly my immediate family. It is overwhelming to see my parents struggle to understand what they deem to be "western problems". No one "back home" had anything like this.

My family came to Canada in the 70s. My brother and I were young and grew up in Canada. I think our generation was a transitional one, with parents who came here for a better life for their kids, but couldn't completely integrate into this new world. They desperately try to hold on to things that are familiar, things they can control and make sense of. This was not one of this things.

And then there was my mother. My mother is a very strong-minded person with a very weak soul. We are incredibly close. It is unbearable for her to see her kids suffer. She could not fathom for a moment that I even had this condition, let alone what the consequences were. She kept saying it was totally impossible since no one in our family had this . I tried to explain sometimes the symptoms are so mild, you wouldn't know you had it until later in life, or maybe not at all.

No, it can't be, she insisted.

I gave them the patient brochure. It sat on the table for weeks and weeks. Everyone walked by it until finally someone placed it back on my dresser. It was the elephant in the room and no one wanted to acknowledge it.

But now it was out there, hanging in the air like a bad smell you couldn't get rid of. She believed if I just worked out, I would be ok. My shoulders wouldn't stick out and everything would be fine. After a few months of that, I got frustrated and took her to my diagnosing neurologist. He couldn't understand what we were doing there. He diagnosed me... in English.. he spoke slowly. Why wasn't I getting it?

I explained my mother didn't really understand and maybe if he explained it she would. His eyes went from confusion to pity. He realized before I did how lonely this struggle would be. This added a whole other layer of complexity to the situation.

The conversation with the doctor didn't make a difference. Like I said, stubborn and defiant that this wasn't happening. The worst kind of denial because now I had to deal with explaining everything as I was trying to understand it myself. It was like trying to save myself from drowning with someone trying to hang on to me because they couldn't swim either. But when it is the most important people in your life, you can't ask them to let go.

The situation lay dormant for awhile. Like I said, I still looked ok. I had the surgery which my dad thought was unnecessary and my mother thought was a cure. Don't get me wrong, I couldn't have made it through the recovery without them, I just hated hurting them.

I didn't know how much I could hurt them until the FSH started to show, probably the last couple of years. The falls, the limping, the fatigue, the pain. There have been a lot of tears, most of them not mine. Until of course I realized what I was doing to them and that is an indescribable pain. Now I have to do the "side step" and keep them from knowing every little thing I am going through.

This is the cross FSH makes me bare. It's an anchor around my neck and I know at some point they are just going to have to figure it out on their own. I have worked hard at getting to a positive place with this condition and it is an ongoing journey. With every "dip" in the condition, you get the rug pulled out from under you and you have to pick yourself up. I know I need to pick myself up before I can pick them up.

The saving grace is their faith. The culture that gives them this denial is wrapped in a faith that will give them the strength to get through it.