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.

Circle of Influence

For those who know me, you have heard me say a million times how important a positive circle of influence is. Someone in my circle sent this post to me yesterday. I did my part by re-sending it to everyone else in my circle. The entire post is excellent and worth reading, printing, framing, pretty much anything short of tattooing. Surrounding yourself with the right people is top on the list.

For me, the 'right' people include those who support me through this challenge and all other challenges I face that fall in the 'part of life' category. But, they also include the people in my life who don't understand FSH and what it means, those who don't believe me when I tell them what I am going through, and those who just tell me to shut up about it. It is sometimes those people I value (mostly in hindsight) because they make me fight for the life I want to lead.

Ironic, when you defend something it ends up pushing away your own doubt. The words that sting the most aren't new. I say them to myself a million times. But when I hear them, I am driven to defend myself.

"No, I don't want to tell people I have a back problem. I want to tell them the truth."

"No, I am not lazy. I am really just tired."

"No, I am not vain. I really needed that operation."

"No, I am not taking this too seriously. I am trying to learn, teach and inspire something positive out of the situation."

"Don't tell me I can't."

Some of these thoughts came from the people closest to me. Some meant well, some were just thoughtless and some still live in a reality where having a disability means game over. As my sweet nephew likes to say, "No, game NOT over".

It has taken me a long time to get "through the muck" and realize how strong I am. Not just because I fight the ideas I don't like (whether they come from me or someone else), but because the majority of my circle consists of strong, caring, compassionate people who care about me and see past my disability. They don't all have to be experts in FSH. Some of them don't even know what it is. But it doesn't matter. They see me for who I am, listen to my dreams, give me a hand or a kick in the butt when I need it. Most of all, they make me laugh. With laughter you can get through just about anything.

To my circle of influence, thank you.

So when I said I wasn't ready to fall..

...I should have known the universe was listening.

Shortly after my last post, I had a fall at work. Not the first one, but the worst one.

I lost my balance and fell backwards onto my chair, then off that and smashed into the walls of my ever-small cubicle.

I was having a conversation with two co-workers at the time.

On the downside, I have to fill out an accident report (too bad there is no box for being embarrassed). But on the upside, the team gave me a score of 8.2 for most creative dismount.

The Fire Drill

At some point in the life of an FSHer will come the inevitable moment when the cat jumps out of the bag. The quiet and mysterious condition will slowly start to make itself known and the journey takes a sharp turn.

The closer the people are, the quicker the transition comes. But often, it is when those not as close to you find out that it becomes much more difficult.

For me, a surprise fire drill at work seems to be the game changer.

It happened a couple of days ago around 10 am. I used to get a heads up from the Emergency Operations Coordinator who would quietly come to my cubicle and suggest I go for coffee. His wife was one of my colleagues and the six people in my department knew about my "secret". They retired last year and the HR Manager and Operations Manager, who also knew about my condition for safety reasons, forgot. Guess that's the thing with FSH, it doesn't show until the condition has progressed significantly and then it seems to catch people off guard. But as the person feeling each strain, each burn of the muscle as it deteriorates, it feels like you are slipping off a mountain and that point when others find out is when you land on your butt.

The shrieking sound of the bell meant I needed to walk down the three flights of stairs to the plaza. Three long flights on concrete steps with people rushing behind me, and me side-stepping down the stairs with my legs starting to feel like jello. The president of the company walked behind me and asked what was wrong with my leg. I brought out my usual humour all of us seem to have and made some comment about my job being hazardous to my health. He laughed, but you could see the concern in his eyes. He is a lovely man and I am sure would only be empathetic to the situation. But we are in the midst of budget cuts and restructuring and who wants to put their hand up and say, "hey over here, I am a liability to your bottom line."

My co-workers flanked me as they always do, such lovely people. But I guess this is going to have to come out to the masses sooner rather than later. Now I am on the radar and questions are being asked, "What's wrong with her?" Being in a high profile position doesn't help. Although I am fortunate to work with people who are very understanding and compassionate, it's my clients I worry about. How do you stand up with conviction and argue a point when you struggle to stand up?

The president's on vacation now, so I have a few weeks to gather my wits and find a clever way to reveal the truth without all the scary words that go along with this explanation. Wouldn't you know it, just as my star is on the rise here, a sobering dose of reality hits me. But, I am not ready to fall just yet...

A little more about scapular fusion

I mentioned in a previous post that I had undergone scapular fusion surgery. I was fortunate enough to have one of the best orthopedic surgeons in Canada working on me. He had such a long wait list, and I had just a demanding job, I had the left shoulder done 12 months after requesting it, and the second one done nine months after that. I wanted to make sure if the first one didn't work, I wouldn't have to get the second one.

I waited about five years after learning about the option before I did anything about it. The moment of certainty came on an evening when I was sitting on the floor of my mosque praying. I couldn't hold my upper body up and I had the most wrenching pain in my shoulders and neck and I knew I couldn't stay like this when there was an option.

Then the day of my surgery came. I hadn't seen the doctor in 12 months and when I was wheeled into the operating room, I didn't even recognize him. I started crying uncontrollably and I had no idea why except this strange man was about to change my life.

He turned out to be my hero.

After the two-hour surgery, I awoke not feeling anything in my back or hip where a bone graft was removed. My nerves had been cut, so I guess that's partially why, as well I had a thin tube which pumped out morphine inserted into the incision on my back.

The wound had been stitched for the first surgery and stapled for the second. The scaring was relatively the same for both. My lung was 'nicked' during the first surgery which caused some pressure and pain. Thank god they didn't have to go back in, it just sorted itself out.

I was surprised that there was no cast, just a fabric sling. No rehab, just my own exercises which involved making circles with my arm like I was stirring something.

The biggest challenge physically was getting up. Very tough when you have weak core muscles and stitches in two parts of your back. A recliner would have helped, but I managed ok. Pain management was simply Tylenol 3's and scar management was Vitamin E oil (although now there is a great scar product called Mederma you can use).

After the surgery and the six week recovery, I was able to move my arms and my shoulder blade didn't stick out anymore. I could now get items off the shelf, wash my hair and actually raise my arms. It was liberating.

The biggest challenge emotionally was making people understand the surgery was not a cure, just something to help manage the problem. No one quite understood that, but then I guess it's tough when you don't understand the condition to begin with and don't really want to (I'll touch on denial in another post).

I don't regret my decision even though it meant very large scars, shoulders that are a little broader and slightly uneven. Even though, as my doctor reminded me, fixing one thing will eventually cause another issue. That issue seems to be with my upper body now feeling a bit heavier and straining my core muscles.

All in all, it was a great trade off.

I am grateful I only have FSH

An odd thing to say, I know. But I just received an email from a close high school friend of mine updating me on another friend who is dying of cancer. She is 40, just like me.

We all went to school together and I can still remember her face in my head. Not having seen her since our reunion, in my mind she remains healthy and glowing as she always was.

She describes her experience as an unreal hell and can't grasp what is happening to her and how quickly her breast cancer spread to her liver, lungs and brain. She is undergoing painful radiation treatment to buy her some time, but spends that precious time going from one hospital to the next for treatment.

She remarked on how quickly life changed - one minute in her husband's arms, the next on a hospital bed. A good reminder of how absolutely out of control our lives are.

One way I tried to find the silver lining in my prognosis was to say everyone will get some kind of illness in their lives. It is inevitable. If this is all I get dealt, then my thanks to God.

I know that is a tough pill to swallow for many. FSH robs us of so many things in life and at times feels like a struggle that just gets you to next struggle. But have faith as the saying goes, if God get's to to it, he will get you through it. And for those of you who may not believe in God or have faith, don't worry, there are people around you who believe for you.

My heart goes out to my friend and her family. They will be in my prayers tonight.

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.

Hello My FSH Friends

This blog is dedicated to the friends I have met on the FSH Society group, my fellow FSHers I have had the pleasure or meeting in person and the friends of families trying to support those who are on this journey.

I have often found it hard to articulate the twists and turns of this adventure, so I chose to write anonymously so I can be honest and fearless.. the later of which seems to be less strong as time goes on.

I hope my story helps others to understand the different dimensions of a 'different reality'. Your comments and insights are welcome and appreciated.