FSH Muscular Dystrophy: I am a hero... shhh.. don't tell :)

Another late post. Hoping to get better at this now that I have installed the Blogger app on my phone. Technology is grand.

I wanted to update those of you who are following along on this journey with me... thanks for that by the way. Adventures such as these are always better with others. 

The complexities of this disease leave those who have it, and those who are trying to care for people that have it, confused and frustrated. You are not alone. This is surely a steep journey with lots of bumps along the way. But the view can often be enlightening.

It is only recently that I realised that this disability makes me, and everyone else with a disability, a hero albeit a reluctant one. We feel that being born with something that you have to live with isn't heroic. But now, I believe it is.

I often thought I had to do something extraordinary to be inspiring if I had a disability. I read about amazing people who have turned this disease into a great opportunity to be motivational speakers, become public advocates and lobby governments for change. They invent things and break boundaries and I didn't think my getting up each day and living meant much. But it does. 

A person with a disability faces their own struggle each day with each task. I know now that the determination not to give up, not to just stay in bed is actually a really big deal. When walking up a driveway is like hiking a mountain and lifting your coffee cup is like lifting a boulder, it is a big deal to get up, face the world with a smile and move past all the hurdles each day brings.

So I am going to give myself a pat on the back and quietly accept I am a hero too. Just like the thousands like me who do not know what each day brings with their disability.

Since my last post, I have experienced a great deal of muscle loss in my legs and arms. My left arm doesn't function properly and I can't bend at my knees well because of the muscle loss in my calves and thighs. FSH keeps you guessing, you never know what you can't do until you try to do it and realise.. well, you can't. But on the upside, I am still independent, still working and still doing as much as I can.

On the research front, I recently attended the Friends of FSH research and patient meeting at the University of Washington. I heard from a number of leading researchers in FSH. These are our FSH champions and I have no idea where we would be without their dedication to unravelling this disease. They are moving forward in leaps and bounds in my opinion, studying drug therapies and creating viable mouse models and learning more and more about the evil DUX4.

Until next time, stay happy and at peace. You are heroes too!

The Silver Lining

Yes, it sounds cliche I know. But for this post, I have to share some cliches, or fortune cookie wisdom, as I call it. No bad thing should ever go without a good thing taking place or a lesson of some kind, hence the silver lining.

Sometimes you really have to search for it. The key is that you should go search for it. Each thing, even a bad thing, leads to something else... often something much bigger. Some call it the butterfly effect.

In any case, I broke my wrist in September. This may not seem to be a big deal, lots of people break their wrists. But for someone with FSH, it can lead to much more, as I soon found out.

How I broke my wrist is stupid and small and who would have thought something so insignificant like trying to move a fan could have such ripple effects, but it did.

First of all, let me say that the fan in question should not have been there. Lesson #1: Don't put off for tomorrow what you can do today. I had been meaning to get rid of that fan for the past two years. But kept waiting for the perfect replacement and was too lazy to dispose of it. I should have gotten rid of it. But I didn't and so in trying to move it, I tripped on one of the awkward "accident waiting to happen" legs, and tried to break my fall on the unstable stem of it which broke in half, sent me down to the ground where I landed on my wrist and shattered my radius bone.

So now I'm on the ground in the unceremonious "I've fallen and I can't get up" mode. Phones nowhere in reach and all alone. Lesson #2: Women are like tea bags, you don't know how strong they are until they get into hot water. So I regrouped and bum-walked my way to a phone, pulled a McGyver move with a broom handle and managed to open the door. 

The rest is the usual trip to the ER followed by a cast followed by an xray that said the cast didn't work followed by surgery followed by heavy drugs and a the life changing moments that ensued.

As I said, broken wrist.. not such a big deal. But when you have FSH and are at the point in your "adventure" where you need both hands to transfer from seats, this is huge. Seats, by the way, includes toilets and the car.

Imagine that. Now I had to get someone to lift me off the toilet at the hospital because I was stuck. Embarrassing. Lesson #3: Always have clean underwear and shave your legs. OK, that second part was just for the girls.

Talk about your independence gone, in the snap of a finger. Lesson #4: One moment changes everything.

Thankfully, I had not hastened to sort out some mobility issues at home in anticipation of what may come. Lesson #5: Do all you can do while you can.

So I was, in fact, able to go home where I stayed for the next eight weeks. Eight long weeks. Thank god I was able to work from home or I would have gone out of my mind. I had to get my mom to move in with me which was really hard for me, but I think it finally made her feel like she was doing something, anything to help me. For me, it was humbling. Lesson #6: It's ok to ask for help sometimes.

Sadly, the laying on my back, the trauma of the fall and the surgery for which I was wide awake, the effects of the nerve block and far too much time to think, left my FSH in a what felt like a rapidly progressing state. My arms got weaker, my legs got weaker and my core got weaker. I had to get a walker and a boosters for the bathrooms at work and at home. I couldn't get past imagining a life of asking for rides, waiting fro help and no freedom. Lesson #7: Suck it up. It could always be worse.

I was so worried about what people would think of me in this new state. The walker, the booster, the limping... but I got to work and was embraced by all those I left. And was greeted by another colleague who, sadly, herniated a disc and had to use a walker after a five day hospital stay. Lesson #8: Shit happens to everyone.

So I am back at work and struggling a little, but I am back at work. More importantly, I am back to spending time with friends and doing some of the things I enjoy. I had to buy a new car so I could get in and out easy (how painful was that... not!) and have my VIP parking pass (disabled sticker) which really came in handy during the busy shopping season.

Most of all, it reminded me of how resilient I, and all those with FSH, are. I learned I had developed a pattern for when bad things take place. I cry, I mourn, I take a deep breath, I pull up my socks, I get on with it. Lesson #9: Life is too short to be on the sidelines. Get in the game.

And, my parents who as you know from reading previous posts, found some strength too. The broken wrist and all that came after it moved them slightly out of denial and thankfully made them realize, I'm doing ok. Lesson #10: Reality is what you believe it to be.

So out of all that came some good. I could do without the ugly 3" scar that came along with this. But I am grateful for the lessons it reminds me of.

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.