Love and FSH Muscular Dystrophy

So this is an appropriate day to post something on love and FSH.

Love and relationships are hot topics on FSHD online groups and chats.  I think we all feel having FSHD is a guaranteed bad luck charm on love.  I  know I have used it as a reason for failed relationships and not following my marriage time line. I recently realized it's not always the FSHD.  It's just the way love goes.

I read a wonderful article from Kristin Duquette on love and being disabled (http://www.mobilewomen.org/2015/02/im-disabled-20-something-and-believe-in.html?m=1) We have as much love to give as anyone else.  But we often forget we are worthy of the same love.

Not sure if it is my personality or the disease that made me feel unworthy of being loved.  I think those with disabilities feel like they are not whole,  including their hearts.  Which of course couldn't be further from the truth.

It's another journey we face and God be with those brave enough to stand by those of us who take awhile to figure it out.

On this Valentine's weekend I got engaged. It is still sinking in. It's becoming apparent that being loved is as much about loving as letting yourself be loved. 

I find it overwhelming.

Not just the love from the brave soul who signed up for the FSHD adventure with me.  But,  the honest love from those people in my life who I have shared this news with.  In a world so jaded, cynical and crazy busy,  I feel I very real love and happiness channelled to me.

I'm trying to take it all in.  It's scary but I find I am enjoying feeling 'young and in love'.  It's nice to have that feeling of love without the memory of heartbreak and pain.  It's nice to not worry about how the FSHD might impact the relationship.  It's nice to just enjoy the moment and let it all in.

On this Valentine's Day I wish you all (especially my FSHD champions) a world of love from all those around you and more importantly,  the strength to allow yourself to be loved.

The Run In

Last weekend, I bumped into my ex at a party for the daughter of a mutual friend. I hadn't seen him "face to FSH" in a couple of years.

He knew about my FSH when we were dating and was the relationship in my life when I was in the "should I risk passing on FSH to my kids? Should I have kids?"

At the time, I hadn't yet experienced the depths of FSH progression. Even though we all know it's a progressive condition and everyone tells us it's going to get worse so prepare yourself, I still thought I could "will" it away. Mind over matter...pray... have faith... miracles happen... this is as bad as it gets... All good sentiments. But, FSH is totally on it's own agenda. (Reminds me of the saying "if you want to make God laugh, make a plan").

He was of the view it would be selfish to have a child who could suffer because of my decision. I wanted children so much. It was one of the few things I knew I wanted from as early as I can remember. I had a big extended family so I wanted at least five kids.

But, God had a different plan.

We spent a lot of time catching up on each other's lives. He asked about my FSH of course, and how it was progressing, what I was doing to deal with it. Given I had my walker with me, it was hard to avoid the elephant in the room!

In the years that followed our breakup, and sidelined plans of marriage and kids, I realized we weren't so different.

We both had good jobs, our own homes and our own challenges and successes. We both got married to other people we loved. He had his two and a half year old at the party and I had my stepson, niece and nephew there, so we both had the family we craved and I had as much fun and joy with my kids as he did with his. Probably more because I got to sugar mine up and send them back to their other homes!

In the end, it reminded me that things may not work out the way you plan, but they will always work out in the end.

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.

The things I miss. The things I don't.

I miss looking up when I walk. 
I miss holding the beautiful children in my life.
I miss running.
I miss dancing.
I miss being spontaneous.
I miss playing.
I miss competing in sports.
I miss walking up stairs.
I miss being able to exit a room with defiance.
I miss wearing whatever I want.
I miss my pretty shoes.
I miss dreaming about being a mother.


I don't miss taking life for granted.
I don't miss putting things off for tomorrow.
I don't miss believing I am worthless.
I don't miss believing I am weak and feeble.
I don't miss lying about the sum of who I am.
I don't miss seeing the glass half empty.
I don't miss worrying about the small things. 
I don't miss living in a small world with defined possibilities.

The Corporate Ladder is Wobbly

The climb up the corporate ladder can be a tricky one full of tough decisions, sacrifices and surprises.

I have been working in the field of Public Relations and Communications for over 20 years. I started soon out of high school because I was so determined to be successful and all I wanted to do was work and high-tail it up that ladder.

Things were going well. I conquered every challenge, jumped from position to position with greater success in every move. It was like a chess game and I was poised for a win.

Then life got in the way. On came the usual speed bumps that come along in the journey of life, put there to slow you down, humble you, or maybe test you to see how determined you really are. It's true, nothing worthwhile comes without a fight.

For me, things happen in multiples. Like fate took a nap, suddenly woke up and realized life might have been going to smoothly for me. Then boom.... relationships went sideways, work became more frustrating than challenging and of course, the health bombshell. That's enough to knock anyone off their game.

But I chose to pick myself up each time I got knocked down and try to move on. It's hard. Very hard. Emotions can totally skew reality.

I did so much soul searching and navel gazing and finally found the ability to cope.

But fate is a funny thing. Testing you, always testing you...making you push harder up that ladder not just the corporate ladder, but the life ladder as well.

I was recently promoted at work. The position is a critical part of the leadership team and comes at a time when the organization is experiencing significant change and threat to its existence. I was asked to speak to a group of young business professionals on reputation management in these challenging times.

I hate speaking in public.

I have been told I am an engaging and passionate speaker. But I don't see it. All I see is the floppy form my mouth takes when I try to speak; the slow way my large eyes blink; the high cheekbones that create huge shadows under my eyes; the crooked way I walk; the lazy way I sit and the awkward way my arms move when I am trying to animate my presentation. All I see is the FSH Muscular Dystrophy that I am trying so hard to conquer.

My discomfort for public speaking grew to an absolute aversion to anyone looking at me. How in the world can you succeed in a career where your public face and communication style IS your job?

I put my fears aside and channeled my positive energy into blowing past my fears and making an outstanding presentation. I went to the venue early, networked with the participants to make it easier, made my notes and visualized the presentation going off flawlessly.

Then I saw the stage. No handrails to get up to the stage. One hundred people, including the leadership team of the company I work for (most of whom to do not know I have FSH) watched me as I stood paralyzed at the foot of the stage. I had to ask the moderator to help me up and there was no way to do that in a subtle way.

I tried to be graceful and joke around, regroup and focus on the presentation. I started speaking and all was well, until my words started jumbling. It was like my mouth was purposely using words that were easier to say rather than the words I meant to say. Damn FSH! Needless to say, I wasn't as articulate as I would have liked, but thankfully the words my mouth chose to speak didn't create a PR disaster.

I was devastated. My expectations are very high, too high for the average person and way too high for someone with a disability. I have realized success is more about setting the right expectations, not lower ones but realistic ones so I can continue to succeed up the ladder. I also realized I should stop beating myself up about it since the two able bodied speakers were so nervous that they almost didn't get through their presentations.

I guess it's time to move to goal posts and try and claim victory. I still have to figure out how to be the public face of a company when I don't want people looking at me. I am not sure it is even possible. I have never seen a corporate spokesperson with a disability who wasn't speaking about disability issues.

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.

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.

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.