The Man in the Wheelchair

As the hockey world is glued to the playoffs, the company I worked for held a public viewing for those who wanted to watch their home team play.

We set up the event like a giant living room, some chairs and some sofas for people who won tickets through contests.

We often get people with disabilities attend our event because the nature of our company is inclusive and accessible. We have a policy to accommodate anyone with special needs and even if we didn't, the people at this company would do it anyway. I have seen managers give up their open parking spots for people who needed it.

I watched a man in a manual wheelchair, wheel his way to the front of the room, just behind the sofas. A few minutes later, he transferred himself from the chair to the sofa. No easy task when his legs weren't working.

Our event manager very reluctantly asked him if he had a VIP pass. He responded no. She said that he could sit there, unless a VIP came in, in which case he would have to move. He said he didn't know and would move anyway. Once our manager realized the sofa would remain unoccupied, she begged him to go back.

She came back to where I, and another co-worker, were watching to make sure the man was ok.

My co-worker commented on how some disabled people take advantage of situations and feel like they should not have to play by the same rules as everyone else, even in situations where they are capable. The manger was mortified, but didn't say anything. I said, "This man has a pretty tough life as it is, maybe you can give him a break."

It's not what I wanted to say, I wanted to scream. I wanted to shake her into compassion and reason. I wanted to tell her that her generation was far to unaware of the responsibility we have to each other in a society and that people who can help, should. I wanted to tell her people with disabilities are entitled to some modified rules.

But I didn't.

I couldn't.

Because I know this girl has compassion and a big heart. I know this because she knows that I have FSH and she researched it when she found out. She refuses to let me carry anything, strain myself and always gives up her seat for me whether I need it or not. She walks me up and down the stairs when we have a fire drill and has defended me with unequivocal conviction if anyone ever implied I was doing less than my share at work.

So where was this coming from?

I know there are some people who do take advantage of a disability or the fact they are elderly. There is a sense of unrestricted entitlement from them that frustrates people. I think it comes from their own frustration being someone with special needs feel. They hate asking for special treatment and don't like to feel different.

For me personally, I suffer walking the extra steps in the parking lot because I don't want to get a disabled decal for my car. I don't like to take special seating even though it would keep me from experiencing pain later. I don't even like to get on to a plane before the others because I feel like people with think I am taking advantage of an illness that doesn't make me look disabled.

For the most part, people are pretty legitimate when the ask for special treatment. I believe it is better to err on the side of believing them rather than questioning them and making them defend themselves.

The man ended up leaving after the first period. Not sure if he was embarrassed or frustrated since his team was losing.... badly.

The "Whys"

You've read my posts about my nephew and my new niece, they joys of my life.

The first three years of my nephew's life have been amazing for me. I wish my condition didn't progress while he ages, but it is. I am able to do less and less with him. With my niece, I am doing even less. But I have enjoyed everything I have been able to do with them, and continue to try and create unique experiences for them that remind them of fun times with their auntie.

My nephew seems to be getting smarter and more active at a much higher rate than his years would indicate. I think I have mentioned he can knock me over with one of his tackles. At three years old, he plays hockey, lacrosse, baseball, gymnastics and he skates and swims. He has boundless energy and an amazing spirit.

He also has a soft soul and knows when things aren't quite right. In the last year, as my leg and core muscles have weakened more and more, we can't rough-house the way he likes. I can't carry him and I can't sit on the floor and play with him. I would say, 'we have to be gentle because auntie's muscles are broken.' He tries to be careful, but I sure hate spoiling his fun.

Now that he is becoming more articulate and perceptive, he asks, 'Why? Why are your muscles broken?' Every adult knows kids are full of 'whys'. Why this, why that... how do I tell a three old why my muscles are broken and why I can't fix it? Why I need a cane. Or why I need a wheelchair. I guess it is everyone's instinct to want to protect a child from the cruel lessons of life.

But I am hoping if I can explain my story in a way he will understand, it might make him more compassionate and considerate of people who are different than he is. Hopefully, it will make him understand we all have special skills and when God may take one thing, he gives you something else and it's important for all of us to try to find that something else. Not just in other people, but in ourselves.

Success is in the Buckets

I have been thinking a lot about my last post and what I wrote about how foolish I thought it was that people think 'you can do anything you put your mind to". Sounds pretty negative and very un-zen-like, doesn't it? So I thought I would clarify.

I do think there are some things you can achieve with hard work, passion, commitment and determination. And there are some you can't. It's the absolution component that troubles me.

The reality is, life is made of three buckets where your successes live. Bucket One contains the things you have control over. Bucket Two is where you put things you have some control over. Bucket Three is for the things you have no control over.

This was a lesson taught to me by someone on our company's leadership team. It was a lesson on managing expectations and creating an environment where you can actually succeed. I think the theory is as relevant for life situations.

I wanted to be in advertising and I went after it and did it. I wanted to get my accreditation in PR and I worked hard and I did it. I had control over these things. I found a way to get the money, worked through the time commitment and worked hard to do well.

I also want to be able to run, to skate, to dance. But my FSH is in the way. Weakened muscles, a foot drop and I don't even know what to say about my ankles. But, right now, I have no control over those things and so I can't achieve what I would like. This is Bucket Three. (By the way, I hate Bucket Three, but it's part of the buckets and so there it is.) Now I have a choice. a) I can kill myself trying to make this go in Bucket One. b) I can redefine the goal based on what I can control and achieve a different success. Or, c) I can take comfort in releasing the pressure on myself for something I can't control and can't change.

I use the word comfort deliberately. It takes awhile to get there because it feels like defeatism at first. No one wants to accept they don't have complete control over their life and can't determine their own future. People who think that will find it very challenging to accept life's natural course of evolution. People get sick for no reason. People die unexpectedly. Things happen we can't understand. When you accept what bucket things are in, it is a liberating feeling and actually puts the control of your success back in your hands.

I leave you with this old quote, that is as true today as it was when I was a little girl reading it on my grandfather's wall:

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."

Or the modern version:

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to hide the bodies of everyone I killed who pissed me off."

Flip Flop...Stop...?

In the early part of my career I was called a 'flip flopper', 'job jumper', fickle and utterly lacking in focus and commitment. All this because I moved from job to job every couple of years.

Now, anyone in PR and Communications will tell you, that this is very typical in our industry. It is a high adrenaline game with many disciplines to focus on. To do well you need to thrive on challenge and keep raising the bar on your own success. These are the same qualities that make you 'flighty' to some.

This industry trend has evolved into more of a generational trend and has become an expected outcome for an employee relatively new in the market. After all, it's about the journey not the destination, right?

I have come to learn far too many people underestimate the value of the destination. After all, what's the point in getting somewhere if you can't appreciate it when you get there?

The question then, I suppose, is how do you know when you have reached your destination?

I wrestle with this now as I am at a junction of my career where I can take it to the next level. In a previous post I wrote about my climb up the corporate ladder and some angst around being promoted to managing a team.

To be honest, I had almost given up on moving up in my current company given the economic climate and the fact that I had this monkey on my back called FSH. I was learning to make the most out of the steady nature of my job and try to use the time, and lack of stress, to pursue other life ambitions.

Now here I am in this new role which was like being thrown back in a cold pool after lazing around on the beach. Don't get me wrong, my instincts kicked in and I threw myself right in - looking for the quick wins and planning a legacy. I really enjoy breaking new ground and most of all, I really enjoy leading a team. Motivating them, nurturing their skills and watching them succeed. I think I hit that point in my career where helping others achieve their goals has become one of mine.

But is 40 too soon for that? Even for an over achiever like me? Or is 40 just the right number when you have a disability and are not sure how much longer you can keep working? When is the right time to stop flip flopping for a new line on the resume?

So all this brings me to my dilemma. Of course it is FSH related. Way too many of my dilemmas are. Yes, I need to work on that... but for now, here it is.

Several new speaking requests have emerged after my last speaking engagement. I feel like I barely made out of that one alive. Can't I just claim victory on that and move on to something else? Apparently not, as speaking and being the expert in something is 'the next thing' to do to increase your profile.

I spoke to my brother about it. He is a gifted and confident speaker (and athlete) and foolishly thinks people can do anything they put their minds to. What the hell is wrong with him? I once foolishly thought the same thing. But a person who can't walk, just can't walk. Not at that moment, anyway. You can kill yourself trying to swim upstream, or get to where you are going by navigating the natural current. Sure, you might get stronger the other way, but you won't have any energy left when you get there.

So he tried to give me a kick in the butt (we all need that some days) and motivate me by telling me that it was the best thing for my career and I was going to get bored of this job soon enough, who not set myself up for a new challenge.

Like my life isn't challenging enough.

He means well and perhaps if I had heard the 'you can do it!' cheer in the formidable years where FSH stripped me of my confidence and self worth, maybe I would see this as an easier road to navigate. But, right now, fear grips me. Changing jobs again? What was once sport for me, is now paralyzing. I am scared to move for fear that FSH will swing another blow at me before I am eligible for disability.

For my American friends who often talk about the horrors of navigating through medicare and the US health insurance providers, we are much more fortunate in Canada, IF we outlast the waiting period making us eligible for Long Term Disability. It's usually only a couple of years. While that seemed like no problem when my condition was in the early stages, but it's staring me in the face now.

So now I need to decide what to do. Take a deep breath, gather my strength and continue the journey (whether for my next job or just mastering my presentation skills for the sake of conquering a fear and breaking boundaries) or do I just enjoy the destination?

The Blanket - Part Three

Hoping this is the last post under The Blanket series of posts.

Today I welcomed my niece into the world. She is beautiful and entered with so much sweetness and charm. A friend told me she believes cute babies are nature's way of encouraging people to keep the population going. This little one will do that for sure.

Overdue, she emerged far less scrunchy than some kids. My nephew enjoyed meeting his new sister and I hope they find new adventures together and that I will be a part of them.

As I left for the hospital, I knew there was something I had to take to my niece. The blanket my friend had made for me when I started my adoption process more than five years ago. If you have read my Blanket posts, you will know what this blanket symbolizes.

It felt like it it was meant for her, by the same destiny that refused me to have my own daughter. I am trying to reconcile this in my mind. Why some things are meant for some and not for others. But I guess there are many answers to that question, none of which are good enough at a time of emotion.

I gently covered this little princess in the blanket. The soft, cuddly blanket knitted with so much kindness for me. At least I could pass along that same kindness and love to my niece. I hope with this, I can get some kind of closure for that part of my life.

I feel selfish knowing I will never experience that joy and pray that the joy I will get as an aunt will be enough.

(by the way, this picture is not my niece, but a cutie just the same)

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.