Finding inspiration in the most unexpected place.... my blog!?

Well if that just doesn't beat everything. 

After a wonderful catch up lunch with a friend who shared his blog with me, I was reminded about this old thing! 

Clearly, I've been neglectful of late. It's not due to lack of events or epiphanies. Just mostly a lot of navel gazing in between trying to live instead of just surviving.

Going through my past posts, I remembered what a comfort writing was. How much I loved being 'in the zone' and letting my thoughts, emotions and beliefs just flow cool breeze on a hot day.

Lately, I feel more like I've been in a storm. Thoughts and emotions just whipping around like leaves, broken branches and patio furniture. The rain pelting down every which way feeling like little sparks on your frozen skin, thunder like god is trying to get you to understand something crucial and the sharp veins of ightening to remind you of a power beyond you. And, when it's over,  there's a feeling of rebirth in the calm and hope when the sun takes the place of the dark clouds.

Then I remembered: I love storms.

I don't like long posts. So stay tuned for a few more posts on the more stormy parts of my FSHD journey.

I will leave you with one bit of advice : start a journal. 

Record it, write it or film it. Just do it. You have a great story to tell, even if you think you don't. If you have a journal, take time to go back and read it. I had myself in tears reading about some of my own stories and it reminded me of how much I've been through. It made me grateful but also made me realize how strong I was during difficult times and that I could I be strong again. 

Splat!

I hope my posts about falling don't become too much of a recurring theme, but here is a stellar installment!


Last week, we had a big event at work. It included major stakeholders and executives from around the country.


I did my best to play my part and squeezed into the last suit in my closet that wouldn't cut of my circulation. I put on my ugly but sensible shoes figuring it would be better to choose function over fashion.


I spent the day walking back and forth from room to room, putting out fires and schmoozing at an epic level, something I don't do very well most of the time.


All the while, my feet were throbbing in my sensible shoes and my legs were getting heavier and heavier. By the time the event was over, I was trying to casually find a pillar to lean on looking classy rather than as rough as I was actually feeling.


Wouldn't you know it, just as I was crafting my creative exit at the wee hour of .. ahem.. 10 pm.. the president asked if I would take one of our senior executives upstairs to get her things. What a golden opportunity to connect with her one-on-one and make a lasting impression.


Be careful what you wish for.


I walked with her even though by now it felt like I was walking through sludge while my legs were being strangled by a medieval vice. My bones were rubbing against each other. My joints were aching and my back was as stiff as a board. All that from walking and standing in sensible shoes.


But, I kept going and tried to ignore the pain. I walked fast so I could keep up with this power broker in the company. I was holding my own in the conversation, engaging her in a strategic analysis of our latest initiative and then... you guessed it... I tripped on my own feet which I was dragging by now.


Splat, indeed.


I landed on my knee which left a massive bruise. She of course panicked and asked if I was ok. I was trying to think of something clever, but I figured getting off the floor would be a more useful endeavour. Since I couldn't get up off the floor, I crawled over to the nearest chair and pushed myself up all the while telling her to go gather her things and I would get her a cab.


I guess that left an unforgettable impression.


Thankfully she was too tired to dwell on it.


Thankfully I got out some intelligent information before dropping like a sack of potatoes.


Most of all, I am thankful I wore a suit and not a dress.

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."