My Circle of Influence Just Got Bigger

Today was a good day.

We often don't take the time to celebrate all the good things that happen in our lives. It seems to be human condition to gravitate towards the negative, the drama, the conflict. But I think one way to create a positive life is to recognize the good moments and spread those moments around - let them infect other people.

I met a few people today who are either affected by FSH or have family affected. We've been trying to create a local support group to share stories, ask and answer questions and gain insight to the differences and similarities of this mysterious condition.

As always, I find similar stories to my own but packaged slightly different. There is comfort in knowing someone understands what you are feeling. It's a hard thing to articulate sometimes.

We had a great time chatting, not just as people who have this 'thing' in common, but just people who enjoyed each other's company. It's always good to surround yourself with the right people.

That's a good day.

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.