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.

Disneyland Part 3 - The Opportunity

There are five stages of grief include denial, anger, bargaining, depression and acceptance. I am fortunate to be able to get through these stages quicker as time goes on. It's an important part living life to the fullest. 


I supposed I should be happy I passed through the stages well before the end of the trip. Having FSH does make one resilient.


I like to think there is a sixth stage which is opportunity. I want to believe something positive can come out of every experience. 


When I look back on the trip, I can only see my nephew's smiling face, his infectious belly laugh and his passion for life. He inspires me every day and reminds me happiness is a simple formula and I am so grateful for that.


The experience made me feel like I made the right decision not trying to raise a child on my own at this stage of my FSH. I am glad I spent the money on this trip because it is a memory I will cherish forever. I am glad he adapted to my circumstances and found ways for us to share our own special things that weren't as physical, I think it will make him a more compassionate person. I am glad to have one more adventure to look back on.


Maybe this experience was like 'dipping a toe in the water' to get a taste of what the next stage of immobility would be like. One thing is for sure, I am getting a sleek, red scooter. If I am going to get one, I better look good in it.

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.