Frozen Sing-a-Long with US Marines

This made my day!! The place where the guys all start cheering is the same place where I turned to my husband and said, "Wow, Disney made her sexy."

Enjoy!

https://www.youtube.com/watch?v=cOPe9WqpOAc

Unappreciated Humor

I occasionally need to write a school excuse for my son; especially if we're traveling somewhere during the school year when he's supposed to be in class. The main rule of our school district--the excuse MUST state what educational value the student will experience with you when he or she isn't in school. I don't like to lie, so I won't do a google search for museums in the area we're traveling to and say we're going there when we aren't. My excuse for Disney World was easy to write:

I'm emailing you today to let the school know about our family trip to Orlando, FL. in September 2013. Shayne will miss classes the week of Monday, September 9th to Friday, September 13th.

The trip will be very educational. We'll be visiting Epcot to learn about countries, and to design roller coasters on a computer program. He'll also be taking an animation class, and learning about the history of Disney films at Hollywood Studios.

I will make sure he gets his homework assignments from his teachers before he leaves. Please let me know if you need anything else from us.

See, easy to follow their rules there. But last January, it wasn't as easy. Sports don't equal educational experiences in the halls of academia. I wrote this note first to have him excused from school for a trip with the college hockey team my husband was coaching at the time:

Please excuse Shayne Conner from school on Friday, January 18, 2013. He will be traveling to Syracuse, NY on a bus with his parents, and the IUP D1 hockey team. I will make sure Shayne gets his assignments for Friday. If there is a problem, please call us or email us. We can expand on the coaching duties of my husband, or on my neuromuscular condition that makes family travel with the hockey team a necessity.

My son came home and told me my request was denied because it wasn't educational enough. So, I flexed my brain to figure out what real nuggets of knowledge Shayne would receive from our upcoming trip, and here is my second draft:

 

Please excuse Shayne Conner from school on Friday, January 18, 2013. He will be traveling to Syracuse, NY on a bus with his parents, and the IUP D1 hockey team. While I cannot guarantee the quality of the educational experience he will receive, I am positive he will gain quite an education on a ten-hour (round trip) bus ride with 28 eighteen to twenty-five year old male hockey players.

Once in Syracuse, Shayne will help fill water bottles during each hockey game. After every period, he will join the team in the locker room. There, depending on how the game is going, he will definitely get a lesson that will expand his vocabulary.

Since he plays hockey, watching the games on Friday and Saturday will hopefully broaden his hockey sense, enabling him to have a stronger hockey game of his own.

That sums up the educational value of the trip. I apologize for not explaining everything fully in my last note. I will make sure Shayne gets his assignments for Friday. If there is a problem, please call us or email us. We can expand on the hockey team coaching duties of my husband, or on my neuromuscular condition that makes family travel with the hockey team a necessity.

Unfortunately, this version didn't fly with my husband or my son. They laughed, but another version went to school instead. I'm told the attendance secretary barely approved the other letter. I wonder what she would have said about my brutally honest excuse letter?

Sigh. My humor just isn't appreciated!

Public Speaking Success, and an Encore!

I survived March 11th!!!! In fact...

Derek and I have been asked to talk to another counseling graduate class sometime this summer! I still have jitters (I highly doubt those will ever go away) but I'm more comfortable if I don't have to be the lone speaker. I need a buddy. Honestly, the worst part of the whole experience was riding the elevator because..

I'm HORRIBLY claustrophobic.

This isn't something I've acquired from being in a wheelchair. Oh no. I've been this way for ever. In my previous life, the one before the wheelchair, if I had a choice between taking steps or an elevator, the steps always won. My claustrophobia is so bad around elevators, that complete strangers know all about my all-consuming fear. It's been almost six years, but I have a sneaking suspicion two workers at the Empire State Building are still laughing at me.

Why? Well...

When Derek, Shayne, and I visited in 2008, before I was rolled into the elevator, I asked in a small, quivering voice, "Are the elevators well maintained?" The answer was a resounding "Yes!" followed by a bunch of friendly chuckles over my obvious reluctance to get onboard a packed elevator and ride up to the 102nd floor. A little known fact: If you tell the people operating the elevators you are claustrophobic, and you go at a non-crowded time, you can request your own elevator! We did, and that made the experience doable. Barely.

I survived that round trip elevator ride just like I survived my public speaking. And while I'm really looking forward to doing more public speaking with Derek, I am NOT looking forward to my next elevator ride.

Here's a photo of the Thank You card the class sent me (they sent Derek one, too, but I didn't include his). They're so nice!

 

 

Public Speaking Jitters

I’m five days away from talking to a classroom of graduate students about my life with Primary Lateral Sclerosis, and…I’m nervous. I haven’t reached the “I’m-at-the-top-of-the-Tower-of-Terror” level of anxiety yet, but I probably will sometime during the day on March 11^th.  That’s when I’ll obsessively read over my notes and try not to hyperventilate at the thought of twenty pairs of eyes staring at me while my husband coaxes me down off the proverbial ledge.

 

So why did I agree to do this??    I want to create awareness about disability.

 

How am I going to do this??   By telling my story to those who will work with disabled people.

 

I have coveted insider information. 

 

  Basically, I’m a seasoned pro at living in a wheelchair.

 

I doubt I’d be too jittery if I were scheduled to chat about my writing, or the slideshow presentation I’m working on for my son’s hockey team. Those are fun, and while they’re personal things, they’re not overly private. To me, health is an intimate subject, and how my family and I deal with my day-to-day issues is a difficult topic to blab about in public. But if it helps others understand the struggles disabled people go through, then I’m all in.

 

What will I talk about?             Me. My wheelchair savvy life, and how people react to my wheels.

My husband, who’s going to talk with me, asked if we were going to participate in a question and answer forum. I hope, fingers crossed, that when we’re finished with our presentation, people will ask questions. My dire fear is that no one will laugh, or even crack a smile, at our story. And believe me, the learning curve of how to deal with my disibility was, and still is, hilarious. Take the Baltimore Aquarium public bathroom as example number one in hilarity.

In 2004, there wasn’t a family bathroom at the Baltimore Aquarium. After spending a few hours there with my husband, son, and one of our good friends, I couldn’t hold it anymore. I had to use the bathroom. Our friend offered to watch our four-year-old son and let people know my husband was helping me in the handicap accessible bathroom stall. Her idea of informing the women entering the bathroom was to practically shout at everyone, “THERE’S A MAN IN THERE HELPING HIS WIFE GO TO THE BATHROOM!” Every time she repeated her vociferous chant, my husband’s face turned a shade redder. By the end of three minutes, the vein in his temple was pulsing. I often wonder what those women thought they’d see when they walked into the room. I laugh now, but then I was afraid I might witness a homicide.

I'll mention that story because it illustrates how public spaces can exclude some of their guest’s needs. Family restrooms help people like me, but they’re essential for others like the father with the four-year-old daughter, or the mom with the four-year-old son.

 
Along with the back-story of how l got sick and learned to live the way I do now, I’ll talk about accessibility issues and the different attitudes about disability that I face every day.

The one impression I really want to leave with my captive audience is that the majority of people with a disability don’t let it stop them from achieving the things they want to do. We just have a few more obstacles to conquer.

Like Walt Disney said, “If you can dream it, you can achieve it.”

 

 

 

 

 

Every Day Should be Valentine's Day...

I don’t celebrate Valentine’s Day. Not because there’s too much pressure, or because I’m balking at a trumped up Hallmark holiday—good reasons, but mine go deeper. For me, one day where I’m supposed to show my depth of devotion and adoration for someone else with a card, chocolate, flowers, etc., almost seems like I’m making a mockery out of love. Flowers and chocolates are nice, but they’re superfluous, and I don’t know any woman who wants a giant, one hundred dollar teddy bear. Ugh. To quote Clint Black, “Love isn’t something that we HAVE, it’s something that we DO.”

 

I think it’s my unique situation that transformed my thoughts of this ‘holiday.’ With my neuromuscular disease, I’m unable to do even the smallest physical tasks by myself. And that’s where my husband comes to the rescue.

 

Every day, he helps me shower, dress, and eat. He makes my coffee. Most days more than once. When I have to use the bathroom, he takes me. He makes all the family meals, does all the family’s laundry, scoops the cat pan, and cleans the house. Every. Day. In between, he finds time to work from home and coach our son’s Bantam ice hockey team. He never complains, and he does everything with a smile and a sense of humor. We laugh through 99.9% of our day together.

 

To me, this is what love is—showing you care by your daily actions.

Derek and I share smiles and loving looks on February 14^th, but June 2^nd or October 18^th is just as special to us because we’re together.  It took us fifteen years of marriage to get here...where every day is our celebration of love, or as the calendar calls it, Valentine's Day!
 

Clint Black, It's Something That We Do
http://www.youtube.com/watch?v=qVWFi6j6Ctk