Friday, September 23, 2011

Vacation Handicap

George and I took a much needed vacation for eleven days! George had an actuarial conference for a couple days near our destination so we expanded the rest of the time into a much needed get away. We were so thankful to get away to a place that we both love and enjoy so much.

And we had a blast. Every day was soaked with love and enjoyment. Every second, we countered the intense difficulty of this year with a determination to be swept away in the joy of a place we both love so dearly. 

A few weeks before the trip, my Migraines and Fibromyalgia improved enough so that I could start working on increasing my stamina. I started walking on the treadmill five minutes a day on the slowest setting and after three weeks had worked up to twenty minutes a day, four days/week. After eight months of being bed bound and house bound, I thought, "Wow, I'm going to be okay for our trip!"

We knew we would have to bring my wheelchair as I was not up for the amount of walking required. But little did I know how much stamina I would need to simply sit in a wheelchair and be helped in and out. It is much more work than I expected. Every muscle ached...even my smile muscles. And unfortunately, the short two hour twenty minute airplane ride triggered my Meniere's. I was spinning all eleven days. 

Photo property of KLW
My body was in shock and so exhausted that when George went to his conference after we'd been at our destination only 36 hours, I slept for two days, just about all day. We were staying in villas just outside our resort's main lodge, but I could barely get myself to the resort to mail postcards. And when I was unable to make the walk to any of the resort restaurants for lunch (room service wasn't available at that time of day), I felt the bitterness of how dependent I was/am.

I was humbled. Not only did I need the wheelchair, but I could not do much of anything without it or my driver (George). I got to know exactly how to be loaded and secured on a resort bus, boat and monorail. About mid-way through the trip, I could barely get myself in and out  of my wheelchair without an enormous amount of help from George because of how weak I was and because my Fibromyalgia was flaring horribly. George actually fell between the tracks of a ride (Test Track in EPCOT) as he was helping me out, sounding off the ride's alarms.

Photo property of KLW
The last day before we flew home, I was unable to get out of my chair at all. We went to several shows and also on rides that allowed my wheelchair to go in the vehicle including Kilimanjaro Safari (photo on left), Buzz Lightyear Ranger Spin and Toy Story Mania. We also only used companion bathrooms where George could assist me.

No, it was not the "best" idea to continue to push through each day on little sleep with the amount of pain, disorientation, weakness, vertigo and over-stimulation that I was experiencing. But, I needed to. Did I mention that my immuno-supressed husband got a cold that lasted throughout? I'm not surprised that he got sick at the Happiest Place on Earth where so many kiddos and germs lurk. But he continued on, pushing me in my chair which bothered his arthritis as he was walking incredible distances. However neither of us questioned ourselves. We had an unspoken knowledge and agreement that the benefit of being there and doing what we could was so much more than the difficulties.

Photo property of KLW
Flying home was...different.  I could not pass through normal security screening because I had no strength to get out of my chair to walk or stand on my own. So, I a female officer got to know me very intimately as I was patted down extensively.  I had to be transferred onto the plane by being strapped (four belts) to a special chair that fit down an airplane aisle while two men carried me. I was unable to use the bathroom during the flight which was anxiety-producing (thank goodness I'd downloaded movies to my iPad as a distraction). And when we arrived at O'hare and they had to bring me out of the plane to my wheelchair using the special aisle chair. I cannot explain the humbling nature of it all.

Actually, it was more than humbling; it was humiliating. As soon as I was in my own wheelchair and away from the gate, I cried.

Our trip was so lovely, but there was no getting away from the limitations that have increasingly encroached on me. My view was mainly of people's rear-ends and children in strollers and I frequently had to ask George what was happening because I could not see. I had a fellow vacationer tell me "that is where the handicapped people go." I did NOT like being called handicapped even though I have come to terms with being called "disabled". I had a woman scoff at me as we were getting off a ride and say "I can walk better than she can." And she could..though I'm not sure why she felt the need to point it out as she was using a wheelchair herself to get around. Maybe because I am young? Maybe because if I put makeup on and a nicer outfit and have a huge smile on my face because I am  genuinely happy, I can look like I'm not sick?
Photo property of KLW
I took 4700 photographs on our trip as I am enjoying my new spankin' new DSLR. As I was looking through my photographs today, I had intentionally taken photos of all of the "handicap" signs that directed us everywhere. But, I also found something I hadn't done intentionally...photographs of handrails that look more like bars in the images. I did not realize how trapped I felt, even in this fantasy vacation with my best friend and love of my life. I had wanted to get away from it all, but as I cannot get away from myself, I cannot get away from my limitations.
Photo property of KLW
We had been to this destination on our honeymoon in 2006 and again in May 2010. Even though I had used a wheelchair much of the time during our last visit, I had walked some days and  it was sad to see how I truly could not do what I could do less than a year and a half ago. We had so much joy everyday and I hate that I'm writing so much about my limitations but that was just part of what we experienced.

Photo property of KLW
So even on a vacation that was intended to take us away from reality into a fantasy, joy and pain still coexisted. So this is my much needed vent, but what I will remember are the connection George and I had and the rejuvenation we experienced of our spirits.


  1. Kelly, I'm sorry that you had such a difficult time one your vacation, but I'm so glad that you and George were able to have a trip together. Thanks for sending me a postcard, it touched my heart and brightened my day more than you'll ever know. I know your pups are happy to have you home, and I hope you're enjoying their love and company. Take care, sweetie.

  2. Your photos speak volumes about how limiting wheelchairs can be; thank you for opening my eyes! I'm glad you were able to have a good time and have fun with your husband, even though the entire trip was a challenge and very humbling. You're tough for going and getting out and you should feel good about that! :)

  3. First, Thank you so much for the post card! Love my Mickey!!
    It is on my mantle right now, and will move to my studio soon, where I will keep it on my board forever!

    I'm so happy you found ways to keep yourself up and happy even though you didn't feel like it.

    I know there are many things that we have to endure that are humiliating to us because of these darn diseases. It's heart breaking. I'm sorry about the trials you had at the airport. I need to fly to Tucson in early November. I'm hoping I'm better by then, but I must admit...I'm scared.

    keep remembering the joy of the trip.
    I love how that resonates through your post.
    You did it! and it was good. Yes, it was a hard hurdle to get over, and you may have stumbled a few times...but you still sound like you had a good time.

    I hope you continue to get stronger, so next trip you won't feel so dependent...or so bad.

    hugs to you