Doing Disney Disabled

For my kids' spring break, we decided to head to Florida and spend a couple of days at Walt Disney World.  Having never been to Disney World before, this was pretty exciting stuff for my kids. After looking at maps of how huge the Disney parks are, and with the progression of my Charcot-Marie-Tooth disease, I had to face the fact that there was no way I was going to be able to physically walk the parks.  I was going to have to get around and visit the sites on a scooter as a disabled person.  This realization really played havoc with my ego. But, this vacation was about my kids, not about me.  I didn't want my physical condition to hold them back from experiencing the joys of Disney, and I figured that if I was going to have to deal with a scooter, then doing Disney disabled seemed like the best, most handicapped-accessible place to be. 

 Upon our arrival at the Disney resort, we were greeted by the most helpful and lovely staff member who personally walked us through check-in and prepping us for which parks we should visit and the paths we should take to maximize the sites while taking into account my energy limitations.  She was delightful, helpful, and really made us feel welcome and at home.

Upon checking in, I asked our registrar how we were to go about renting a scooter.  She had no clue and referred us to the Concierge.  When we asked the Concierge, she told us we could rent one at each park, and if we let the park attendant know that we'd be going to another park, they'd reserve a scooter for us at the other park.  If we wanted to rent from one of their outside vendors, then we'd need to speak with Bell Services.

We decided to go with the outside vendor so we'd just have to rent one time.  We went and spoke with Bell Services and they assured us they'd have a scooter ready for us in the morning when we were ready to depart for the parks.  Satisfied we were ready for the next day, we went and visited Downtown Disney and enjoyed the shopping, food, water ferry rides, and interesting sites there. 

One thing I didn't take into consideration, Downtown Disney is a LOT of walking.  A lot.  By the time we went from one end of the pier to the other, I was exhausted. While I really needed a scooter to get around Downtown, it would've been nearly impossible to get in/out of the many shops there because the aisles aren't very wide and with the number of people there, I'd have gotten myself boxed into a corner of every store I went in.

The next morning we went and purchased our park-hopper passes and then went to Bell Services to pick up our scooter.  Well, apparently the young man we spoke with was confused and Bell Services just receives the scooter from the outside vendor, while I am responsible for calling and ordering it.  With our scooter rental fouled up, it was going to take 1-2 hours to have one delivered.  With my kids antsy to get to the park, we made the decision to just rent a Disney scooter at each park.

That was a mistake.  We should've waited the 1-2 hours for one to be delivered from the outside service.  The Disney scooter is adequate, but it sucks.  While it goes like a bat out of hell and gets you through the park in world record time, there is no happy medium to its pace.  You are either stopped, or you get whiplash and burn rubber when you push the lever.  Also, for people who may have difficulty with their hands (i.e. arthritis, or some other problem (like mine)), it uses a thumb lever action to move.  It's ok for the first few minutes, but after that it rips the skin off your thumb and makes your hands really tired.

We started off our park visits with Animal Kingdom.  The park staff there were extremely kind and helpful. My kids absolutely loved the rides there.  I couldn't ride "Dinosaur" or "Expedition Everest" because they were too rough for my physical condition, however, being able to see the look of fear and terror on my husband's face as he rode those rides was absolutely priceless!  Mr. I've-never-met-a-ride-that-scared-me met one......... and he had to sit down for a good 10 minutes afterward!

I did get to ride "Kilimanjaro Safari".  That was a lot of fun and I was very impressed that Disney created a special area for the disabled to enter and exit the safari buses.  You ride your scooter or wheelchair through the line and enter the ride through a special door, which then takes you to a loading area away from the throngs of people.  Your wheelchair or scooter is stowed right at the entry to the bus, so you're only a few short steps from entering the bus and returning to your "wheels".  If you are "not transferable" (i.e. must stay in your wheelchair), the safari bus is fully equipped to accommodate a wheelchair, so you can still participate in the ride with your family and friends and enjoy the fun together.
 

After lunch, we park-hopped over to Magic Kingdom.  We had been told that for the $70 we spent on the scooter rental at Animal Kingdom, they would call over and reserve a scooter at the next park we were attending.  That was incorrect.  They do not call and reserve a scooter - no matter if you're an on-site Disney guest or not.  When we got to Magic Kingdom, they were out of scooters.  I was given the option of having to be pushed around in a wheelchair or try and walk the park. That sucked beyond suckdom.  Talk about a major battle with my big, fat redheaded ego.  In the end, my husband had to remind me that while this situation sucked and he understood my need to still appear ambulatory, this visit was about our kids and not about how I appeared to others.  I got in the wheelchair and let my kids push me around.

We arrived inside the park just as the Princess Parade began.  My kids were extremely excited and we "parked" next to a set of stairs so we'd kind of be out of the traffic pattern.  We were approached after a few minutes by a park employee who very, very rudely told us we could neither stand nor sit where we were.  She told my husband to move me in the wheelchair to the back of the throng of people standing around the parade route.  My view of the parade was of everyone's butts.  The park employee required the wheelchair to be pushed so closely to the people in front of us, that I couldn't even get up out of the wheelchair to stand and watch the parade.  I did get to see an occasional Princess' head if they were positioned high enough on their float.  But, for the most part, my view was of butt-central.......... and it wasn't a pretty sight.

After the mix-up with the scooter and now this problem, my attitude was turning quite sour.  When the parade was over, my daughter's one wish was to see Cinderella's Castle.  She grabbed ahold of the wheelchair handles and off we flew in search of the magical kingdom of Cinderella.  Let me say this:  Magic Kingdom is absolutely and positively not wheelchair friendly.  Because of the parade they do every day, there is a train track embedded down their streets.  The wheels in a wheelchair get caught in those tracks.  Doesn't sound like that big of a deal but what happens is when that tire hits that track, you come to an abrupt halt.  This causes you to be flung from the wheelchair like you've been tossed out by a pumpkin launcher. My daughter racked up a few good scores on how far she could toss me as we tried to make our way to the castle.

Disney personnel at Magic Kingdom were resoundingly unhelpful and not very cheerful or even kind, but maybe by the afternoon during spring break they're sick of people.  The park was packed with so many people and to such a degree we could hardly move, and people absolutely refused to step out of the way of our wheelchair.  Tired of the park employee's attitudes when we tried to ask them questions, along with the rudeness of the patrons visiting the park, we  made the decision to leave.  The act of trying to depart the park took on its own dimension of entertainment.  My daughter was pushing me and she is a gentle-natured soul who is shy and very even-tempered.  We discovered her even-tempered nature apparently came to an end with the people who kept stopping in front of us and refusing to move out of the way.

We had an elderly woman who walked right in front of us and stopped.  When my daughter very politely said "excuse us please", the woman looked at us, harrumphed, and continued to stand in our way.  My normally unruffled daughter got a better grip on the handle bars of the wheelchair and said "Outta my way you old granny! I've got a wheelchair and I'm not afraid to use it!".  I was shocked, and to be honest - amused - at my daughter's personality change, but the old hag got out of our way when she saw the very real threat of having her Achilles tendon severed with the push my daughter gave the wheelchair. 

We hadn't made it another 5 feet when 3 gigantic hulks of men stepped in front of us and stopped.  These guys were big and seemed like they would have been right at home in lederhosen while standing on a Swiss Alp yodeling.  My daughter had had enough of Magic Kingdom and these people and said quite loudly "BOWLING PINS!".  The men sensed their impending doom and were surprisingly agile for their size as they deftly moved out of the way of the wheelchair. 

As we rounded the corner, we had to go back down the main street, which has that blasted embedded train track in the road.  Our only option, due to the throngs of people standing along the sides of the street and completely blocking the sidewalk, was to go down the middle of the street, inbetween the train tracks.  As we made our way down the street, a Disney Fastpass Photographer stood right in the middle of our path and was watching our approach.  My daughter called out "excuse us please".  He didn't move.  I called out "Excuse us, we are trying to get through".  He still didn't move.

My daughter's choice was to either ram him or turn and try to weave around him while hoping the wheelchair tire didn't get caught in the train track. Unfortunately, the tire got caught in the track, and to such a degree, that I was launched out of the wheelchair and did a face plant on the cement.  It took every ounce of restraint I had not to shove the photographer's camera .......... well, you can imagine.

My daughter was horrified and near tears.  She thought it was her fault.  We settled her down and then my husband helped me up and back in the wheelchair.   Then he took control of pushing the wheelchair through the throngs of people.  He'd had enough and he was no longer kindly asking people to step aside.  No, these folks were no longer getting the benefit of a verbal warning.  He nailed more Achilles tendons in the first 3 feet of moving my wheelchair than I could count.  People learned quite quickly from the string of people groaning in pain to step aside - and to be quick about it.  It was amazing how quickly the sea of people parted and allowed us passage.

After we returned the wheelchair, my kids decided they'd had enough of Disney and wanted to leave.  Their experience at Magic Kingdom was of such rudeness and callousness by the park employees, as well as the patrons, that my children expressed no desire to ever return to a Disney park. Pretty darn sad. We have had to remind them regularly of the fun and kindness we received at Animal Kingdom and that Magic Kingdom was only one bad experience out of the better part of 2 days of fun.  Still, it's sad when adults at a CHILDREN'S theme park ruin the starry-eyed wonder and fun that is to be had there for the kids.

One thing I know for certain from having visited Disney as a disabled person - Magic Kingdom is absolutely not wheelchair friendly......... unless you think you might enjoy the experience of being flung out of a wheelchair like a pumpkin to see what kind of distance you can achieve.

Written by Christie Bielss

 

"Necessity is the Mother of Invention"

A couple of weeks ago I was trying to hang pictures on the wall.  No matter which way I grabbed the nail, as soon as the tip of the nail touched the wall, it fell from my grasp.   There is nothing more frustrating than trying to do something and having it fight you every step of the way.  Trying not to mutter unladylike words under my breath, I heaved a big sigh.  "Necessity is the mother of invention"~Plato (or maybe it's Aesop - it's up for debate).  It's a phrase I find grossly annoying but so very true when it comes to dealing with physical limitations brought on Charcot-Marie-Tooth disease.

 

Ok, to be perfectly honest, losing that ability was frustrating as hell. There is just no other way to describe being able to do something one day and then having that ability stripped away the very next day.  So how do I deal with it?  I do what any normal redhead does.  I stomp my feet, I throw a tizzy, I bite my family's heads off if they offer to perform the task for me, I go and beat the stuffing out of a pillow, and then I get back to the task at hand.

Do I feel sorry for myself?  Not generally.  Maybe it's because I vent my frustration "extraordinarily well" (LOL) at the moment something happens, which makes it easier for me to move on.  It's also because my family and friends have always pushed me with the "in a room full of people, I'll take mine" attitude since this disease reared it's ugly head over 20 years ago. 

For me, I think what keeps me pushing foward most of all, is hanging onto Isaiah 40:29-31
"He gives power to the weak,
And to those who have no might He increases strength.
³⁰ Even the youths shall faint and be weary,And the young men shall utterly fall,
³¹ But those who wait on the LordShall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint."

In the grand scheme of things, life on earth is short.  One day I will run again and maybe have races with my kids.  One day I will be able to pick up small objects again.  One day I won't have to worry about my arm twitching and causing my food or drink to spill.  One day I won't be self-conscience about how atrophied my hands look.  One day is a day I look forward to.

Until that day of wholeness arrives, I choose to try not to be frustrated at what I can't do and focus on what I can do.  Until that day arrives, I choose to live life by plastering a smile on my face even though it would be easier to fall into a deep well full of griping, moaning, and crying.  Until that day arrives, I choose to improvise and keep moving forward the best way I know how.

I put that nail in the wall all.by.myself.  After mumbling and grumbling under my breath when I dropped the nail several times, I realized that while my fingers may not be able to hold that nail anymore, my hand can hold a pair of needle-nose pliers, which can hold that nail long enough for me to pound it into the wall.  Within a minute or two, that picture was hung.......... and it never looked better.

Written by Christie Bielss

My Chains Are Gone

"My chains are gone.  I've been set free.  My God, my Savior has ransomed me.  And like a flood His mercy rains, unending love, amazing grace." (Amazing Grace (My Chains are Gone) - by Chris Tomlin

Everybody has a secret - whether good, bad, exciting, embarrassing, frustrating, or one that causes great struggles.  The secret for me was embarrassing, frustrating, and one of great struggle.  The picture you see is of my "legs" which have supported me and helped me to walk and stay mobile since October of 2006.

On December 16, 1992, just before Christmas, I suffered an injury while lifting.  That injury consisted of the bulge, herniation, and rupture of 3 discs in my lower back, 2 discs in my upper back located just between my shoulder blades, and the tearing of almost every muscle in my back.  My back was a mess.

I was in physical therapy in an attempt to help me recover.  As I struggled through the ungodly pain, things started to change.  Simple things like putting on a pair of earrings became extraordinarily difficult.  I noticed I couldn't feel things I was touching.  And then I started falling.  I'd walk on the sidewalk and if my foot went onto the edge between the grass and the concrete, I'd fall.  If I stepped on a pebble, my ankle would turn and down I'd go.  Heck, I could be standing still and I'd fall over.

The neurologist I was seeing said it was because of pinched nerves and I needed to undergo a risky surgery to fix the problem.  I sought a second opinion and was able to get in with the Chief of Orthopedics at Baylor Hospital in Dallas.  With my mother accompanying me, we met with this doctor who took one look at me and negated the surgery and instead called his best spine orthopedic and sent me to him right then.  This doctor not only concurred with the Chief of Orthopedics' opinion but also determined that something else, separate and apart from the injury, was creating these problems.  He called the head of neurology and sent me over immediately.  Being sent to a 3rd doctor in as many hours caused an uneasy feeling to start growing in the pit of my belly.

After an examination and an Electromyogram, I was told I have Charcot-Marie-Tooth disease.  I looked at him like he had a third eye and asked "I have a shark disease?!  I haven't even been in the ocean for several years!".  He smiled gently and told me I have one of the diseases covered by the Muscular Dystrophy Association and then spelled out the name of the disease. He asked if I had feet like anyone else in my family.  "Yes, my Dad.".  He immediately wanted to see him, so my Mom and I ran to their house, picked him up and brought him to the doctor.  After an exam, the doctor confirmed the genetic link.  An appointment was made for me with the MDA Clinic at the University of Texas Southwest Medical Center.

In July of 1993, I was seen by the specialist at the MDA clinic and the diagnosis was officially confirmed.  I have Charcot-Marie-Tooth Disease, aka CMT.  An inherited peripheral neuropathy - which is a nicer way of saying:  losing normal use of extremities due to the degeneration of the nerves and loss of muscle.  My prognosis was that I should stay about what I was at that time.  My how little they knew.

As time passed over the years, I kept losing strength and muscle.  The MDA doctor admitted he hated seeing me because I was his only case he couldn't figure out.  He'd say I was going to continue declining and I'd hit a plateau and stay the same for a period of time.  He'd say I was on a plateau and I'd start a steep downhill dive.  Being a typical redhead, I kept him guessing.  And then it all seemed to culminate in August of 2006.  I woke up one morning and fell down as I tried to get out of bed.  My legs were like jelly.  I was exhausted after walking less than 10 feet.  My hand strength had decreased dramatically as well.  I called the doctor and was told I'd need leg braces to walk and  devices to help with everything from eating to dressing.  The prognosis at my next appointment in the Spring of 2007 was that I'd be a functioning quadreplegic within 5-7 years, due to my rate of decline.

My husband, kids and I watched the movie "Forrest Gump". A few nights later as I was tucking my son in bed, he told me he'd been praying for me to be "like that guy in the movie". I had no clue what he was talking about. With a great big smile he said "You know! The one where he's running really fast and the leg braces fall off his legs! I've been praying that you'll be just like him!". At the time I laughed hysterically that he was praying for me to "Run Forrest run!".

Even with the unwavering support of my husband, children, parents, family, and friends, I felt alone.  Through the years I'd lost one ability after another to do simple things.  No one could understand having the rug pulled out from under me one thread at a time.  And good grief, the shoes I had to wear with the braces were hideous.  Not to mention having to wear knee-high socks to protect my legs from the braces.  I felt like a freak and that I was alone in this fight.......or was I?  After a long period of being angry, depressed, embarrassed, fearful, and many other indescribable emotions, I realized that no matter how hard I had tried, I could no longer fight this disease alone.  It was then, with the help of my pastor in Champaign, IL, that I started climbing out of that deep, dark black hole.  I finally realized I wasn't alone and all I had to do was look up.  No matter how bad this got, I learned that Jesus would carry me through......... and maybe inspire some manufacturers to create shoes for people with braces that weren't absolutely hideous.

As this knowledge and strength found a foothold in my life and in my heart, my physical strength began to rebuild.  Maybe it was a coincidence or maybe it wasn't, but all of the sudden in the summer of 2011, and without any rhyme or reason, I wasn't needing my leg braces to walk across the house.  By the summer of 2012, I could walk through the grocery store without my leg braces.  By the winter of 2012, I only needed them when I went to church.  And now, in June of 2013, they sit in my closet used only when I'm afraid my legs will get tired.  My hands are still declining, but I trust that the Lord will give me the strength to handle the curves in the road ahead.

So, when I hear the song "Amazing Grace (My Chains Are Gone)" by Chris Tomlin, it holds special meaning.  No matter what may come my way, my chains are gone, I've been set free.

by: Christie Bielss