Getting The Golden Ticket – A Guide To Surviving The Happiest Place On Earth
I just got back from a Disney vacation. Actually, let me correct that…I just got back from a Disney vacation for 6 days.
I just got back from a Disney vacation for 6 days in the coldest freak weather Florida had on record.
I just got back from a Disney vacation for 6 days in the coldest freak weather Florida had on record AND had flights that would bring a grown man to tears.
I guess you can all see where I’m going with this….when the idea of a vacation at the “Happiest Place on Earth” was first brought up to me I laughed so loud I woke up the 3 year old….then I realized my husband was completely serious. The idea alone scared the bejeezuz out of me. Don’t get me wrong, we have done Disney before but 2010 hasn’t been the kindest year to me Lupus-wise. In fact, in 2010, Lupus has smacked me across the face, body slammed me into the sidewalk and kicked me into oncoming traffic. Dramatic? Probably. But those of you who know what chronic pain feels like, know that I’m not too far off from the truth. How was I going to function? How was I going to walk what seemed like less of a trek across countries from the World Showcase, and more like a trek from across countries from across….well, other continents? How was I going to stand in lines for hours, my back screaming, my joints swelling and my muscles failing? I thought about protesting but seeing the cherub-like excitement (yeah I said cherub…I like to enhance my memories somewhat) on the faces of my children shut me up fairly quickly. Somehow I had to make this work. I would make this work…or die trying.
I think for 9 months I blocked it out. It wasn’t really coming if I didn’t think about it, right? I felt horrible for dreading it. This was a family vacation….we were making memories for our kids…something for them to hold onto and remember when they are teenagers in a couple of years and think I am the devil and have the intelligence of a box of paper clips. I couldn’t help it, though. I knew what was in store for me and knew how much I would pay for every glimpse of mouse ears that we got. Spoonies know what I’m talking about….I like to call it “autoimmune payback”. Whatever checks my determination was writing, my body couldn’t cash without weeks of subsequent bed rest and pill popping. Quicker and quicker the day came and I found myself having Animation-Induced Panic Attacks. In anticipation of what lied ahead, my Rheumatologist almost tripled my Prednisone. With that much steroids in my system, I feared for Mickey’s safety and the security of those around me at Space Mountain. Prednisone makes my mood spin around faster than the Mad Hatter’s Tea Cup Party ride. It wasn’t going to be pretty.
The day finally came and I woke up feeling like I had just gone a few rounds with Tito Ortiz in a UFC grudge match. Sock by sock, I packed slowly and we headed for the airport for the first leg of our flight which was interesting to say the least. It started out with wine at a café in the smallest airport known to man. I seriously think the entire operation could fit inside of my house and have room left over for parking. You know you’re in a small southern airport when you’re served Sutter Home in a plastic red solo cup. *insert favorite Jeff Foxworthy “you might be a redneck” joke here* I had been hurting all day, smiles to the world but tears when no one was looking…you guys know the drill. This was my vacation so of course, in grand autoimmune disease fashion, a flare up tapped me on the shoulder and said “I gotcha, sucker!” I was popping medicine like they were narcotic-laced Chicklets as I boarded the first flight that I like to refer to as “Oh God why did he have to sit next to me?” When Spoonies are hurting we want two things….quiet and quiet. No such luck to be had. I heard all about his daughter and her 16 year old opera singing self as I frantically searched for my iPod for some Motley Crue to deliver a good dose of shut-up. I knew the journey couldn’t get much worse. Oh how wrong I was…karma was laughing hysterically at me while my son played a game of “Who wants to see me drop my pants in the Charlotte airport?”
After a delayed flight and a 4 (yes, you read that right) hour layover, we finally boarded our second flight and arrived in Orlando at about 1:00 in the morning. As you can imagine, everyone in the Kennedy party was just super pleasant and chipper at this point in the trip, *insert eye roll here* and all I could think about was that we had a character breakfast to be at around 7am. By my calculations, that translated into roughly…ohhhh about 2 hours to plot how to hook up a coffee IV drip and angrily pelt Goofy with biscuits from the buffet. As suspected, rolling up into the hotel at 2am provided just enough time to doze for 10 minutes as my daughter assumed some sort of spread-eagle yoga pose across the mattress I was laying upon, giving me exactly 4” of bed to curl up on and wait for the magic to begin.
Now that I have ranted for a page and a half, we come to the real point of my story. My friend and fellow Spoonie, Carly spoke of a secret that forever shall hereby be known of as “Willy Wonka’s Golden Ticket”. She told me about a magic card that would undoubtedly be my best friend the whole trip. I was skeptical, but followed her instructions to the letter and after securing a wheelchair for the whole trip, wheeled myself right up into City Hall (otherwise known as Guest Relations….pffffft, Disney is so dramatic…) and explained my situation. I tearfully (not joking here….I really did cry. Not sure if it was because of pain or lack of sleep, but it happened, so there ya go…) told them of my battle with Lupus and how there was no way my body would allow me to walk across the parks much less stand in lines for hours. With a knowing smile, Jonathan (I’m determined to write this guy into my will…) pulled out a red and white card and signed it over to me. Now pay attention here, Spoonies, and write this down for future reference: it is called the “Guest Assistance” pass. This pass not only allows you to by-pass the lines, it allows up to 5 of your guests to follow right along with you. No muss, no fuss, no lines, no crimes. I have to tell you all that it was the greatest thing ever invented beyond Reese’s Cups. We never waited longer than 10 minutes for a ride or attraction, and even that was a rarity. You see, there is a separate entrance for the Golden Ticket holders and I was totally channeling Veruca Salt by the end of the trip.
Kids, here is the part that we, as Spoonies, are used to…the part that no matter how much awareness comes into the mainstream or how many dollars are raised will probably always overshadow us: As I was wheeled into the special entrances, I got the infamous dirty looks and under-the-breath mutterings. You know how it goes…say it with me… “but she doesn’t look sick!” I knew it would happen…I mean it always happens…but it never stops stinging or feeling like a slap in the face, regardless. No. I don’t look sick…and miraculously sometimes I don’t act sick either. A lot of times women in their first trimester of pregnancy don’t “look” pregnant but that doesn’t make them gestate any less than having an invisible illness makes me hurt. Unfortunately as a misunderstood member of society, Spoonies are used to snap judgments and dirty looks. Sometimes we can look the other way, sometimes we get mad, sometimes it makes us cry….but it always hurts. Always.
The rest of my trip was a blur of early morning breakfasts, cold temperatures, purple toes, roller coasters, six-foot mice and unforgettable memories of the beaming face of a 3 year old who met and hugged his hero, Buzz Lightyear for the first time. At that moment, after 45 minutes of waiting in a character greeting line, all the pain, frustration and loss of spoons melted away. His face said it all and was worth it all…Golden Ticket or no Golden Ticket. Nobody is promised tomorrow. None of us knows what the future holds for us and this is especially true for sufferers of invisible illnesses. I could beat this evil monster called Lupus and grow into a very feisty gray haired old lady with an impressive ability to use a cane as half a pair of nun chucks….or it may someday get the best of me. That’s the hand I’ve been dealt and I have made peace with it. I dreaded my Disney vacation with every fiber of my being but a man in a white and purple space suit and a smiling little boy with a mop of blonde curls changed it all.
It was worth it and I’d do it again in a heartbeat. There’s always provisions that can be made and shortcuts to take when it comes to making lasting memories with your family. My kids deserved nothing less than the best of what I have left to give….and they got it.
I’m just a Spoonie cleverly disguised as a normal 30-something mom of three. I don’t look sick…and to whoever ever says this loudly, under their breath or thinks it silently, I say:
My secret is a steady supply of family support, “friends in the box“…..and maybe even a touch of Pixie Dust. Because when you “wish upon a star”….anything can happen. Even at the Happiest Place on Earth.
Article written by staff writer, Stephanie Kennedy.About Stephanie: I live in Fayetteville, NC with my husband and 3 always hyperactive and occasionally adorable children. I was diagnosed with SLE in 2001 at the age of 27 and in the time since, have added Scleroderma, Hashimoto’s and Celiac disease. In my day-to-day life I am a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and part-time fitness instructor. For the past two years I have served on the Executive Steering Committee for the LFA’s Fayetteville Walk For Lupus Now event.