Monday, October 9, 2023

On Visiting Disney World While Disabled (How I made it work and what I saw)

It was big. Very big - The idea that in the middle of my cancer battle, while also balancing Ehlers-Danlos Syndrome, Dysautonomia, and the other conditions it brings along I could, somehow, travel alone from Tennessee to Florida and to Disney World for four days. I knew I had to do it, though. The break was needed, and the desire to prove that this broken body could make the dream to experience Disney as an adult happen. A lot of thought, research, and advanced planning went into it. Here's what I did. I hope it helps others.

The Flight: When buying my tickets, I reached out to the airline to say I would need a wheelchair at all legs of travel. I also backed it up with a call to the airport a week before the flight to review their offerings and inform them I was traveling solo. You need to reserve as much energy as possible as travel days are so draining even for the able-bodied. Make sure to have tip money for the Skycap employees who will help you get from curb to gate. I knew my checked bag was going to be overweight on the flight out due to bringing IV fluids along, so made sure the airline and I had worked that out ahead of time. You also should contact TSA Cares with your information. They may not call until the day of your flight, but they will email back details on what to expect with TSA and acknowledge any accommodation you bring up, like traveling with liquids, medications, implanted devices etc. Give yourself extra time as you will have to wait for your chair, and sometimes TSA takes longer as you will get patted down and swabbed. 

The Resort: It was the best decision ever to stay at a Disney resort. I wanted to spend the most time at Epcot and Hollywood Studios, and several resorts had direct Skytrams to there. No having to cram into a bus or the Monorail! The Skytram works so well for wheelchairs and scooters too with lots of space and no pressure to rush on and off. I stayed at Pop Century and found the staff to be incredibly helpful. I used Disney's recommended scooter rental company, which awaited me when I arrived, so no waiting around for delivery. An employee helped me get the scooter to my room and then helped with my luggage after seeing I was traveling alone and had physical limitations. 
I had a handicap-accessible room and, while the shower wasn't the greatest for accessibility, the rest of the room had enough space to store and turn the scooter or move a wheelchair around. However, the door was difficult. It was too heavy to open one-handed while moving the scooter forward with the other. I managed, but it was frustrating at times. 
The food options at the resort were great, with healthier options on top of standard fare like pizza. The staff was willing to work with some dietary needs and modify dishes. The in-room cooler and counter above it allowed me to bring my travel blender and items for making protein smoothies for breakfast - something I need with my GI issues. There were microwaves in the resort's eatery for those who needed it.  

The Parks: Disney has the DAS program for those who cannot handle long lines and require assistance. It is vital to set this up as soon as you can, which is 30 days before the trip. You'll be interviewed by a Cast Member on video chat as to why you need it and your picture taken through there. Then, they'll set up DAS-Advanced, which allows you to pick two rides each day ahead of time, so you already have a partial schedule before even arriving! Once in the park, you then can choose one ride at a time with the regular DAS system on the Disney park app, even in between the ones already scheduled! I knew exactly when to show up for a ride or show and never was in line for more than 10 minutes. The Cast Members were super helpful and moved the scooter from the entrance to the ride to the exit and made sure I could easily access each ride. There were some fun in-character engagements during those, especially in Hollywood Studios. 
The Cast Members (employees) really try to make the visit magical all throughout the park, especially when they see someone who is differently abled. Even the support staff in places like the grab-and-go eateries were helpful. At one place, it was very crowded. One of the employees noted balancing my food tray, drink, and bags on the scooter would have been tough, so they took the tray, found me a place to sit, and even went to get my drink for me. If you have special dietary needs, letting restaurants know ahead of time can ensure accommodations. I ate at Prime Time and they had a menu specifically for those with restrictions and also made a small change on the spot for me with a side dish. The crepes place in Epcots' France area also asked about restrictions and modified my dessert to work around a restriction.  
From the rides, to the shops, to even those monitoring the bathrooms, nearly every Cast Member was working to make sure the experience was magical. I have never been to a place so open and friendly to and inclusive to the differently-abled. This made my visit to Disney as a disabled adult even more incredible. I could relax and submerge into the magic of Disney and have moments where I felt like a kid again.


Wednesday, October 4, 2023

On August 26th, 2023 (You Learn to Like Pink)

 One Year. August 26th marked one year from when I learned I had Stage 3 Triple Negative Breast Cancer. I'm alive. I'm still fighting. We don't know if I'm free of it yet. So much has had to be thrown at it. But I am here. 


Here's a reflection.  

"PINK" 

You’ll never forget where you were on that day when the phone rings with results

The moment in time when you learn  your body has turned against itself

Grown things it should not and created dangers to your life

Your heart stalls. You forget how to breathe

The color drains from your face as reality sets in

The voice relaying their apologies along with what kind it is

Next steps, how they’ll do all they can, but more tests need to be run

At home you get lost looking it up

Throwing yourself into research, statistics, and the fear grows

The fog sets in as scans are done, blood drawn, and you wait

And pray they don’t find it anywhere else

The meeting with oncology with all the big terms

Of big drugs and big treatments with big side effects and long times in the unknown

But it is a chance to survive

You’re sent home with a binder, flyers on support groups, resources

And items in pink

You learn to like pink

Through preparation, and the “thoughts and prayers” from others

And the insurance calls and the many nightmares 

You put plans in place and pieces together and the day comes

The needle inserted, medications given to help with side effects

Then the drugs infused from a nurse in a hazmat suit

Because of how volatile the cocktail is

The red devil that could be part of the angelic cure

A talk with the nurses. Reminders of what to expect

You are going to get worse before better

Hair will fall out, taste will change

You’ll vomit, be weak, and it will hurt

But you need to eat and rest and try to keep your strength

Looking at those around you in various phases of battle

A bag given with handmade comfort items

And other things to see you through

More items in pink

You learn to like pink

Days and nights blend until you don’t know where you are

The simple act of breathing, talking, and eating, takes so much

The isolation as those whom you hoped would call

Or maybe those who would even visit

They’re all quiet or excuse with “don’t want to disturb”

You get it, they are uncomfortable. But it hurts as bad as the drugs do

Those moments when someone does reach out

A call, a card, a text, a package

It lifts your soul when you can barely lift your head

The head that no longer has hair

You fight, and pray, fight, drag through, battle on

Counting down cycles as your counts look like hell

And you hope your body can hold up through this curse that could be the cure

Wigs, scarves, earrings, bracelets, Soft shirts, awareness gear

Support group calls and webinars, Appointment after appointment

There’s so much pink

You learn to like pink

And finally, the infusions end and you get to breathe

A few short weeks to get some strength, put on some weight

Give those supporting you a chance to rest, as they are exhausted too

A break before the next round of the fight starts

Surgery to cut the remnants of the offense

The part of your body that went haywire now removed

Along with so much more of you.

Incisions, drains, drama, and waiting on pathology

The wait is agonizing. Was there more, did it spread 

The weeks of radiation that follow

Burns and blisters. Exhaustion worse than ever before

But your hair is starting to come back,and food doesn’t taste like metal anymore

There are talks of follow-up treatment

Supportive medications, lingering pill chemo

The wait…. So much waiting, Months in limbo before the next scan

And all along the way

You learn to like pink