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.

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

On Living

 I want to live.

It screams in my head all day and night.

I want to live.

Even knowing for 5 years now that I wasn't meant to make it past my 50's.

I want to live and prove the doctors wrong.

Now. Cancer. Rare triple negative variant.

Numbers like only 10% of breast cancer patients get it.

Survival rates are high if not in stage 4, though reoccurrence is just as high.

But I want to live.

This giver and helper, whom fights for others every day.

Locally, regionally, globally. With every breath I take.

It's a bad day if I've not helped at least one person.

Or made someone smile.

I want to live.

When every big positive moment is crushed by negatives just as big.

A perfect-for-me home in a cute little town. 

So excited to move and start anew after so much pain.

Triple-negative, stage three, cancer.

The new start starts with this stigma. Will they even care to know me for me?

But I want to live.

Getting to see friends and former co-workers at a luncheon. Leaving happy!

My truck and I were damaged on the way home from it.

These two latest examples in a line of so many it is overwhelming.

Any time something extraordinary, something positive happens.

Any time I tell people about these good things and allow the happiness to show

Every time it gets knocked away, stomped on, kicked apart, destroyed.

Yet I want to live.

Even if it is just for the little good things that happen versus the big.

Like making someone smile, or a moment of discovery in nature.

This giver and helper who races to help others

Who fights against a genetic nightmare so others can get better treatment.

This friend, niece, cousin, who drives my damaged body many hours north and south every year.

Who calls and messages long ahead of time to try to make plans because I love you all.

Who gets "call when you get here" when I'm not sure there will be time or energy.

Who knows I don't mean enough to any of you to do the same. 

No one ever visited me, and there was so much I wanted to show you!

No calls in between visits unless I made them to you.

Yet, I want to live.

The helper of helpless cases as my online friends call me.

But they know I'll jump in and be there at a moments notice.

Now begging, pleading, for help from those around me near and far.

First in the winter as my world of 15 years came apart.

When I had to rebuild, piece by small piece, into something better.

The silence, the lack of help, was intense then. 

The actions of someone I barely knew anymore put a roof over my head

So I can live.

Now, the silence, the lack of action, is intense once more.

I don't need  "You are so strong, brave, resilient."

I need rides to doctors or ways to pay for rides until the truck is fixed. 

There's not enough to cover sudden repairs and rentals on top of bills.

Not when one is in the government's tight fist due to disability.

And I want to live.

When treatment starts, it's going to be making sure I'm nourished.

Healthy delivered meals that are easy to heat and eat.

You ask how you can help. Or say you feel helpless and don't know what to do.

I put out what I need the most on social media, instant message. texts, calls.

Silence.

But I need to get to these things to live!

Don't you want me to? 

Or do you think my damaged existence and its bad luck has run its course?

I don't. I know there is more I was meant to do.

More I was meant to see. 

I want to live.

On Deconstructing Part One: The 14th and Women

*Note* This is a multi-part series that's taking days to maybe weeks to write. Currently, three parts are in mind: The Women, The Others, and then The One 

Oh! It's just turning over the ability to have an abortion over to the states again is all! I've heard it over and over. That and how precious all life is. Yes, all life is precious, very much so. 

But this ruling had only partly to do with abortion and the politicians who repeatedly deny support to the children and families once the babies are born or do anything substantial to make it easier to prevent the pregnancies to even begin with. It partly has to do with what happens next with those women and families to keep them controlled by certain factions. And, it has even more to do with the vagueness of the 14th and what is likely next.

In the end, it affects Everyone. 

The ruling blew the door open to everyone's privacy, autonomy, and basic rights. It says that, depending on the state you live in, you may not have any rights or have limited ones to plan a pregnancy. Your ability to handle a crisis pregnancy from rape or incest or carrying a child who will suffer before dying young in a state where that same party cries over the cost of the disabled is even more restricted or outright gone there. To prevent pregnancy in the first place is restricted and controlled by someone else totally disconnected and the other half of what it requires to get pregnant... the male... has nothing holding him back and even is supported with tons of options to make them want more sex. There's little consequence to them when the pregnancy happens, though, and lots of blame on the woman. Also, if you're needing to take a hormone for other medical reasons, there's now fear of repercussions. And what about those who want to protect their already existing family or frail future from the narrow-minded "should have taken better care then" who are themselves not caring what caused the situation in the first place? All of the above is scary enough. It's now worse in these states. 

And, no, you can't just "vote" it away. And those who are most affected cannot just "move out" of the state or leave it temporarily. These are the at-risk, the lower income, the minorities, the children, those caught in religious extremism, and more. This goes far beyond the right to have an abortion.

It affects situations like the 11-year-old two counties over here in VA who just gave birth to a girl conceived by her 13-year-old brother raping her. There are so many aspects of their lives being covered up with "religion" as the excuse so three young lives are in crisis. Even away from it the governmental system is so broken, their situation is bleak. I could write an entire blog alone on the scenario around her and others like her now more stuck than ever in a system engineered to bring a baby to birth under "Pro-Life/Anti-Abortion" but with politicians who will not support them after the birth and this system set up to devastate the victims like children and disabled.

Here is an example: In my own first pregnancy, which thankfully ended in miscarriage, I was on birth control but also an antibiotic. It failed the night my first husband went into a drug and alcohol spurned rampage through the house, then took me against my will, leaving me bruised and knowing I could not say a word, or it would be much worse. Had the miscarriage not happened, I would be the mother to a now 19-year-old, having been stuck and dealing with custody arrangements, forced to engage with someone who abused me for years ... or without him, because he didn't pay anything else so why pay child support and the struggle that would also bring on.  

At least I had a family and college education and career, though. Imagine someone who didn't have a supportive family or a career that paid enough for childcare and insurance. Who would be working multiple jobs and barely gets to see their child to raise them and leaves them in the hands of strangers for all but a couple hours a day. Who has to handle one political party's refusal to keep or expand help like childcare vouchers, housing help, SNAP, Medicaid, welfare, paid parental leave, etc., and watch both parties' refusal to set up transitional programs. It is an ALL or nothing system- you live ALL on the system or none and the results are often catastrophic. There is no real in-between. The desperation and knowing end up with women trying to get an abortion be it the pill form that terminates before 10 weeks or one more involved. This is especially true before ACA when birth control wasn't required to be covered, but even now after because it can be so costly.

My second situation was when the decision was made to stop trying for kids in my second marriage. Both of us had genetic illnesses they could inherit. I was getting sicker constantly and knew I'd be unable to give a child the attention and upbringing they deserved. He had his own issues that needed more focus, and it wasn't fair to put a child into that. We were called selfish by family members and churchgoers. Then my OBGYN hit me with the "I need your husband’s permission for you to get your tubes tied" when I learned I couldn't take most birth control anymore and an IUD was out of the question with my condition. This was because I was still child-bearing age! Never did get that done. So many others end up with this scenario, and now they and their lives and children's lives are at more risk.

In some states with these politicians who are banning abortion, some are already restricting certain birth control, two are criminalizing some parts of having a miscarriage, some are eliminating emergency contraception. They've been restricting what is being presented in public schools and eliminating handing out free condoms while students who give birth have to be back in class within a week. Pregnancy does not qualify for homebound instruction in most states anyway so education is interrupted. 

So what are women to do? The painful progress forward around abortion, not just the ability to get one but the ability to prevent one from even being needed, has taken steps back. 

Families everywhere are going to suffer. Our country will suffer. 

In Part Two, there is "The Others" a side of this that is just as scary... the next steps already being promised pursual by one Justice. The ramifications of weakening the 14th are just getting started.

On Where The Road Led

Envision a road. It's a one-way street but has two lanes.

A woman is walking on it alone and struggling.

She has a large bag on her back, baggage from the past.

Every few steps she takes an item, looks at it, talks to it, then drops it.

In time, it was a lighter load and she was able to manage better

After a time, another joined her on the road.

He too had a bag on his back with baggage from the past.

But they soon were walking side by side and talking.

Before too long they were hand in hand.

Instead of the baggage, she was busy tending to his needs.

He did not know much about the road so she had to show him or do many things for him.

He couldn't eat much from places they came across, so she made special meals.

She didn't know much about the technology he carried with him, so he taught her.

They loved to travel together and enjoyed all of the imagination that comes from watching the night sky.

And together they continued on.

Within a short time she began to limp, limbs became damaged easy, the pain was so great.

Yet she continued to do more than her body could accept. 

He was struggling with his emotions and memory, and she worried so much for him.

Along the way mistakes were made by him and he'd look away for long periods of time. 

She forgave him and would try to move forward, though she was getting tired.

But he didn't seem to forgive her for any mistake she made. 

She asked those they sometimes traveled with and those they knew from before on what he was upset about.

Were the perceived worse offenses so terrible? No one seemed to think so.

And so she kept walking, though now with a divider between the two, though side by side.

Her exhaustion was growing, but she leaned over the divider to tend to him while walking.

Sometimes he'd help her get to the side of the road for something needed.

But any time an injury would halt her, he'd linger a day or two but then move forward again. 

She had to catch up or be left behind or watch him struggle as he still didn't know so much of the road.

The road became full of potholes.

Her injuries grew worse but she kept taking steps forward.

She found solace in the technology he taught her about, found an escape from the pain.

After all, he'd been escaping this way every day from their first moments together.

But that was an offense too she soon learned, and by now she was fighting fear.

He was walking on the far side of the road, away from her.

She'd go to the divider multiple times a day, to talk, to hand food, to offer help on something.

He'd look annoyed, but then complain that she wasn't doing it enough when around others.

It went on and on as she stumbled forward.

Some came and stood in the divider and tried to get them to walk closer again.

She'd walk along it, hugging it and doing what she could while hurting.

Then one day, he stopped responding at all.

And then pointed out that he was getting off at the next fork in the road.

She needed to prepare to be so damaged and continue forward on her own.

And now here she is, looking at that upcoming fork and wondering how she can.

She worries as he still doesn't know the road very well. 

She's been doing so much for him... now she has this tiny window to finish showing him so he maybe can walk on his own.

She'll do this because she still loves him so.

And she'll do this while she has to figure out how to limp forward on her own too.

So damaged. So tired. But so determined.

Change is coming. She has to be ready.

The Mixed Up Year

 While we have a month and a half until 2021 hits us, I've been reflecting a lot on this crazy year. You know, many of us tend to say that about any given year, but I don't think we'll be doing that anymore. This takes the cake! Warning: This is raw.

Some say "If we'd only known" back in January what this year would be like. Some of us had some idea. My husband was watching China closely when the first signs of COVID hit. By three weeks in, he was warning that we needed to stock up because that virus was going to make its way to us and looked bad. How right he was, and I'm glad we did stock up. As the naysayers started in on their conspiracies and people started fighting for toilet paper, we already had masks, essentials, and more. When my main EDS/Dysautonomia doctor sent his recommendation to lock down, I'd already been for two weeks. There were ample amounts of fear and frustration, especially as some of my friends and family were calling it a hoax or "just the flu" or saying it would do the world a favor by taking out the sickly (um... I'm one of those...) and insisting it would all vanish in November. Well, we know how that has gone, and my already small circle has shrunken over it - some because they died of COVID and others for their continued hurtful words and posts without thought to find out if it were even true or realize how it would affect others. I miss quilting group. I miss being able to freely go out and meet with people. I miss seeing my family and traveling. It was already so hard to do so with my conditions, and now the pandemic made it impossible.

Spring hit, and with it, we were fully in the pandemic. At work, our numbers of enrolled students were exploding with families wanting proper curriculum for their students instead of quickly assembled packets and online busywork. Right in the middle of it, we learned the dual-enrollment program I run was in big trouble. The platform we were using was getting shut down with barely a 2-month notice. My entire summer was a race to find a new program, learn the ins and outs once one was found, help with the contract, write a new handbook, move students over, train the advisors, and more. It was rough and incredibly stressful, but I did it and the students are really liking being with a proper college now. 

While that was going on, my beloved online getaway was in a crisis of another kind. In September of 2019, I'd been asked to help build up the roleplay community in Star Wars Galaxies: Legends. Many of my friends from the original game were there, and they didn't like the way some roleplay leaders were acting. There was a lot of elitism and a lot of their way or ostracized, and there was a lot of behind the scenes bashing of people. So, I jumped back into that world with my now aged up Lazana and her niece. Through Lazana, I made sure everyone who walked into Coronet Cantina (a roleplaying hot spot) was spoken to and had a friendly face. That's all I did other than her entertaining. But, because of that, I gained a following. When epic drama hit that group, and people started to split up, nearly everyone followed me instead of them. 

Suddenly, I became the enemy and the attacks hit hard. At first, I fought back with examples of the poor behavior, and the Wrecking Crew returned with lies so absurd, relentless bullying, and tried to convince the powerheads of the game that I had caused the rift. Meanwhile, I move over to a player city, went silent on any commentary, and we made Mos Vanta home - our little corner of the sandbox. They sent spies, trolls, spread their lies, and made sure I had to keep looking over my shoulder. Ten months later, this is still true. As soon as something goes wrong in Mos Vanta or in a cross-guild or cross-faction story, or even in another town entirely, someone has to attempt to point to me. Thankfully, the community in Vanta points right back and keeps me mostly protected...

Between the beauty of the stories, was a lot of stress from the above. I ended up becoming a leader of Mos Vanta, something I never wanted. But its founder was so tired of being bullied by the Wrecking Crew that he needed a break from the game and community entirely. So, I became a co-leader. As Lazana converted to Mandalorian and her story developed, I jumped back into managing a large group of very diverse people... and any decision made was likely to upset at least a third of them. But the stories are amazing, go late into the night, and distract from the constant pain I'm in, so I stayed.

Maybe I shouldn't have, but I stayed.

The Ehlers-Danlos, Dysautonomia, and all of its "friends" were progressing too. So many partial dislocations. They now happen almost daily, sometimes multiple times a day. It became harder to keep up with being active and doing home physical therapy. I'm now facing a repair and donor tendon on the left knee at the end of December. Been through this on the right one, and it is a hard recovery... but it needs to be done. The knee is in constant pain and is getting weaker and starting to pop out. It leaves me unable to keep up physically in a lot of ways, and I'm losing strength elsewhere because of that.

In June, I was finally approved for home health care after proving the clinic I had been sent to - after my beloved nurses were assigned elsewhere and the original shut down because of the pandemic - couldn't accommodate my physical disabilities. It is so very nice to be at home for the now three times a week saline infusions. I can slow drip overnight and get the maximum benefit. I now have a home physical therapist too, but she doesn't do much. She just gives me directions of things to do when she's not there. Being accessed 5 days a week was a big lifestyle change. You cannot get the site wet, the dogs need to be kept away from it, and I'm even more a walking sepsis risk, but the benefits of keeping my blood volume up at a more normal level, my bp more stable, and staying more hydrated (as gastroparesis makes it so I cannot take in enough fluids) is well worth the changes. 

Won't even go into the stress of this election and how my circle reduced even more from that.

But the combination of all the above caused me to hit a wall I never have before. Normally, I can joke off or use sarcasm to push through what the genetic nightmare does. It was becoming harder and harder to do. In community or relationship things, I found myself escalating fast. I'd go from fine to tears or anxiety attack within seconds. I started yelling at Owen, something I never did before. I kept trying to rebound, trying to meditate and use mindfulness and all of the other tricks that used to work...

And they didn't.

And it got worse. A lot worse.

Last week, I sought help. My primary care doctor (really any doctor) has never seen me cry. I broke down while requesting whatever assistance she could get me. I had already researched a counseling center closer to me, as I did not want the long drives to UVA. She wrote out the referral to the center, and yesterday I was approved for it. After my surgery, I'll be starting weekly sessions at Horse and Soul at Higgins Farm. It combines counseling with equine therapy - which is perfect for me. She also recommended medication to try to help stabilize the wild emotional shifts. So far so good with that. 

It has been quite the mixed-up year for sure.

On What's in the Bucket...

 It's an uncomfortable question, being asked what is in one's Bucket List. For the mostly-healthy, I think it might be a bit less so, as they believe they have all this time to get through it. Maybe it makes the responses a little more flamboyant. With braving up this last year and being more open with others about having a combination of conditions which now have led to me being labeled as "terminal" and open to being moved to "palliative" care as no one sees improvement as being likely, I've been asked well over a dozen times if I have a Bucket List.

I do.

Kind of.

It's a work in progress, as I had some pretty crazy things on there, but I've slimmed those down. While there are some far-fetched things on the list (at least in my mind) a lot of it is doable with a bit of help.

So... here's Holly's Bucket List 

PLACES TO GO

    Return to Yellowstone

    Return to Colorado in the autumn and listen to the elk bugle one more time

    Finish the Lower 48 with visiting Oregon, Washington and California

    Finish the 50 states by visiting Hawaii and Alaska and stand on an active volcano

    Visit more of Europe after going back to Wales

    Visit Canada

THINGS TO DO

    Spend a couple weeks going back to storm/tornado chasing

    Record a CD of songs and readings for friends and family

    Become an Inspirational Speaker

    Go fishing and actually catch a fish

    Ride horses one more time (would have to be adaptive)

    Write and publish at least one more book

    Have someone seriously promote the Midnight to Morning trilogy

    Visit the ocean. Often. 

    Go on a Compassion International tour to meet one of my sponsored children 

    Live simply out of a camper so I can travel more

    Overnight in the cabins at Wild Heart Ranch in Oklahoma and help feed the babies and visit the other animals there

PEOPLE TO MEET OR SEE

    As many of my online friends as possible 

    Keep visiting family as much as possible, no matter where they live

    Either Amy Grant or Michael W. Smith (or both)

    Meet and spend time with Selah

    Nicole Nordeman 

    Attend a Secret Garden performance

    Attend more Selah concerts

    Attend as many concerts as possible. Period. Especially smaller acoustic ones of my long list of favored artists

 So there it is... What I'd love to do before these conditions do too much damage or "takes my life prematurely" as most of my specialists tend to say when discussing the long-term. I hope many of them can be completed while I keep praying for better treatment and a chance to cure some of it.