On Pausing... Selah

 This is a hard post to write, because anyone who knows me well, or has been in my house any length of time, knows the trio "Selah" is often heard playing. I have been a fan of theirs for nearly 20 years now, back when it was Todd Smith, his sister Nicole, and Alan Hall and now with Amy Perry. Their music was so uplifting, voices so powerful, and the message so strong. It helped get me through a lot of tough spots. I'd even performed some of their songs at a few conferences. 

I rarely got to see them in concert when I lived in Virginia. They never were any less than a 2 hours drive from me, so I only got to see them two times. But, I supported them by buying every CD at pre-release, playing them often on Spotify, and sharing the music with others. One of my biggest excitements about moving to Central Tennessee was that I'd be within 90 minutes of several dozen popular concert locations and so many big churches my favorite artists would perform at.

In the midst of my cancer battle, as I was wrapping up the Red Devil and Cyotaxin combo and taking a two-week break before starting Taxol, Selah was going to be having a Christmas concert just an hour away. It would be my FIRST concert in Tennessee. I was thrilled! 

I knew, with my disabilities and cancer battle, pre-planning had to happen to make the night a success, and I jumped right into it. Churches tend to have these mini rows in the back for the disabled. As if tucking us back there is safer, and keeping us out of sight is easier on all. But it's so hard to see from there unless the sanctuary is built on an angle, and so many of us have vision issues or it's hard to hear and focus with the entire crowd in front of us. I was trying to avoid that.

Immediately, things went south. Within 48 hours of sales opening, all of the premium tickets were gone. Those were the first few rows of the church. I later learned they weren't even offered to the general public. The church bought them out immediately.  So, I bought the regular ones for myself and those coming with me and made note of when the church said doors were opening for general seating. We planned to arrive 30 min before that, though hoped it would not be needed. My next step was to message Selah's contact on their website, the hosting church, and the sponsoring radio station. I told them of my disabilities and the issues many face in smaller venues like churches and asked what could be done so I wasn't stuck in the back rows. I also shared my love of the trio, cancer battle, and the hope that maybe something could be arranged so I could meet them. 

Silence. From all three. As the day approached, I tried again and even messaged their Facebook page. Silence. From everyone. It was crushing. 

The day of, I was anxious. Would I even be able to find a seat where I could see them? The chemo was making a mess of my vision, and I was using my forearm crutches to get around. We arrived super early... only to find the church had opened the doors to their regulars even before the announced time. Then, in the windows, I could see people meeting and talking to Selah - all smiles and laughter. My emotions dropped as we entered the 2/3rds full sanctuary and tried to find enough seats so we could be together and I could at least be on the end to lean over and see maybe part of the stage. Where we sat had an overhead fan blowing cold air, so we had to keep our coats and gloves on. I started to cry.  

My mother, knowing I had taken all of these steps to make the concert experience safer and better for me and how much I love the trio, got up and went to start talking to whomever she could find. It took a few tries before one of the radio hosts told her she had to buy a CD and get in line after the concert in order to meet Selah. He told her that when a certain song came on, that was the end of the show and I should head out then to be one of the first. Being I already own all of their CD's she picked a duplicate and came back to tell me. I love her so much! It was at least something. I'd be able to briefly see them up close.

The concert itself was grand. While I could only see the piano and Alan and not much more between lights and people, the sound was great! I enjoyed the music, stories, and the video segments on the big screen. My hands were in the air for a few songs, and for a bit of time the trials subsided. 

We made our way out at the start of the final song. I was first in line and spoke to the radio host while waiting. He was pretty friendly, though distracted. Finally, Todd, Amy, and Alan took their seats, but were immediately rushed by line skippers and VIPs. So, leaning on my crutches, I waited. When it was time, I got to say a few things to Alan before Todd reached for my hand and asked about the cancer and spoke very kindly to me. I tried to introduce Amy to my niece, who is adopted from foster care - knowing she is a foster mom, but she didn't seem to note it. Alan was super sweet to her, though! As we gathered to take a picture, I brought up how long I'd been listening to their music and how my last concert was when Amy had been with the trio for just three weeks. I had my years off, though, and the only words Amy said to me was to snap the correct years. It was too much. The group pictures have me tearing up in them. And by the time we got to the car, I was crying once more.

 Almost a year later, this experience has lingered with me. I've not attempted to see anyone else in concert, though so many happen around here. And, when Selah announced a date in Nashville, I made a reply on their Facebook about how I'd like to see them, but the last experience had me still sad. Amy Perry popped on immediately with a defensive comment about how the concerts are usually fun. I replied that I'm sure they were, and I'd be open to discussing the lengths we went to to make sure it could be for me. Then, once more, I sent a message off to Rixon Enertainment Group. And there's silence.

What's worse? I was removed from their Facebook page. Christians are their own worst enemies... and a disabled person trying to make sure seeing her favorite Christian artist and being treated like that is just wrong. I'm gutted. It hurts to hear the songs that once uplifted me. It brings tears instead of joy. I've found myself removing many of their songs from my Spotify list, tucking their CDs away instead of playing them in my stereo. 

And I don't know if anyone will do anything about it. For 18 years of support, one sentence, and an invitation to speak on disability access and service to those who support you, after trying so hard to get that accessibility at a show... and gone. 

And so we Pause. As their name states Selah.

On Angels Of The Trip (Disney Part 2)

 My entire trip to Disney, from the planning phase to the moment I was reunited with my parents at the end was filled with "angels."  I was so nervous going into this adventure, so much had to be done and it was going to be a costly thing to have go sideways. But, from the very start, God paved the way and put people in the right place at the right time.

Beforehand: I had been saving up, slowly, for the trip. The multiple moves, cancer battle, and other things had put that on hold. But I had the special needs trust to lean on if I didn't save enough. But then the first angel arrived. A lifelong mentor and dear friend sent a check that covered the entire cost of the resort and park tickets! I'd just need to cover the car, airfare, scooter rental, and daily expenses. 

Then, as the announcement of the trip was made, a former co-worker and precious friend Margret, and her husband Greg, contacted me. They are avid Disney World fans and visit frequently. They said they'd come with me for the first part of the trip. I wasn't going to have to tackle Disney alone! 

Onward to Flordia: I had gotten a great discount with USAA for my plane ticket, and it was a straight-through flight to Orlando - so needed. The problem is the flight initially labeled as United was actually Silver Airways. The reviews for the airline were appalling, so I braced myself. Sure enough, it took 4 days and nine hours to reach a human about needing a skycap to get me from curb to terminal, only to find out the day of that they never put in the notes. Thankfully, Huntsville Airport scrambled and found a super sweet employee who took me all the way through. I made sure at the terminal to have the person checking us in note I needed wheelchair assistance at Orlando. He promised to enter it in right that moment. He didn't.

After 5 hours of delays and getting to Orlando at 1 a.m., the wheelchair wasn't there. The lady at the desk was annoyed, and those on the plane were super apologetic as I waited and waited for help. But an angel of a young man was sent to help me. He was so sweet and decided to break protocol. He's only supposed to take me to the luggage/curb and that's it. But it was so late, and I was so tired, and he saw it so took me all the way out to the garage and got me checked in with the car rental, and even loaded up the vehicle for me! 

The drive to the resort was painful. I had torn up the surgery site in my elbow a few weeks prior and was in the big metal brace post-injections for all of the trip. But, I made it to Pop Century at nearly 2 a.m. The woman at the front desk was saddened by my experience getting there and quickly called someone to help as she saw I was dead on my feet. I had to somehow get both my rented scooter, car, and luggage, over to where my room was. Enter the next angel, named Edwin. He drove the scooter around as I found a place to park closer to the room. Then we switched places with him hauling my luggage (mind you this is heavy because I had IV fluids and my CPAP in the big bag on top of everything you'd usually bring.) At 2:40 I was finally securely in the room and resting.

At Disney: Bright and early, I met with Margret and Greg. Margret with one of those awesome cooling towels in hand as a gift for me. We were soon off and running to Epcot to see my favorite character, Figment! But we were having some issues understanding the DAS system, and that's when the next angel arrived. An elderly man, working for Disney in his retirement years, patiently explained the difference between DAS and DAS Advanced that I'd set up and showed me how to access it all on the phone. Margret and Greg were the best angels the two days, using their photo pass so I had some amazing memory pictures, making sure I knew the best ways to get to the best spots for when I was soloing later, getting us onto Ride of the Resistance on a super busy day (OMG that ride!), the hilarity at Prime Time Diner and so much more. Along the way, there were people who opened doors, raced over to help if I dropped something, helped me reach items I couldn't because of the scooter or brace, noticed my "This is my fight hat" with the breast cancer symbol and shared their stories or words of encouragement and more. It wasn't just staff either but fellow visitors. I've never felt more accepted than those days in the park.

Interlude at The Villages: I loved the four days of seeing family at The Villages. But the angel shout-outs go to my Aunt Anna for her incredible packing skills! I had to ship a box home because there wasn't any way to fit the droid I bought, and other things, into my suitcase otherwise. She fit so much into that little box, I don't know how she did it! The other is to my cousin Stephanie for the wonderful hours we spent hanging out and catching up. It was so meaningful and needed. 

Heading Home to Tennessee: After how the flight out went, I was quite nervous about the one home. Orlando does not have a good reputation among disabled fliers, especially regarding their TSA. I hadn't heard from TSA Cares so left super early to make sure I could get through it and the airport with waits for help. But the moment I pulled my rental car up and started to strap on the arm brace, an employee of the airport was there to load my luggage onto the cart after reminding that he works for tips. We had a lovely chat about his home country of Venezuela as he helped me through checking in the car and getting to the counter for Silver. They actually had noted my need of a wheelchair this time, so the wait for one wasn't too long. The next skycap was kind and we lucked out that the TSA line was bizarrely short (though the TSA employee lived up to Orlando's reputation of not being kind.) The flight was on time, and soon I was in Huntsville. There, the same guy who did not enter my need for help before was waiting with a wheelchair. He was apologetic. We discussed the problem, and I asked about him. Found out he was a student at the local university and was studying computer science while also working long hours at the airline. He became the last angel of the trip as he made sure I not just got my luggage but he stayed with me until I was at my parent's side once more - much to my mom's relief. She panicked the whole trip! 

And so we have the angels of my trip to Disney. It was so much more than expected. Every single person came at just the perfect moment to make my travel adventure go so much better than expected. I am so very, very grateful. 

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