The Nightmare

When I signed up for the Stiff Persons Syndrome CAR Tcell trial, I knew the process wouldn't be all fun and games. My doctors had warned me that the transformation taking place in my body would be rough and I'd have days I'd probably doubt the wisdom of participating. They'd been right. But I kept my eye on what the future promised and used the public glimpses of Celine Dion's success as a compass to keep me moving forward.

Once they released me from the hospital and I could see baby steps of progress every day, I figured I'd survived the hardest part of the trial. Little did I know of the hardships that still awaited me and Monica. In my last blog, I recounted how Delta Air Lines canceled our return flight from LaGuardia to Bangor. They gave no explanation, just an email message as we approached LaGuardia that they were sorry for any inconvenience it might cause us. Since we couldn't get a seat on a flight back to Bangor for at least two days, Monica agreed we should rent a car and she would drive the ten hours to get us home.

Meanwhile, Delta couldn't retrieve my checked bag from the plane. After waiting three hours at the baggage carousel, I abandoned my bag so we could get our long road trip started. The unexpected challenge exhausted me (and Monica) but we'd made it to our appointment with Dr Piquet in Denver, and thanks to Monica, I got home safely, but frazzled.

My next check-up in Denver came just two weeks later. Early in the morning of July 13th, Monica drove from her cottage in Wells to my home in Belfast. As we brought my bags down to her car, I said, "You know, Monica. I'm still so fatigued from our previous trip. What my body needs is three days in bed just reading and sleeping."

She argued, "That would be the worst thing you could do. You've got to keep moving to keep your muscles flexible." I waggled my head, not convinced.

For this trip we agreed I would NOT check a bag. Instead, I brought two personal-sized lightweight fabric carry-on bags onto the plane. Most travelers brought metal-sided suitcases and enormous personal bags onto planes as carry-ons. That doesn't count the number of uncaged dogs that fly in the passenger cabin.

Our flight left on time, and we had exceptionally clear weather to LGA. We had a layover of about four hours, so we explored all three wings of Terminal C. Being "foodies" we checked out the dozens of eateries. Monica wanted to save her appetite for the meal we'd be getting on the flight to Denver. Since I'd only grabbed a snack before leaving my house, and I didn't find Delta's food particularly appetizing, I ordered a "Chopt" salad in the terminal, a healthy snack to hold me the five hours before they'd serve food on the plane.

Checking in at Gate (Wix Media)

Back at the departure gate, I checked in with the attendant to guarantee the airline would accommodate my Zinger in the plane's main cabin closet. He assured me they would board me with my Zinger and Monica first. Five minutes before the scheduled boarding time, the attendant announced that our flight would be delayed. A life raft had fallen out of the plane and would need to be fixed and reattached before we could leave.

What??? I'd never heard that excuse before. The only thing we'd be flying over from NY to Colorado was land, mostly flat land. Why would we need a life raft to get to Denver? An uneasy feeling of dread welled up in me. I calculated the estimated 90-minute delay would get us to Denver at 10 pm. That still seemed reasonable. I'd still have time for a good rest before my 11:00 am appointment with Dr Piquet the next morning.

Once they'd secured the life raft in its proper position, the gate attendant motioned to me. We headed down the plane's ramp. At the door, the flight attendants got my folded Zinger stowed in the closet, then Monica and I took our seats. Passengers filed down the aisle, occupying every seat on the plane. Thirty minutes later, the captain announced our departure. We taxied for a few minutes out onto the maze-like system of LGA's runways, then stopped, then taxied and stopped repeatedly. I said to Monica, "I think we're going around in circles."

Queued on the Runways (Wix media)

After forty minutes, the captain announced, "Unfortunately, bad weather is brewing over Pennsylvania. There's still a narrow window in that severe weather system we can squeeze through, but all westbound flights are waiting in a takeoff queue. I'm afraid it will be a while longer before it's our turn."

My mood sank as I ran the numbers in my head. Would we even make it to Denver by midnight? Monica texted her husband in Denver, who was waiting to pick us up, to let him know the bad news. The sun dropped below the horizon while we loitered on the runway. When the pilot addressed us again, he said, "We've gotten close to the front of the line, and it shouldn't be much longer now." I heard a collective sigh of relief from my fellow passengers.

Five minutes later, the captain spoke. "I'm really sorry to have to tell you this, but this crew's shift has just timed out. FAA regulations prohibit us from flying after we time out, so I have no choice but to return you to the terminal. Delta may try to re-crew this plane so you'll be able to continue to Denver, but I have to tell you the weather in Pennsylvania is rapidly worsening. Sorry, folks."

Bad weather over Pennsylvania (Wix Media)

I sighed, slumping in my seat, realizing that my chances of making my medical appointment grew slimmer with every delay. If I didn't show up for my appointment, I wondered if I'd be terminated from the trial? If I could get there later the next day, could Dr Piquet see me? I had to stop imagining the worst-case scenarios for my sanity.

Back at the gate, we deplaned. This time I had my Zinger and my two bags with me. In the terminal, Delta staff instructed those who'd already missed connections out of Denver to go to one of Delta's "How Can We Help" desks to reschedule their flights. Monica and I waited in the crowd by the gate, hopeful that a new crew would arrive quickly. Ten minutes later, Delta officially canceled our flight.

Not What We Wanted to Hear (Wix media)

Monica ran to secure a place in the long line queued in front of a nearby Delta Help desk, while I found a less noisy space to call our travel agent. At 9:30pm on a Sunday night, the office of the American-based agents was closed, so their phone system routed my call to an agent in England. I told him, "I'm desperate to get to Denver before 11am for a crucial medical appointment. We have two first-class tickets, so please see what options we have."

After a few minutes of typing on his keyboard, he said, "Well, there are no more flights leaving LGA for Denver tonight. The only flight that could get you there before 11am leaves at 7am, but it's totally sold out. I could put you on the waitlist for that flight if you'd like."

"What other real options do I have?"

"There's one economy seat on a flight that gets into Denver at 2pm tomorrow afternoon."

"That won't work because there are two of us, and I don't know if my doctor will even be available later in the day."

"I hate to say it, but I don't see any way to get you to Denver in time for your appointment, tomorrow or even on Tuesday. I can't see anything available until Wednesday.

"Well, can you help us book a hotel for tonight?"

At that point, he suggested checking with the Delta Help staff. Only they could provide us with vouchers for a hotel, meals and transportation. He told me to call back and let him know how I made out with Delta. I found Monica standing with dozens of angry passengers in front of a help desk manned by two Delta workers. Another Delta employee stood at the end of the line handing out numbers. Monica had gotten number 28, but she said the line had barely moved.

When the Delta employee handing out numbers saw me join Monica in my Zinger, she came over. "I can bump you to the front of the line behind the two passengers currently being assisted at the desk." Even then, we waited 15 minutes for one passenger to leave the counter with vouchers in hand.

We explained our predicament to the exhausted woman behind the help counter, who gave us a blank stare, as if hearing the same complaints a hundred times had robbed her of empathy for the frantic passengers who needed her help. She confirmed what the British agent had told me. I asked about being wait listed. Her response was, "Honey, that flight is already way overbooked; a wait list won't do you any good." She told us that the earliest we could be on a flight to Denver or back to Bangor would be Wednesday. Neither of us could bear the thought of hanging out in New York for that long. I also wanted to get Dr Piquet's opinion about we should do. What a mess!

The help desk lady showed us a list of hotels Delta offered for an overnight stay. Since neither Monica nor I had ever heard of these hotels nor had any idea where they were located, we asked the woman helping us for her suggestion. She recommended the one about 20 minutes away from the airport, claiming it had an association with Best Western hotels. She handed me a voucher for the hotel and sent a text to my phone I could use to get an Uber to and from the hotel. For Monica, the woman couldn't get a hotel voucher to print, but she did print two meal vouchers. She assured us the hotel had plenty of rooms (maybe not such a good sign?) She instructed Monica, "Just tell them at the hotel that I couldn't get your hotel voucher to print. They can charge your room to the same Delta account number on Brenda's voucher. "

As we'd been waiting at the counter, we hadn't noticed that all the airport restaurants were closing. Honestly, who would have guessed that every single restaurant, bar, food shop, and food kiosk in one of the busiest US airports would be closed and locked by 10:30pm? We finished our business at the help counter at 10:45pm. Monica hadn't eaten anything all day and was starving. I was hungry and thirsty too! We hoped the hotel would have some food available.

We went outside to the Uber pickup point. I'd never used Uber because we don't have it where I live in Maine. I opened the Uber app provided by Delta. Everytime I pushed the button "Ride from the airport to the hotel", I'd be assigned a driver, but after a few minutes that driver would drop off. I'd get a message that Delta was searching for another driver. This happened five times. Meanwhile, dozens of other people using their own Uber apps summoned Uber drivers who arrived to pick them up minutes later. I asked a young girl to show me how to get a driver assigned. Her own app looked very different with a map showing the exact location of the incoming Uber car. Her driver arrived and whisked her away before I could get the hang of how to use Uber.

I got so frustrated that I waved at the lady directing traffic to come help. She took my phone and followed the same instructions I had with the same result. While she had the phone in her hand, it assigned a driver named Muhammad who appeared to be staying on the screen. His ETA was 15 minutes. So many more Ubers came and went from the pickup point while we waited. My faith that Muhammad would show diminished with each passing minute. When his license plate appeared exactly at 15 minutes, I couldn't believe my eyes. I heaved a sigh of relief and climbed into the car.

Uber Driver (Wix Media)

The Delta Uber app had already sent the driver the address of our hotel, so for twenty minutes I wondered exactly where he was taking us as we wound through the streets of New York City. At about 11:30pm we pulled up in front of a rundown-looking hotel. Inside, a husband and wife stood behind a small reception counter. She processed my voucher and assigned me to a room with a queen bed and wheelchair accessible bathroom.

When Monica explained what the Delta Help desk woman told us about charging her room to the same account number on my voucher, the woman said that wouldn't be possible because she needed a unique number shown on Monica's voucher. She agreed to call Delta's customer service to see if she could get the number over the phone. Delta's customer service answered and put the receptionist on hold. We waited for twenty minutes until the receptionist said she couldn't wait any longer.

She offered to put a rollaway cot in my room for Monica. At 11:50 we went up to our room. This had to be a one-star hotel. The queen bed took up most of the room. They had shoved a child-sized cot (thank goodness Monica is a tiny woman) in between the foot of the bed and a desk snug against the wall. When I saw it, I offered to share my bed, but Monica declined. I'd never heard such a noisy old air conditioner. But what grossed me out the most was the rug. There were so many particles I felt beneath my feet, I assumed they had not vacuumed the rug in weeks. Exhausted, angry and disgusted, I had no energy left to fight.

Getting food became our top priority. But at midnight, where could we find food? The hotel restaurant had closed hours ago. The receptionist told us that at the end of the block, we'd find a small corner grocery store that would still be open where we could get sandwiches. How safe was it for the two of us to be walking the streets of an unknown part of New York City at midnight? Monica wanted to leave for the store immediately, but I insisted on coming with her, because at least if anyone hassled us, I could run them down with my Zinger. My anxiety level skyrocketed. Down the sidewalk we went. A rough-looking character sat on the steps leading into the store, and a couple more men loitered inside the store.

Corner Store Deli (Wix Media)

A mini deli counter with an ample menu of fresh sandwiches occupied the middle of the store. Monica immediately found what she wanted. The man behind the counter started making her sandwich. I told him what to make for me when he finished with Monica's order. Meanwhile, I searched for bottles of water. A second man behind the cash register rang up our sale. Monica looked at the receipt and told him he hadn't charged us enough. He shrugged his shoulders, clearly not understanding what she meant. After a couple more unsuccessful attempts to get him to understand, Monica gave up. We hurried back to our hotel room and settled on our beds to enjoy our feast. Monica opened the bag and moaned, "Oh no! There's only one sandwich in here!"

Furious, she charged out of our room. I decided not to follow this time because I knew that anyone who got in her way didn't stand a chance. Besides, no one had threatened us on our first walk down the block. She returned in no time. Unwrapping her sandwich, she devoured her whole, generously stuffed 12 inch long hero in the time it took me to eat only half of my sandwich. I knew crowding my stomach just before bed might keep me up all night.

I simply wanted to sleep. But before sleeping I drafted an email to Dr Piquet, letting her know I wouldn't be at my appointment and asking what I should do. And I called the travel agent in England back to see if he'd found any ways to get us to Denver. He advised us to go back to the airport right away and be there in person, in the event any seats became available. That was NOT going to happen. We needed sleep. He said he'd monitor the flights overnight. If he saw a chance that we might get seats, he could call us. We never heard from him.

Monica woke me up at 6:25 am. She'd been up for a while. "Brenda, get up and get dressed so we can go back to the airport." My fuzzy brain couldn't comprehend why she wanted to go back to the airport so early.

"Monica, why in the world do you think we should go back to the airport when you know we don't have a flight and still aren't even sure what we are going to do? I need more sleep."

"I can't stay in this room for one more second. I'd much rather we waited at the airport."

I told her I needed more time to wake myself from sleep. Gradually, I gathered enough energy to hoist myself into a sitting position, but exhaustion still consumed my mind and body. I struggled to pull on my clothes. In Denver, people would still be asleep, so I didn't expect to hear from Dr Piquet for a few hours.

"Monica, let's go down and eat breakfast before we head back to the airport."

"Are you kidding? I'm still stuffed from the sandwich I ate at midnight."

I didn't doubt that for a moment. "We don't know what to do, or what to tell the travel agent until we hear from Dr Piquet. Since we don't know when we'll be able to eat again, I'd like to get breakfast and then we'll go back to the airport. Maybe by then we'll hear from Sadie or Dr Piquet."

After breakfast, we checked out of the hotel. Outside on the terrace, I opened the Delta Uber app on my phone. This time I pressed the button for "Ride from hotel to airport". Immediately a response appeared. "No Uber drivers available. Try again later." I kept pushing the button for 20 minutes. The same message appeared. Stranded again! I couldn't believe that in all of New York City there wasn't a single Uber driver available. Monica lost patience and pulled up the Uber app that her husband had put on her phone. She'd never used it herself, but she managed to engage a driver who'd arrive in two minutes.

To get to the corner pickup spot, I had to navigate my Zinger down the long ramp to the sidewalk, then turn and head back up the concrete block sidewalk. Focusing on Monica, who waved at me to hurry, I never noticed the sidewalk block that had heaved up one of its edges by an inch above the adjacent block. Hitting the curb with my front wheels stopped my Zinger abruptly, hurling me forward toward the sidewalk. Only the weight of the two bags hanging off the back of my Zinger saved me from doing a face plant on the concrete. Instead, my body whiplashed backward, painfully twisting two vertebrae in my back. Just what I needed.

Monica, focused on the street to catch sight of the Uber, didn't see my mishap, but she heard the impact. After I'd caught my breath, I rolled my Zinger back enough to veer around the obstruction and continue on a smoother surface to the corner. The Uber driver arrived promptly. I struggled with the high step up into the back seat, finally launching myself sideways across the seat. My injured vertebrae screamed. Why did everything have to be so difficult? I wanted to be back home in my bed imagining this as a nightmare, not reality!

Back at the airport without valid boarding passes, we found ourselves restricted to the entrance lobby. Knowing I felt miserable, Monica told me she would write an email to Dr Piquet saying that I was in no condition to travel any further and that we felt we should head home. I agreed. Fortunately, she never had to write the email because Sadie, our medical assistant, called just then. After hearing what we'd been through, she said she'd consult with Dr Piquet to see if we could skip this appointment. Dr Piquet agreed I should just go home, but she stressed how important the next two appointments would be. I had to be at those.

I called the travel agent to let them know I'd gotten permission to go home. Once more, she confirmed that flights to Bangor for the next two days were 100% booked. Like Groundhog Day, that only left the solution of again renting a car and driving back to Maine. The three car rental companies at the airport again had no cars available, so we took a cab to the Dollar car rental company in Astoria to pick up a Nissan Rogue. We left New York City at 2 pm. This time we got to Katz's Deli two hours earlier than two weeks before, so they welcomed us in for a lovely meal. With bellies full, we headed north. Just after dark in Massachusetts, we ran into rain. That night, flash floods submerged NYC, canceling flights, flooding subway tracks and closing off parkways. We'd gotten out of Dodge just in time. As before, we stopped for the night in Wells, Maine. The next morning we completed the drive back to Bangor and Belfast.

Yay! (Unsplash Media)

As we unloaded the car, Monica turned to me with a grin and said, "Brenda, I give you permission to climb into bed and just sleep and read for three days!

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