OH, WHAT A NIGHT

Late December back in ’63…..What a very special time for me….I remember what a night.

OK, song lyrics over. Go listen to it if you want to support that ear worm that I just gave you.

For now, let me tell you about my latest travel experience.

Vanessa and I travel when we can. I travel by plane more than she does, as many of my trips are work related, and so I travel often with a PCA (personal care attendant). For my recent trip, Vanessa was able to accompany me, as this work trip is important every March: flying from Boston to Washington D.C. to speak with my elected members of Congress about rare disease funding. Specifically, funding for research of muscular dystrophy.

I have been doing this for 25 years, missing only a few times due to Covid, and being almost dead, but I keep showing up. I am proud to take part in something bigger than myself. I am honored to join with more than 100 patient advocates living with muscular dystrophy and visit the offices of our Senators and members of The House of Representatives, and speak with them about how I would like a bit of my tax money spent.

It matters. It helps keep disabled adults on their radar. I keep showing up. I’m a pest. I won’t go away and when/if these members of Congress do not get reelected, I start over again with whoever has won the seat. I don’t care if the person has a D or an R next to their name, and I don’t care if they know if I voted for them or not. I keep showing up, tell my story, share some details about the life Vanessa and I have built and tell them that the cash needs to keep flowing if we ever want to treat or cure anything. I may be dead before I’m cured or treated and that’s ok too. This work is bigger than me, and it extends beyond me. I’ll keep showing up.

Rah, Rah, Rah, everyone I meet with is supportive, everyone tells me things that are nice, and I feel lovely. More than that, I see lifelong friends and colleagues as we meet and bond over life. I love it. I’m Mr. Social. The other adults that live with muscular dystrophy have started referring to me as The Godfather. Look at me Gerry, I have the stripes. Just don’t go against the family.

Anyway, if you want to learn a bit more about this mission, you can see what we are up to HERE.

The trip was great. I think, therefore I am. E Pluribus Unum. But let me tell you what a bitch it was to get there THIS time. WOOF.

Pivot to last Friday March 6….

jetBlue flight out of Boston at 7pm. Direct to D.C. Roger that. All systems go. Vanessa and I arrive at the airport at 5pm. We like to be early because of power wheelchair and gate checking and tagging said chair and having all kinds of airline employees ask me the same questions. It’s good. Thorough.

We grab a quick bite and begin talking with a woman at the food spot who happens to be on the same flight. She tells us that it has been delayed to 8:40PM. Although I signed up, I am not receiving text flight updates from jetBlue. Good catch. We have more time. We decide to order dinner and relax.

We report to the gate area around 7:30 to learn that we are delayed until 9:40. We go to customer service and ask the probability of the flight actually happening. We are told that our plane is IN THE AIR. It’s COMING FROM SARASOTA and WILL BE HERE AT 8:55 FOR AN ON TIME DELAYED DEPARTURE.

Cool. I didn’t know that an on time delayed departure was a thing. Vanessa goes to Shake Shack to get us a milkshake (Oreo cookie…duh…) and I go back to the gate. There I am pleased to find jetBlue staff hanging out along with about 8 TSA employees.

Me: “Hey guys, what’s going on? VIP flight? Is this for me? Do you recognize me?”

TSA: “No sir. Random extra screening on certain flights into D.C. This is a random extra screening for security purposes. It’s random.”

Me: (dying to ask him if it’s random) “Ok, I understand. Mind if I speak with the jetBlue people about my power wheelchair and how it gets loaded onto the plane.”

TSA: “Sure. Proceed.”

Me: “Randomly?” Just kidding….I didn’t say that….

jetBlue Woman: “Are you flying to D.C.? Are you Mr. Patrick?”

Me: “Yes. I know we are delayed, but I want to tag the chair and speak with the ramp crew about how to move this thing. It’s my legs.”

jet: “I understand. We need to fill out a form and I will put you in the system. What is the weight of the chair?”

Me: “460lbs. It also has 2 dry cell batteries underneath and it doesn’t fold.”

jet: “Does it have lithium batteries?”

Me: “No. Dry cell. Two of them.”

jet: “OK, does the chair collapse or fold down?”

Me: “No, that’s what I want to speak with the ramp crew about. I fly often and other airlines always ask for the length, width and height. I have that information for you as well.” In my mind….where is my shake? haha

jet: “Not necessary sir, we only need the weight.”

Me: “OK, I have run into trouble with other planes with the cargo door not being high enough for the chair to fit in. It is important that the chair not be tipped on its side as underneath there is a lot of wiring and motors because this chair also stands up.”

jet: “No sir, we should be fine. Can you walk a few steps, or will you need to be carried on the plane?”

Me: “I cannot walk. I will need the aisle chair and full assistance. My wife will remove the wheelchair joystick, headrest, cushion and show the ramp crew how to disengage the motors so the chair can be rolled like a stroller. Please do not try to lift it, you will need to use the cargo elevator.”

jet: “OK, your wife will fold the chair?”

Me: “No, the chair does not fold. She will remove the joystick from the arm here so it doesn’t get damaged under the plane. The chair does not collapse.”

jet: “I understand. We can talk with the ramp crew when we board you. You will board first. We will be ready for you at 9:20. Please remain in the gate area sir.”

Me: “No problem. I’m going to enjoy a milkshake with my wife.” I grin, she looks at the computer.

We wait.

We wait some more. I pee because it is quite a trick to do this from my plane seat although I have. That’s a whole other blog.

At 9:15, a different airline employee comes over to tell us that no one has answered the call to help put me on the plane due to staffing shortages. Would it be ok if they start to board people, then stop them for me when help comes? I tell her to do whatever is easiest for her. The TSA begins patting everyone down and checking I.D.’s. It doesn’t feel random, but they form 4 lines and the process goes rather quickly. I ask the TSA if they are allowed to assist me onto the plane. They say no. We wait some more.

Two people come to the gate around 9:35. One man is less than 5 feet and doesn’t look like he can lift his water bottle, but he says that “He’s going to assist me.” The other helper is a woman who looks to be in her late 60’s and doesn’t speak English. It’s ok. I’ve done this before. We manage to get me on the plane. I’ll leave it at that. It is fun when I get on last because everyone on the plane stares at me as I get pulled backwards down the main aisle strapped to a narrow straight back chair. I stare right back and most people look down. This amuses me. I want the public to see how ridiculous it is for disabled people to fly. The system is a disaster and the more people who know, the more people will (hopefully and rightfully) question why this issue hasn’t been addressed as it has been on buses, trains and even Ubers. Yes, it’s not that tough to get a wheelchair Uber these days…..at least during the day….but more on that in a second.

Plane full. Flight attendants prepare doors. This is the captain speaking. We are sorry for the weather delay this evening but we will be underway shortly. Just loading up the rest of the bags.

We wait. We wait longer. At 10:05, Vanessa nudges me and says: “I’ll bet you a cheeseburger that this is your fault because your chair won’t fit on the plane.”

At 10:10 the captain comes on and tells us that they are having some issues with one of the larger pieces of cargo. Oh shit.

A minute later, a jetBlue supervisor comes on and squats down next to Vanessa and I. She says that the chair it too tall to fit through the cargo hold door and asks me if it folds. As you can see, if you’ve been reading along, I might as well have a shirt that reads ‘CHAIR DON’T FOLD.’ I doubt it would matter.

She then asks if she can have the joystick, screwdriver and screws so she can have the ramp crew put it back on, power it up and put the chair into ’tilt’ which should allow it to recline enough to clear the cargo door. Vanessa and I say no, but Vanessa is glad to come down and do it for them. We are told that the chair is on the tarmac next to the plane and no one is allowed down there because we are CIVILIANS and there are LAWS and TERRORISM and things like that. Interestingly, all the TSA folks vanished a bit ago.

The compromise is that the ramp crew will roll the chair back to the elevator, which is down the hall a few gates, so Vanessa can meet them there, reattach the joystick and put the chair in tilt. Remember how I made a fuss at the gate about the chair height??? What do I know right???

This takes 45 minutes and everyone on the plane looks unimpressed. The captain makes several announcements while one flight attendant gets on the microphone and asks which women have gotten a chemical peel on their faces vs. who uses what type of laser skin treatment. She begins to move about the cabin talking loudly about this. I am convinced that the flight attendant is 12. Vanessa finally returns to her seat and tells me that all should be well. She’s composed. I’m pissed and fuming and feeling bad that everyone is now late due to the size of my power chair. I know it’s not my fault, but it sure feels like it is. It doesn’t help that the jetBlue woman comes to my seat again to tell me that we are all set but if it had been any longer, the pilot and flight crew would have had to clock out due to how long we have been sitting on the plane at the gate. Somehow I feel bad about that too.

We taxi, and taxi some more. We are #4 for take off. It is now 11:45PM. The BS with the cargo door took almost 2 hours. The following day, I receive an email from jetBlue apologizing to every ticket holder and a code for a $75 voucher to be used on a future ticket but CANNOT be used to COVER BAG FEES, which cost $45 for the first bag, but all good as long as you book travel within 90 days. HEY JETBLUE…THIS FLIGHT IS TAKING 90 DAYS. AAAAAHHHHHH.

We fly. We land at DC Reagan Airport at 1:05 AM. We go to baggage claim. The airport is a ghost town. We try for an accessible Uber. Negative. The Metro, D.C.’s subway system, stops operating at midnight. We call 4 different cab companies. No wheelchair taxis are running. We call the hotel to inquire about shuttle service. They have a shuttle bus, but it has no wheelchair lift and doesn’t run after 10PM. We are stuck. It is now 2:15AM and my wife tells me to calm down, suck it up and get ready to spend the night in Terminal 2. We briefly discuss calling a friend who is local and owns an accessible van, but neither one of us wants to wake her up at this hour. Ramona, if you’re reading this, you’re welcome haha.

I realize that the sky is not falling but I am grumpy to accept that if I wasn’t disabled, we would already be asleep at the hotel by now. My mind jumps to my time in the ICU in January of 2024. If someone asked me if I would rather be stuck in an airport than on a ventilator, I would have taken the airport…So be it.

I reclined in my power chair, Vanessa laid back on the comfortable airport chairs near the gates. I doze. She dozes. The announcements start at 3:30 as a booming female voice shouts from above: ‘WELCOME TO REAGAN NATIONAL AIRPORT. WE VALUE YOUR SAFETY…..blah blah blah.” I am awake now….LOUD.

At 3:50, more than a dozen TSA employees come through some automatic door and start whipping on switches, computers, lights, and belts. It’s crazy. At 4:00 AM, airline employees appear, and people begin to check in. It looks like it’s noon. I ache from being in my chair all night but I also think ‘hey…this is a blog.’

And so it is.

We finally got an accessible Uber at 6:00AM and made it to the hotel by 6:30. Vanessa orders breakfast. I tell her that I want to lay down but I will have some breakfast when it comes.

The next thing I know, Vanessa is telling me that it’s 10:30 and if I want a shower, I need to get moving as my meetings to plan for Hill visits start at noon.

I operate like a low wattage solar panel for the rest of the day, but I show up. I show up. I show up.

That night I am asleep at 9. The rest of the trip goes smoothly. We fly home on. Tuesday the 10th and we have no problems, except that my right fender gets cracked and chipped while my chair is under the plane. I file a damage claim upon landing in Boston. I jokingly ask them if I can use my $75 flight voucher. They ask me if my power wheelchair can fold or be collapsed.

I love to travel. In all seriousness, the mission of speaking with Congress far outweighs the bullshit that I go through to make it happen. I will show up next year. Maybe I’ll take the Acela.

Stay safe, stay awesome, and stay tuned.