IN

Early this morning, my youngest son decided to bring his kickball to school. Here in New Hampshire, autumn is in all its glory. Our entire yard is yellow, orange, red and brown with the oak leaves remaining green (fun fact: they are last to turn). He put on his shoes and went out the front door to retrieve the ball from the yard just as a gust of wind picked up, creating a leaf storm across the driveway and through the yard.

He stopped walking to get the ball and looked up smiling. He threw a glance at the front door where I was waiting, and then he started chasing falling leaves around the driveway. He laughed as he tried to grab them out of the wind as they went swooping by. For a moment, he didn’t care about getting the ball, being a few minutes late for the trip to school or packing his snack and water bottle as we do each morning.

In those 30 or so seconds, I reflected on the fact that he was completely in the moment. I was reminded of catching snowflakes on my tongue when I was a kid. I too remember being completely in that moment. The world mattered little as I tried to melt snow with my head thrown upward and little bits of water and ice hitting my face, lips, and tongue. Catching leaves or catching snow….fully IN the moment.

As a grown human, I find it harder to be ‘in’. There are a million things pulling all of us in a million different ways at the same time. As I write this, I am concentrating on being ‘in’ but my mind also tells me that I have work stuff that needs doing, I need pay a few bills, and I need to plan for a trip that I’m taking tomorrow by plane.

I’ve written about flying a lot. Here is an add-on that is distracting me from being ‘IN’ at this moment: the city that I’m flying to (St. Louis) does not have wheelchair accessible Uber vehicles. Nor do they have a reliable accessible taxi service. When I used to travel with a manual wheelchair, I simply had someone fold it, throw it in the trunk of a regular vehicle and off I went. Not so easy with a 450lb power chair….

I called the airport to inquire how I should get to the hotel. They told me that there is a bus and a light rail service. I called the hotel and they were no help at all. I spoke with the people who planned this trip (it’s a disability conference) and they told me to book at taxi in advance….no problem. The taxi company told me that they cannot book in advance.

I searched online and found my way to an accessibility coordinator who works for the city. She was lovely and told me that my best bet is the train. Light rail. She joked that St. Louis only has a red line and a blue line….not like Boston, where our trains are about 100 years old and, in parts of the city you can walk or bike faster than the orange, red, or green line will take you. I’m not kidding.

Of course, that option gets me from the airport to the hotel. Like a normal person with several hours to kill the day before the conference, what if I want to sight see? I hear there’s a famous arch, and I’m sure there are foodie areas and possibly a museum or a pub that might be cool to check out. (Not necessarily in that order).

Enter my traveling companion/PCA (Personal Care Assistant). Let’s call him Jim. (Not his real name). Jim and I spoke on the phone yesterday to make a plan and when I told him about my ground transportation anxiety (I’ve been telling my work colleagues too….I know they are tired of hearing it), Jim said: “Dude, let’s just rent an accessible minivan like the one that you drive. Ramp on the side, easy entry, I will drive and we can go wherever we want. Want to go to Mexico and steal the van? We can do that as well.”

Jim is my people. He’s kidding about Mexico. (He’s not really though.) He is also the second person to suggest renting a van (Shout out Alexis (not her real name)). I was trying to not drop $600 which is what a normal wheelchair van rental is for a weekend. I am looking into getting that reimbursed, but stay tuned…

A quick spin through the Google machine tells me that there is a wheelchair accessible vehicle company near the St. Louis airport. Hopefully they will deliver it to terminal 2 where I land. I begin the registration process but I am stymied when I remember that I will not be the one driving the van, and so I cannot make the reservation. Undaunted, I email Jim the phone number, our flight information, my wheelchair weight and the fact that we will require 4 Q-Straint locks to secure my chair to the van floor. Some companies have them in the vehicles, while some charge extra. A set of Q-Straints runs about $300 and I’m sure some have gone missing because people are assholes. But I digress.

About an hour ago Jim called me to tell me that the company has no vans available this weekend. I told him to standby. I called a second company. They have no vans available either but they have one van currently in the service bay. The nice lady (Tiffani. That’s her real name on the phone she said) is going to call me to see if it’s possible for the team to get it ready by tomorrow afternoon when I land. I’m waiting to hear back.

I have a 3rd company that is farther away, but since Tiffani is being so nice, I am holding off on calling that one in case good ‘ol Tiff comes through. If that fails, and company 3 fails, I am back to the train. With my chair, Jim and one bag of medical stuff I need as well as one or two carryon bags depending on how much shit we can stuff in one bag.

Did I mention that I was invited to speak at this conference and my part is a 30-minute talk about relationships and love with a disabled body?

Did I also mention that I’m simply trying to get around a major city in our country in the autumn of 2026?

Shame on me for not renting a van several weeks ago. Shame on me for not assuming that a city like St. Louis doesn’t have WAV Uber service. (Wheelchair Accessible Vehicle). Philly, Boston, NY, DC, Chicago, Orlando, San Fran, and LA do….at least those are the places where I’ve been successful).

I fly out of Boston at 11AM tomorrow. I will drive my van the 30 miles from my house to the airport. I am leaving at 7:30. There will be insane traffic. Do the math. I’m leaving early….I think.

Once I go through the dog and pony show where they test several parts of my chair for chemical residue from potential bomb making chemicals (they swab my hands and shoes also). I will pass security and do the whole ramp crew training on how to pack my chair without tipping or lifting it. While Jim is watching the crew, my disabled ass gets carried on to the plane in the straight back loading chair that is built for Dobby the house elf from Harry Potter. I would have said Yoda, but he could just use The Force and float his green ass to his seat, so we will go with the visual of an elf. The chair is tight and small and I’ll be strapped to it. The people who move me usually are not trained in lifting disabled people so I will teach them. Most often these people are sweet and well meaning, and also non English speaking so there’s that barrier too, but we will make it work because SouthWest is the love airline, right? I’m in row 10. This is good. When I’m in row 38 (I always ask to be moved towards the front but not all airlines will let me), then the straight back chair ride is painful. As they pull me backwards down the center aisle, any rogue seatbelts that are hanging over the airline seats never fail to (A) get caught on me as I am passing by, or (B) hit me in the knees with the silver buckle part. It’s awesome. There is also (C)…the aisle chair is exactly 2 inches more narrow than the center aisle so if the handlers don’t travel in an exact straight line, I bounce off the airplane seats. Everyone should be forced to be loaded onto a plane via the straight back chair at least once in their lives. If we all had to fly like this, that shit would change right quick.

So I will land in St. Louis tomorrow at 2:10ish PM. I will wait at least 30 minutes at the gate AFTER they pull me off the plane (same chair but now I go forward so I can see the metal seatbelts before they hit me, but I am strapped to the chair FOR SAFETY so there is nothing I can do but laugh as the flight attendant thanks me for flying Southwest.) My power chair should be up any moment. (complete lie).

Jim will put the electronic joystick back on (I remove it so it doesn’t break or some airport clown thinks he should sit in my chair and drive it onto the loading belt….believe you me, stranger things have happened.) Once all of this is done and I am settled, I will definitely need to pee (can’t use the bathroom on the plane….think about that….yep).

Finally it’s off to baggage claim. Usually I am so late, the bags have been pulled and are at the luggage office with other sad unclaimed items. Sometimes we just take them, and sometimes the airline asks for I.D. and a stool sample to prove that I am not about to take a bag that isn’t mine. I’m kidding about the stool sample. Most often, it’s a RETINAL scan, not a rectal one…..Hey, I just wrote that joke. I’m using that on TSA tomorrow. Those people love me. Would I like a private pat down? No, I AM PAT DOWN. hahahaha. I also purchased TSA pre-check a few years ago, so not more pat downs….unless someone is training, then they pat me down anyway (for training purposes sir, this will be quick). The government got my money for the TSA pre but they don’t save me too much time as promised. Oh well, small potatoes….

Where was I? Oh, right, Now I have to get from the airport to the hotel. Wheelchair Van Company #2 has not called back. I dunno how that’s gonna go.

Here is what I do know: I’m going to have a weekend trip with my best friend. We will laugh, we will laugh some more and we will somehow get where we need to be. Why?

Because I am IN. Between you and me, every time I travel, it’s pretty much like this. I am used to the chaos, disorder, and stupidity of trying to go anywhere. The world is not built for disabled people. That makes it all the more awesome when I’m out there and people awkwardly stare at me.

I don’t care. I love it. Can I tell you why? Because as they stare, my mind is with my son, grin on his face, as he runs around outside before school trying to catch autumn leaves as they fall through the wind.

The distraction is the distraction. I’m in. Get ready St. Louis. Here I come.

Stay safe, stay awesome, and stay tuned. If I don’t write next week, I might be in Mexico with a stolen train. Send money.