If you’re reading this, I’m back.
Back from St. Louis that is.
We last left our hero (not) riddled with anxiety as he prepared to board a 737 (power wheelchairs DO fit under those planes…I always check as many regional jets have small cargo holds with short doors. I can’t fly on those. see also: discrimination in air travel). You may recall that I was about to embark on a weekend journey to St. Louis (Gateway to the west! (There is no gate)). I had a speaking gig at a regional 1.5 day conference for a specific type of muscular dystrophy called Becker.
Becker MD is what I was originally diagnosed with back in August of 1985. Since I am a musician and frequently get distracted (drummer), I would like to note that Man In Moeschen (St. Elmo’s fire) was steadily moving up the charts that month. Coincidence? I don’t think so. Go listen to the words. It’s me. Thank you, universe.
What was I saying? Oh, right. Becker. I believed that I had Becker for 25 years until a genetic blood test found that I actually have Limb Girdle MD type 2e/r4. That’s a lot of letters and numbers. The blood test also revealed that I am not related to Kevin Bacon, but I am, in fact, from Saturn. I was going to go with Uranus but there will be no cheap jokes in this blog (shout out to Donna.…onion rings, and flasks). So there you have it. I don’t actually live with Becker, but I was a fraud for a quarter of a century and I have all of the cool stuff that goes along with a chronic, life shortening muscle disease such as a power wheelchair, a weak heart and lungs, almost no muscle tone, and amazing front row parking along with a network of support that is amazing, unstoppable and also in this to receive said parking and an occasional free item when people feel bad for me in public spaces (that’s another story or 12.)
These qualifications qualify (bad use of words, edit much Pat?) me for speaking about relationships and adult life in rare disease. I am an expert. Bullshitting also got me two college degrees from accredited Universities AND I used to entertain adolescent children for a living, so I can talk about all kinds of things in front of all kinds of people. See? I’m doing it right now. You are hearing my voice as you read this. If you don’t know me, then…that’s a shame. You’re missing out on my voice AND the good parking. Your loss.
Focus. The airplane stuff all went fine. My biggest anxiety was realized when I (along with Jim) tried to go from St. Louis Airport (quite nice) to the Marriott about 8 miles south. (also quite nice).
We first tried the cab stand, where a nice gentlemen told us that he would make a few calls. The first company (St. Louis Taxi) asked where we were going and then said….and I quote: “Uh. I’m not going to do that right now. I’m not coming.”
The second and third companies did not have wheelchair taxis available on demand…..you have to book 24 hours ahead, which is tricky when flights frequently get delayed AND it takes me longer than the average human to ‘deplane’ as they call it.
Botton line: 2:30 on a Friday afternoon, we were hosed.
Good thing I had spoken to a nice lady earlier last week who works for the St. Louis Metro Light Rail. (Train = nice, stations = not so much, elevators = smell like pee). We couldn’t buy train tickets at the kiosk near the gate to board the train. Kiosk was OUT OF ORDER, so we had to download the app. There was crappy wi-fi near the kiosk and the metal gate to go to the train platform so we had to walk back through the underground parking garage and past the cab stand (where the kind old gentlemen asked if we changed our mind on the train….he would attempt to hail a cab somehow….Bless him)……past the cab stand and back into the baggage claim area to download the app to get tickets for the Metro Rail to go the 8 miles to the hotel. Red line east about 7 stops and then Blue line west (although it goes south) 4 more stops followed by a 2 block walk to the hotel and poof…..we are there.
Forty five minutes. Since we came off an airplane, we each had a carry-on bag, and our sleep machines (C-pap for Jim, Bi-pap for me….WEE). It was also cold and misting rain. These conditions are awesome for a power wheelchair user. A taxi would be so much easier….
We waited under a heat lamp while the train came to a stop at the station. The conductor told us that the airport stop is the end of the line, so we had to wait (still raining) while she went a few hundred yards up the track to turn the train around. Turn the train around…..got to hear percussion. Oh, wrong lyrics. How comical we must have looked, with our baggage in the rain. Also, my friend Jim hates everyone and everything, so this whole episode was a big hit for him. We were laughing though….as I said right then and there….”This is next week’s blog….right here. You can’t make this stuff up.”
We board and I immediately notice 2 things: (1) There are two armed security guards in each train car and (2) there is a large posted sign inside the train stating that assaulting a train conductor is a felony. The train is clean and as it rumbles through stops on the campus of U.Missouri of St. Louis, I wonder what the hell warrants armed guards and a felony sign. I feel safe, I guess.
True to the minute, we pop off the train 45 minutes later and the station is a ghost town. I ask Jim if we should have an armed guard here but he is already in the elevator as it’s still raining. Sometimes I’m not funny.
We exit street level and walk up a hill in the mist. Between city streets and tall buildings it is now windy and raining. Someone on the train told us that the day before, it was 90 degrees. I shared that I was from New England and I understand about temperature fluctuations. Also, we have a climate problem, but that’s a whole other thing.
Anyway, we reach the hotel without an issue. Well, almost. The valet drive to the front door is narrow and there is a woman in a Tesla blocking the ramp so I can’t go in. I look through her window in the rain and mist and she realizes that she is parked too close. She opens her window, apologizing and then apologizes again as she cannot back up or move forward….There are 2 more cars waiting and the valet people are nowhere to be seen. Thankfully, the guy behind the Tesla also has half a brain cell and he backs up so she can back up so I can get between her front bumper and the car in front of here to access the ramp that leads to the sidewalk under a roof that leads to the front rotating door, which I can’t use, but I can use the automatic door just to the left where the valet guy is coming out with a luggage cart full of bags so I need to wait another second.
I am not phased. This is traveling with a disabled person 101. No one sees it unless you are with me. Jim can and will back me up. So will other Jim, my wife, my sister, my brother in law, and anyone else who has ridden the lightning, err, I mean a plane, with me. Remember, my friend Bob helped me remove an entire dashboard from a taxi cab one day. Is taxicab one word? I’m on too much of a roll to stop and Google it. So you just get both. You decide.
We check in and go to the 7th floor. The room has a king size bed. This is common for disability rooms. I think to make more space? Could be awkward if you’re traveling with more than one other person….there would not have been room for a roll-a-way bed. Does that term use hyphens? Again, too charged up to Google.
The requested roll-in (hyphen?) shower is good, but a bit tight as the sink sticks out. We quickly assess that Jim can lift me past that in the morning when I need to get clean. It is then he realizes that there is not seat. It’s usually attached to the shower wall as a pull down bench, but here, not so much. He jokes: “Well, you can roll in and roll right back out…”
I inquire at the front desk about a plastic shower chair and am told ‘if we have one and it’s available, someone will bring it up.’ I say thank you as I don’t need it until the following morning, but I add, with snark, that if there is not one, then someone is going to Walmart and it’s not me because there are armed guards on the Metro Rail and I can’t get a taxi. The kind lady at the front desk tells us that if we plan on going downtown at night, we should travel in a group and stay in well lit areas. I decide that I’m not visiting St. Louis anytime again soon. Gateway to my ass. So you have an arch….big deal. My town has two arches and I can get a cheeseburger and fries underneath mine. You have pickpockets. (one word? seems to be)
I’m happy to share that the conference and my talk went well. I connected with a lot of new families and I am always happy and willing to provide support and remind them that there are really only two options when you boil this whole thing down: laugh or cry. Both are acceptable from time to time, but when I weigh the ridiculousness (is that a word?) of it ALL…I will choose laughter every single time.
I also had gumbo, which was great. I met a 3rd generation pig farmer. He encouraged me to eat more pork, and I caught up with wonderful friends that I would not know if I didn’t have this muscle thing. Shouting out John Wing, Natalie, Alexis and our two new secret squirrel members Justin and Courtney. You people are in for quite a ride.
Coda: We took the train back to the airport two days later. Sunny and more mild. Much more pleasant. Still armed guards on the train. Not sure what’s up with that. Please tip your waitstaff, you’ve been great. Until next time.
Stay safe, stay awesome, and stay tuned…
