Everyone has a plan until they get punched in the face. Mike Tyson said that once. Probably just before he got into the ring with Buster Douglas. Hahaha! But it certainly applies to absolutely everything with ALS, especially flying as I was about to find out. Not I. We. Yes, we were about to get punched in the face and we knew it but we were ready. Mostly. Ya know?
Hopefully you have already listened to the planning to travel episode before jumping here to listen to stories of chaos and madness. If not you probably should do that if you’re actually interested in preparing for a trip but it’s far from a comprehensive guide. For the rest of you, let the chaos begin! Shall we? Hmmmm?
I booked an early flight because I wanted as much time for disaster as possible. Grandpa Erwin always said hope for the best and prepare for the worst and we were ready. We, my indispensable team, were Erica, Vanessa and me. I’m so glad that I had the two of them with me. Going forward, I think traveling by plane with only one caregiver is possible depending on a few different factors, a direct flight being one. If I ever do that I’ll let you know. . .
Just before the flight I upgraded to first class. I had airline points and Delta had a fair price. Also, I was nervous. When we arrived at the ticket counter we met Stella and she was wonderful. We began explaining what we wanted and needed and she was fully understanding and made me feel comfortable with what was going to happen or not happen. I also have to explain that I can’t talk. I use a computer that is about 60 to 90 seconds delayed because I have to type with my eyes. You also need to know that both Erica and Vanessa are very protective of me. When Erica gets into nurse mode she is a task master and if you’re not working with her, you’re in the way. Vanessa, well Vanessa’s going to tell you what’s happening in such a way that you just want to make her happy, because if you don’t she will probably kick your ass. Yup. That’s my team. Hmmmm?
So Stella went right down the list and I just listened to make sure that nothing was missed. We had a copy of my Permobil spec sheet direct from the website that included battery type, weight etc. We also marked the brake levers with blue tape and made a wheelchair do and don’t list that we laminated. This made Stella’s job easier and easier to like us. People skills matter. Ya know? In no time we had everything tagged, boarding passes in hand and on the way to security. Easy peasy so far. I even joked to the girls that they were going to have to stand in line with the poor people while I cruised through the line with my precheck. Hahaha!
Well that didn’t work out very well at all. First, they wouldn’t let us all go through together because the girls didn’t have precheck. Pretty inflexible if you ask me but I guess shoes and belts are still dangerous so I kept my mouth shut. Chuckle. So away I go through precheck and there goes my Tobii, through the x-ray. Of course it is then that they start asking questions. I just smiled and nodded as the shenanigans began. You see, while I was afforded the courtesy of keeping my shoes on the TSA preflight massage was fully underway. The only thing that they didn’t ask me was to turn my head and cough. When they asked me to lift my arms I rolled my
eyes. Oh boy. And now they’re swabbing my chair and me for explosives. Ha! I do understand and I was patient but sheesh buddy. Hmmmm?
While this was going on, Erica and Vanessa were breezing through the other lane and trying to keep an eye on me. Thank God for nonverbal communication and eye contact. I could tell they were concerned about me and maybe slightly amused at my failure to charm my way through security. What can I say? And then I hear the words that bring fear into the hearts of the bravest souls. Excuse me sir, is this your bag? I shook my head because I only sound like a duck these days and they started rooting through my backpack like a fat kid trying to find the prize at the bottom of the crackerjack box. Bastards!
You have probably heard me chat about my backpack before. It goes everywhere with me and contains all the stuff I need to thrive, survive and recover when I’m in public. Everything has its place and for the trip it was full. Well , it was full. Now everything was pulled out onto the table and I rolled my eyes at what they found. Nothing. Not one damn thing. And you know who has to repack all that stuff? Not me. I just stared until they walked away. Vanessa got me repacked and we were on to the gate. Woohoo!
We weren’t the only ones that were going to be needing assistance and early boarding but we were definitely going to be the most involved. I had played it through my head a few times and made a good effort to put it all on paper for Erica and Vanessa and it was time to get into the ring with Buster. I even texted my flight attendant friend, Taylor. We couldn’t be more ready, and then they took my Tobii off my chair and onto the plane, leaving me speechless. Oh shit! This is about to get real. I know you know. Hmmmm?
I have been accused in my past life of being a bit of a control freak. While that’s not entirely accurate it’s certainly true that I tend to like things done a certain way and I work hard to make my vision clear and easy for others to follow. That’s been completely scuttled by ALS, at least in practice and I’ve had to practice patience and faith, a lot. Mostly things work out but I was nervous nonetheless. Strangers don’t have any way to properly judge my level of cognition, mood or personality. They see a version of two women and a big sack of meat with bright eyes. It is what it is. I’m a rag doll with a chip on my shoulder. I can own that and it really doesn’t bother me. I’ll never see them again. So here we go. Woohoo.
We were literally surrounded by helpers and passengers waiting and watching as we approached the airplane door. Erica had already taken the Tobii to our seats and Vanessa was getting me ready to transfer to what is called an aisle chair. Basically a furniture dolly with a metal seat and a bunch of straps so I don’t fall out. Stella was there. Three people eager to take my $50,000 custom wheelchair away to the belly of the beast. Two or three others that were there to help transfer and a pilot. I could tell they were preparing to grab and lift me up but Vanessa wasn’t having it. She had brought along my Etac sit to stand and my gait belt. Once she had secured the belt around my chest she put my feet on the turntable, and pulled me into a standing position and spun me around. A half a dozen hands guided me down on the aisle chair
and started strapping me down for the 15 foot ride to my seat where the entire process would be repeated in reverse. Nicely done! Hmmmm.
I think they were all a little surprised and impressed by our little show. I think we all were to be honest. Now safely in my seat, Erica was getting us organized while Vanessa went back to make sure the baggage team understood the intricacies of the wheelchair and to pass out a few ten dollar bills to encourage a gentle touch. Yep, I tip when I travel. I also bring donuts to the ALS clinic. Hahaha. We had removed the wheelchair cushion and turned the breaker off. Our instructions were taped to the back and it was whisked away. Vanessa joined us and we all looked at each other and sighed the sigh. We did it. Woohoo. As everyone else boarded and filed past us we relaxed and chatted with the crew and answered questions about ALS and what we were up to. Smooth sailing ahead. Hmmmm?
The approach into Salt Lake City had a few surprises for us. We weren’t parking at a gate because of airport construction. They were being a two story metal ramp to the plane. Oh boy. I immediately started to question if we were going to make our connection but our stewardess and pilot were already ahead of us. The pilot actually got off first and went to get our sit to stand and to make sure the chair was ready for me. The stewardess was calling our next gate to alert them to expect us and to confirm our seats. Wonderful hospitality from Delta. Hmmmmm?
When flying and needing assistance it’s first on but last off. I knew our layover was about 90 minutes which, in hindsight, should have been closer to 2 hours. We still needed bathrooms and coffee at a minimum. Ya know? Once again we were surrounded by helpers. Vanessa and Erica pulled me up, spun me around and I was in the aisle chair and strapped down. They’re pictures that I will post on Facebook. I was wheeled down the ramp and we repeated the process again to get me in my wheelchair. Safe! Hahaha. My wheelchair has definitely become somewhat of a security blanket for me. It’s incredibly comfortable but it is also my only way to be independent and mobile and I was happy to be in it. There was no damage and after a round of thank yous it was 20 minutes of planes, trains and automobiles just to get into the terminal. Whew!
The second flight was even better than the first and we even indulged in a Bloody Mary on the flight. The crew were based out of San Diego and were fabulous. We landed in Reno on time and all our luggage was accounted for. Really, the only inconvenience was that we had to go off site to get a wheelchair accessible van and even that was pretty smooth. The drive into the Tahoe basin has to be experienced. It’s so beautiful and awe inspiring that any attempt to describe it just falls short. It’s a lake in the sky of the bluest blue with snow capped peaks framing it south to north. It’s beauty gives me peace. Ya know?
I’ve always traveled. We went on some pretty cool adventures as a young family and I was always amazed by my grandparents tales of traveling. As I grew older I would often jump in a car with a few friends and drive off to wherever we could afford to get to. Oftentimes we would barely make it home penniless and hand the car keys back to our parents knowing that it might not make it to the gas station. Really, the only thing that has changed is I can afford the gas and, of course, a mild case of ALS. I need to travel. It makes me feel alive. Music up and windows
down and it rarely matters to me where we’re going. I want this for others with ALS and other afflictions too. I don’t want anyone to think this is easy because it isn’t. Things don’t go as planned and it’s easy to be self conscious. I tend to stand out in a crowd and people stare but most people are very polite and kind. Kids are the most curious and I try to smile. Mostly I’m in my own little world and I like to hide behind my sunglasses so I don’t have to make eye contact. Hmmmmm.
I hope you get out there and enjoy life. There are no rules with ALS. No real consequences to be concerned about. I have yet to be asked to leave or threatened with arrest and I’m not sure I could ever get to that point if I tried. My point being this, most barriers are in your head. Your ALS isn’t going to get worse because you travel. Might as well be tired on the beach or something. If you need A travel buddy let me know.
Ok, that’s enough for one episode. There is more to tell and the return trip wasn’t nearly as smooth so tune in for that story.
