This week, we made another of our quarterly journeys to Puerto Rico so I could get my intrathecal pump refilled with baclofen, have the dosage adjusted to try to offset some leg spasms and the new “MS Hug” problems I’ve been having, and pick up my next round of prescriptions for the pain medications that keep me functioning.
As I believe I’ve mentioned previously, air travel wipes me out. It is physically exhausting, causes increased muscle knots and discomfort in my legs (and now my arms), and can wreak havoc on the skin graft that covers my left shoulder blade -- too much resting against the seat and the friction creates an open spot that can take ages to heal properly. And that’s on the good trips.
We were fortunate that this weeks, everything was going right for us: the lifts were working at both airports for both legs of the trip. And best of all, they actually had big, strong men who listen on hand to drive the aisle chair. You’d probably be shocked at how often they send the 110 lb. women to do the heavy lifting while them men watch, and often criticize what’s going on.
Our last journey was not one of the good ones. In fact, I think we experienced just about every crip-related problem out there.
It started when we arrived at the airport and discovered that once again, the lift used to board passengers who cannot walk up the prop jet stairs was out of service. This is becoming a common problem -- this year the lift has been broken far more than it’ s been in service. That’s annoying in and of itself, but the truly frustrating aspect of it for me is that the lift itself isn’t malfunctioning -- it just has a flat tire that prevents the airline staff from rolling it out and aligning it with the plane’s door. Try as I might, I just can’t understand why it’s so hard for the airline to fly in a new tire or, heaven forbid, keep a spare tire on site. Perhaps extra tires have gone the way of the cheesy little paper-covered pillows and have been eliminated as part of their cost-cutting efforts.
For those of us who cannot walk, getting on board a prop jet poses a threat to our bodily integrity when the lift is functional. When it’s out of service, this process literally becomes a threat to life and limb because we must be carried up and down the narrow steps by whatever personnel are on hand while strapped into a horribly uncomfortable L-shaped metal dolly that’s narrower than the aisle in the coach section of the plane.
Here’s how the process works. The Hip Hubby and I are escorted out onto the tarmac first, where I’m met with the aisle chair. We position the aisle chair parallel to my wheelchair on my left.
If I were in charge of the world, it would be mandatory for all airline staff who might be called upon to hoist my cute little gimpy butt on and off of planes to experience what it’s like for themselves. Unfortunately, I’m not, and so the majority of people who wind up on aisle chair detail have no idea how to carry out this assisted boarding process without causing their passenger physical and/or emotional damage.
I’ve learned from experience that I’ll be able to tell what kind of ride I’m going to have within 60 seconds of transferring from my nice comfy wheelchair into the hard, narrow aisle chair, and it’s all based on the attitude of the people assigned to help me. If the boarding crew looks me in the eyes and talks to me instead of my husband (you‘d be shocked at how often that happens), there’s a good chance that it won’t be too bad because they will actually listen to my suggestions and preferences, and generally treat me like I’m a person instead of a piece of baggage. Those who don’t speak to me, or even acknowledge me, mean a bad time is ahead.
One of the reasons that the attitude of the staff makes such a big difference is that the Hip Hubby has been well-trained over the years. He knows my strengths, preferences, and “no touch” zones. He respects my preferences for how things are done instead of treating me like I’m luggage that needs to be “handled”. We have all the moves needed to get me from place to place down to science -- as long as good intentioned outsiders don’t try to impose help that’s not needed (nor wanted) into the process. We can tell from the moment we arrive whether or not it’s going to go well.
Last time was luggage handlers all the way, both ways. The personnel assigned to carry me up the ramp -- assigned, or course, actually means those who weren’t quick enough to scatter when they saw me roll up -- consisted of the aforementioned 110 lb. women and big burley male baggage handlers (literally). They were horrible listeners (who kept trying to “help” by grabbing me despite our ever louder protests), bad drivers (I kept getting jostled and banged up and down the steps, my feet driven into corners, and my hips rammed into the armrests and seatbacks. Thank goodness we always reserve the seats just two rows from the door -- I don’t think I’d survive the trip if we had to travel any further into the plane in the “care” of the airline personnel!
Sadly, it didn’t improve once we were seated.
Being claustrophobic and, before my catheter, a frequent visitor to the restroom, I’ve always preferred the aisle seat. That preference became a full blown need when my legs stopped working as well as they should. Try wrapping your legs together in duct tape, attaching 20 pounds of weights to your feet, then scooting yourself off of an aisle chair and all the way over to the window seat using your arms only to get an idea of why.
It’s clear the airlines’ policy writers have never done that, for the official rules say that’s exactly what I’m supposed to do. They try to claim it’s for my safety, but who are they kidding -- it’s so I don’t trap the healthy one who have a chance of escaping if the plane gets in trouble. (Ever hear the private briefing crips get when we fly? It explains in no uncertain terms that it’s my job to wait for everyone else to exit, and then it’s my husband’s job to get me out of there. I always respond by telling them that’s it’s just faster -- not to mention more honest -- to just say that I’m screwed if the plane gets in trouble. I finally got one flight attendant -- a great one, BTW -- to admit it on this last trip.)
Last time, we were stuck with by the book attendants on both legs of the trip. So after getting banged around by others getting to the seats, I then had to bang myself around getting over to the window. This time, we were blessed with flight attendants who either totally understood my situation, or felt sorry for me because of the cast, and let me have the aisle. It made a huge difference in my ability to recover from the trip -- I was only down for two days this week, as opposed to the five it took me to recover when we went in December.
Because this is already so long, I won’t even go into the lack of respect they show my $9000 wheelchair. It doesn’t register to them that they’re effectively stowing my legs, and should treat it with the same respect they show me…uh, strike that…they should treat both of us like we were their mothers!
Until the airlines are ready to retrain their personnel and either give crips the free upgrade to first class or redesign planes to make the seats and aisles wider (HAH!), the skies are likely to remain one of the more unfriendly places a crip like me can be. Thank goodness there are a few good ones working for the airlines -- I don’t think I could stand to fly if I knew that there weren’t a few out there who really get it.