TWD: Traveling While Disabled

I’ve been flying a lot lately to San Francisco for a medical trial. Most people, when I tell them that, inherently all understand that traveling is a bit difficult when you’re in a wheelchair – but I don’t think they quite understand exactly how complicated it is. And there’s no way for you to know unless I tell you. So! here’s what it’s like to fly when you’re in a power chair! (standard disclaimer, this is what it’s like for ME, your mileage may vary, put on your own oxygen mask before assisting others.)

I’m very lucky in that this study is paying for all of my travel. Luckily I don’t have to do with the expense – I’m not PAYING to go through all this nonsense. I’m also extremely fortunate that my local chapter of the ALS Association is loaning me a power chair specifically for travel. The airline has managed to damage two wheelchairs so far. The manual chair I was using had one of its brakes completely bent to un-usability, and the power chair had a knob completely sheared off that controls the headrest position. Fortunately in both cases the airline resolved the problem and everything was very cool in the end (they bought a new manual chair, and sent out a tech to my home to fix the headrest). It sucks to have to deal with, but I seriously thank the ALS Association for the loaners, thus preventing the damage happening to my own personal chair. If the S.S. Opportunity got broken, I’d lose my mind.

So! On to the airport!

Phase 1 – Security

The two airports I have to deal with, and I imagine every other airport, have a priority lane for people with disabilities. It’s like the ONE saving grace in all this nonsense. It’s usually my brother going with me, so he and I go through the short lane together. Shorter waits to get to the long wait at the luggage scanners. In the San Francisco airport, the priority lane is marked off with ropes on bases that are inevitably placed too closely together, making the lane much too narrow, so Gecko has to adjust them or I run them over. We show our IDs and boarding passes and get in line for security. My brother is a pro at getting all of our stuff on the belts by now. I don’t bother taking my boots off anymore, but I do have to surrender my shark purse and my hoodie and all that fun stuff. We let the security screener know that I’m going to need someone to check me through, as I’m not able to get out of the chair. The security screener shouts FEMALE ASSIST!! the first of several times. Usually, they point out that I have forgotten the bag hanging on the side of my chair and will need to put it on the belt, please. I politely explain that it is a catheter bag and thus attached to me so I will be unable to do so. Occasionally they take this news very gracefully, but usually they get flustered and mumble an apology and bark FEMALE ASSIST!! another time to change the subject.

Gecko stays with our stuff as it goes through, and I wait on the side for my FEMALE ASSIST!! to show up. There’s no good place to park a wheelchair in a security lane, so I’m often just kinda…there, while other people mill around, unsure if I’m in line. I’d like to live in their reality, where it’s possible for a power chair to fit through a body scanner. When a FEMALE ASSIST! eventually shows up, often she will point out that I have neglected the bag on the side of the wheelchair, I again explain that it is catheter bag and thus attached to me, and I’d be delighted to put it through if I could. And for some reason the FEMALE ASSIST!! are usually much more graceful about this information. Sometimes an apology, usually just an oh okay, and we get on with our lives. Life lesson: women seem generally much cooler about pee bags, in general. I’m led to the back, where everyone else is putting their shoes back on and getting their stuff together, and brought to a little table with a chemical sniffer on it. From here, the officer goes into robot mode. She is very obviously going through a mental checklist and script. She asks if I am comfortable being screened here, or would I like a more private area. Usually – usually! – what’s to come is not too terribly exposing, so I always opt to go ahead and do the scan where we are. She explains very carefully everything that she is about to do, where she is going to touch me and how she is going to do so. Up and down the arms, along the back, between and under my breasts with the backs of her hands, etc. I’m asked if I can stand up at all, and when I say I cannot, I am asked if I can at least lean to the side for her to get her hands under my buttocks. They always use the exact word, buttocks. It amuses me. I say I can at least lean for her the best I can and she satisfied with that. She then proceeds to do exactly what she said, in varying degrees of thoroughness. They always do exactly what they state they will do, but the intensity of the search varies from agent to agent. In one instance, I had an agent go so far as to pull my shirt up and stick her hands in the waistband of my skirt all the way around, exposing my belly to the whole security area, but typically it’s a perfunctory exam. She feels up my arms, my legs all the way to the crotch, under my buttocks (teehee), pats my head because I’m wearing a handkerchief, and then tests her hands for chemical traces. Sometimes she asks if I can remove my boots, and I tell her she’s welcome to do so but I cannot assist with that – usually that gets a nevermind, but once or twice they’ve taken my boots off anyway and put them through the scanner. They never help me put them back on. She then tests my chair by pressing on all of the padding in the back, seat, the arms, she does a visual inspection of everything to look for any obvious explosive devices, and then tests her hands again. The last thing they do is test the catheter bag. Often they’re content with me just squishing the bag around to prove it’s not anything rigid inside, sometimes they want to visually inspect inside the bag, and one time she made me take the urine bag out of the backpack. ATTENTION PDX: THIS IS WHAT A BAG OF URINE LOOKS LIKE. That was awesome. Then they swab my hands for chemical traces one more time, and when it declares me safe, I am free to go.

I find Gecko and he helps me put my boots and my sweatshirt back on, we load the luggage back up on the chair because I play pack mule on these trips, and we go to find our gate.

Phase 2 – Boarding

The way our schedules usually go, we have a bit of time before the gate agents are even available, so we have a moment to grab something to eat. When the gate agent shows up, Gecko goes to the counter and gives them The Schpiel. He lets them know that I am traveling in a wheelchair, that I will need assistance boarding the plane, and as a courtesy if they would like to allow whoever is in the window seat in our row to board with us so that they do not have to climb over me, that would be great. That last request was a hard earned lesson of awkwardness. Once I’m seated, I can only sort of swivel to the side to allow people in and out of the row, so whoever is stuck in the window seat has to climb over me like a human jungle gym. We have asked for premium seating from our travel agents and they’re usually pretty good about getting it to us – not because we want the free snack, but because there’s usually a little more legroom to allow the stranger sitting beside us to climb over me a bit easier. A bit less invasively. There’s paperwork to fill out for the chair, the details of which he lists by rote. The chair weighs 385 pounds. It is a gel type non spillable battery. The brake levers are located on the front lights, which he will be happy to demonstrate to the ramp crew. They mark all of this on a bright orange tag which is rubberbanded to my chair. Another tag for gate check is attached, and we are given the other half as a claim ticket. And then we wait.

About half an hour to actual boarding, we begin the circus. Hopefully, our aislemate is allowed to go on ahead. Ideally, the passenger assistance people have been alerted and there are two strapping people waiting for me. Often however, it’s a small Asian man, or 100 pound just out of high school girl, or a 5 foot nothing woman, or a man with back problems. And often just one of them. We patiently explain that I am not able to stand or walk on my own at all, and so I will require a dead lift into the aisle seat. Usually they are smart and request backup. Sometimes the tiny people stubbornly insist that they’ll be able to handle it. I explain that I am 240 pounds of dead weight, it’s not a matter of strength alone but also sheer physics, but if they think they can do it I’m game to try. This is me, being polite and stupid. I wheel to the end of the walkway just outside of the plane, where the aisle chair is waiting. The aisle chair is a tiny little wheel seat with straps on it. There is the inevitable discussion of logistics, and I explain that coming from the left side of me is the best way so we don’t have to work over the control panel for the motor chair. Sometimes, they try to take the catheter bag away from me to make it easier, and they usually recoil like they’ve been burned when I tell them it’s a catheter bag. The guys, mostly. Again, women generally seem cooler with pee bags. Hilarity. We move the arm of my chair and the aisle chair out of the way, and then there is the actual lift with mixed success. Because again, physics. It’s hard to do even if you’re very strong, it’s just an awkward carry. Sometimes they nail it. A few times I’ve gotten to very capable individuals who lifted me with no problem and got me in the chair with no sweat. A few. More often they find out the hard way that I’m not kidding that 240 pounds is a lot, and sometimes it takes more than one “123 lift” attempts. There is a very specific way to lift a person that they are obviously trained in, which makes the process easier on everyone, that involves them coming up under my arms and grasping my forearms while I cross my arms across my chest – but sometimes they’ll just grab on to me and just sort of haul for all they’re worth. They’ve left bruises on my arms before from this. I never complain, I’m just grateful as hell to have someone who can help me transfer. This process always knocks the wind out of me, and they’re on a very tight schedule so I’m not allowed time to recover before they start strapping me into the chair. Again, I’m a big girl now, so the straps they place across my chest usually just barely fit. If I’m having a particularly bad air day, they’re slightly suffocating. Once we have all the straps across my chest and across my legs, I tell them they’re going to have to physically lift my feet and put them on the bar, otherwise my feet will be dragging the entire way. They do so, sometimes half-ass and my feet fall and drag. So we have to pause and pick my feet up and try again.

I’m turned around in the chair and pulled into the plane backwards. Once we get me maneuvered to the aisle, the real fun starts. My ass is exactly as wide as the aisle is, so I hit the armrests on both sides every single time. The very first row is usually especially tight, so I crossed my arms over my chest and tell them they’re just gonna have to push. They do. Sometimes for extra fun the belts I’m strapped with will get caught on the arm rests as we pass. Once at our seats, the assistants busy themselves unstrapping me and then we do the haul. If we are lucky, the armrests in my plane seat raise out of the way. They don’t always, and an “up and over” lift sucks exponentially for everyone involved. If I am extra lucky, the assistants remember to raise the arm of the aisle chair before they try to haul me out of it into my seat. Often they don’t. “What are we caught on?” “MY RIBS” – which is honestly my bad as well, because I should know better than to assume they’ll remember. And it’s digging into my side so you would think I’d be aware of it. But maybe a third of the time we forget, so that hurts. One way or another we finally heave my ass into my plane seat, while my rock star brother deals with all of the carry-on luggage getting stowed and I try to catch my breath. Ideally whoever has the window seat is already seated, having gone on before us, and is vaguely amused by the whole thing. Someone ought to be. We manage to get me seatbelted in, and then we wait for everyone else in the world to board the plane.

And then we sit at the gate and wait. Usually the luggage crew don’t know what the hell to do with the power chair, which is ridiculous because people do travel with them. I’m living proof. I’m not unique. And yet every time, my brother has to show them how to engage the brakes, how to drive the thing, where the fuse is to disconnect the power – which is understandable, every single chair is unique – but then they don’t seem to know how the F to load the thing onto the plane itself. These people trying to figure that out delayed our flight almost half an hour once. And the pilot announced overhead exactly what the delay was about and cheerfully pointed out that if we wanted to look on the right-hand side of the plane we would see my chair being loaded onto the cargo. That was fucking delightful, being singled out like that. It was the best thing ever. There is nothing quite like giving a plane full of irritated people a target for their aggression. Pro tip: disabled people absolutely love having attention called to them. Introverted disabled people, doubly so. I said out loud to the plane that I was sorry. My brother kind of wanted to punch the pilot in the face. (Happy postnote to that story, one of the passengers stopped as they were deboarding to tell me I must never apologize for taking time and space. If people get bent out of shape because we have to wait for the chair to be loaded, that’s on the flight crew, not me. It was very kind and I told him so.)

The flight itself is like any other flight in the world. For whatever that’s worth.

Phase 3 – De-planing, Boss!

About 10 minutes before we actually land, I lean over to our aislemate and explain that when we land I will do my best to lean out of the way so they can get out. Sometimes they make polite noises about “Oh no it’s fine, I’ll just wait”, until I explain that I am literally going to be the last one off of the plane. It takes like 30 minutes. First on, last off. They usually see reason and struggle to get over me at that point. We wait until every last person is off of the plane. De-planing always seems to take twice as long as boarding for some reason. The cleaning crew always start before everyone’s completely off, and I feel really bad for them that we are in their way but there’s nothing to do about it. Eventually everyone’s off, and the passenger assistance crew show up with the aisle seat. Repeat: the entire rigmarole with explaining about deadlifts to people who are or are not capable of performing said deadlifts. Repeat the actual lift in, the strapping in, and the shoving through the too narrow hallway and out of the plane. I think maybe once my chair was waiting for me, every other time we have to sit there and wait for them to unload my power chair and bring it up the ramp to me – it has to go up an elevator, through the gate itself, and down the walkway to me.

If I’m lucky, the weight is less than 10 minutes, strapped into this narrow ass uncomfortable chair while the passenger assistance people occasionally make it pretty plain that they have other things to be doing. Sometimes they offer to swap me into a different chair so we can go up to the gate and wait for the chair to come – they can’t take the aisle chair out of the skyway and they can’t board the next flight until we’re out. I leave it up to them if they really feel like transferring me twice. They always say it’s up to me, but we usually wind up just hanging out and waiting for the power chair. If I’m really lucky, my chair shows up intact. It doesn’t always. See above. Once my chair arrives, we discuss the logistics of getting me from aisle chair to wheelchair, because this is a new crew, and really there’s no easy way to do it. The power chair is much taller than the aisle seat, so going from low ground to high ground is just more difficult. The headrest is in the way, and there’s just no graceful way to do it. Plus again, 240 pound deadlift. But when we do get me into the seat? It’s like heaven after all of that. My seat is so much softer than the airplane seat. I’m back in control. I’m free to go. We load as much of the carry-on as we can onto my chair, and we get the hell out of there.

The Conclusion

I honestly don’t know if I would do this if I were traveling for pleasure. It’s definitely worth putting up with for the medical trial and the chance to participate in it, no question. But of my own volition? I’m not sure it’s worth it. The loss of dignity, the invasive touching, the potential bruises, the singling out and staring from other passengers. The people I hve to deal with are always polite and usually kind, but it’s awkward for everyone. If it weren’t for Gecko helping me through all of this, there’s no way in HELL I could do it at all. That’s an absolute. But for now, we continue this once a month. For science.

And now you have a taste of what it’s like. I do not recommend it. Don’t get ALS, it sucks.

A Rad Update

Step 1. Gather the required materials.

One box of Radicava, which contains two 100ml bags. Two saline flush syringes. One package of IV tubing. At least two alcohol prep pads. One IV pole.

If we were taking labs, or redressing the PICC line, there would be so many more components. This, though, is the minimum. There will come a time when this is routine and second nature, but for now, everything is still double and triple checked. We lay things out like we’re preparing for surgery. It’s not far from the truth.

Step 2. Wash your hands.

There’s hand sanitizer, which also gets liberal use, but there’s no substitute for scrubbing your hands with soap and hot water. I find it almost impossible to wash my hands well these days, and drying is a nightmare, so I typically opt for the sanitizer only. If your hands work, though, go wash them.

Step 3. Open all the packaging.

The box of Radicava contains two trays of 100 ml bags of medicine, each with a silica bag and a little pink oxygen indicator. We peel back the lids on the bags, which each have a plastic seal over the input valve. We leave those intact until the last minute. We unwrap the two saline syringes, but leave the caps on. We open the first alcohol prep pad and set it aside. We unwrap the IV line and hang it over the IV pole. OK. I think we’re ready.

I’m appalled every day at how much waste this generates.

Step 4. Prep the line and bag.

We close the IV line, either through the clamp or dial, depending on the tubing style. Removing the bag’s seal and uncapping the IV line’s spike, we push the spike into the gray seal on the bag as straight as possible so as not to split the bag. It takes a surprising amount of force to do this. Because the line is clamped, nothing happens yet. We squeeze the tube’s chamber to fill it about half full of medicine. Carefully, slowly, we unclamp the line and allow the medicine to flow through the tube, stopping it just before it spills out of the end. We clamp it off and set it aside, dangling harmlessly from the IV pole for now.

Step 5. Sanitize the input valve on the PICC line.

The alcohol pad is scrubbed over the PICC’s blue input valve for 15 seconds. It doesn’t have a cap, so it’s out in the open all the time, well, tucked up under the sock against my skin, and must be cleaned carefully. We let it air dry.

Step 6. Saline Flush to clear the line.

Uncapping the saline syringe, the plunger is pushed juuuuuuust a little bit to push the air out. Or, you know, accidentally create a beautiful arc of saline in the air if you push too hard. The syringe is then coupled to the blue port on my PICC, twisted in place to secure it, and the saline injected a push at a time, to the rhythm of a heartbeat. Bublump. Bublump. On the second push, I feel the cold liquid in my vein, and a moment later, I smell and taste the saline in the back of my throat. It’s a hospital smell. The rest of the syringe is injected, decoupled, and disposed of in the biohazard bin.

Step 7. Insert tubing into PICC and begin infusion.

The IV tube is pushed into the blue PICC port, the little plastic collar screwed tight to secure the connection. The tube is unclamped or undialed, and the Radicava begins to flow into my vein. It feels like nothing. It’s not cold, like the saline, it has no taste, no burning like some antiseptics and anisthetics. There is no sensation at all, and the only reason I know I’m getting medicine is to watch the IV chamber steadily drip drip drip drip…

Step 8. Swap bags when the first one is empty.

The tricky part to this is allowing all of the medicine to drain out of the bag without letting the chamber empty, which will allow air down the line. Air in the line is bad. I have remedy available, if that should happen; it’s easy enough to use a saline syringe at the bottom of the line to force liquid back up into the chamber and clear air out. But it’s best to not let that happen. We swap the bags and sit back to wait some more. This is supposed to be a 1 hour infusion, but it’s taking closer to 2. A lot of the reason for this is an extension of the PICC line we added so that I can reach the ports myself, which bottlenecks the flow AND adds extra distance for the medicine to have to travel.

I can do a lot of this myself, except the coupling of the IV line to the PICC. Both ends are very floppy and you can’t touch the ends without having to start over and resterilize. Doing all these things, though, cause my hands to cramp up a lot and then be completely useless for the rest of the day, so I happily leave it to others when I can. J’s been doing it the last couple days, which is marvelously helpful.

Step 9. Bleed the line carefully.

Once the bag is empty, we play a game of chicken with the medicine, allowing it to drain down the line until the air is allllllllllllllmost to the PICC line. We don’t want air in my line, obviously, but we also want every last drop of the insanely expensive medicine in my veins and not in the trash. Once the line’s drained as far as we dare, the line is clamped, decoupled, and the entire bag and IV line is discarded. More trash.

Step 10. Saline flush.

Hands are washed and sanitized again. After another scrub of the port, the second saline syringe is rid of air pockets, attached to the blue port, and screwed in. More heartbeat push, more cold, more hospital smell and taste. Yummy. The syringe goes in the biohazard bin, even though it never really touched my fluids. Quite the opposite.

Step 11. Redress and cleanup.

We’re done! Everything is thrown out, the IV pole is collapsed and stowed, and the PICC line is coiled up and tucked under the itchy fishnet sock around my arm keeping everything covered.

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Today will be day 5. Fortunately, it is not time sensitive in application like an antibiotic might be, so as long as I do it sometime on that day, it’s fine, it doesn’t need strict scheduling. Last night’s dose began around 8; tonight will be closer to 10 or 11, my first ever dose was 9 AM. For the second round, I have to do 10 infusions over 14 days, and I can also pick and choose dates and times. If I want to do Monday through Friday and skip weekends, I can. If I want to do all 10 days up front and get it done, I can. It’s up to me.

The main problem I’ve had so far has been dealing with the PICC, in that it’s inconvenient as hell (I miss showering – I can only shower if I take these huge complicated precautions to wrap it all up watertight and I just can’t pull it off on my own) and itchy AF. The bandage tape is itchy, the sock is itchy, the lines are tickly and like to snake their way out of the sock and say hi to the world from under my sleeve. It’s convenient as hell for not having to have an IV poked in every single time, but everything else about it sucks. I’ve already decided to get the port-a-cath installed once I’m done with this round.

I’m tolerating the drug just fine. I *think* it’s exacerbating my headaches, but nothing unbearable, and it may be causing night sweats, but I have to research that to find out if it’s even a thing that might happen. Otherwise I’m doing good. We’ll find out in March if it’s affected my decline in the least bit.

So that’s everything so far about radicava, darlings. It’s going well. I’m still terribly excited about all of this.