Its always interesting to see peoples initial reactions when I tell them that my husband is paralyzed, and even more interesting to what question they ask first. Usually it is the curiosity of how he became paralyzed, then wondering what he does for a living. Eventually the question comes up of how he gets around, does he drive, how does he drive tractor and if you travel how does he get on the airplane.
The next time you take a trip that requires an airplane think about how you pack, how you get your luggage from point A to point B, going through security and getting on and off and airplane. It seems so simple when you have two legs that work and can get you to your final destination, little thought goes into these simple actions. For Ryan and myself traveling at times can be very stressful and we have learned to be organized and to simply go with the flow. You learn to ignore the dumb questions from security people like when they ask Ryan to stand up, you learn to ignore the oh so lovely full body rub down you watch your husband go through every time we go through security and you learn to basically put your trust in other peoples hands who have no clue about how to help people in wheelchairs. Once we get through that ordeal and make it to our gate we deal with the stress of usually getting our seats switched and making sure they have the aisle cart available to get Ryan on the plane.
Ryan and I are usually the first people on the plane and the last people to get off. The terminal provides a cart, more like a contraption, for Ryan to transfer onto that is small enough to fit down the aisle of the plane. Most of the time the people that deliver the cart and are suppose to help Ryan transfer have no clue what they are doing. Once they get Ryan to his assigned seat he then transfers himself up and over the arm of the seat and into his spot. Sounds simple enough but it is work and it is usually scary to watch the whole process. We finally get settled and thats when I start to worry about his wheelchair sitting outside of the plane, praying it gets put in the bottom of the plane. When we finally arrive to our destination and then patiently wait for each individual to get off the plane, we repeat this whole process over.
On our trip home from Colorado we didn't have the best experience, we landed and everyone got off the plane and the cleaning people where on it and we still were waiting for an aisle cart. Our flight attendants told us that they have never waited this long for one. The pilot and flight attendants both radio the terminal prior to landing requesting an aisle cart and its also written in the report so there should be no reason on why they don't have an aisle cart when we land. I got off the plane before Ryan and I thought our worst fear was coming true. His wheelchair was no where to be found. Its usually waiting right for us as soon as we step off the plane. Even the flight attendant was panicked about it. What most people don't understand is that Ryan's wheel chair is his legs. You take that away and we are in trouble. Ryan can't use just any old wheelchair. His wheelchair is custom for him. His "legs" cost on average $3,200 and the custom cushion he sits in cost $2,600. Now his cushion travels with us on the plane, in the tractor etc, its made to protect his behind since he doesn't have much padding back there anymore. I would say that this has to be the number one fear of any individual who is paralyzed while traveling. Thankfully they did find his wheelchair and I could breath again but the airline was pretty close to hearing a few choice words from me.
Most of the time they put Ryan to the nearest bathroom on the plane. To us this is extremely funny because well he can't get up to use the bathroom. Usually the bulk head seats work well, and we usually try to get on the side of two seats if possible versus the three seats so we don't have to deal with people crawling over us. Ryan always needs to have an aisle seat to, easiest transfer that way. Since I brought up the bathroom, you might be wondering how that whole situation works. Ryan and I talked about this and felt like people should know so they don't wonder. Ryan can urinate anywhere, obviously privacy is nice to have but just like any man he can go pretty much anywhere. Every person that is paralyzed has a different care routine or different way they go to the bathroom. Catheters and a bottle is what works for Ryan and he plans it out to use the facilities before getting on the plane and right away when he gets off. He usually doesn't drink anything on the plane either. We have had a situation on a longer flight where he did have to go and a very well placed jacket or blanket did the job. When he has to go he has to go. With Ryan's paralysis he has no control over his bladder and bowels and after he got hurt the doctors helped him with his care routine. Timing is key. But his body does tell him in certain ways if its time to go,his legs might get jumpy or his stomach might tighten up and feel hard or he sometimes will sweat. Thats the thing with paralysis, your body finds a way of telling you when something is wrong.
Most people don't understand that there is a difference between handicapped accessible and wheelchair accessible. For wheelchair accessible they need a five foot radius to be able to turn around. Hotels are always an issue especially when it comes to the bathroom. They either have a tub shower and provided the worlds most rickety shower chair to sit on or they have a roll in shower and either have a bench that folds down from the wall or again provide a shower chair. We also need to make sure that the shower head is hand held. Ryan and I have stayed in some not so wheelchair friendly hotel rooms. What makes it even more frustrating to me is that we are in the year 2016, we have ADA law, yet majority of the hotels we have stayed at in the United States have been far from accessible. On our honeymoon we traveled with friends to Mexico. Mexico doesn't have ADA laws like the U.S. has, but so far the resort we stayed at both bedroom and bathroom had the best accessibility versus any of the hotels we have stayed at in the US. Now the grounds on the resort made for some interesting treks but we had plenty of help from our friends and the staff to get Ryan around.
I had plans to video Ryan transferring to and from the aisle cart when we landed back home in Minnesota but with the stress of the situation at the time I chose not to. So we have some photos of what it looks like and also a few of some bathrooms, and interesting situations we have got ourself into. Traveling on wheels can be pretty stressful but its all about the adventure. Ryan actually travels more now being in a wheelchair then he did walking, go figure. There are some perks for being paralyzed and traveling we get to cut in front of everyone at security!