Friday, March 28, 2014

Flying with a Power Chair. Not First-Class.

I recently completed my first intercontinental trip with my power chair, Steven. I was nervous about the trip in the weeks prior and made several phone calls to United Airlines to make sure that all legs of the journey would run smoothly. Before I left I even googled "air travel with a power chair" to see if there were any helpful tips. One of the first tips I found stated this piece of helpful advice: if possible, fly first-class. As that was probably the least helpful tidbit of information I stumbled across, I thought I would document my own experiences so that someone in my same position (unable to afford a first-class ticket) might have more success than I did.

I flew out of Elmira, New York on a plane roughly two times the size of my parents driveway. Despite the size of the plane however, everything went smoothly. We flew from Elmira to Detroit and then eventually (on a significantly larger plane) from Detroit to Sacramento. The trip went so seamlessly in fact that I let my apprehensions about the flights home completely dissipate. That was a mistake.

Flight number one departing Sacramento was on a relatively small jet approximately the size of the school bus. As Shelly and Kelly and I had arrived at the airport three hours prior to our flight we were confident that the United staff knew that we were coming. In no great rush we made our way to the gate, stopping to buy uncomfortable, overpriced neck pillows on the way. Once safely at the gate we waited to pre-board the plane without any concerns. Indeed it was not until the boarding began and we got to the end of the jetway during the boarding process that someone approached me and said: "I am sorry ma'am, but we don't think this plane can accommodate your wheelchair." They asked me to reiterate the specifications of my chair (50 inches tall, 27 inches wide, 360 pounds) and reacted to these numbers with surprise and concern before saying, "There is no way your chair will fit on this plane."

I am well aware that employees of airlines are the recipients of hundreds of people's frustrations and disappointments on a daily basis, so I tried to maintain my composure but found myself a) frustrated, b) embarrassed, c) disgusted and d) annoyed (I know that at least three of those alphabetically listed emotions are redundant).  I calmly explained to the attendant that I had spent probably an hour and a half on the phone with United prior to our trip, and the airline ensured me that Steven could be accommodated on every plane I was ticketed for. (In fact, one woman spoke to me condescendingly saying something along the lines of: "your chair has to fit, it's the law.")  Nonetheless, the attendant helping us expressed her sympathy and politely directed the three of us back through security and to the ticketing counter.

There, the three of us stood around for another hour while a ticketing agent expressed her frustration that there were no other redeye options on United from Sacramento to either Elmira or Syracuse that night. She eventually gave up and turned us over to the US Air people to try to figure out how to get us home.   Finally the US Air attendant found a flight that would get us into Syracuse the following morning at 9:30 AM, a full hour earlier than we were supposed to arrive with our originally booked tickets. It was an incredibly indirect flight, but they at least upgraded our tickets from Sacramento to Phoenix Arizona. I was sad that the flight lasted only two hours because our first-class seats seemed so luxurious (traveling with a disability actually is easier in first-class!) Especially when compared with the seats we ended up in for the second leg of our journey (the longest leg) which took us from Phoenix to Philadelphia.

The most noteworthy part of the second flight took place before the other passengers had even boarded the plane.  The three of us were already snugly and uncomfortably in our seats after pre-boarding, when the airline attendant halted the boarding process so one of us could exit the plane to help move Steven from the jetway into the underbelly of the airplane. Politely, Kelly got up and offered her assistance. Once off the plane, she was greeted by a borderline irate, unkempt looking man with a pseudo-official looking US Air vest. That is when the fight ensued:

Long-haired, pseudo-official looking US Air man: I can't figure out how to get this thing to go.

Kelly: It is in neutral. You will need to push it.

US Air man: What do you mean I have to push it? Do you have any idea how far I need to go?

Kelly: Yes. I am sorry but it needs to be in neutral so you can lock it into place once it is on the plane.  Plus it is challenging to maneuver if you aren't used to it.

US Air man: You don't need to tell me how to do my job.  I spend at least five hours a day playing video games.  I know what I am doing.  I will be fine driving it.

Kelly: I am not trying to tell you how to do your job.  This is a $32,000 wheelchair and my friend's life depends on it, so it needs to be kept in neutral.  I am happy to help you push it up the jetway.

The man seemed to have no problem treating a ticketed passenger with complete disregard.  As Kelly helped the US Air man push the chair up the passenger lined jetway, the snarky interchange continued.

US Air man (redundantly):  This is ridiculous, I don't appreciate you telling me how to do my job.

Kelly (having stopped pushing, looked at the now fully irate man): Listen, we have had a really long day, I am trying to help you and I would appreciate it if you could show us just the smallest bit of kindness.

One of the 700 reasons I love Kelly is because she has a unique ability to maintain patience, decorum and maturity in even the most stressful of circumstances.  Ultimately, these qualities weren't lost on the irate man after all.  Before our flight departed, he sought us out to apologetically inform us that Steven was safely on board.

Suffice to say we departed on time and arrived in Philadelphia five interminable hours later. Our flight from Philadelphia to Syracuse involved a plane roughly the size of a school bus. In fact, it might have been smaller than your average school bus. When we arrived at the gate and I glanced out the window at our next ride I laughed. If they could not accommodate us on the larger plane out of Sacramento, there was no way the little prop jet would suffice. I was certain. And at that point in the journey, I almost was too tired to care. Surprisingly, they proved me wrong. Somehow, someway these three endearingly determined employees got Steven, and even more impressively, me onto the plane. An hour and a half later we were finally back in the Syracuse.

That was a long story so let me clarify a few tips for people traveling in power wheelchairs:
  • Know absolutely everything about your wheelchair.  Know the height, the width, the depth, the weight. Know about your battery. Is it a dry or wet cell battery?  Know how to put your chair in neutral and know how to lock it in place. 

  • Bring a travel companion who is your advocate. I used to travel alone, and was obviously much more functional at that point. If you do have to travel alone, however, practice putting yourself in stressful and exasperating situations while still maintaining your composure and your ability to self advocate. The above is not my strong suit, that is why I no longer travel alone. (Also, I am unable to feed myself, drink or otherwise survive without the help of others.)
  • Call the airline prior to your trip and insist that the specifications of your chair are double checked with every single leg of the upcoming journey. Get the names of the people you talk to. Make sure that the people you talk to document every thing in the computer next to your name so that all the airline personnel know you are coming well before you are scheduled to board.
  • Oh yes, and how could I forget – if possible fly first-class. It is a hell of a lot easier.

Monday, March 24, 2014

No Racing, Plenty of Pain

Imagine my dismay when against all examples of common sense, not just one but multiple people sent me copies of an article in the New York Times last week that profiled an 18-year-old athlete with MS. Apparently, against all odds, the girl was able to continue performing as an elite track runner despite being diagnosed with MS. As anyone who knows me well probably knows, I was once a runner too – albeit not quite so elite. And when I was diagnosed with MS in September 1997 I never ran another step.

The article frustrated me on multiple levels.

1. I feel as though the article lead readers to believe that with hard work and determination MS symptoms can be controlled or overcome. There is no truth to that sentiment whatsoever.

2. The girl in the article is remarkably talented, hard-working and obviously determined. However, she is not suffering from MS. She lives with the diagnosis, and will always carry the fear associated with the disease, but God willing she will continue to avoid suffering the effects of the disease that has the potential to ravage her 18-year-old body.

3. Healthy individuals reading that article are led, in my opinion, to believe that multiple sclerosis is not a disease that warrants donations for research. If I were looking to make a tax –deductible donation to a worthy cause, I would likely not send my money to the MS society (or to even the more worthy MS related causes) because nothing about that article made the disease seem problematic. In fact, there was a time in my running career that I might have read that article and been jealous of the girl because it seemed as though the effects of the disease helped her to run faster.

4. In addition to blatantly misrepresenting the disease, the article left me with what I like to characterize as ugly emotions: anger, jealousy, self-pity and more anger. As I read the hundreds of comments at the end of the article, I was confronted with additional cause for indignation. It seemed that every comment was another MS patient telling another story of athletic triumph. Let me clarify: I want no one to suffer the same disease course as I have. No one. Least of all an 18-year-old track runner. However, as someone who has slowly lost every working appendage to this disease, I was not left with one positive emotion after reading the article.

5. Anger, for me, is probably the least productive emotion I experience. Immediately after reading the 178th comment, I composed a borderline irate email to my doctor communicating a high level of frustration. He is a great doctor, and despite the fact that I have what my friend calls "MS on crack", I genuinely do not question either his level of expertise, his professionalism or his desire to help me. Still, however, who do I blame for the fact that this disease has robbed me of things I never even imagined I would miss? So I asked him, do I even have MS? Why can't anyone stop the progression? Why can't you fix me? Why, why, why!! I also direct quite a bit of anger at a God that I no longer believe has any interest in my health. And jealousy. Man the jealousy… Isn't envy one of the seven deadly sins? How though, how can I not envy those who have the same disease as I do and who, 20 years after being diagnosed, still participate in bike races or run half marathons? How can I not envy people around me who run and walk and stand without so much as a conscious thought? How can I not envy my friends and family members who can scratch their own faces, get on and off toilets without help, get on the floor and play games with adorable small children? I don't know. And sometimes I feel like my anger and jealousy are going to strangle me from within.

I have so, so much to be grateful for. And I am usually able to keep my ugly emotions at bay and maintain my perspective. I am not going to lie though, there remains a general level of sadness in my life that rises to the surface with a much higher frequency than I would prefer, a sadness that I try desperately to ignore. I have so many things to be grateful for in my life: for my friends, for my beyond awesome caregivers, for the beautiful house my parents were able to make completely accessible for me, for my almost perfect dog, and for a self that I genuinely like in spite of the body that I hate. But seriously? If my arm strength ever returns, and I ever put my eyes on the author of that article, she had better duck if she sees me coming.