Last week the hubs and I went to L.A. on a mini vacation to see one of our favorite artist/producers Kaskade. It was a quick trip, just a Wed-Fri thing so we could get home and spend the rest of MEA weekend with our kids. I have traveled before with my condition, so I knew what to expect for the most part; lots of standing in line at the airport, less than desired seats on the plane and an increase in pain due to all the sitting, standing, waiting involved in traveling.
The last time we traveled it was the hubs, the kiddos, my mom and I when we went to Ft. Meyers, Florida in April of this year. Shortly after that I had my latest procedure to remove my rather ticked off cervix. Since that procedure I have been dealing with increasingly awful low back pain, along with several more varicose (and painful) veins in my legs. That being said, this trip was a bit more exhausting and painful.
I have been seeing a PT for about a month now who has done amazing things for my back pain, and while I am still 6 months or so away from any real lasting relief, I am already feeling so much better. He warned that the plane ride would be difficult, and suggested ways to make it easier on my back. Different positions to sit in, ways to stretch my lower back while still in my seat and he suggested that I get up a few times to move around a bit. The flight to L.A. wasn’t awful since it was just the hubs and I in the two seats in our aisle. I was able to fidget and shift as much as I needed to, and I got up twice to “go to the bathroom” to mobilize my back a bit. On the way back however, we had a 3 seat row and I was in the window seat. The gentleman on the end slept for the entire flight and I didn’t have to heart to wake him every 45 minutes or so so I would “go to the bathroom”. It was pure hell. My back hated me for 2 days after that trip.
I had called ahead to the hotel the day before and explained that our flight got in 3 hours before check in, but that we would need our room as soon as possible as I had a condition that required frequent rest. The registration agent was very helpful and promised to have our room ready by noon so I could rest before we headed to Hollywood. By the time we got to our hotel in L.A. I could literally feel every vein in my legs throbbing and my back/pelvic pain was completely out of control. I was counting the steps to a warm bath and a bed, but that was not going to happen. It turns out that the hotel had been booked solid the night before and they did not have a single room available for us to move into. After explaining the situation to the registration agent they offered to check our bags, and took my cell number to call us as soon as a room was ready.
Two hours later we had roamed around L.A., gotten lunch, used public restrooms to freshen up and sat in a park in 80 degree weather with our carry on luggage in tow and still not received a phone call. We headed back to the hotel to find that a room had been prepared for us, but that the agent had never finished checking us in, so no phone call was made. The room had been ready for an hour.
I realize that I do not look like your typical “sick” or “disabled” person, but if I went through the trouble of calling ahead to make this arrangement, and asking again at the front desk, why could this not have been followed through on?
Another situation like this came up later that evening when we went for dinner and a show at the Jon Levitz comedy club on the Universal City Walk. When we arrived there was no one else in the club, at the front of the room were small tables with regular wooden chairs and towards the back were plush leather booths. I requested that we be seated in a booth and our waiter explained that those were for VIP reservations only. The door man had already told us that the club did not sell out all 3 levels on a week night, so I knew that more than likely at least one space would be left open.
I explained to the waiter that with my condition it was too hard on my body to sit in a wooden chair, and requested again to be seated in a booth. The waiter eyed me, apologized and declined my request again. Is my word that I am in need of a space to rest not enough? Do I need a special pass or a stamp on my forehead that says “please accommodate me”? (In retrospect this is a stupid question. The answer is yes, I do need one. Question is, where do I get it?)
Over the next few days we spent most of our time sight seeing in Hollywood. It was a good 20 minutes from downtown L.A. so we took the metro transit to and from to save on money. Clearly, this was a popular way to go because the train was always full, with no where to sit. No where to sit except one seat at the end of every row with a handicap sticker above it. After several hours on my feet at the Universal City walk my back was killing me, as well as my pelvis, hips and legs and I was dying to sit down. There it was, that big blue sign just staring at me “This seat reserved for elderly and disabled peoples only”. The hubs did not hesitate to push me into that seat.
I was at once grateful for the empty seat, and immediately aware of the stares from other passengers. Here I was, this 30 year old woman dressed up in a maxi dress, makeup and hair done with a equally as nicely dressed man standing next to me while I took the only available seat left in the train. No walker or cane or crutches. No visible mark on me that told the world I needed this seat. Several stops later, after a particular woman (looked about my age) continued to look at me threw slanted eyes an elderly woman got on the bus. . I could feel the other passengers looking at me, waiting for me to give up my seat. It wasn’t going to happen.
With a disgusted sigh the woman who had been eyeing me stood and offered her seat to the elderly woman. She continued to eye me the remainder of our trip back to L.A. Several times I could see my husband prepare to say something, anything, to whoever was challenging my need for that seat with their eyes. More than a few times I considered looking at her and telling her exactly why I was in that seat. But no one said a word to me, and I never said a word to them. What was the point? They didn’t know me, and I didn’t owe anything to them.
We rode that train 4 more times throughout our trip, and every single time I ended up in that seat. Every single time I was on the wrong end of some less than friendly stares. I am a little embarrassed to admit that I questioned myself several times on those train rides. “Can I sit here?” “Am I disabled?” “Is my pain really so bad that I can’t stand for 30 more minutes?” The answer to all of those questions is yes. Yes, I can sit there, and I am at a bit of a disadvantage, and yes, it really was so bad that I couldn’t wait to sit.
Looking back on the situation, it’s possible I was hyper sensitive to the looks I was getting. I have never sat in a handicap space before, or used any other accommodation for disabled for that matter. This feeling of whether or not I was “disabled enough” to use that seat is probably just as much a battle for myself as it was for the people trying to decide what was wrong with me on that train. It was unfamiliar territory for myself and for the hubs. On our way out of the subway station he was telling me that, he too, was trying to decide what to say if and/or when one of the other passengers confronted us.
I was so grateful for that seat, you have no idea. But I also felt a bit defeated. It was like admitting to myself that I needed that extra help, it was a new reminder that the old me-the me who could stand just like all the other passengers- was no longer here. It was another way that life was showing me that I am, indeed, disabled.