Cold weather makes me heavy

It’s 47 degrees this morning and it’s almost the last week of May. This is wrong. As I woke up and got out of bed, I felt cold and heavy.

I’ve always had the sneaking suspicion that cold weather made my arms and legs feel heavier. When I was walking, it felt like climbing stairs in winter was usually more labored. Nowadays, moving around in the cold is noticeably more difficult than when warm. It’s not THAT much more difficult, but just enough to make me think it seems tougher. Combine that with the extra layers of clothing I have to wear when it’s cold out and it can be a chore just maneuvering regularly. It’s amazing what even a light sweatshirt can do to make my arms feel like I’ve got weights attached to them.

When the body is cold, blood flow to the extremities is reduced. This could explain why my arms and legs don’t move as well as they could. Blood flow to muscles is integral in performance. This is why athletes usually do “warm-ups” prior to athletic events.

People always ask me why I don’t dress more warmly when it’s cold out and it’s difficult to explain that I’d rather have cold arms that aren’t weighed down by three layers of clothes than not be able to move them to 100% of my ability.

I can’t wait until it’s back up to the 70s so I don’t have to be cold or answer that question anymore. Hurry up, summer!

When my legs get checked as baggage

It’s funny how people are so attached to their carry-on bags when they get onto a plane. If they are threatened with, “If that doesn’t fit, then we’re going to have to check it!” they will squeeze and smash their bag into that overhead compartment like they were trying to get their fat kid out of a burning building through the tiniest window.

Every time I fly, my “legs” get checked as baggage and go in the cargo area. I can’t get up from my seat to go to the bathroom, I can’t move about the plane to stretch. I am stuck there for the entire duration of the flight with my most important baggage, my wheelchair, riding down below. I have no idea if it has been taken care of. I have no idea if it will arrive in one piece. Hell, I don’t even know for sure it has been loaded on the plane most of the time. All I know is that if I have to deal with checking my wheelchair, then regular passengers can deal with checking their over-sized carry-on bags.

Now I realize this is a matter of perspective. But I am glad I have the perspective to look at flying as this complete and utter non-important event that only lasts a few hours. Have you ever been at the gate counter when someone panics because they might have to sit a row behind their husband or child or friend for two or three hours? From the way people get angry and loud, you’d think that one of them was going to be put to death.

One time I was flying back from Denver and a small piece of the plastic over my wheel broke off. It really wasn’t a big deal but the gate agent convinced me to stop at the baggage office and file a claim. I got down to the office and there was a short line. Immediately in front of me was a woman pulling a black rolling suitcase. She got to the counter and said, “I’d like to file a claim. My bag is damaged.” The bag looked fine to me and the woman behind the counter needed to come around and be shown the damage, which was a small white scuff about an inch long on the corner of the bag.

The airline employee said that this was not enough damage to file a claim and the woman protested loudly that something inside her bag might be damaged. They went back and forth until the airline employee said, “Okay, then open up your suitcase and if something is damaged, we’ll discuss it.” The woman refused and left, probably because she knew that there was no way her grandma panties and whatever other clothes she had in there could have been damaged.

I rolled up there next and said, “Okay, now I have some actual damage to talk about” and the airline employee rolled her eyes and laughed. We both knew who the crazy one was.

So could you imagine if EVERYONE had to have their “legs” checked as baggage when they flew? If nobody could get up and go to the bathroom, or walk around, or stretch? People would not be happy. Things like luggage scuffs or broken handles would seem minor in comparison. Unfortunately not everyone will gain this perspective. I’m glad I have, however, because it makes flying seem much less stressful and less integral in making or breaking my vacation.

What laughing at myself means to me

Are you able to laugh at yourself? Or do you take yourself so seriously that when something disability-related happens, you get angry? Let me give you an example:

I flew off my wheelchair about six months ago when the EZ-Lock bolt on the bottom of my chair caught a ledge in the sidewalk. I landed face down, head pointing the opposite direction of my chair and am quite sure I was knocked out for a split second or two. Yet the first thing out of my mouth as I laid there face down on the sidewalk, on top of my now-ringing telephone was, “I meant to do that,” followed by a chuckle and an over-pronounced, “Ow….”

Thankfully four random strangers came and flipped me over and got me back up on my chair. Covered in leaves and dirt and blood (my chin was bleeding) I made my way into the restaurant where I was meeting some friends and re-hashed the story, complete with laughter, before going to the bathroom and washing up.

It took time for me to reach the point where I could laugh at myself and the things that my disability presented to me. There was a time when the predominant feeling during a moment like the one I described would have been embarrassment or frustration or anger. But nowadays  I laugh. Why? Because laughing at it has been the best way for me to deal with these unexpected moments. I didn’t gain anything from being embarrassed or angry in the past. But at least now I realize I can turn these events into funny stories, like this one for example.

I also think this laughter is a good indication that I have accepted my disorder and moved past it. That’s what being able to laugh means to me. It means acceptance, moving beyond my disability, and not letting it interfere with my life by allowing the anger and frustration to consume me. In this sense, laughter really is the best medicine.

And when you have a disease for which there really is no medicine, laughter is a great holdover.

By the way, the stupidest part of this whole thing was that I don’t even have EZ-Lock in my van. The bolt was on the chair when I bought it off Craigslist and I never removed it because it never got in the way until that day. Needless to say that bolt was removed the next day and I haven’t fallen since. (Or yet!)

Viva Las Vegas: My stay at the Excalibur

It has been a week of travel as I migrated to Wisconsin for the summer. I stopped in Las Vegas on the way up and stayed at the Excalibur for the whopping rate of $25.60 a night if you don’t count gambling losses. Of course it goes without saying that like most Vegas hotels, that the rooms are far away from the casino. This particular setup had a long, steep, carpeted ramp to go up/down no matter which tower you were staying in. If you’re in a manual chair be prepared for a push. The room was nicely decorated but there were a few things that made no sense to me from a usability standpoint.

First, the desk in the room was too low to get my legs under while sitting in my chair. Had the surface not been quite so thick, it could have been possible. It was also positioned such that it stuck out into the middle of the room and I’d have to “parallel park” my chair if I wanted to bother using it. Of course that would also mean pulling out the chairs that were there to start with. The internet cable was also nowhere to be found and I had to dig it out of the mess of cords by the television. Since I couldn’t really sit at the desk I had the Ethernet cable strung across the room so I could use my laptop on my lap.

Second, the heater/AC unit was buried in this case so you literally had to stick you hand in and feel around to reach the controls. I also had to use my phone light to see in there, even during the daytime! It looked as though at one time there was a thermostat on the wall but all that remained was a piece of the green silicon motherboard.

Next, and this is a common feature of many hotel rooms, the night stand got in the way when I wanted to transfer into bed. I hate backing up and running into a pesky night stand when I’m trying to position my chair such that I can get into bed. To avoid this I ended up pushing the bed diagonally away from the night stand. Of course this means there’s a space between the head of the bed and the wall and inevitably it means my pillow is going to fall down there, which it did.

Last but not least is the bathroom. It was spacious, but had two rugs in it which my chair promptly ate when I turned around. After getting rid of those I went to take a shower. It was a big roll-in shower but had a tiny seat (18 inches max). Of course the seat was across the long shower from the soap dish so I had to balance my shampoo and soap on the arm railing. Both fell and hit the floor. And the shower head, which was already detached, sat on the other grab bar. Since the hook for the shower head was too high to reach, I had to deal with holding the shower head which sucks if you have bad arms like me. The other thing about the bathroom is that the toilet seat was not flat. It was curved inward so in order to slide off the toilet you have to go up and over. This makes transferring much more difficult than it should be. Another minor observation is that the bowl of the sink was set back about a foot or more from the edge of the counter top. So in order to spit into if I had to scoot up to the edge of my chair and stretch. Small detail, but super silly!

Overall I would consider staying at this hotel again despite the issues, but only if it was a night or two and only if it cost $25 a night again. I can put up with certain things for small amounts of time if they are cheap. This definitely wasn’t the worst “accessible” room I’ve stayed in, but could use some minor improvements.

Are we our bodies?

Many years ago I composed a letter to some people in my life and one of the lines was “I am not my body.” I can’t recall where I’d heard that before but the statement helped me realize that as people we have physical bodies, but 99.9% of who we are is contained inside our heads. This made me feel much better about dealing with the physical ramifications of having muscular dystrophy. Sometimes it can be difficult to remember that we are not our bodies, we just use them.

Many of the commercials we see on TV are selling something that will make our physical appearance better — makeup, clothing, weight loss products, acne treatments, hair products, and more. It’s difficult to look at these commercials and refrain from judging ourselves based on our appearances. Throw in some of the physical things involved with muscular dystrophy and it’s difficult to exist without constantly wanting to physically function like everyone else, much less have the same nice clothes and shiny hair.

Our bodies are tools for us to use to exist, but consider this: What if you could exist as a just a head? Picture your head and another friend’s head on a table somewhere, and you’re just there talking. How different of a person are you now because you’re just a head? Even though you and your friend are just heads, you are still different from each other in the way you were before. How much of you has actually changed now that most of your body is gone?

Sure you will have some logistical issues to deal with, like “Who is going to carry my head around town?” but your memories, opinions, knowledge, and all thoughts are still occurring as usual. You can have a conversation with your friend and still agree/disagree about the same old things. You can laugh, feel happy, sad, depressed or energized. True, some of this manifests inside your physical body, but you process your experiences in this world through your brain, which is still in tact.

So next time you are just sitting around talking to friends or family, consider what is happening — you are communicating and enjoying each other’s company without even moving very much. In this situation, does it matter that maybe your arms are weak or your legs can’t walk anymore? Not really. You are still participating in life and relationships and you can find ways to be happy and enjoy it for as long as it lasts.