This week, Dan takes a look at what being a guest with a disability can mean. When visiting with friends or acquaintances, there are many things that must be considered, and he takes us through a few. It can be tricky, but he helps to break down some of the concerns that those who are handicapped have when simply going to the beach.
Existing in today's world with Arthritis or any other ailment can be tricky, but it becomes even more of an issue when you have to meet people for the first time. So many different concerns weigh on your mind, it can be nerve-racking. Not to mention the fact that should you happen to somehow injure yourself or otherwise create a problem, you have to suffer through the scrutiny of overly-concerned guests and hosts who are ostensibly strangers. It's all part of living with a disability, though.
Over the past few weeks, I have had to opportunity to spend time with new acquaintances almost every weekend. Each time, there has been a significant amount of apprehension about spending the day with people who may not be as understanding about my condition as my close friends and family. Despite this and as much as I want to stay home and stick my head in the sand, I made a promise to myself that I would never again let my disease and it's symptoms keep me from experiencing life unless I was physically unable to move.
This fear arose because when my Rheumatoid Arthritis was the worst it had been in recent years, I became a hermit. At that time, my belly was extremely distended due to a medicine regimen which included a high dose of steroids. Also, my feet became swollen due to my (at-that-time) improperly prescribed blood pressure medication. Because of both of these conditions, I rarely found clothes that fit on my body, and when I say "fit on my body," I mean exactly that. Finding clothes that would fit me properly was a pipe dream -- I had trouble even finding clothes that merely fit past my waist and lower torso! As for shoes, well, that's another can of worms entirely. Those of you who are reading this, please heed this warning: you do not know how lucky you are to find shoes that fit you! When you cannot find anything at all to cover your feet outside of slippers, you really begin to appreciate the benefit of normal size feet. Having to leave the house in slippers on a constant basis is a reminder that your condition can change in the blink of an eye. It's all very humbling.
During this time period when my disease was at its worst, I cut off all communication with my close friends. My rationale was that since I wouldn't be attending any get togethers, there was no reason for me to have to constantly make excuses for not showing up. Instead, I simply ignored calls, text messages, and e-mails from anyone wanting more than the cursory report on how I was doing. in retrospect, it was a horrible policy to adhere to, but I wasn't thinking clearly at that time in my life. The horrible ailments had made human contact awkward for me. So, I cut out almost all socializing in order to prevent word getting around of just how horrible I looked and sounded. Unfortunately, as is often the case, most of my close friends realized what I was going through anyway, and fortunately, they wrote-off my near-3-year absence as a function of my declining health. As I have said many times before, finding good friends who deal with your disease well is priceless.
Because of all of this, I now force myself to go out if I am at all able. Even if I hadn't lost over fifty pounds and even if my RA hadn't been tamped down into near-remission, I would have still forced myself to socialize. But along with socializing comes another set of concerns. First and foremost, there is the concern that the people you are going to visit will not know of or understand what having an auto-immune disease entails. There are certain provisions and concessions that must be observed in order to make a day at the beach livable, and not every household has knowledge of or has the means to provide certain amenities. For instance, if I plan to go down to the oceanside and sit in the sand, I cannot sit on a towel, or even in one of those low-to-the-ground beach chairs. I have to have a normal-height folding chair to sit in if I wish to join the festivities. This is not something that a normal, beach-going family might have, so it leaves me with three options. I can bring this type of beach chair for myself, suffer through with one of their chairs, or I can politely decline the invitation to walk down to the shore and remain at the house with one of the hosts.
Which option would you chose? Each has its drawbacks. If you bring your own beach chair from home, that is another bulky thing to carry around. This can be a burden in and of itself for someone with RA, so it's not the ideal solution.
On the other hand, I could use one of the host's chairs, but this presents its own set of issues. First, there is no guarantee I will be able to get up out of the chair once I plop down into it. It may take one or two strong guests to lift me back up on to my feet. This can be embarrassing to the host, making them feel insensitive to your needs, and it also calls attention to your disease in front of all the other guests. Who knows, you might have to leave the beach early because your chair is so uncomfortable, thus creating another awkward situation in which someone may get their feelings hurt.
Also, if I end up staying at the house with one of the hosts, that can create an entirely separate set of issues. What if the host had not planned to have anyone stay at the house during the day? What if the host has to prepare for dinner and now has to entertain you as well? At the least, you have thrown your hosts a curveball that might be interpreted as rude.
As you can see, so much weighs upon me when I agree to put myself into situations where I am meeting new people and going new places. It may sound petty, but the concerns I outlined above are part of living with a disability. You must always consider your different options and prepare for all eventualities in order to help put your hosts at ease. That is, unless you host...