What Being Disabled Means To Me

RA Guy Adventures of RA Guy

“The only disability in life is a bad attitude.” -Scott Hamilton

disabled_blueA few days ago, a long-time reader of this blog sent Rheumatoid Arthritis Guy an email, asking him how what he thought it meant to be disabled. I have asked myself this same question many times during the past few years, and felt like I did not have a good answer. However, I have been thinking a lot about this question during the past few months, and finally feel like I have come up with an answer. Whether it is a good answer or a bad answer is of less importance to me…what matters most is that I have an answer with which I am comfortable.

But before I provide my answer to this question, let me first talk about the process I took to reach the point where I currently am.

When I was diagnosed with rheumatoid arthritis, I clashed against the label of “disability”. (Having just been diagnosed, this was not the only thing I was fighting against.) For all of the grief that I sometimes give others about comments suggesting that I am too young to have arthritis, I found myself doing the exact same thing to myself. “I am only in my 30’s…I am too young to have a disabling disease.” Silly me, as if disability had anything to do with age! So, along with many other aspects of my illness, I shelved any thoughts related to disability. My perception of a) who I was and b) what it meant to be disabled just did not match up in my head. (Never mind that I had completely lost the use of my left knee and was only able to walk short distances with the aid of my crutches.)

Throughout the years – between the time I was diagnosed, and this past year – I often found myself revisiting the question of what it meant to me to be disabled. I continued to have ups and downs, but the period between cycles was much longer than what I am currently experiencing. (I got quite used to what I called my 3/1 cycle: 3 good months followed by 1 bad month, 3 good months followed by 1 bad month, and so on.) During the bad months I started relating a little more to the word “disability”. But I was still quite confused. So I’m disabled one month, and then I’m not disabled for three months? It just didn’t seem to make sense.

I still didn’t have my answer. But, at least, I continued to ask what being disabled meant to me.

A few months, I had a period where my hands and wrists got so bad that I started losing not only my ability to move them, but all the strength that they normally embodied. I could not cut my own food. Raising a fork to my mouth was excruciating. I stopped drinking water during the day, only later to realize that my reason for doing so was that the drinking glasses I own were too painful (that is, heavy) to lift. All of these struggles, on different occasions, led to multiple emotional meltdowns.

It was around this time when I started forming a strong professional support group who could help me move through the ups and downs of living with rheumatoid arthritis. I found a new rheumatologist. I started seeing a psychologist. I started regular physical therapy sessions. There was one suggestion that I received from numerous individuals: “Why don’t you look into assistive devices such as special cutlery, knives, and other aids that will make things a little easier?”

What the {insert expletive of choice}???

I couldn’t possibly do such a thing. Doing so would mean that I was…well…disabled.

But I decided to give it a try. Having my physical therapist mark up a Sammons-Preston catalog during my first visit, and then asking me to take it home to give her suggestions a closer look, did play a large role my decision, I must admit. I’ll never forget the emotions that I felt as I flipped through the pages that evening. My head spun. I had difficulty breathing. My anxiety levels were obviously increasing. To me, ordering these products would mean having to accept that I was disabled. I was not completely comfortable with these feelings, but I placed my order anyways.

A few weeks later (I currently reside outside of the U.S., don’t forget…) my products arrived. By the time the package arrived, I was already eagerly (could it be?) awaiting its appearance. I had given myself time to think about the situation, and in doing so I had already begun to envision how these aids would make my life a little easier.  With a little hesitation still, I started using my wide-grip cutlery and my special knife. I purchased a couple of plastic tumblers to use instead of my heavy drinking glasses. Low and behold, things were so much easier! I was no longer concerned about what my using these assistive devices might mean. Instead, I was focused on my new found sense of empowerment that these items were providing me! I could cut my own food. I could lift a utensil with new ease. Taking a sip of water was no longer synonymous with sharp jabs of pain in my wrists.

So I might be talking about knives and forks and cups, but to me this is how I identify with being disabled. To me, being disabled means recognizing and accepting my limitations – whatever they may be or however long they may last – so that I can do what is necessary in order to compensate for these limitations. By doing so, these limits diminish, and the empowerment returns.

I am no longer afraid of the term “disability” because I think it might increase my sense of loss and limitation. I now accept the term “disability”, because I know that by doing so I am speeding ahead. Nothing – not even the fact that I live with rheumatoid arthritis – is going to hold me back from doing what I want to do.

A week ago yesterday, I was going to my evening Aymara foreign language class. It was the last day of the first module, which meant that we were having our first exam. I was going through a particularly painful episode at the moment, so trying to review in my mind what I had studied was proving to be quite difficult. I started to feel sorry for myself. “Compared to the other students, I have such an unfair advantage, having to take this exam during a bad flare. Let’s not even get started with the fact that I am the only non-native Spanish speaking student in class, the language in which the class is being taught!” I felt like I had two strikes against me, before I even started taking the test.

But right before I stepped into the classroom, I realized the futility of moving forward with this negative attitude. I told myself that I was going to do the best that I could, and with that I would be happy. After all, all I could was my best, and nothing more.

When our exams were returned, I was surprised to see that I was the only student who received a perfect score – 10 out of 10! I share this information not to boast about my academic success…instead, I use it as a recent personal example of the following lesson: many of the limitations which I perceive in my life can easily be overcome with a positive attitude and a determined mind.

This is my disabled life.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!