Trapped In A Box, No Longer

RA Guy Adventures of RA Guy

Last night, I had one of my longest cries in a long time.

On Monday of this week, I called my doctor because my rheumatoid arthritis continues to worsen, even though two weeks ago we upped all of my medications and added a one-month Prednisone boost. One of the worst feelings in the world–even though I know that these meds often taken a while to produce the improvements that I’m looking for–is realizing that they are in fact not providing the help that they once used to. But this is not why I was crying.

As I wrote on Facebook last evening, I’m so far ahead of the game, on so many issues related to my rheumatoid arthritis. There is one thing that I’m still playing catch-up to, though, which is that fact that I am increasingly losing the use of my hands. My hands are in pure agony when they’re sitting still; wrapping them around the curvature of my computer mouse or trying to lift a cup of tea are becoming more and more of a challenge. I know that I need to start looking into more adaptive and assistive devices, both for my computer and for everyday tasks around the house. I also know that I am quite capable of making these adjustments, no matter how scary they may appear at the moment. Once again, though, this is not why I was crying.

My left leg is again randomly pulling itself into a huge knot. (This once happened while I was at PT, and my physical therapist flipped out…she had never seen anything like it!) In order to sleep I have to wrap a heating pad around it, in a last-ditch attempt to try to loosen some of the muscles. Of course, this doesn’t stop me from still waking up screaming, because–you’ve got it–my left leg decides it wants to look like a tangled-up slinky toy. (Just like “pain” doesn’t accurately describe what we live with, neither does “cramp” even begin to describe what is going on in my limbs at the moment.) Even as I was simultaneously experiencing all of these issues last night, and as it felt like my entire musculoskeletal system was crumbling to dust, I continued to ask myself why I was crying. All of the pain, spasms, cramps (whatever you want to call them) were still not the reason why I was crying.

I continued to look for an answer. Why exactly was I crying so much?

And then it came to me. I was crying because, at a certain point, the pain and the disability just feel like a box that is being erected around me, isolating me not only from the rest of the world, but also trying to isolate me from my own thoughts and my own body…and while for anyone else this box may be completely imaginary, for me there are many times when it becomes all to real. It is my mind’s way of trying to understand what is means to have no control over what is happening to my body; it is for the hundredth-, if not thousandth-, time once again experiencing the shock of not being able to move all or part of my body.

I reminded myself, though, that even if I feel like I’m trapped inside of a box, there is still a lot that I can do. I can–and must–punch holes in this box; doing so not only allows the light in, but is also lets everyone else see what is happening to me.

I’m not a victim, and I don’t want sympathy…but I *do* want people to see what it means to live with rheumatoid arthritis.

When I was a graduate architecture student at Harvard–almost a decade before RA entered into my life–I was completely fascinated with the concept of accessible design; where things such as ramps are an integral part of a building’s design and not just items that are added in order to meet accessibility requirements. I was so interested in this idea that I decided to make it the basis of my graduate thesis, and applied it to the design of a museum for prosthetic devices. I was excited by the thought of displaying these objects of beauty and design–both historical and modern–in the context of an “art” museum. (Eyeglasses, hearing aids, wheelchairs, artifical limbs, crutches, and the list went on and on…)

My excitement, however, left me completely unprepared for some of the comments I received during my thesis review, along the lines of I was showing things that were “supposed” to be hidden. I forgot some of the exact words that were used to describe my project, but I do know that they were not encouraging…and while much of the feedback had nothing to do with the actual design and execution of my project, it had everything to do with my basic concept. According to some on the panel, what I was doing was just plain wrong.

These words have stuck with me ever since, even more so now that I am disabled. (Who would have guessed that this entire issue would become much more personal than I could have ever imagined?) As I’ve gone through the many years of living with chronic pain and disability, though, I’ve made it more of a point than ever to not hide what is happening to my body.

I am not hiding it from others. Most importantly, I am not hiding it from myself. I am punching holes in the omnipresent box that surrounds me.

Which leads me to the present. Show Us Your Hands!, an international awareness movement that serves to unite and inspire people who live with inflammatory arthritis. Over the past few months, as this project has moved from its initial community collage to the nonprofit charity organization that it will soon become, I’ve heard some of the same echoes that I heard many years ago, back when I was a design student. “You’re not supposed to be showing things like this.” (Our hands.) “This is an aspect of our diseases that should remain hidden.” (Shame and stigma.)

Luckily, I am not alone in this challenge. We are all punching holes in the boxes that surround us. We are showing the world our lives, and we are showing the world our hands. We no longer hide.

As someone so eloquently stated in response to the Show Us Your Hands! Community Survey, “Show Us Your Hands! has created a unifying voice for those suffering from inflammatory arthritis, and provided a way for each of us to become advocates and to spread awareness. I am inspired to see that others are able to cope and remain positive.”

Or, “Normally I would not show my hands, in fact the opposite, I tend to hide them away as I sometimes get an adverse reaction from some people. This is an opportunity to say….This is me! I have to live with these hands! My hands show a journey of pain and survival!”

Let’s work together to continue to punch holes in the boxes that surround us, so that one day, such boxes will no longer even exist in the first place. Where instead of feeling trapped and isolated by our diseases, we can instead share our lives and share our challenges in order to unite and inspire one another.

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