What Now? New Year's Guilt and RA

It’s a new year, and always around this time people do that thing that is both hated, loved, anticipated, and dreaded all at once: the incomparable phenomenon called "New Year’s resolutions."

While the name is technically accurate, it would be better if they were called "New Year’s temporary resolutions," or New Year’s Lies We Tell Ourselves, or New Year’s Things We Say We Are Going To Do But Then Give Up By Martin Luther King Jr. Day Because... Life. OK, that last one is a bit wordy. We’ll workshop it. But you get the idea.

An 8-month ordeal

The thing is, this year I actually, for once, have a literal fresh start in front of me, and I have no idea what to do with it. As those of you who follow me may know, back in July I started an 8-month adventure to turn my right ankle 50 degrees so that my foot falls flat on the floor. Well, it’s been almost 8 months, and I can say that my foot is flat for the first time in almost 15 years, and I have no idea what to do with it.

I feel like I should be doing more

I know, I know. You are probably screaming at the screen, "Learn tap dancing!" or "Go line dancing!" or even, "Become a shoe tester!" Yes, good suggestions one and all, but the thing is, I don’t want to do any of those things. I just want to walk into a place and not have anyone immediately stare at my foot. I know we aren’t supposed to care when people do that, but let’s be honest – we are human, and we do care. So that’s what I’m doing right now — just going into places and not getting noticed, but I feel like I should be doing more.

I mean, this could literally be one of the few times left in my life where I can pass as relatively "normal" without something going catastrophically wrong. My left foot (the other one) definitely needs a reconstruction as well, but they think we can stave that off for a few years by using wide shoes and orthotics, so more is coming. But for now, I am on hiatus.

Buying sneakers from my wish list

Still, I feel like I should be using these feet to foster world peace, or cleanup the Great Pacific Garbage Patch, or dig up landmines in Asia – you know, something meaningful after 15 years of on-again, off-again surgeries, procedures, braces, and special shoes. To date, though, all I have done is buy 6 (yes, 6) pairs of new sneakers.

Why? I doubt I’ll ever wear out all 6 before one of my feet literally falls off, but still, there they are. Six brand new pairs of shoes that I wasn’t able to use over the last decade and a half and had saved in my Amazon wish list. That’s the extent of what I’ve done with this miraculous gift of modern medical science. A ridiculously shallow gesture, at best, and a waste of money at most, especially considering 4 pairs are the same color and brand.

A feeling of survivor's guilt

Funnily enough, this isn’t an unheard-of phenomenon. I have heard others with RA voice it before, although it usually comes under the guise of "other people have it so much worse than me, so I shouldn’t complain." This thing I’m feeling is an offshoot of that, a second cousin once-removed of that survivor’s guilt, if you will. I mean, many 30-plus-year veterans of RA like myself that I know personally are wheelchair users. I am not, thanks to access to the best doctors in New York City and my mom’s tireless efforts on my behalf — as well as the luck of being born into a family with means.

I know it; I’m not naive to the fact that good medical care in this country still costs money, so all of that contributes to the bouillabaisse of emotions that make me feel like I should be doing something worthy of this newfound mobility. I just don’t know what it is.

Giving acting a try

One thing I’m probably going to do is finally delve into the world of acting and give it a real shot, like I have wanted to for a while. Now that I’m actually able to stand for longer periods of time on set and waiting for scenes, I can really do it up right.

I acted in a play recently just to see if the RA brain fog would prevent me from learning lines and it, fortunately, did not hinder me — well, didn't hinder me enough that I wasn’t able to overcome it. All in all, though, this is still a pretty selfish move, and not much that helps the RA community or the world as a whole.

A common feeling among people with chronic illness

So, this is my dilemma, and with New Year’s here and the ubiquitous resolutions thing, umm, resoluting everywhere you look, it’s only a cold, stark reminder that I should be doing something more meaningful.

I am 100 percent open to suggestions if anyone wants to chime in and let me know if anything springs to mind, but if you take away nothing else from this article, know that this form of guilt is something that many RA and chronic illness patients deal with: feeling guilty that they aren’t doing enough themselves, and feeling guilty they are somehow insulting those out there who aren’t able to do as much. It’s never far from our minds, and it only serves to make things that much more complicated for an illness that’s already as convoluted as a Victorian royal family tree. Talk soon.