What Really Matters. And What Doesn’t.

RA Guy Adventures of RA Guy

All of my life, I’ve felt like an outcast.

It started way back when, and these feelings date to some of my earliest memories.

You see, as a young child, I had a severe speech impediment. Thoughts were clear in my head, and I always knew exactly what I was trying to say…but somewhere between my brain and my mouth, everything would become jarbled.

And the response from others was always the same. Shock. Confusion. Laughter.

Sometimes, even fear.

Luckily my family lived in Austin at the time, and my mother had the wherewithal to take me to speech therapists at the nearby University of Texas for assistance, and for answers. Soon afterwards, I was diagnosed with a severe articulation disorder, which is exactly what it sounds like (and which I describe above). Somewhere between my brain and my mouth, everything *was* getting mixed up, and I was left speaking gibberish.

Years of multiple-times-a-week speech therapy eventually helped me correct my speech issues, but the emotional scars didn’t heal completely until I was fifteen years old. During my junior year of high school, I lived in Northern Italy as a foreign exchange student, and I used the fact that I was learning a new language—and that I was supposed to be making mistakes when I spoke—as an opportunity to finally free myself from the constant fear of, as I used to affectionately refer to it as, getting my tongue “tied.” (And while I no longer show any signs of this articulation disorder, to this day I can still feel things starting to go off the rails, any time I try to focus too closely on the words that are coming out of my mouth…)

Rewind back to my childhood, though. In our quest to discover why no one could understand what I was saying, we discovered something else that would ultimately end up making me feel like even more of a misfit than my speech issues could have ever done.

Results of an IQ test were about as high as they could possibly be, and I was labeled a genius.

My most prominent memories of elementary school and junior high include images of my classmates, or my teachers, putting a problem in front of me, and then asking me to solve it. And when I inevitably did, they’d scurry around for a hard question. And a harder one. And an even harder one, always to the same results.

How did you do that?

I don’t know, I used to honestly respond. I just did it.

Though the years, however, the response from others became less and less one of surprise and excitement, and more and more one of anger, and of jealousy.

Which confused me. I wasn’t doing anything to show off, or to try to draw attention to myself. If I was asked to do something, I’d do it. And if there was something I was interested in, something that piqued my mind, I’d try to gain as firm a grasp and understanding of it as I possibly could.

I was just being myself.

My world was one where everything was seen as a series of fascinating puzzles, and brainteasers. Unknowns that would suddenly start to unravel with a little bit of exploration. Challenges that seemed seemingly unsolvable, but with time and determination (and with different ways of thinking), would start to slowly crack open…

Fast forward to graduate school–I’m a student at Harvard University—and imagine my shock when I’m told that my way of seeing the world is “wrong,” and that I need to change the way that I think, and the way that I work. I felt like a fish being asked to walk on land. What do you mean I’m doing everything all wrong?

And no, I really can’t explain how I do what I do. Trust me, I would if I could. I just do it.

But by this point in my life, such a truthful response would only make things worse.

I would be labeled cocky; arrogant; a show-off.

After a few years of working in the corporate world, I quickly learned that just being me would immediately mark me for retribution, as if solving fascinating challenges and coming up with new ideas were somehow a crime. The story was always the same: while some higher up would champion my research and design, my colleagues and immediate superiors would start to do their darndest to set me up for failure.

And when not even that would work, things would become—for lack of a better word—hostile.

And I would ask myself: should I stay here, and continue to deal with the madness, or should I go off and do something on my own? I know that I can play by these “rules” that don’t always make sense to me, but is that what I want to do?

Absolutely not.

And while I didn’t necessarily know what I would be jumping into, I did know what I was jumping out from…and I was just fine with my decision.

More than fine, in fact.

I was excited.


And just like that, I started to realize that I needed to stop trying to fit in. I had one goal, and one goal only, which was to be myself. It didn’t matter what other people said, or what they thought. If I did what I knew was right for me—even if it seemed shocking to others—everything would indeed be fine.

Then, one day I woke up, and I couldn’t move.

Not just that, but my entire body had been swathed with a blanket of permanent, excruciating pain. A blanket which could not have been any more real had it been knitted with wool; a blanket which I literally clawed and scratched at for years, in the hopes of being able to tear it away.

And even though I might have thought that some of my previous life experiences had taught me everything there was to know about being an outcast, little did I know that I really hadn’t learned anything yet.

Because when you find yourself in such a situation—when you send out signals from your head telling part of your body to move, and when it doesn’t, when that part of the body just seems to stare back at you, and mock you, it is almost next to impossible to wrap your head around—much less really understand—what is going on.

And as the minutes and hours turn into days and weeks and months and years, it’s even harder for others to figure out what’s going on. And it’s understandable to reach a point where we begin to yearn for others to know what’s happening to our bodies and minds…but being that oftentimes we haven’t even been able to do as much ourselves, that can sometimes be a lot to ask.

Which doesn’t deny the fact that while we have to figure things out on our own, we also have to totally rely on the loving support of others. But we have to do so in a way that doesn’t scare them, and that doesn’t drain them of their own much-needed energy and emotion.

We are indeed outcasts, when it comes to individuals who haven’t had this disease touch their lives in one way or another…but when we talk to one another, we have a sense of immediate belonging.

We have knowledge that even though all of our journeys differ, we all have a lot in common.

We have an appreciation of being able to encourage and support one another, no matter what challenges stand before us.

We have the ability to communicate what words are often unable to do.

Some people will laugh, as they did when what I was trying to say as a child was incomprehensible, or when I’d share an idea in school or in the workplace that for whatever reason was deemed to be “ridiculous,” but we just have to respond to them as I’ve learned to respond to critics over the past few decades.

We have to let them laugh, but drown out the chuckles.

We have to waste not one second, nor one iota of energy, in trying to change them.

We have to instead devote our efforts into figuring out what each one of us needs.

We have to discover what works for us.

We have to define, and create, our own worlds.

And we have to LIVE our lives.

There will always be people who try to make one ashamed of who one is. They will throw out words and names, which make them feel comfortable, but which make others feel hurt, or ashamed. (Case in point: over the past few years of writing this blog, I’ve been accused of anything/everything all for…you got it…just being myself.)

In the end, however, does any of this really matter?

It matters only as much as we let it.

And if there’s *one* thing that living with a chronic and disabling disease has taught me, it’s what really matters.

And what doesn’t.

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