What-matters

What Really Matters. And What Doesn’t.

RA Guy Adventures of RA Guy 2 Comments

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.

Exhilarated.

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!

Loved-one

If You Are The Loved One Of A Person Living With RA…

RA Guy Adventures of RA Guy 7 Comments

If you are the loved one of a person living with RA, and it seems like that person isn’t necessary making the “wisest” decisions, please know that quite often those of us who live with this disease operate in survival mode…and while we “know” what is going on, getting out hearts, minds, and souls to comprehend as much is a challenge.

If you are the loved one of a person living with RA, and it seems like that person is becoming a “broken record”—day in any day out talking about how much they hurt, and how hard things are, please know that those of us who live with this disease don’t get one second of reprieve. Not only is the attack on one’s body endless, so too is the constant assault on one’s mind.

If you are the loved on of a person living with RA, and you are getting tired of hearing about one’s disease, please know that the fact that this person is still talking to others about what they are facing is a *good* thing, and—more often than not—is much better than this person talking to themselves alone, and maintaining a conversation in their head. Chronic pain plus depression plus internalized conversations rarely lead to a good place.

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

OnAcceptance

On Acceptance

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Replace ‘vision’ with ‘movement’ and ‘blindness’ with ‘rheumatoid arthritis,’ and this passage couldn’t be any more on-key. Losing control of part of one’s body is (beyond) hard, and is a long, long process that is fraught with fear…but when we stop fighting against how things are and accept our new reality, and move forward from there, we learn, firsthand, that amazing things *are* possible.

Excerpt from ‘Touch the Top of the World: A Blind Man’s Journey to Climb Further Than the Eye Can See’ by Erik Weinhenmayer.

“I had to escape. A new house was being constructed down the road and I had gone there a few times to think and be alone. I walked down the driveway and through the open door frame. The house was an empty shell. The workmen had left for the day and I stood inside completely alone. I walked through the empty rooms, feeling the cool plaster walls and the new glass windows recently installed. I could see the windows, thanks to the contrast between the light streaming through the glass and the dark wood window frame. I stepped back from one window, counting the paces before it drifted away, indistinct from the wall. Eight paces, only eight damn paces. A week ago I had seen it from eighteen. There could be no more lying to myself. The truth was brutally clear. Up until now, I had done everything in my power to shroud my brain in ignorance, to keep a layer between my life and the inevitable. I had clung to the fleeting belief that the doctors’ diagnosis of blindness by the age of thirteen had been wrong, that through force of will alone I would beat them, and that I was only imagining the loss today, and tomorrow I would wake up to see the vivid green of the trees and the basketball hoop beyond. But standing in front of the window, only eight paces away, I knew I never would. I picked up a handful of heavy nails from a wooden box and hurled a bunch toward the hazy light. Pieces of glass exploded outward, spraying the ground. The air whistled out of my lungs and returned in shallow bursts. I aimed at another glint of light and heard it shatter too. Then I walked around the entire house, aiming and shattering, not wanting one window to be spared. I would gut the house; tear it from the inside out. I was shattering the last window when I heard a siren from a car coming up the driveway. I rushed out a gutted window and stumbled into the woods, barely feeling the trees that I was crashing into and the sharp branches scratching my face. I pushed forward, not knowing where my feet would land, hoping the touched soil. My momentum drove me forward. Another step and my feet soared through the air. I landed only a few feet down in a ditch and lay there trying to hold back my heart that was beating out of my chest. I lay motionless for an hour, listening for the sound of footsteps.

That night, I had a dream in which I was running frantically though the woods behind the empty house. My friends were far in front of me, and although I ran furiously, I was falling further and further behind. I could hear leaves and brush crashing behind me and smell rank hot breath on the back of my neck. It was overtaking me, and I was overwhelmed by the fear from knowing that there was nothing I could do. The woods were all shadows and flickers of light, twisting and intermingling, dancing and lunging, and I was running through it and it through me. I bounced off a tree trunk that twisted into a scaly head of a sea crock, opening its jaw to swallow me. I hurled myself back against a tree that held thick, gnarled, thrusting claws, and then I tripped over a slithering snake, thousands of them, wriggling and twisting and striking. Ground, rock, and sky swirled together in a crazy kaleidoscope of color and the whole scene shook monstrously before me. Then, I felt emptiness below me, and I was falling through the void of black sky. Above, I could hear the creature laughing, laughing, and laughing, and it was the laugh of Chuck and Scott and Mitch, and it cackled, “Fall, Blindheimer, fall. There is nothing to catch you.” And that was all I could do, fall and fall, strangely slow and suffocating, like sinking into muck, but when I reached out, it was only black empty sky with the faint glimpse of the earth disappearing above me. That is when I woke up, clutching my bed frame, listening to the desperate rasp of my own breathing and trying to shake the sinking motion of the dream.

The fear of blindness has loomed over me so long, and I had never resigned myself to it. It felt like what I imagined dying would feel like. But no matter what I felt, no matter what I feared most, this death was coming, and whether I denied it was happening, or wished it away, whether I accepted it begrudgingly or embraced it fully, it was coming. It didn’t matter what I did or how much I kicked and screamed and fought. I had no say whether it would sweep or trickle over me, or whether it would hurt. It would come at its own pace, in a way it chose, and there was absolutely nothing I could do to change it.

Ironically, as I relinquished my grip…I sank into bitter relief.

Ironically, as I relinquished my grip on sight, I sank into bitter relief. I had not a clue how I would survive as a blind person, how I would cook a meal, walk around, read a book, but trying to live as a sighted person was becoming more painful than blindness could ever be, and the uncertainty of what each tomorrow would bring was almost as terrifying. I knew nothing about blindness. I had no action plan. All I knew was that I was sick and tired of getting lost on the playground and not being able to find the entrance to the school. I was tired of squinting my eyes and falling off docks, tired of trying to run down a trail in the woods or trying to shoot a basket. I couldn’t do any of it well. My head bashed against the trees, my skin was always scraped and bleeding. I lived between blindness and sight. While I couldn’t see well enough to play visual games, to read a regular-print book, to see an equation on the blackboard, I also couldn’t accept myself as being blind. But one thing I knew: compared to this in-between world, total blindness couldn’t be any worse, or any more terrifying.”

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

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What I Did During My Recent Vacation

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I went outdoors. I confronted the cold, head-on. I took deep breaths of fresh air. I stared at amazing cloudscapes. I sat below waterfalls. I hung out with llamas. I connected with my winter “vibe” (i.e. increased pain and inflammation). I started going to sleep earlier than usual—9/10 p.m., instead of my usual midnight…and found that the extra energy really helps come morning. I saw the sun set. I saw shooting stars. I saw the sun rise. I crossed the 20-pounds-in-2-months weight loss mark, thanks in large part to not just exercise, but also to my RA-induced meat and dairy dietary restrictions. (At this point I’ve eliminated all meat, dairy, and most sugars to great results, when it comes to managing my inflammation levels.) I played with my dogs. I started shopping for a new belt, my second in less than a year. I slept in a tent. I read. (Touch The Top Of The World by Erik Weihenmayer—a must read for anyone who is determined that they, and not their disease/health condition, will define their world of possibilities.) I drank coffee. I drank tea. I drank wine. I woke up earlier than usual. I slept in later than usual. I went to the gym. I went to physical therapy. I went to the coffee shop. I took photographs. I listened to Miles Davis. I lit candles. I lit incense. I had friends over for dinner. I connected with nature. I connected with my pain. I snuggled under the covers, and cranked up my electric mattress pad. I rested. I recuperated. I prepared myself for the next few months of winter. Most importantly, I told myself that everything is, and will continue to be, okay.

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