Loved-one

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

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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!

Stained Glass

Painting On Life’s Canvas

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Three years ago, right around this time of year, I came extremely close to ending my own life. Not only was my movement extremely limited, but I was also having extended periods of blurred vision. My RA was raging out of control, and the thought of finding a way through the pain and confusion seemed way too daunting, and way too scary.

I was right about one thing at the time, though: I was extremely empty inside. (I felt like my entire identity/self had completely disappeared.) I would eventually realize, however, that even these feelings were an opportunity. They were an opportunity to rebuild myself and my life; a blank canvas upon which I could paint away with my soul’s content.

And that’s exactly what I’ve done over the past few years, and it’s exactly what I’ll continue to do in the foreseeable future. Yes, my rheumatoid arthritis is still there each and every hour of each and every day…but instead of being the focus of my existence, it’s become a constant shadow, relegated to the sidelines. Life goes on…and each and every day, I am grateful to be able to see just how beautiful it can be.

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