OnAcceptance

On Acceptance

RA Guy Adventures of RA Guy

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

RA Guy Adventures of RA Guy

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

RA Guy Adventures of RA Guy

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!

Resources

More Autoimmune Disease Blogs and Resources

RA Guy Community News

A new list of wonderful blogs written by strong individuals living with rheumatoid arthritis, psoriatic arthritis, psoriasis, ankylosing spondylitis, and multiple sclerosis.

It’s Just a Bad Day, Not a Bad Life!
Don’t ever let a bad day make you feel like you have a bad life! In order to get the good, we must take the bad as well!
http://www.itsjustabadday.com/

Seeing Pspots
So, I’ve had psoriasis for over a year now. For some reason it seems to pop up more in the spring/summer time than in the fall/winter months (don’t ask me why, it’s usually the opposite for most people). Anyway, it started on my face this time which is the FIRST TIME it’s ever been on my face. I suppose it was bound to happen at some point. It’s hard to have psoriasis pop up on places that are hard to hide (likkeeeeee my face, unless I wear a mask or stocking over it but I don’t plan on robbing a bank anytime soon). My advice? Just FACE it!
https://seeingpspots.com/

Chronically Kristin
Inner musings of a chronic illness fighter determined to win.
https://kristinmariecoppens.com/

Lupus Chick
Funny. Raw. Informative. These ladies “get it.” Whether you are in bed with a flare, trying to learn more about Lupus, or just need a laugh with girlfriends who understand, we believe you will find it here on our award-winning blog.
http://www.lupuschick.com/

And Then You’re At Jax
Always looking for fun in the rheum.
http://atjax.net/

The Itch to Beat Psoriasis
Living with a chronic illness like psoriasis takes courage. I learned that lesson as a child with psoriasis. The world is a big place for a 9-year-old. That’s when I started using phototherapy to treat psoriasis. The closest phototherapy light box at the time happened to be about 30 minutes away at the medical center in Oakland, California. My mom, who didn’t drive on the freeway at the time, overcame her fears to take me to light treatments three times a week.
http://www.everydayhealth.com/columns/howard-chang-the-itch-to-beat-psoriasis/

Life According to Kenz
Since 2011, this blog and I have come a long way. There have been mountains to climb and storms to weather but I have never been more sure of my purpose or faith in this life and in something so much more magnificent following it. My sole hope is that as you read, you would feel encouraged and know that you are not alone no matter what battle you are facing.
http://www.lifeaccordingtokenzblog.com/

RA Diabetes
If you have Arthritis, Diabetes or both this site is for you. This site explores the issues of living with two autoimmune diseases, Rheumatoid Arthritis and Type 1 Diabetes. I am Rick Phillips and I live with these diseases. This site is about the humor and struggles of living with these chronic diseases. I have had type 1 diabetes for over 40 years and rheumatoid arthritis for over 15 years. I have been married to Sheryl since 1977; we have two wonderful sons and three of the coolest grandchildren anyone could ever ask for. Along the way Sheryl and I have learned to have a great life, good laughter and a way to keep our fears in check.
http://www.radiabetes.com/

City Girl Flare
A day in the life of a city girl living with psoriatic arthritis.
http://www.citygirlflare.com/

Autoimmune Mess
I love drinking coffee and reading dusty old books that I collect from antique and thrift shops. I also manage to live well with a complicated chronic invisible illness. I share my experiences as an Autoimmune Mess in order to help others along their journey through autoimmunity. It’s a hot mess chronic life!
https://autoimmunemess.com/

Overcoming Psoriasis
My name is Todd Bello and I was diagnosed with psoriasis at the age of 28. Unfortunately psoriasis is a chronic autoimmune disease and there is no cure. I had a small red spot on my scalp that wouldn’t go away. I was very concerned. Since then I did a lot of research. I’ve tried so many treatments. Been in four double-blind studies. Light therapy, the Dead Sea, Skin Cap, Acupuncture, Herbal remedies, Dr. Pagano, Tanning, Raptiva, Embrel, Engineered Tuberculosis Injections, Gluten-Free, Diets, Topicals, Exercise, Hot Yoga, Healing Masses, Steam Baths, Sulfur Baths, Epsom Salt, Spring Water, Florida Natural Spring Soaks, Steam Rooms, Saunas, Tanning Booth, Chiropractic Adjustments, High Colonics, Dovonex, Talconex, Sulfasalazine, Coal Tar, Florida Sun, Aleve, Cortisone Injections etc..I turned 50 this year and I’m still determined to find a cure.
https://overcomingpsoriasis.com/

Life With Multiple Sclerosis
An opinionated look at the daily challenges of MS.
http://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/

If you write a blog that you would like to be considered for inclusion in an upcoming blog list, please email me at rheumatoidarthritisguy[at]gmail[dot]com.