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Barry M. Wein Tells His CRPS Story

Published on October 16, 2019 under RSDS General Info

Barry M. Wein, MSW (He/Him) is a writer, storyteller, advocate and ally. For more than 20 years, he has helped good causes share their stories, so they can do even more good in the world. These days, Barry feels compelled to share his own stories because they simply demand to be told.

His voice is strikingly direct, honest, and intimate. Yet, he has an uncanny knack for finding a laugh even during life’s most challenging times. He finds it to be extremely empowering and encourages others to try it too. Barry seeks to create special moments of connection with fellow Warriors through his writing.

He understands those with CRPS are as unique as snowflakes, but likely share many common experiences as well. He hopes his writing will also touch the hearts, minds and funny bones of the general public.

This video captures Barry presenting his first CRPS story, “Consumed by Flames”, at a benefit held recently for the Madison Reading Project, a nonprofit organization that promotes literacy to underserved children where he lives in Madison, Wisconsin.

Before taking the stage, he had just learned that his CRPS had spread from his right hand and arm to his left The text to his reading can also be found below the video.

 

 

Consumed By Flames

By Barry Wein

The autumn day is unusually warm and sunny. In the distance, the city bus waits at the designated stop. Its doors wide open like the arms of a siren beckoning me to answer its irresistible call. I start sprinting, so I don’t miss it. My middle-age heart begins to race. Sweat is now pouring down my face like Niagara Falls from my receding hairline. Forget receding, these days it’s as if I can hear the follicles on my head screaming “retreat, retreat”. As I get closer to the bus, my breathing becomes shorter and I’m gasping for air. I quickly picture my diaphragm, the muscle that pumps my lungs, and am surprised to see it’s an old chain-smoking asthmatic man with a Yiddish accent. He looks back at me with a shrug and says, (cough) vhat vere you expecting, Captain America? Feeling a wave of relief so big it would have inspired Hokusai to make a wood block print, I step onto the bus with my right foot. Just then, to my complete astonishment, it feels as though the bus takes off faster than Usain Bolt at the 2009 World Championships.

In an instant, I fall back out of the bus and hold my balance precariously with my toes on the edge of the sidewalk, swaying like a circus tight rope walker, waiting for the behemoth of public transportation to pass until I plummet into the street. Before I’ve locked lips in a passionate French kiss with the pavement, my arms instinctively reach out to protect me. My hands, arms and elbows take the brunt of the impact before my knees follow suit.

I’d like to say that I rose from the street that day like the mythical Phoenix, a bird that crashes to earth every 500 years, consumed by flames, only to emerge from its ashes renewed and reborn with radiant scarlet and gold plumage, leaping into the sky and flying off towards an eternal sunset making its melodious cry. Instead, I managed to get up, dust myself off, and quickly walk to the sidewalk to get out of the way of oncoming traffic. Then, like a miracle, as if a Holy Spirit moved through me and took control of my body, I suddenly saw my right arm reach to the sky, my fist close by itself, and my middle finger rise on its own towards the heavens. My mouth opened and a voice that was mine but not my mine shouted with religious fervor towards the bus “Be fruitful and multiply.” But not in those exact words…

This entire sequence of events took less than 5 minutes to transpire. I never would have guessed at the time that it would change my life forever. After X-rays, CT Scans, MRIs without dye, with dye, with dye on the side and no croutons, it turned out that my dominant right hand and arm took one for Team Barry when I plummeted to the ground. My own personal big bang started with aches and pains, but soon expanded to a universe of orthopedic agonies that included trigger thumb, torn tendons in my wrist, and Cubital Tunnel Syndrome—which happens when the ulnar nerve that starts in the side of your neck and ends in your fingers is compressed where it crosses the elbow and needs to be relocated like a high performing employee to fill an open position in your arm.

The required surgery was a success and they sent me home with wound care instructions, a 5-day supply of Oxycodone and a 2-4 week healing prognosis. After working with occupational therapists for the next 6 weeks, my wrist was still very swollen and excruciatingly painful. My surgeon suspected I had a pain disorder and referred me to a specialist. The Pain Doctor gave me a thorough examination, using what he called “The Budapest Criteria”, which I thought was an espionage film from the 1970’s starring Michael Caine.

I was diagnosed with Complex Regional Pain Syndrome (CRPS) from my right hand to my upper arm. Like most people, I had never heard of it before. I quickly learned that the medical community doesn’t understand the underlying cause of CRPS yet, but generally believes it to be a malfunction of the peripheral and central nervous systems due to trauma or surgery. The brain becomes confused and nerves misfire, sending constant pain signals to the areas of the body affected by the syndrome. While there is no cure for CRPS, I was fortunate to receive such an early diagnosis because treatment within the first 6 months would lead to the highest probability of remission. Encouraged, I still held out hope that I would be able to return to work before my 12 weeks of FMLA expired. Now “The Rocky Theme” played on the soundtrack in my head as I fought with all my might to recover. Yet, despite my best efforts, I was no match for CRPS. There would be no “Yo Adrian” moment for me and not just because my wife’s name is Sarah.

Everyday it felt like I was shopping on the Sadism infomercial site. “If you order now, you will receive 7 unique types of pain, at any given time, without warning, 24 hours a day, 7 days a week—we’ve got burning, stabbing, shooting, crushing, throbbing, aching, and pins & needles. And this isn’t any ordinary pain; CRPS outranks childbirth, amputation, and cancer on the McGill University Pain Index. They don’t call it the suicide disease for nothing! And as an extra bonus, we’ll also include major depression, post traumatic stress disorder, irritability, short-term memory loss, fatigue, inflammation, physical hypersensitivity; muscle spasms and we’ll even throw in a free stress activator and a set of Ginsu knives!

I resigned from my job in June because there was simply no way for me to work. I’ve been fortunate enough to receive long-term disability insurance payments to help provide for my family. There is no single effective treatment for CRPS, so the first-line medication I was put on was originally developed for epilepsy because it has been shown to help with neuropathic pain. What they don’t tell you is that its main side effects are brain fog and weight gain. I gained 20 pounds in a month. The medication also exacerbated my CRPS symptoms, so I found it difficult to process my thoughts, remember conversations, recall common words, and do any simple chores that might cause the pain to flare. I was quickly becoming a cross between Charly at the end of Flowers from Algernon and Elvis at the end of the final tour. I felt so guilty about the burden that I put on my family, ashamed that I couldn’t work, and deeply depressed that my life seemed to be slipping away. I had suicidal thoughts, but they never got anywhere because I would immediately see the faces of my loving wife and daughter whose support continues to help me more than any treatment western medicine can provide.

It’s been 8 months since my diagnosis. My symptoms have continued to worsen. However, I have since switched medications, cleared my head, lost 30 pounds, and my routine now includes daily meditation, exercise, an anti-inflammatory diet, pain management classes, extravagant pity parties, weekly psychotherapy, good and bad days and I still occasionally binge watch 10 seasons of a TV show in 3 days.

I can no longer type, text or handwrite for very long, so I use the voice to text feature on my Macbook and iPhone. CRPS has taken away many things from me, but not my love affair with writing or my desire to share my musings in the hope that they will entertain, inform, and inspire others. Stories have the unique power to connect the writer and the reader, to help us see and understand each other, to feel and love each other, to cry and hold each other, and to remind us we are not alone, we are in this together.

Smoldering, fire licking the bottom of my feet like a hungry kitten with a saucer of milk, crackling, playful, gentle at first, fire flickering, flaring, leaping, spitting, plumes of black grey smoke and fire wind around me now, an inferno blazing, ash floating to the ground. Memories. Memories. Sobbing. Letting go. Mourning. Letting go. Tearing my clothes. Letting Go. I am consumed by flames.

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