Sonny’s Disappearing Digits: a Fairy Tale of Rheum Disability

A few weeks ago in the car, Roo and I were talking about how hard it is to explain and understand rheumatoid disease (RD) and rheum disability. Roo is alone among my five children in that he has no memory of the strong, healthy woman I was before full-blown RD onset when he was 6 months old. I made up this story to help him have some perspective on rheum disability.

Facing something new

fairy tale of rheum disabilityOnce upon a time there was a busy beaver named Sonny. Sonny had 7 little beavers at home to feed. So Sonny worked very hard at the Big Dam Project at the Wide River Bend.

One morning Sonny woke up missing a digit from one of his front paws. “This is alarming,” Sonny said, “but one mustn’t be late for work!” and Sonny hurried down the road. It was harder work that day with a partly incapacitated paw. “But, there are harder things in life than this,” thought Sonny, working hard.

Another morning soon after that one, Sonny awoke with another missing digit from the same paw! “This is concerning,” thought Sonny, “I hope this is not a trend.” And Sonny scurried off to work. Work went slower than before, and the manager noticed. “Sonny, don’t slack off, now. You know this project must stay on schedule.”

A couple of days later, Sonny awoke to find with great shock that he was now missing a digit on his other front paw! Management was not pleased when Sonny worked overtime to get the same amount of work done.

Sonny’s friends and family took the losses in stride: “It’s just something Sonny’s going through.” They didn’t seem to notice Sonny’s restrained fear that this trend might continue.

The next Monday morning, Sonny was less shocked to find that another paw was missing a digit. This time however, Sonny had lost a toe from a back paw, so scurrying down the road to the Big Dam Project went a little slower. The manager noted, “You’re late Sonny. Don’t let that become a habit.”

Work was more difficult with each loss, but Sonny did not quit. There were young beavers to provide for at home. There was also pride in working hard and being part of something important like the Big Dam Project.

Causes and effects

Beaver_DamOver the next few weeks, more of Sonny’s digits were mysteriously missing. Sonny did not know where to turn, but continued to beaver-on to get the work done. No one seemed to know the cause or how to help. There were rumors of something similar happening to one of Sonny’s great aunts. So maybe it was an old family curse, some whispered. Others supposed Sonny had gotten into some rotten wood.

Only two things were certain.

One, it took more time to do less work and Sonny struggled more with each loss.

And two, no one else seemed to realize how wide the gap had grown between Sonny’s capacity to get things done and his obligations. Sonny’s manager expected the same amount of work whether or not Sonny limped and dropped things. It bothered Sonny to know that no one understood how hard it was, and Sonny felt alone.

Sonny’s mother had always said it was important not to judge other beavers since it’s impossible to know what other beavers have endured. The disappearing digits impressed this lesson on Sonny’s soul. No one could grasp what was happening to Sonny, and they should not assume they did. But Sonny must not be cross at other beavers either, for being unsympathetic. Whether or not the missing digit mystery was solved – or reversed – Sonny was determined to be the kindhearted beaver that Mother had raised.

Finale: relating to rheum disability

Amazingly, Sonny could be a mommy or a daddy beaver. Sonny could even be a baby beaver. Or Sonny could not be a beaver at all – Sonny could be a person struck with rheumatoid disease (RD) – in the very heart of living life, working hard, loving his family. Boys and girls, I hope no one you love will be affected by RD the way Sonny was in our story. But if they are, maybe you know a little bit now about what it means.

Footnote on rheum disability

There is one thing missing from our tale that makes Sonny’s experience so different from that of people who live with rheumatoid disease (PRD): Don’t forget that RD is a chronic disease with several other symptoms not in our story, such as pain and fatigue. PRD experience harsh symptoms that affect all parts of their bodies. In addition to rheum disability, it has been said RD is the most painful disease known.

NOTE: PLEASE READ the recent post about the “$10 tornado” my Uncle is raising for our legal emergency. If you have already donated, please SHARE the link with everyone you know. Every $10 or SHARE helps get closer to the goal.

Read more RA Warrior Fairy Tales

Beaver image credit: Steve from washington, dc, usa (American Beaver) [CC BY-SA 2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

Beaver dam image credit: “BeaverDam 8409,” Walter Siegmund, Creative Commons 2.5

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

10 thoughts on “Sonny’s Disappearing Digits: a Fairy Tale of Rheum Disability

  • November 16, 2015 at 10:14 am
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    Sounds like my story. One day I woke up and couldn’t use my right hand. Went to ER. Doc took a look at my hand and said you need to see a Rheumatologist. Like Sonny, I didn’t go and continued working. Then, I woke up and couldn’t use my left hand. Still went on working. Wasn’t till I couldn’t walk that I saw Rheumatologist. The rest is history.

    Reply
  • November 16, 2015 at 6:40 pm
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    I couldn’t finish the story, because I already know the end of it. I think it is incredibly well written and completely describes the progression of the disease in the professional realm. One day you notice you are a little less capable of doing the things you could the day before, and then the snowball starts it’s roll. I have made changes, in my duties, in the assignments that I seek, in what I will agree to do with my friends and family. It’s heartbreaking to read it under the guise of a children’s story, but it so incredibly accurate.

    Reply
  • November 16, 2015 at 10:38 pm
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    Kelly, You are back!!!! This story made me cry because it so described my journey as I am sure it did for many of us trying to navigate our lives. I felt it deep into my soul. You continue to amaze me in so many ways. I am so sorry you are going through such a difficult time in addition to dealing with the RD. I know Roo knows what an amazing Mom he has.

    Reply
  • November 18, 2015 at 10:17 am
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    Was diagnosed with RA in 2004. It has been a long painful journey as you all know. I cannot get off prednisone (low dose). Any suggestions?

    Reply
  • November 18, 2015 at 12:45 pm
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    I just want to say thank you for your site. I’m In the ditches waiting to see a rheumatologist, it takes many months to get in.

    I am scared

    After years of battling with arthritis in many places, lots of NSAIDS, COX-II’s, injections, etc, mostly due to the aftermath of acute injury, I woke up one morning and my hand just simply didn’t work. There wasn’t even pushing through the pain. Scared me, have an uncle with awful RA, started long before biologics and lots of silica/asbestos exposure for me and him. I didn’t even ever injure my hand where it hurt EVER. Now I’m watching my hand deform by the weeks, it’s ugly. It’s slow. It’s insidious. I have 6 kids, 35 years old and am scared to death this will happen in my other joints.
    I’m learning to write with my left hand now, my 3rd grade boy has much nicer writing than I can make. I’m trying and hoping it doesn’t hit that side.
    I’m so scared

    I’m really embarrassed.

    I have been in the military 19 years. I have worked all those years as the lone or few females in my profession. Not to brag on myself, but I am tougher than most, and this is more than I can fight through.

    WHY DOES IT HURT SO MUCH, AND ITS ONLY THE BEGINNING?
    WHAT IS TO COME?
    This is only my first flare like this… Is every flare going to be like this?
    I don’t understand why my hand doesn’t even work
    I played boys ice hockey growing up, I know how to push through pain, my hand simply fails to do what I expect it to do

    THIS SUCKS BAD

    Thanks again

    Reply
  • November 18, 2015 at 1:03 pm
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    BTW. Worked for 10 long years after diagnosis and admire everyone who still works.

    Reply
  • November 19, 2015 at 9:35 pm
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    L. Smith. I understand completely cause that’s exactly how my RA started. Mt hand simply wouldn’t work and the pain was horrible. God bless you. Prayers for you and all warriors.

    Reply
  • January 13, 2016 at 6:44 pm
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    Thanks for posting this story! I shared it with my children,family and friends so they can have some understanding on Rheumatoid disease and things I am going through. I am 28 years old and have severe RA,Sjorgen’s and blood disorder. I LOVE THIS WEBSITE! It really helps me manage this disease better.

    Reply

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