Don’t Judge a Book By Its Cover- What CRPS Taught Me

Shannon writes about what CRPS has taught her about why you shouldn't judge a book by its coverBy Guest Blogger Shannon Leidig

Greetings everyone!  Happy Autumn! I so cannot believe we are almost to the end of October, which means the cold and snow of winter is just around the corner. I for one so am not NOT ready for that.  I truly hope everyone is doing well.  I have been meaning to write another blog for quite a while; however, this thing called LIFE just happened to get in the way – as this was not the blog I had planned to write.  That being said – there has been a situation that has happened that has totally rocked my world and that [is why] I feel I need to write this one titled: “Don’t Judge a Book by Its Cover”

I think we have all had these types of conversations with people:

Friend: How are you feeling?

Me: Oh I am fine, no worries.

Friend: Are you sure as you have missed work for a few days and I have been concerned – so what’s up with that?

Me: Oh, you know, just the usual severe RSD flare and the pain raging out of control.

Friend: Really, is that so?  You look fine.  Your legs look like they are back to normal so you could not have been down that long.  I mean you really look great, make up is on, hair styled, and you are dressed like always.

Me: Well, nice chatting with you. Catch me later.

I walk away shaking my head.  What did my friend/coworker expect me to look like?  Did she want me to come to work in my pajamas?  You know, it is such a struggle each and every day, each and every single minute the clock ticks.  Meanwhile, my legs are as FAT as can be; I struggle to get my jeans off.  My feet are so swollen and discolored, almost black. My shoes are killing me, yet I cannot sit at work with them off.   I pray for strength to get through it just to come home and battle it in silence.  We have all had conversations like this – and walk away wondering why.

I have had RSD for almost 27 years – diagnosed at the age of 19.  I remember that very day in April 1990 – my doctors told me I would not graduate from college, nor would I work and if I was thinking of getting married – think again.  HA! Last laugh on them, as I managed to do all of the above (even though I am divorced, which is [a story for] another blog) – and then some.  I recall telling my family and friends what I had and they looked at me as though I had four heads: “Really? What the heck is that?”  “We’ve never heard of it.” “Are you sure she really has it, or is it all in her head?”  OH MY GOSH.  Doctors even wondered whether or not I truly had RSD – as my case was not “typical.”  Is there really a typical case of RSD?  I remember telling people: “Please do not touch this limb” or “[Please do not] slam that door the vibration hurts.” [I was told to] suck it up.  The years would pass and I just finally pulled myself into my turtle shell. I felt so much safer on my own [versus] sharing. My family was doubting me, my friends were thinking I was a whackadoodle, yet I knew what was raging in my body.  It was this intense volcano blowing up in my body that I struggle with each and every moment – we all do.  Honestly, it took much more energy to deal with the people than it did with the pain. Then the endless doctor appointments and treatments literally suck the life out of you.

Fast forward to the year 1999 – the year prior to my marriage. At that time, my ex lived in Hawaii. Prior to leaving, I went to the doctors and asked them what I needed to do in order to decrease a severe increase in the pain. Their response was: “Nothing, just take your meds.”  Well, if anyone has ever flown to Hawaii, you know just how long that flight is.  While there, my ex and I hiked, saw the beautiful waterfalls, and everything [else] a “tourist” would do.  Flying home, I flew from Honolulu to Newark, NJ. That flight was horrific. I then flew from Newark to BWI-  coming off the plane it was butt stinking cold.  I noticed my legs looked much different and more swollen than normal. As Thursday turned into Friday, the swelling increased. My legs were much colder than normal and they were BLACK – that was the kicker.  The next day, I went to see my doctors and at that point it was either major nerve blocks along with a catheter or amputate my legs. WHAT THE HEY?!  The docs asked me if I did anything new or different and of course I told them.  I recall my nurse standing there (we later became friends and colleagues in the fight for pain awareness). She said: “Let me get this straight, you were hiking, doing this, that, and the other while you were in Hawaii in PAIN?  You walk into the office looking nice and tan and you say your pain is a 10?”  UM DUH. Y’all are talking about amputation. Am I supposed to look like I just crawled out of bed?  Do NOT judge me!  If I say I am in pain, I am in PAIN.  I hurt to the point I cannot stand it and yet you are questioning me?  How and why?  She later told me that I taught her a very good lesson through the years; never EVER judge a book by its cover – read the entire story!

One thing that whole experience told me is to say, yes I am, first and foremost, Shannon, who happens to have RSD/CRPS.  It is a beast and I am in severe pain 24/7, to the point it drives me to tears, but I suck it up so I can have a life.  Even to this day, family, friends, and coworkers who know I have RSD question if I really do hurt as bad as I say I do. Again, YES. Sometimes, I put that mask on really good while others [are unable to do so] but DO NOT JUDGE A BOOK BY ITS COVER! There are two sides to everyone’s story.  I am Shannon: daughter, sister, friend, employee, and coworker, and (oh by the way) a pain patient, too. I work full time, though there are days which I struggle even more than usual, but thankfully most of my coworkers know something is wrong when they can see how swollen and discolored my feet are. They can read it on my face, too.  Most of my friends can tell, though I will be honest, some do not want to hear it and that is fine. Those friends are not in my tight knit circle of support.  My family understands and they can read me like a book. My words get garbled though, as I do not want them to know how bad feel.

The next part of my chapter happens to be my doctors.  I am truly blessed to have the most amazing doctors – they are my supporters and biggest cheerleaders.  They so love to kick me in the butt when I am having a bad day.  Even when events were happening in their own lives, when their worlds were spiraling, they never looked any different. They still treated me, and all of their other patients, with respect and compassion.  I could tell something was bothering them; however, they said: “We got this, we are good.”  Okay…

Then several weeks ago, things hit the newspapers and made headlines, and honestly so many people rushed to judge and jump to conclusions.  I will admit I semi did, as I thought: “What happens if they close down? What do I do then?”  I cannot leave these guys, as they truly have been with me through thick and thin the past six years.  I started to think of their other patients, their employees, and other physicians, their families while sitting at work listening to whispers. “Oh, they are so bad. They need to be shut down.”  People were judging a book without opening it, delving into the many pages of the book.  Was that fair?  No, it was not.  Many other events have transpired to which my heart has been broken in two.  Once again, people are rushing to judge them and that is wrong.  It hurts me to hear this, as I know I have been judged so many times without people wanting to get to know me, know my condition, know what hurts/helps. Y’all know the drill. Dig into the book, learn by listening and watching. Sometimes, a cover of a book can be ugly, but the ending of the last chapter turns out to be beautiful.

As soon as I hear people rushing to judge the events of the past month, I am very quick to defend my doctors.  They have cheered me on when I was down and out, when I felt like I couldn’t fight any more. They would look at me and be like: “Really? You just want to say ‘done’ when you have done all this? Okay fine be a quitter.”  OH that gets me, let me breathe and turn the page. A new chapter begins.  Please do not judge, as we do not know what is happening in others’ lives.  Take time to read, watch their faces.  You can tell when someone hurts and is in severe pain. Listen when they talk, as that is a story in and of itself.  Please do not rush to judgment.

I, along with so many others, struggle to deal with the events that have occurred.  I just ask that when you see someone who is down and out, ask them what can I do to help.  Do they need anything?  Please do not pass judgment. “Oh they are sitting all alone, they just want to be by themselves,” well maybe they do, but is there harm in asking?  No. Do not close up the book without turning the page to the next chapter.  Sometimes, some of the ugliest chapters which we think will never, EVER end lead you to a beautiful start to something even bigger and better. Hang onto it and do not keep silent.  Share your story when someone asks if you’re okay.  Say: “Nope I am in a lot of pain.” If they ask, tell them what you have.  If we stay quiet, how else can we share our story and get the word out about RSD?  Do not judge as we have no idea what another person is reading. Out of the storms and chaos of thunder, lightning, hail, and downpours, the sun comes out and there is the most fantastic rainbow shining – and there begins our next chapter.

There is a song from Hamilton called, “It’s Quiet Uptown” for which I will paraphrase:

There are moments that the words don’t reach
There is suffering too terrible to name
You hold your child as tight as you can
And push away the unimaginable
The moments when you’re in so deep
It feels easier to just swim down

The Hamilton’s move uptown
And learn to live with the unimaginable

There are moments that the words don’t reach
There is a grace too powerful to name
We push away what we can never understand
We push away the unimaginable

Forgiveness. Can you imagine?
Forgiveness. Can you imagine?
If you see him in the street, walking by her
Side, talking by her side, have pity
They are going through the unimaginable

Again, sometimes a cover is so stinking ugly and many chapters are dark and disgusting, like when we are diagnosed with RSD, have a bad experience with treatment, or are trying to explain when someone does not understand what we have and what we experience.  Don’t rush through that chapter; finish it to its completion.  When there are storms in the story of our lives, wait for a moment, and turn the page. There will be the rainbow that is the most brilliant of any we have ever seen. We will all be thankful that we did not judge a book by its cover.

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