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Going Dim by Cammie LaValle, Part 1

 

Going Dim

Part I of II – By guestwriter Cammie LaValle

(trigger warning)
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Picture of Cammie taken on the same day.

 

Remember that light inside of you that used to shine?  We reminisce about it in our heads; to that person we used to be.  That silent yet screaming conversation in our minds we have on a daily basis.  For some, it’s the majority of the actual conversing we do and sadly, it’s only with ourselves.  We are feeling ourselves; our internal light; the fire that once helped us accomplish so many things in life, be reduced to less than a flame; more like a sad, almost non-existent spark which could barely keep a match lit.

 

Sure, there are flickers of hope and tiny little fires at times; but personally, they are getting few and far between.  I have not given up all hope, but I am struggling to keep the grasp.

 

One of my motto’s is “Let Your Soul Shine” taken from a song.   How hypocritical of me to tell others to do just that when I am watching, feeling and experiencing my own go darker and darker every day.  I don’t mean dark as in evil, although I will admit I’ve had some pretty evil scenarios which I wish would play out in the lives of some of the doctors I have encountered in the last few years.   No, I would not harm anyone; but as you read that, I am certain you can recall one of those thoughts that has played out in your mind so detailed as though you were actually plotting a dismemberment.  I for one thought a log-splitter would suffice.

 

As I am writing this, I have backspaced hundreds of times thinking what I have to say or what I feel is not ready to be heard or will be perceived as seeking pity, over reacting, not being thankful for what I do have or God forbid, the “It could be worse” reaction we often get.  Yes, we all comprehend that, but more often than not, it is far from a supportive statement as we perceive it.  Minimizing our hell is what most of us feel; even though we know most of you mean well when it’s said.  But I realized the words I put down, if were written by someone else and read by me, are exactly the words I would need to hear; and yearn to hear.   So without a hesitant mind, and the pain jolting through my body and hands, I shall spill the complete ugly truth that I am not shining by any means.  I’ve gone dim.   This is not news to some; as they know me too well to believe the crap that spews out of my mouth when I say “I’m fine.”

 

I ask myself daily, how much more can I handle?  Do I even want to for that matter?  Yes, those thoughts are there when in my dimmest hours.  Will I say it out loud?  Probably not.  Will I say it here, when I know others just like me are reading this; yes, yes I will.  I can’t say I am proud of my thoughts, but I can say I am not about to blow sunshine up anyone’s ass; especially knowing the people reading this are struggling right along with me.   That’s not what we need and I may very well do it to others so they don’t have to worry about me, but I will not do it to you.  I know that sounds terrible as I have more than likely never met or ever will meet 99.999 % of you.  Why be truthful to people I don’t know and hide and lie to my own family and friends?  I have no clue the rationale behind this and won’t pretend I do either.  What I do know is that there is a greater chance those reading this, understand it to their core and need no explanation of the words, the thoughts, the expressions, the pain, the isolation, the self-doubt, and the meaning behind “Going Dim”.  I fully understand all humans go through struggles in life and I am not discounting any of that; anyone or any struggle of any kind.  I am addressing our struggle.

I am opening up my broken spirit and soul, my tired mind, and using my pain riddled body, to let YOU know, you are far from alone in this battle.  And I may be writing what you can’t dare to say out loud, but feel it as if it has taken over your entire being.  I know I have read some stories which after the first sentence I felt the lump in my throat.  I certainly am not sharing to cause distress or any tears, but if anyone reading this has that lump, let yourself feel the emotion and release some of that internal pain that is eating you alive and has taken over a portion of your soul.

 

More than likely you have caught on that I have not begun to describe the pain.  If you are reading this, you already know how it will read.  However, for those friends or family that are reading this who have a loved one suffering, I will follow this with a brutal truth that the one you know, who is  suffering, is too damn scared to tell you.  Whether it be pride, or wanting the world to believe we can handle this, or the complete farce we muster up in order to appear stronger than we actually feel.    Your loved one has gone dim.  And you might have as well; attempting to care for them.   Addressing the other side of this is just as important as addressing ourselves.

The ME I once was, is still seen by my husband and some family and friends; however, I don’t see her.  I feel as if she’s gone for good.  I talk with her in my mind and actually pray she will come back, somehow, some way.  She could light up a room (from what I was told).  She was vibrant, funny, witty, intelligent, strong, hard-working, worthy, helpful, selfless, and although some deep down pain existed as we all have and hide; she was happy.   She helped raise 2 children, who she loves.  She was a good wife, a good friend, a reliable sister and had worked since a very young age; worked her ass off.  Now, the relentless quest for her to return has come up empty.  She was me.  I was her.  We’ve both gone dim.

 

Where did she go?  CRPS (full body), Fibromyalgia in addition about a dozen other health issues; some quite severe, has held her captive and the ransom demand at this time cannot be met.  The hope and flicker of light is diminishing.  Sure, I say I am hopeful and staying positive, but who am I kidding?  It’s gradually becoming such a farce, I can barely hold back the tears when I say I am still positive.  It’s a blatant lie.  I feel as if I am getting a very real glimpse of Hell.

 

Ice pick, razor blade, vice, hammer, pins, needles, knife, match, truck, salt, gasoline, fire, electric shock and flames; all of which I feel has been used during this captivity.  A scene from a mysterious attempted murder movie in which we wait in the trunk to be rescued.  Someone on the outside may not comprehend that comparison, but I, along with so many others; truly feel this.  And the trunk is our lives at times.  That dim, cold, dark, isolated place, we don’t willingly go to, but find ourselves there, stuck; more often than not.  The tools used is what we compare our pain to; as CRPS/RSD plays out such a brutal attack on our bodies daily.  As we wait for the ransom, which in our lives is a doctor, a treatment, a cure, we succumb to this attack and 24/7 try to prepare ourselves for the next dreadful blow.  I try to hold it in as to not be a burden; not wanting people to see how bad it is.  There are times it just comes out, screaming, howling, paralyzing pain to the point I can barely breathe.  Arms, legs, feet, back, hips, face, ears, chest pain where it feels like I am having a heart attack, but I know I am not.  Then I think, what if I do have a heart attack?  If I feel like that daily, if I have one, will I even know?  And my hypertension gets so out of control, my neck feels like I am being stabbed, my vision gets blurry, I lose minutes and have lost recollection of hours of time.  I get scared to be alone in my own home.  This scares the sh*t out of me!  On nights the blood pressure is too high and the chest pain is severe, I am too damn scared to go to sleep as I honestly wonder if I will wake up.  Yes, that is how my mind works.  I pray I wake up.  I won’t go into the thoughts and prayers that go on, when I honestly question if my life, as I know it, is actually ending that evening.   This is brutally honest and I know it sounds far-fetched to some.  But, many reading this feel the same way or have felt the same way.  I am saying it now, to give you some peace of mind that you are far from alone.   It is not by any means a healthy way of thinking, but it is where one’s mind tends to go at times.  I am not proud of these thoughts, but they are true.

 

Pain changes people.  It’s relentless.  The beast wins in those moments and all I can do is wait for it to let go of its ever so tight grip of my body.  I think to myself during these times, how the hell am I to live this way?  How is my husband to live this way, with his wife being consumed by pain, lost herself and her feeling of self-worth?  I am not the woman he married.  Far, far from it.  He is my biggest advocate and has not left my side, although I wouldn’t blame him.  His wife is gone.  The anxiety, stress and depression that goes along with this beast leads my mind to wonder “when” he will have had enough; not “if”.  For better or worse, sickness and in health, meant something to him, just as it did and does to me.  How lucky am I to have such a man who took his vows so serious, that as he watches his wife diminish and change into someone he didn’t marry, he continues to assure me we are in this together and he will never leave my side.  He is the only one who can make these demons stop in my head.  He is the only one who has seen it all and still has faith I will come out of it; come back as the woman he married; come back from “Going Dim”.

 

What has brought you to this page, is why many of you will understand what I am about to say next.  You are dim yourself from disease and pain or you are caring for someone and are desperately trying to find a way to understand and help that person; your loved one.   (For those seeking help to care for another – THANK YOU!  Sadly enough, you may be the only one doing so for that lost screaming soul).

 

Too many are left alone and instead of having support in waiting for that ransom, they remain in the trunk; dim, isolated, begging for relief, kicking and screaming to get out; get help and for someone to actually listen.  When there is never a response, those broken souls take it upon themselves to put an end to their private mysterious movie which is their life.   They don’t think they can handle the next blow, they have been disregarded by doctors, family, friends and in their mind; the world.

 

Pain messes with your mind.  Even those who truly have support; at times feel like an overwhelming burden to everyone, isolated and alone (even if the room is filled with 20 people) and misunderstood, they would rather not be on this earth for one more second of pain or one more feeling of being dismissed by a friend or loved one.  That emotional pain alone when one’s suffering is dismissed; as if we are over-reacting to a common cold; could and has triggered people in pain to start planning their demise, as it is too much for them in their broken mind and body to fight anymore.  Death, in their mind, however wrong one deems that thought process; is what they are contemplating.  If you think this is reaching; just read through posts in some of your or your loved one’s support groups.

Daily, I see people tell people they never met, that they “can’t handle it anymore”, “I just want to end it”.  Keep in mind, if you look at their FB page, or Twitter, or recall a recent phone call, most would have just said or posted on how great their day was.  “I am fine.”  It’s a farce, which most of us continue to do; as to not upset our family or friends with our true feelings and pain, or to not be honest with people we actually know because we’ve been dismissed too many times and are broken to the point that some knowingly make a decision to NEVER again speak to a loved one, hug a family member; and even their own children; as their mind has told them it’s easier to die than live.

 

How sad is that?  Are they selfish?  When people take their lives due to pain, any type of pain; they cannot comprehend the ramifications other than they no longer will have pain.  So completely torn down, the thought their child will lose their parent, is not strong enough to stop them.  How in the hell is our society missing this?  How are family and friends missing this?   How are people in pain getting to this point?  Whether it be lack of treatment, lack of cure, lack of support or the mind games played out in your head when your pain takes over your life; it must, meaning right now, start being addressed.  

Are you thinking your life is not worth it anymore?  Well, it is.  You don’t see it, but others do.  And I beg anyone reading this, to reach out to someone. I can almost guarantee these thoughts have gradually entered the minds of your loved one who experiences 24/7 pain; not remembering a day without it.  And if someone asks you, be honest.  I have uttered the words I’m fine for the majority of my life; over half of which has been in chronic pain.  I hid so many things from even my family; out of pride and factors which stem from my childhood, some of my own family do not believe I am in such a state of despair and pain; broken down with a tired soul and body that feels useless.  I hid for too long.  Yes, it’s my fault for putting on the mask.  I was and at times still very good at it.   A habit very hard to break.

It’s natural for me to pretend I am okay; for I’ve done it all my life in one way or another just like most of humanity in some aspect.  However, I am removing it now and so should you.   This does not give us the right to become an un-consolable hot mess of a person; but it does give us power to deal with what is behind the mask; our true selves.  It certainly will not be easy, but how worn out are you right now reading this?   My soul is tired and there is no amount of sleep in which can awaken it.

 

“Live without living?”  What does that mean?  If you ask that question, you have yet to comprehend how our minds work; how we feel & what this has done to us.  Or better said, what it has done with the person we once were.  The reason I; we’ve gone dim.   We strive to live better and we do anything and everything to get there.  Find relief, find a new normal, find peace, find understanding, find faith, find God, find a way; find ourselves.  I am trying and I have resorted to begging at times just to get a doctor to listen to me.   Most ignore it; but I’ve been lucky to find one that listened; one who upheld his oath.   One who has promised to help me find a way, a new normal, and a treatment in which I can maybe, just maybe, have a chance at finding myself again.  I don’t trust many, but trusted him and have for over 10 years.  Due to this trust and mutual respect between a doctor and a patient, I have a chance; a slight flicker of light in my dim world which I am grasping onto so tight, if I were to let go I feel as if I would crumble; again.

 

You see, although I’ve gone dim like many of you reading this, I also found HOPE and it was due to raising some hell and advocating for myself and not shutting up when I was told NO.  I kept going, I kept calling, I kept writing; I kept fighting.  I am still dim, but I have seen the flicker of light; that same light which could let “My Soul Shine”.  I don’t know if it will, but I’ll be damned if I’m not going to try.  I deserve it; as do you.

 

I started writing this 8 months ago.  When I started, I was in my darkest times.  I thought about deleting those parts; but that would be me lying to you, and again, as life has taught me, continue to pretend I am okay when I am not.   So I hope when you started reading, you felt you were no longer alone in the pain, the dark thoughts, the hopelessness, sadness and you knew, in your heart and soul, there are others like you.  And as you read on, you found understanding, a bond with someone you probably will never meet.  A bond due to pain, no one wants, but one everyone needs so they don’t feel alone and don’t ever think tomorrow is not worth waking up to.

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I’m honored to share this project by chronic illness activist, guest writer Cammie LaValle, featured for CRPS/RSD Awareness Month. She’s not only a personal friend I met in the chronic pain community, but she’s a personal inspiration to me as well as so many others. She leads the charge in fighting campaigns for chronic pain and rare disease causes with the tenacity like none I’ve seen before, whilst attacking her disease with the same vigor. I’m proud to be in the same warrior club with a woman like Cammie, as I have learned much from her. Read more RSD/CRPS articles, see art projects, poems, and survival stories here.
Thank you for visiting and sharing -Mary
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Author Interview & Book Giveaway! But God, wouldn’t I be more useful to You if I were Healthy?

Thank you, Esther Smith for joining us to discuss your brand new book, “But God, wouldn’t I be more useful to you if I were healthy?” Congratulations on being Amazon’s #1 hot new release in Christian Counseling and Recovery in your first week as a published author! Let’s jump in and talk more about your book!
But God wouldn't I be more useful to you if I were healthy Abodyofhope Interview with Author Esther Smith

1.    Did you do anything special to celebrate the release of your first book? ~or~ How did you reward yourself when you completed writing “But God, wouldn’t I be more useful to you if I were healthy?”

The night my book was released I celebrated with dark chocolate and a glass of red wine. My favorite indulgence. I am hoping to get out to my favorite restaurant this month, and that will definitely be a part of the celebration. To me celebration equals all of my favorite foods!

2.    Aside from writing, how do you enjoy spending your free time? (hobbies/activities)

I have had a hard time coming up with hobbies I enjoy since chronic pain became a part of my life, which is one of the reasons I turned to writing in my free time. But, I do enjoy reading, lying out at the local pool, and cooking delicious recipes.

3.    How would you describe your personal writing process? (Are you research-driven, methodical, intuitive, spiritually motivated, etc. Please explain).

 For me, writing typically looks like sitting down with an empty head and writing about a topic that is important to me without much prior thought. Oftentimes, I don’t know what I think about a particular topic until I put it into words on paper. It is the act of typing and writing freely without restraint that brings me to my best ideas. Then I come back later with research, additional stories, and more attention to detail. Those final changes are important, but it is the original brainstorming that gives life to my words.

4.    Thus far, what is your favorite aspect of becoming a published author? (designing the cover of your book, the writing process itself, doing interviews like these, etc.)

 I have loved hearing feedback from readers. It is the best feeling in the world when someone tells me that my book helped them in some way or that they were challenged to think differently by something that I wrote.

What is your least favorite aspect of becoming a published author? (the editing process, marketing, doing interviews like these, etc.)

I greatly dislike wearing all of the hats in the publishing process. I was not able to pay for help for any part of my book, so I edited it myself, though I am far from an editor. I also designed the book cover, though design is not my strong point. I would much prefer to focus on my strengths and get help with the rest. 

5.    “Resting as an act of faith” is one part of your book I felt was particularly inspired, and is wisdom that both well and chronically ill individuals can benefit from. Can you explain what in your own life lead you to write about resting by faith?  

For so long I tried to maintain the same life I had always lived even though chronic pain made this difficult. I became burned out, and my health started to regress because I was doing more than my body could handle. I maintained all my responsibilities because I felt guilty about giving them up. But I finally realized that letting go of what was physically harmful to my body was not something to feel guilty about. I realized that I was not stewarding my body well, and that being faithful with the body I had been given meant letting go of things that were good but harmful to me. It was a freeing realization and allowed me to better serve in the areas that I didn’t give up.

6.    One of your readers, Ginny asks: Did you have any hesitation in sharing the personal thoughts expressed in your book? (she adds that she can’t wait for your next book!)

Yes! My book was more personal than much of my blog. I poured out some of my deepest fears and failures. Releasing the book left me feeling so vulnerable. But hearing readers say that they could relate helped a lot. It all felt worth it in the end.

7.    Blog follower, Max asks: What was your greatest challenge in writing this book?

 
 For a long time, I had the basis of good material and important points that I wanted to convey, but I didn’t know how to make it interesting. Like I mentioned before, I did have hesitation about sharing personal thoughts and stories, so I left those out at first. As I read through my material and shared it with a few close friends, I could tell that the material was dry. Perhaps I was making good points, but what good was that if no one wanted to read it in the end? My greatest challenge was growing in my ability to write content that had solid ideas conveyed through interesting stories.

8.    Because I follow your blog LifeinSlowMotionblog.com, I know that you live with chronic pain. How has Chronic Pain influenced you or inspired you to write more often, or has it?

Before chronic pain, I would not have called myself a writer. It was chronic pain that gave me something important to write about. As I looked for answers to my own questions, I found limited resources on chronic pain from a Christian perspective. Many of the resources I did find were either lacking in depth or didn’t seem to understand the actual experience of chronic pain. As both a Christian counselor and an individual with chronic pain, I felt able to address the topic with both depth and insight. If not me, who else would do it? That is what led me to writing.

9. “Giving out of a poverty of health” was one of my favorite pieces of wisdom you shared in your book. Can you give a brief example (or explanation) of giving from a poverty of health?

 At one point my health regressed to where I could only work at my job as a counselor 2-4 hours a week. And even that felt almost impossible to maintain. I would go in every Wednesday to see as few as one or two counselees and then drag myself home. It felt ridiculous to work so little, and I seriously considered quitting my job. I am so glad I didn’t. My one or two counselees mattered. I may not have counseled a great number of individuals, but I did my best with the few I had. 

10.    Can you give us a hint of the focus of your next book?

 I am going back and forth between a few different ideas. The next book in the Chronic Pain and the Christian Life series may be about mourning and grief in the context of pain and illness. Or, it may be about communicating our pain and relationships with others. I also want to write about the shame of chronic pain at some point. Too many ideas and too little time! But, I am working towards the next one coming out this fall.
 

~Reader Reviews~
“This is the first book of its kind: reconciling faith with illness.”
“It’s a wonderful book, it is most encouraging and well written. It’s an excellent read for both sufferers of chronic pain and the people who care for them.”
-Nancy Belz
“I love her honesty and the reflection questions that conclude this wonderful book- I found insight- comfort- motivation, and hope in Esther Smith’s sharing. This would be a great book for a small group study in person or online!”
-Ginny Law

How to win a free signed copy or e-book?
To participate in the random book give-away drawing, in the comments section below, let us know:
1. Where you found the link to this interview
2. Tell us where on social media you are sharing this link
I will contact the winner Friday, Aug. 5th! Good luck, and thank you for reading!

 

But God, Wouldn’t I be More Useful to You if I Were Healthy? is Available to purchase on Amazon in paperback or ebook.

You Know You’re a Spoonie When: fun list

I’m not Jeff Foxworthy but some things about being health impaired are so ridiculous, we might as well try to laugh. Here are a few I thought of along with some additions from my Spoonie friends. Please share yours in the comments section!

10,000 Spoons Poster

10,000 Spoons Poster

You Know You’re a Spoonie When:

-You have more cute socks and pajamas than sexy lingerie’ and heels.

-You are on a first name basis with all of the local pharmacists.

-Your family uses YOU as their excuse for getting out of things they don’t want to do with other people.

-If a stranger comes to your front door, you just hide until they go away.

-You have more salts in your bathroom than the DMV road crews in the winter.

-Your spouse/partner fills your meds for you as a romantic gesture of his/her affection (goodbye flowers!).

-You have become mysteriously artsy/crafty over time since diagnosis (was increased creativity one of your symptoms?).

-Your doctors and favorite nurses are on your Christmas card list.

-You know where all the elevators are wherever you go, yet somehow they always end up super far away from your actual destination (what is that about anyway??).

-Your pets seem to have a better understanding about how you are feeling than anyone else.

-Your loved ones have a favorite joke about your disability that makes you laugh. When they say it in public, people think your loved ones are horrible.

-You have more hair in your bed, in the drain, and in your brush today than is actually on your head!

-You start to talk to your Spoonie friends online more than you talk to your friends and family.

-You’ve learned so much about medicine that your doctors talk to you like a colleague instead of a patient.

-You’ve developed heightened super-sonic senses. You’re sure you are a super hero and keep looking for a lit up spoon signal outside. (To the sick cave!)

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From my Spoonie friends: You know you’re a Spoonie When…

-All the people who work at the drug store and pharmacy know you and your family by name. -Molly Williams

-Whenever you are in public people stare. You are starting to get a complex that you have grown extremely good looking. inspired byLiving Life Beyond Disability

-You joke about going to see your “drug dealer” a.k.a. your pharmacist. -April Hughs

-When I rate my pain 1-10 and 7 means I’m having a GOOD day. -Keely Blackburn

-You know all the different medications and their side effects. -Julie Pierpoint

-You have to bite your tongue when a friend keeps complaining about his/her allergies. inspired bySick and Sick of it

-You talk to your doctors, nurses, and pharmacists more than you talk to your own family! -Allisin Wonderland Hatfield

-Your deaf and blind dog thinks your crutches are trying to attack him! -Tegan Bert

-You go to hand your pharmacist the prescription card and she says “Nah, I remember you have one of those.” -Christine Brannon-Miles

-You make fun of the television commercials about medications that “help” symptoms like yours. inspired byMy Fibrotastic Life

-When your mum says you will never get a flu because all of your meds will probably knock it out of your system first. -Marika Dolinski

-You use ferocious animals and monsters to represent your illness. –inspired by Elle and the Auto Gnome

-You are so tired of explaining what’s wrong with you that when anyone asks, you distract them by responding: “where did you get your hair cut?” or “do you garden?” -Melanie Barker

What are yours?

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10,000 Spoons Poster

10,000 Spoons Poster

If you enjoyed the above poster or want to know what a “Spoonie” is, read the article it was based on: “10,000 Spoons, If Only! Why the Chronically Ill Love Spoons”

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This was featured on InvisibleIllnessWeek.com!

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