As you recover from the holiday, reflect on the many ways we can exhibit and appreciate strength and bravery.
My favorite television shows include passionate, strong female characters. I enjoy watching the shows because they convey that women can accomplish pretty much anything. And I love that. Oftentimes, the characters barrel into a room during a crisis and boldly tell other people why their cause is important. These women solve problems with their strong convictions and unwavering determination. When I watch these shows, I imagine myself as one of the heroines. I want to solve injustices as quickly as these women, even though I know most problems worth solving take much more than just a passionate speech.
For years, I wished to become someone I would consider courageous. I wanted to be able to convey my convictions by using my words. I hoped that I could get respect by following the formula for strength that I’d seen in television shows. But over the past few weeks, I’ve had a…
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Part I of II – By guestwriter Cammie LaValle
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.
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
November is buzzing with creativity among writers, bloggers, and in social media sharing as well; I want to take a beat to discuss a few of the exciting projects I know to be converging this month.
“NaNoWriMo” or National Novel Writing Month is kicking off today! Writers have been preparing, and now the task is at hand to compile a 50,000 word book in 30 days. Can you imagine the focus, commitment and creativity that requires? For anyone who is in the midst of writing a novel this month, I wish you the very best! If you are participating in NaNoWriMo or have in years past, please comment and drop us a message sharing a bit about your experience.
In the blogosphere, November is known as NaBloPoMo (National Blog Posting Month). Every day of the month, many bloggers will update their blogs daily instead of weekly or monthly. Keeping up interesting daily content with images, links, and maintaining visitor interaction is quite a challenge! Please support and share your favorite blogs during the month of November. If you are blogging this month, comment below to let us know where we can follow you, and what you tend to write about.
Gratitude writing challenges are popular with writers as well as on social media to celebrate Thanksgiving #NaNoPoblano. Whether it’s November or any month of the year, any project that encourages one to practice thankfulness is positive. Do you believe gratitude challenges create more overall gratitude year ‘round? Are you participating in a grateful challenge this month?
In my social networking community and blogroll, November is always Complex Regional Pain Syndrome/RSD Awareness Month. Many of my Chronic Pain friends are taking part in daily photo challenges, sharing daily facts and writing about their personal journeys with CRPS, creating infografics, and organizing community educational events. November 7th is Color the World Orange day, where we wear orange in support of the estimated 100 million suffering with daily pain diseases. I would love to invite you to wear orange on November 7th to help educate your community on chronic pain.
I am inviting anyone with chronic pain and chronic illness to email me at email@example.com to share an aspect of your personal story. All of the CRPS/RSD stories shared during this month will be linked under the category RSD/CRPS in my categories drop down menu.
There are other important events in November like: Cancer Awareness Month (MoVember), Epilepsy Awareness, Alzheimer’s Awareness, National Caregiver’s Awareness Month, and November 13th is Caregiver Appreciation Day.
Whether you are a writer, a reader, a patient advocate, 0r showing your appreciation this month, I wish you: Passion, Growth, Gratitude, and Perseverance.
If you are participating in a writing challenge or an artistic group project this month that I did not mention, please do share in the comments section!
I just want to remind you of something that may have slipped your mind this morning, or this week, or this month since the seasons of life are changing and the colder months can cast a darker, colder shadow at times.
Each morning, you might want to start fresh, and leave the past behind you, right? But please, friend, don’t forget everything you’ve overcome.
Don’t forget the challenges which seemed impossible…when you said “there is no way I can get through this” but you did, and you are. Don’t ever forget.
Don’t forget when you ran out of every last molecule of energy you had left to give, and you had no idea how you would keep going another moment longer…. but instead of giving up, you found something else inside of you that carried you forward. Don’t forget that driving force within you.
Don’t forget when you had experienced all of the torture you thought you could shoulder. Don’t forget when heartbreak, physical pain, and sleepless nights pushed you past your breaking point. You said, “I can’t endure this nightmare for one more moment.”
Remember when you were ready to forget it all?
How are you still here after everything you’ve been through?
Don’t forget how you made it!
Don’t forget that force inside of you that begins when you’ve reached the end of yourself.
As seasons change, as life continues to surprise you, carry yourself as the OVERCOMER you are.
Links to the featured artist: The Last Sparrow (artistic home furnishings on Etsy), Follow Voilet D’Art on Flickr, Twitter
In the face of pain, heartbreak, and crisis, most of us don’t know how to react or respond. We want to be an encouragement, we want to comfort, we want to relate in some way…
“Life will break you.
Nobody can protect you from that,
and living alone won’t either,
for solitude will also break you with its yearning.
You have to love.
You have to feel.
It is the reason you are here on earth.
You are here to risk your heart.
You are here to be swallowed up.
And when it happens that you are broken,
or betrayed, or left, or hurt,
or death brushes near,
let yourself sit by an apple tree
and listen to the apples falling all around you in heaps,
wasting their sweetness.
Tell yourself you tasted as many as you could.”
Think of the nervous system like a boombox up on your shoulder, 80’s style, playing sweet jams at all times. When the body is healthy, balanced, and running smoothly, the music playing from your system’s radio station are your favorite hits at the perfect volume, and your drop-in harmonies are totally on point.
When the nervous system is out of sync, those beats flowing from your station are tragic- like the song you hate most, on the loudest setting, playing over and over again. You can’t change the station, no matter what lengths you go to!
When you have a chronic neurological condition like Parkinson’s, Multiple Sclerosis, Complex Regional Pain Syndrome, or Postural Orthostatic Tachycardia Syndrome for example, it’s as though someone traded out your cool retro stereo system for an old broken down radio. You can play records on it sometimes, and it’s AMAZING to listen to any music again when you’re not in a flare or a relapse, but even then, all the records have scratches on them, so the music is constantly skipping and warped. The stereo’s wiring gets so bad over time that the record player doesn’t work anymore, and your radio only receives static.
A chronically malfunctioning nervous system is like listening to a broken radio stuck on static at full volume constantly.
When the “music” or the nervous system’s wiring is flowing properly from the brain throughout the body, pain receptors react to appropriate painful stimuli, telling us when there is a problem, and the pain subsides when the problem is resolved. When we have “faulty wiring” we may experience hypersensitivity to touch, sound, light or even smells so intense that it can cause a severely painful reaction. Think of raw wires on the end of electronics sparking and flaming just to the slightest touch.
The malfunctioning nervous system might react to normal stimulus with severe increased pain, increased stress may cause a seizure, or in others severe tremors and body spasms may occur. For some with POTS, (Postural Orthostatic Tachycardia Syndrome), a loud noise or changing positions can cause the body to completely check out, going into fight or flight mode, and beginning to pass out, or passing out completely.
Going back to the stereo analogy, imagine being invited to a party where the DJ had a broken stereo system, playing static on blast or his stereo catching fire in front of everyone. That’s exactly what it’s like to live with a chronic neurological disease…well, sort of.
Meditation, spirituality, organized religion, trying to improve sleep, and other stress reducing efforts are ways we try to turn down the knob on the stereo. Medications, alternative therapies, eating well, surrounding ourselves with positive support are all ways we can continue turning the knob down little by little. The static kicks out on full blast each day, and we use our tools to adjust or manage the incoming noise levels. We may not have the ability to turn the station away from the blaring static and back to music, but we can attempt to turn the volume down so it isn’t blasting constantly every day.
Invasive and surgical approaches to treating neurological diseases are like kicking the side of your stereo to try to get it to work again. Jolting it hard enough may coax the system to finally play music once again, or you might kick it so hard that you completely break your stereo. For many, surgery and invasive treatments are worth a risk of causing additional problems for the possibility of returning to good health and functioning.
That’s my super-scientific explanation of the nervous system, and how it’s exactly like a boom box. So…. this analogy might not end up in a medical school text book, but if it helped anyone better understand an aspect of neurological disease, or put a smile on your face, then virtual high fives all around!