Part I of II- By guest writer Cammie LaValle, 2016
Remember that light inside of you that used to shine? We reminisce about it in our heads; back 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, is now 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. Talk to others with CRPS/RSD here. Article originally published in 2016.
Thank you for visiting and sharing, -Mary
You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future, or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do.
It doesn’t make it any less horrible to know that 100 million Americans with chronic pain feel this way, but it may help in some way to remember that your feelings are normal.
Illness, pain, long-suffering literally deprives the brain of the chemicals and hormones required to feel happiness and at peace. It’s not pain or illness alone that causes depression, but the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like serotonin, oxytocin, and dopamine are no longer in balance to counter feelings like uselnessness, loneliness, fear, and hopelessness. What might have been a passing thought, thanks to the rigors of chronic illness, can become a spiraling pit of despair. Pain wriggles into your very soul, and drains you of every resource.
This month is my 13 year anniversary with chronic pain (RSD/CRPS). When I became very ill 6 yrs ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness swallowed me up.
If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?
I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked.
You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.
You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing.
If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll go on another day, the pain might be pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (P.S. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness.
There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make HOPE become your weapon of choice.
As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”
-Marion Zimmer Bradley
Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.
It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.
When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans.
My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch.
No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals.
I was in control.
Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path.
Surrender is a difficult topic or act for most of us to comprehend.
I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?
Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course.
“Do you want to do this yourself?” a nurse once snapped at me.
Oops, I thought. But then…I knew my answer would have been, “yes.”
Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind?
Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.
They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.”
Illness can become your life if survival becomes your new goal.
There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes.
Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.
I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness.
The world tells me to push, to fight, to Just. Keep. Going.
But I learn quickly that there is no push in this game. Only tricks, and cheats, and strategy.
It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.
Illness owns my body.
There is no free will flesh. There is no- push for one more minute. There is no- if I just take this pill.
This body has been exchanged, kidnapped, swapped for a rag doll.
Once, asking for help seemed an impossible exception only made in the most dire of circumstances.
Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this?
What better picture of grace?
Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray.
Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.
My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.
God is in control, they say. They say it like an empty cliche.
Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior.
In this broken body, I see freedom.
(Re-posted from 2015)
We should all have a calling, right? A passion that drives us. “If you find your purpose, you will never work a day in your life”, and will be wonderfully successful, respected, admired, and make loads of money. At least, that’s what I’ve always heard, so it must be true.
What if I told you that having a “Life’s Purpose” is a myth.
We are taught by society, and modern culture that to be fulfilled, we have to find our one special calling, that career we love, and it will bring us prosperity and fortune all of our days.
Why is this philosophy problematic?
…Because we aren’t built to have only one purpose. We are each meant to fulfill many unique and diverse missions throughout our lives. We have dreams and goals for ourselves, but we are multidimensional beings and our greatest life passions and fulfillments may or may not be wrapped up in that job we desire.
Most of the time when we say, “What is God’s will for my life?” We are referring to our careers, right? But God allows purpose to thrive in so many aspects of our lives.
You can be a passionate artist, a wife, mother, doctor, friend, AND a passionate writer. You can find calling, drive, and fulfillment in multiple areas of your life.
The world hands us such an impossible task of figuring out our one and only sparkling, unicorn reason for existing, and it puts sooooo much pressure on all of us. Once we believe we’ve found our “life’s calling”, complete our degrees or training, we can finally pour our passion into the work… but some time later, there’s an itch that comes over us. We feel unsettled, maybe even claustrophobic. If you’ve felt this way before, it’s miserable. And it’s also a huge disappointment that the dream we wished for doesn’t feel like we hoped it would. You do everything you can to refresh that passion you once had in your work, however, more than likely, the feeling of displacement whittles away at your spirit.
A Life’s Purpose is not the same as a Life of Purpose.
We were not built to stay in one place. God has so many plans for each of us. Some of us are amazing multi-taskers, juggling projects and people all at once, and others of us pour everything we have into one job, person, or other undertaking, and then we are diverted to our next chapters. One season ends, and the next begins. Sometimes there are painful seasons in between for our growth, for pruning, and for us to prepare for whatever we are meant to do next. And for some of us, those painful seasons last, so we seek out purpose and meaning in the big and small moments.
Callings come in seasons. We all hear the stories again and again: Someone had a career they loved, then a crisis struck, but that sideroad somehow illuminated a new and exciting path. It happens all the time.
Like me, you might be asking, “What is God’s will for my life now?” You might feel a little bit lost in the fog, the upside-down, so to speak. Very rarely, we have these beautiful gifts of some extended time when we are just waiting to find out- what’s next? It can seem like forever, but rest assured, you are never forgotten by your Creator.
I’m not very good at being still and peaceful while I wait, because I am so impatient. It is such a comfort to know, we are always fulfilling our Life’s Purpose when our desire is to please God. When you’re seeking to do the next right thing, you can be at ease that you are living inside of your destiny.
Living with constant chronic pain or chronic illness is no party, but you may have been invited to a few this holiday season. Here are some ideas and tips to help you make it through the festivities as we approach the new year.
1. No Cocktails
I know, I know, at your next party, you may be thinking:
“Ughh, why did I come? How do I even get comfortable in this chair? At least I’m not squished on the couch. Did anyone notice that full body spasm? Oh great. And now my hands are shaking. Better put my drink down before I spill it. At least it isn’t red wine. Of course not, because wine is a trigger food and 8 of 10 of my medications don’t party well with alcohol.”
See, isn’t this fiesta turning out to be fun?! But don’t worry about the NO DRINKING POLICY. Your brain fog keeps you so fuzzy and clumsy on a regular basis that you’ll fit right in with your drunk buddies!
2. Polite Conversation
Look at all of those healthy attractive people around you playing ping pong with their witty dialogue. “Hmmm? What? Oh, no that’s not a fashion statement. That’s called a compression sock. Thank you so much for noticing. Yes, those are my favorite shoes…I guess. I know, I always wear them, don’t I? Ha, ha. You are so observant. You know, you should really go bird watching sometime- I hear that is a great hobby for people who enjoy staring.”
See, you can play this game of witt too. What a wonderful party!
When in doubt, smile.
Always keep them guessing. When your pain is on red alert and your brain is on complete shutdown, SMILE!
It tells people that they can relax and have a great time no matter how sick you are. You can always go to the ER later, tonight is for celebrating!
So flash those pearly whites and watch your friends dance, karaoke, tell work-related stories, and get jiggy. They’ll remember you being a sweet, saint-like creature, and little did they know you were just half-conscious from pain. Talk about a party trick!
Nope, parties just aren’t as fun as they used to be. And please don’t go around asking people what I USED to do at parties… (seriously, don’t). But it’s still great to get out and make memories whenever we are able. And when you are not able, know the party won’t be the same without you.
Merry Christmas, happy holidays!
This is one of my favorite pieces I published in 2014. A snarky spin on the old Emily Post / “Miss Manners” columns from the 1950’s.
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!
As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives “will some day be of use.”
I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!
I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.
We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My personal peace rests in God, a relationship which has grown inside of my own tsunami.
This message of purpose is one I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again.
This is my pride speaking!
In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?
The next time someone reminds you that all the pain and struggles you are battling will be worth “something” some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness is not a waste.
I don’t believe we have to wait until we’re perfect for our lives to have value. If that’s true, then I guess we will all be waiting forever!
Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.
It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.
We greatly undervalue the quiet connections, asking others how they are and actually listening in return, sending a note by mail to a struggling friend, or letting someone know they’ve been in your prayers.
Society does not measure these acts as successes, but what if you redefine what success means in your life? You may have very little energy to spare, but what you have to share is precious.
I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing trials?
It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.
What is the difference between positive thinking and healthy coping?
“Keep thinking positively!”
“Keep your chin up!”
These are very common cliche responses we hear from society as individuals with ongoing health difficulties. They aren’t incorrect responses, but when those responding seem to believe this is truly how we handle the horrible pain/illness, terrifying future of further health concerns, and crushing regular losses which all come with long-term illness, then encouraging “positive thinking” alone can have quite a negative fallout.
For example, if one is in severe pain (meaning pain worse than a fracture or pain worse than childbirth, but constant, daily, and indefinite) after years, with treatments only failing, and close friends continue to say, “stay positive” as their only source of inspiration, will those words be uplifting over time? No, the attempt at encouragement over time will add to your feelings of isolation, making you feel increasingly deflated, rather than the intention of making you feel more positive, optimistic, and empowered.
Would you say, “suck it up” to a friend who is grieving over the loss of a parent? I certainly hope not. Essentially, this is the idea surrounding “positive thinking.” The concept that the more we “suck it up,” the better off we will be, and the stronger we are.
PS, Our bodies work exactly the opposite of this construct.
The more we avoid pain, the more we distract ourselves from our true emotions (not negative emotions, but real emotions), the more likely our bodies are to feel the stress fallout and rage against us. One with a chronic disease would do well to minimize stress; we know this from immense research (and I can tell you this from my own personal research on chronic pain and chronic illness!).
Minimizing stress is not equal to avoiding difficult emotions or distracting from pain. We have to face our pain and emotions, recognize them, meet them, and accompany them through our lives. They won’t allow us to abandon them, and we know that trying to do so only causes added difficulty down the road.
In Positive Thinking, saying “sure, I’m doing fine” may make others more comfortable temporarily, but it is not necessarily “healthy” for you or for the relationship. Positive Thinking encourages us to become more closed off, in turn others also allow more distance to grow until the relationship diminishes. They realize everything is far from “fine” but both take part in a ritual of pretending everything is wonderful because it’s far more comfortable than confronting the reality.
“Healthy coping… differs from the popular notion of “positive thinking.” It implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always “keep a positive out-look.”25 “Positive thinking” may represent an attempt to avoid confronting the distress of chronic illness, and doctors who care for these patients and their families are not immune to such patterns of coping.” Quote from a study in -Emotional Demensions of Chronic Disease
So often during the course of chronic disease, we have to make choices between the temporary comfort of others, and protecting our own welfare. Regularly, our bodies make that decision for us and force us to miss out. Especially then, healthy coping is paramount! It helps us re-gain some footing again. The openness in healthy coping encourages sharing, allowing others around you to understand where you are, what happened in the situation, how they might play a role in being there for you, and how you can be there for them. It lets others know you aren’t too fragile to listen to them and what they are going through, either. Most likely, those around you are feeling helpless, and would like to be there for you, but don’t know how- or how to ask. Being specific in our needs can help us find our own voice, and being more open also can help others who care about us join in on our “support team.”
Fair warning, most will not know how to respond appropriately, but you may be surprised who is game to see how they can be there for you in big or small ways. In being more open, you may also find that your example sets off a chain reaction in others to become more open with you in how they are doing as well. Healthy coping is so much more contagious than positive thinking, because it encourages support, connection, and community!
Isn’t positive thinking the same as optimism? No. Optimism has more to do with responsibility, letting go of guilt, and looking to the past, present and future without seeing yourself as a burden. I recommend reading the book, Learned Optimism by Martin Seligman.
Healthy Coping differs from Positive Thinking in that healthy coping requires us to lean into our feelings- both physically and mentally. Checking in with ourselves periodically, and then making minor adjustments to our lives to course correct for better balance. This may mean you need more rest, more exercise, more time with friends, another visit to a doctor, see a psychologist, open up to a good friend, eat differently, spend more time focused on your spiritual life, take better care of yourself, etc. Chronic illness requires us to make these adjustments frequently instead of thinking everything is going to work itself out until the ignored symptoms or stress build up. Healthy Coping may be the more deliberate, mindful path, but it is the path of self care instead of conveying a false smile.
To start making these adjustments, we can ask, “How are you?” instead of “Are you ok?” A yes or no question forces us to choose only negative or positive, however, healthy coping encourages others to share and touch base with one another and ourselves- this is how support and compassion are built. We don’t have to choose sides in healthy coping. Try not to think of your days as being good or bad, black or white, suffering or overcoming, but instead- working to find balance every day, always learning from your body and those around you, and doing the best you can now, in this moment.
Dear State Representative,
Myself and my family are very excited about all of the things you are doing to support those with disabilities. My father heard you speak on the issues of pain medication and addiction, and trying to find common ground so both pain diseases and addiction disease can be treated simultaneously. That is a stance we in the chronic pain community are very excited to hear and support you in that!
In case you did not know about this newly proposed opioid tax, I wanted to give you a little information.
It is proposed that opioid pain medication will be taxed one cent per milligram to fund treatments for addiction.
As you can imagine, those with chronic pain diseases like Lupus, Multiple Sclerosis, CRPS/RSD, Fibromyalgia, or post-cancer pain would be paying for addiction treatments while those with addiction will just buy their drugs illegally instead of paying a raised price from the pharmacy.
Because this tax proposed is “per milligram,” those suffering with the most severe, most debilitating cases of degenerative neurological pain will likely have the most un-affordable pharmaceutical pain management care, as our doses are typically higher, as you might imagine.
As I am a newly single woman, more recently on disability, I know that the government works hard to keep drug prices low for those with disabilities. A tax will only make pain medication more un-affordable for those who are spending all of their funds on medical care as is. If this tax is passed on pain medication, it will begin a precedent to tax other RX drugs. It’s one cent now, but it won’t stop there.
Since the CDC’s federal guidelines on opioid control, chronic pain patients are struggling to find pain management care with good pain doctors who are not afraid to treat us. Deaths and overdoses continue to rise. Deaths of people in pain, who are without treatment, and deaths from those who are addicts, continuing to overdose. The guidelines do not work! The tax will not work either.
Again, pain patients are being forced to pay for a disease (addiction) which is not our own. The tax would exclude hospice patients, but what about pain patients who are bedbound like myself? What about those of us who have tried every treatment available and medication therapy is the only option that doesn’t worsen our conditions? What about those trying to maintain a somewhat functional life through chronic pain, and to keep off of permanent disability, taking medications is the only way to continue working and participating in family life?
Medical treatments should never be a punishment. Is this a “sin” tax? Am I sinning? Why should I be ashamed of having an illness I didn’t choose? I am alive in part because of my medications, and so are many, many people! That is nothing to be ashamed of.
Will diabetic medications be taxed to help treat cancer? Maybe Methadone, Suboxone, and Narcan (addiction medications) could be taxed to pay for chronic pain treatment facilities! We are certainly in need of those.
Thank you for using your platform to speak for people like myself.
Please do write your representative today, so a ludicrous tax like this would never get passed. No time to waste!