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)
Sometimes I feel as though I’ve slipped into an alternate dimension. Like there’s another version of me living simultaneously while I live my own life. She’s the same age. Her appearance is relatively the same. But somewhere along my lifeline, she and I took different paths. I am living out this fate, and she is living out another.
I’ve always tried to steer clear of asking what if. It never seems to serve any purpose other than cause unneeded longing and regret. But, after the last few years, and all of the sudden changes, my mind is sputtering to catch up. I’m left with the feeling of… displacement. This what if exercise is definitely risk to me emotionally. If played out fully, I hope it will help me sweep the shattered bits back over into my dustpan.
This past year, I can’t help but feel as though I’m in the wrong life. I can’t shake it.
I imagine what another version of life might be now. I dive into the best and worst of my soul twin, and play out her footsteps.
I sort through the details of her life. There is hurt, longing, and regret of unfulfilled dreams that come along with playing out these fantasies. I’m afraid of going through the looking glass. How deeply will this cut me? But in the end, I hope the exercise will help in some way.
It’s like the movie Sliding Doors; I imagine myself making one different choice and living out my life in a parallel universe.
In one reality, I’m still married. I never fell down those stairs in 2004, we had 2 amazing children, and I have the career in psychology I once hoped for. In this reality, I’m just as outgoing, adventurous and fun-loving as I was at 20. This version of me loves her work, she loves helping people in new and experimental ways, and if she ever finds time, she hopes to write a book about her work some day. I imagine her life busily driving her children to baseball and soccer, standing back stage smiling at ballet recitals, and taking pictures at music festivals with her beautiful family. She loves her children and husband unconditionally, they have a house filled with laughter, and they show her love and affection in return. Every couple months she sells handmade jewelry at an art fair- this is when she feels most like herself. Even though she counsels others effectively, she never had time to resolve the issues from her own childhood, and it shows now in her behavior with her/my parents. She empathizes well with her patients, but she doesn’t understand their suffering, and is frustrated when she can’t fix their problems. Her family stopped going to church and volunteering together- she deeply regrets that for her kids.
Maybe I chose differently after high school graduation, and followed my dream of aid and mission work. Another Mary has been living in a far-off village building wells and working with abused young women for several years. She has collected a different language for every country she has lived in, and always looks forward to her next project. She never married, and rarely regrets the decision to stay single and forgo becoming a mother. She is strong and healthy, but tired, and isn’t quite sure where home is anymore. She wishes she could fly back to the states each time a friend or family member asks her to come to their wedding, birthday…or hospital bedside. She lives a life most can’t understand, but she wouldn’t trade her life of service for anyone else’s.
There’s yet another version of me who never moved away from New York City. She stayed on the path to pursue an art career. This version of me has short, messy bleach blonde hair, and wears an old motorcycle jacket she stole from an ex boyfriend. She works at her friend’s bakery so she can pay her bills. This Mary struggles with depression, but the angst feeds her art so she doesn’t get help. The mental illness ruins her romantic relationships, so she’s lonely in a big city. She has a modest art following online, and has a large network of colorful friends who keep her very busy. She sings in an indie band for fun, writes art reviews for a small magazine, and volunteers teaching sewing classes to inner city youth on the weekends. In her heart, she hoped she would have found more success by now, but tries to remind herself, art isn’t about accolades.
I imagined my existence if I had been born into one of the many communities of the world where healthcare is nearly non-existent. Like most of the world, I wouldn’t have been born into priveledge, with affordable doctors nearby. I wouldn’t have had wholesome food to eat daily, and may have been exposed to the elements, civil war, and sexual acts of violence against girls. If I had developed the very same condition at 22, I wouldn’t be alive at 35. That version of me wouldn’t exist. I would have died a slow, painful death, like so many others with the same diseases that we in the US call “chronic,” and manage day to day, other parts of the world calls them “terminal”.
The door slides again. I step back through the wormhole.
I’m here in my life. In my own body. In my own bed. In my own reality. There is no other fate than mine. There is no other Mary.
This was a challenging, yet powerful exercise- but it did hurt. There were others I didn’t write about here. In the end, it was a success, I did shake off that alternate dimension feeling.
This is the life that was set aside for me. In all of the realities I could imagine, this is the only one where I’ve been molded, strengthened, and shaped to conquer my specific challenges. I am the person whose eyes are prepared to see unique beauty only I might see. I’ll leave only one set of footprints behind when I’m gone.
There is no wormhole I’ll ever slip into. No sliding door waiting for me to step through and merge into my rightful life.
I’m not entitled to any other existence.
This is my one and only life, with all of its shortcomings, pains, privileges, hopes, and unknown future.
It’s not over yet.
These are 2 self portraits expressing the neurological and autoimmune disease RSD, also known as Complex Regional Pain Syndrome.
There are those who wonder why those of us confined by pain and illness choose to continue a life suffering when all has been done, and there is not much more to do than to try to make us as comfortable as possible.
Most will never know as much torture as those who live with chronic neurological disease. But to be miserable, to be a victim in your spirit, that you must fight with every effort.
It may take all you have and more, but you are indeed needed in this world. Never, never give up.
Dear friend, never lose faith that your life purpose for being on this earth is so much more powerful than your pain.
I believe in a loving merciful God who lends strength when we get to the end of ours.
I fight to survive, to choose life every day when my body begs the opposite. I want to encourage you today to take on your battle in your own life.
Hugs gentle warrior.
Please share below how you continue to press on despite seemingly insurmountable challenges.
“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!
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 only peace is in God, a relationship which has grown inside of my own tsunami.
This is a message 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 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 isn’t a waste.
I don’t believe we must wait until we are perfect for our lives to have value. If that’s true, then 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 undervalue the quiet connections, asking others how they are and listening in return, sending a note by mail to a struggling friend, or letting someone know they have been in your prayers. Society does not measure these acts as successes, but what if you redefine success? 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 disease?
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.
I got a new working phone yesterday for my birthday! Woot woot!
I’m still playing around with it, but I have to say that it’s kind of stingy on the emoticons.
You don’t realize how far down the emoticon rabbit hole you’ve gone until all of those little faces are suddenly ripped from your life like a big yellow blur. (Insert sad face here)
Goodbye winky face: you helped me keep my foot out of my mouth so, so, so many times. (insert yikes face here) Now, I’ll have to rely on the ‘LOL’ to save me from myself.
Farewell Tear face: How will anyone know I’m sad? Words just don’t do what one little tear face can.
Mr. Smiley Face, I will miss you the most. Your good old classic “I’m smiling” demeanor may be overused, may at times be the inappropriate emoticon for people to utilize and get on my nerves (rolling eyes face), but you never get old. Keep on smiling, Mr. Smiley!
(Insert 2 laughing faces, winky, and blowing kiss face)
Yep, I would have nailed those emoticons (thumbs up symbol to myself).
Today was the second annual Disability Pride parade in NYC!
Here in this video you’ll see disabled individuals dancing together to commence the opening of the parade. This dance speaks to the nature of disability- the diverse disabilities we can see with our eyes, and those which are invisible.
As you watch the video, and think about some of the reasons for a parade like this…
Many who have declining health feel ashamed of their bodies, and in time, may also feel ashamed of themselves. Friends stop reaching out as health issues just sound like “drama” to most people who have never faced a health crisis. So many have been forced to leave behind a career, or dreams they once held dear. Although it sounds harsh, it’s not uncommon at all for family members to tease or bully as individuals change physically and/or mentally, leaving them extremely self conscious. People can be very judgmental of body shapes, walking aids, and challenges that are unfamiliar. Others are quick to call out what they see as “inconsistencies.” Even strangers in public call those in wheel chairs “liars” at times when they don’t understand that paralysis isn’t the only reason one might need the aid of wheels, or that a handicapped parking spot might be needed by someone who can walk normally.
It’s no wonder that people start to lose their self worth, and isolate themselves as a disability changes them.
You know what? FORGET EVERYONE!
So, this isn’t a news flash, but people don’t get it, and they don’t get you. You, my dear, have so much to be proud of, and SO MUCH to share with the world!
You are an over-comer, a warrior, a never-giving-up, wheel rolling, cane sporting, walker toting, re-inventing, hope finding, doing it anyway, sometimes invisible illness (but never invisible)- always working to conquer your challenges: BRAVE fighter! Heck yes you should be proud!!!
You don’t have to prove how much pain you’re in every day, how badly cancer changed your body, you don’t have to show your prosthetic, or tell anyone what your mental illness is… unless you want to. You are living proof of pure strength. You don’t have to work to be an inspiration to anyone, but hey- you already are, kiddo. You’re pretty spectacular just the way you are, in the body you have right now.
Please don’t keep your amazing self on lock down. You’re the only you this world will ever have! Heart (((hugs))) going out.
What do you think of the Disability Pride Parade? How are you #DisabilityProud in your own life?
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.