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Flow Like Water: Reflections on CRPS / RSD year 2- Guestpost by Rikki Smith

I Never thought You Could get a Disease From a Car wreck RSD CRPS

I never thought a car wreck that did damage to my elbow

would stop me from walking an entire year later.  I never thought you could get a disease from a car wreck.

I never thought I would have to depend on anyone else
to get me through tough times in my life.

I never thought I would face an uncertain future
without the ability to answer the tough questions.

I am by nature a very opinionated, strong minded, determined and focused individual. Having my life turned upside down by an unforeseen event is not in anyone’s plans of course, but, the thought of it was always something I thought I knew exactly how I’d handle as a ‘strong and independent woman’. Little did I know that my ultimate undoing would also be the one thing that allowed me to become more whole as a person.

Looking back on last year’s thoughts on how this disease impacted my life over the first year of learning to deal with it, I was already at a place of seeing the blessings that came with the pain and the horror. I make it a priority to find good in all things or at least as many as possible. I don’t believe things are one way or another in life. I believe that things are the way we interpret them to be. Our perception and reactions to life determine what we take from each instance and whether or not we count it a blessing or a curse or in this case admit it is equal parts of each.

There are still times where I try to convince myself that this is all a bad mistake and that I’m really ok (when I feel good it’s easier to lie to myself) and the pain was just a figment of my imagination trumped up by my brain somehow. I still have those moments or days of denial where I really do want to refuse to believe that I will have to deal with this for the rest of my life. There are also days where I think I have it under control and manageable and that I can handle it. I fool myself into thinking that I am the one in control, not the disease.

I am learning that there is more to it than drawing hard lines, coming up with definitive answers or even being able to list symptoms. Everything is so fluid and ever changing with CRPS. Life equilibrium. Balance has never been so important and never meant so much to me as it does now. I’m learning to live in a state of seeking my own level the same way that water does. When my pain levels are up, my activity levels go down and vice versa. When I am frustrated with my limitations, I find ways to realize the gains that they have brought me in my emotional life. My physical life has forced my emotional life to do some very large sacrificing….and what I thought was me becoming weaker is turning out to be me learning to become stronger.

You see….. when life begins to strip you down to your core and bend and stretch you to your breaking point, you have to adjust and adapt and learn new methods. There is more to it than that though. You can get caught in the label, in the diagnosis, in the symptoms, in the daily rigor of the battle and forget that you have a life to live beyond the disease. You can forget to choose to take in the beauty around you, to find new strengths, new outlets, new hobbies, new friends, new resources, new paths to use your talents on.  It is so easy to get stuck in the mud of the issues that come with CRPS/RSD….but we who have this disease have to learn to rise above and be water and flow and seek our own level.  We have to learn to live differently. Life may never look the same, but that doesn’t mean it cannot be beautiful, or full of adventures. It just means we have to change our definitions and more than that we have to push ourselves to make new expectations, focus our perceptions and define our interpretations in a way that helps us grow and find positive experiences in the struggles that we face.  If we don’t adapt we become stuck in that mud and the weight makes us feel like there is too much work involved in moving forward we become depressed and despondent because our expectations are still tied to our old life and our old abilities.  I’m learning now to flow, to adapt, to change my focus away from what life was, what I used to think, expect, want, etc so that I can still have dreams, still have goals, still accomplish things. Now I do so as part of a team, with the help of friends, family and loved ones. The disease brings its own challenges, but if we accept our lives are not determined by external circumstances, but rather by our mental approach, we can and we will triumph despite the challenges, no matter what they are. Rise to the top, find balance, seek your own level and don’t stay stuck in the mud. Make the choice to look for a new perspective.

I never look forward to the pains I know the next year might bring, but I do actually anticipate with high hopes the new horizons and the new vantage points that come on the other side of the valleys. I plan to enjoy my journey no matter what, for as long as possible!!!

~Rikki Smith

I am so honored to have Rikki as a guest writer for us 2 years running! I have revisited her post from last year “Broken Things can be Fixed” several times throughout this past year and it still chokes me up. She has so much wisdom, insight and vigor, it is easy to forget she is in her second year of Complex Regional Pain Syndrome. Thank you to Rikki for lending us your voice today and allowing us to share your end-of-year reflections on your ever-inspiring journey. Rikki has many hobbies including traveling with her family, uplifting others around her, and she has a passion for Celtic Mythology. Check out her fascinating Facebook page: Celtic Lore and Mythology.

To see more RSD/CRPS articles, artwork, and poetry, visit the Categories menu for “RSD/CRPS” or click here. 

Chronic Resilience and Learned Optimism

Learning Resilience and Optimism. Coping with chronic illness.

My sister manages a student property center near one of the best universities in the country. It is known that more students from that school will withdraw due to psychological breakdowns and will have more suicide attempts than any other area college. She has already had several incidents this year at her property alone that ended with students being checked into the hospital for said reasons. They are all the most elite academics, but now, they are in competition with one another. Once the valedictorian of his high school is currently struggling to pass his college courses. So why are even the best and brightest failing to cope with the pressures of life?

I’ve been reading the book Learned Optimism by Martin Seligman. There was an entire revolution in psychological treatment called “Positive Psychology” which began after he wrote this breakthrough book in 1990. Before that, psychological practices were geared toward treating mental illness. Seligman asks the question, why aren’t people fulfilled and thriving when we know more about human behavior than ever before? Now, psychologists and counselors help people to become more than just not-sick, but actually thrive.

In his book, Learned Optimism, he theorizes why there is more depression, anxiety, suicide, and drug addiction than ever before when we live in a happiness-driven society. He believes it is much, much more than public awareness of mental health driving diagnoses. Children were once taught how to overcome obstacles and persevere, but teaching practices have shifted to the current focus of boosting self-confidence regardless of efforts. He proposes that individuals of prior generations were raised to believe they were surrounded by various types of support, and that sense of community has been lost today. In the past, people realized that their support system shared responsibility for every success, failure, and overall person they became. Because there was an awareness that outside forces contributed to their lives, when their hard work paid off, they were sharing their triumphs; when they failed, they wouldn’t fall too far or stay down too long as they had a safety net.

In the past, Americans valued country, faith in government and patriotism. People were raised connected to a personal faith in God, organized religion provided a community, connection with family was the cornerstone of society, and people were inclined to make close connections inside of their local communities. Just the sheer idea that others believe in you can be the difference between a devastating pitfall that derails your life and a curve ball which you can bounce back from. Today, we don’t grow up ingrained with the same surrounding support system, lasting connections, or faith in God and country.

Society teaches that your successes are your own to take pride in and celebrate. You are paving your own way in this world. There is a great focus on self-determination, but the tools for coping with inevitable life failures are incredibly lacking. We are taught that personal responsibility and success is everything, but when we fail (as we all do), the personal fallout can be devastating.

I was already planning to write this piece on Learned Optimism when I happened to read an article on Resilience and was surprised to find that the number one quality suggested in becoming more resilient is to create the same types of support that past generations grew up with (as in Learned Optimism). Surrounding yourself with close connections, friends, family members, becoming more connected to faith, plugging into community, and making permanent, lasting relationships with “people who affirm you, recognize your strengths, natural, innate abilities, and provide the support and acceptance you need” will increase your resilience [Mary J. Yerkes].

Other ways to become more resilient: accept good enough, focus on what you can control, find meaning in life, accept advice from your loved ones, take care of yourself, ask for/accept help, don’t be surprised when life changes suddenly, expect things to eventually get better, set goals you can achieve, laugh. Being resilient isn’t about silencing yourself through turmoil or ignoring your emotions, but resiliency is a method of utilizing multiple positive coping strategies along with a mindset that is postured to “roll with the punches.”

The author of Learned Optimism says, “If we habitually believe, as does the pessimist, that failure is our fault, it will undermine everything we do.” Pessimists feel personally responsible in all success and failure, and helpless to make changes. This thinking leads to tendencies for depression, anxiety, and chronic pessimists are more likely to have health troubles later in life. Does this mean that society’s focus on self-reliance and self-esteem is creating generations of pessimists?  The good news is, both resilience and optimism can be learned!

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Learned Optimism by Martin E.P. Seligman, Ph.D.

Chronic Resilience: An Interview with Danea Horn by Toni Bernhard

10 Tips for Building Resilience in the Face of Chronic Illness by Mary J. Yerkes

Do Higher Levels of Resilience Buffer the Deleterious Impact of Chronic Illness on Disability in Later Life?

“A Lonely Life” by Mary Jane Gonzales

I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net

Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.

But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.

Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.

But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.

Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.

Find her books here available on BarnesandNoble

A Season of Waiting

10996053_10204217591452391_1532425959343231769_nWaiting is never a simple task. If you ask me if I am a patient person, I will say that I am patient with others, but have difficulty being patient with myself.

You might be waiting for an important test result to come in, for doctors to finally diagnose you after years of unexplained illness, for the medication trial to become available, or you might be waiting to see if your surgery heals without additional complications. You might be waiting for a loved one to return safely from a dangerous trip overseas, for important news about your finances, or you might be waiting to see if your friend will recover from cancer.

Waiting is a helpless feeling, no matter how much we can “help” the situation…the feeling that we are not the ones in control of the outcome makes us feel useless. Not knowing the outcome causes anxious, nervous impatient feelings that, for me come in waves which are accompanied by a racing mind.

For a person who started out bread to be the go-to person for fixing and fast problem solving, it seems life instead has been teaching me about patience, seeking guidance and waiting out storms. Instead of giving me problems to solve, I have problems that can only be solved through the healing of time.

Even though it is a useless feeling to wait, wait, wait, I don’t believe in waiting we are supposed to throw our hands up and stop seeking guidance. There are always more calls we can make, more specialists we can see, ways we can take care of our health, and people we can reach out to. But, if you have been waiting on something that weighs on your heart, there is only so much you can do to push the pace of the answer you so desire. Sometimes we can spin ourselves into a frenzy trying to get the answer we want to come to us faster, when some things are out of our hands. Praying, quietly seeking guidance and listening are also useful actions- though exceedingly more difficult to choose.

I am waiting for some very important answers in my life right now…Some answers that will forever change life as I know it to be. Maybe you remember a stretch of time like that from your past, and how you felt. How did you fill those long days waiting for tomorrow? Because of so many years of chronic illness, it feels as though waiting has been a regular part of life. Life with chronic illness teaches us to find the good, useful, and gratitude inside of the seemingly unlivable. These years of health struggles have taught me to lean into my faith and seek spiritual guidance. I am so grateful for the support and wisdom from those I respect, and I hope to be molded during this trial – what is God teaching me in this moment? …Because nothing is ever wasted.

Earlier this year, I wrote that “strength comes at the step we are on. Not weeks or months ahead.” As I work on waiting, and asking for patience, I try not to dwell on what challenges might come tomorrow. If you remember, my opening post for 2015 was a “No Fear Campaign.” It makes me want to shake my head when I think of the year God has been preparing me for!

About waiting, many say, “Just give it to God” as though it is as simple as forgetting about your heartache with your spouse, or your worries with your family, or your daily physical struggle with health that I know so many reading this are living with. I’m sorry if anyone has said that to you without compassion for what you are going through.

The past couple weeks have felt like an avalanche in many ways. When all of the rubble and dirt fell over me, and I went sliding down the hillside into the valley with the mound, even though I’m covered in a whole pile of dark unanswered questions, underneath, I’m praying, and studying, and being still (listening). Hopefully, this trial of waiting will lead to growth from that soil and rubble. My story is not finished. God is not through with me. Waiting is not doing nothing, waiting can be the most growing period in a person’s life. I am asking to be transformed during a time in limbo.

What did you do or what did you learn while you were in a season of limbo?

“Patience is power.

Patience is not an absence of action;

rather it is “timing”

it waits on the right time to act,

for the right principles

and in the right way.”

― Fulton J. Sheen

“But those who wait on the Lord shall renew their strength;

They shall mount up with wings like eagles,

They shall run and not be weary, They shall walk and not faint.” Isaiah 40:31

“What we are waiting for is not as important as what happens to us while we are waiting. Trust the process.”

― Mandy Hale

Fire Brick Road: poem

~Fire Brick Road~

Down this yellow brick road of fire and pain

There are things that you’ll learn and there’s knowledge you’ll gain.

*

You learn people prefer when you’re funny instead

Of telling the truth about how bad things get.

 *

You’ll figure it out that folks get annoyed

When you tell them you’re hurting when they’re feeling joy.

 *

If someone asks about your health facts,

You must pair each truth with a blessing you have.

*

Otherwise, they will think that you are pathetic,

Even though they may really seem sympathetic.

*

Make sure to be cautious about each complaint,

You’re “sick” now so people expect you to act like a saint!

 *

A bit more advice as you walk the path:

You’ll subtract a few friends, so learn some quick math.

 *

You’re just not fun like they remember,

But hang on to the ones who will love you forever.

 *

If you are grateful, then you will do better

The things that are negative really can fester.

 *

If someone else tries to meet a need,

It’s best to say “thanks!” and learn to receive.

 *

This yellow brick road of fire and ice

Has more stuff like: Doctors, and money, and guilt… OH MY!

 *

But on this road you aren’t alone

God’s with you, and others who limp it in toe.

 *

So when you are ready just reach on out,

Someone will be here; there’s always traffic on this route.

-by A Body of Hope

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Yellow Brick Road painting| by Artist Andrea on Etsy | "Fire Brick Road Poem" #RSD #CRPS Nervember Invisible illness. chronic illness. Spoonie. Wizard of Oz. Tongue and cheek poem about how to live with chronic pain. #abodyofhope

Yellow Brick Road | by Artist Andrea

Thank you to Artist Andrea for allowing her awesome Yellow Brick Road painting to be featured. Please go buy one of her unique original pieces from Etsy. Many of her paintings have the spirit of Frida Kahlo. Check them out!

How Years 16-22 Changed my Life at 28

“What’s with all of the appreciation? Isn’t pain and illness miserable…aren’t you suffering every day and lonely in bed? Don’t you hate that the world is spinning without you?” Don’t get me wrong, I’ve had plenty of pity party time over the years. Plenty of my own misery that I’ve crawled into. I still do from time to time. But, I have more gratitude now that is helping me along more these days. Why? How?

I was living my life, being an over-achiever, free-spirit, planner, optimist, perfectionist, social butterfly, spontaneous young person (yes all of those things at once). And boom: gimpy girl, doctors are your new BFF’s, your plans are a joke, and spontaneity is only reserved for your malfunctioning body. Adult life had just begun. The pieces had just fallen into place when they shattered apart so suddenly. I had so much fear about the future. Between all of the doctors ensuring me what a dim future I would have added to the horror stories I would read online, plus my own excruciating pain- equaled a young person very ill equipped to emotionally handle the fallout.

In the beginning, when I happened upon my first story of a child going through the same thing I was, I couldn’t help but draw strength from it. Knowing a child was in so much terrible pain every day, and still going to school and trying to walk or play- had me reconsider my own desperation. In all the times I was so ready to give up, there were definitely moments I would look up stories of children with the same pain disorder and remind myself that they don’t even realize they can check out. They just have to be strong- so they are. Because I’m in the same fight, I should also be strong beside them. Maybe you think it’s perverse, but it helped me. It helps me.

[One note: Others’ suffering does not negate one’s own trials and battles in life. Hopefully though, it can help us gain better perspective. We still must face our own pain intimately. A million other people in pain does not lessen my own struggle or yours. I just want to clarify that is not what I’m saying.]

It wasn’t until more recently, a few years ago when a myriad of other conditions floated my way, including a nasty one called POTS that changed my thoughts even more-so…

Even though I personally became chronically ill at 22 and then bedbound at 28, it is very common for young women of 16 to get POTS, unfortunately. There are teen girls at home and in hospitals all over the world hardly able to stand or sit up wondering what kind of future they will have. These young women are my heroes. Not only have they been teaching me how to better manage my condition using food, technology, and lifestyle choices, they also teach me through their attitudes. They keep pushing, keep trying, and they never give up hope.

When my POTS began something clicked for me. Even though my POTS entered my life with so many other conditions and more pain, making me more debilitated than ever, I’ve felt less grief for all I’m missing out on in life. It opened my eyes to how much I had done from 16 to 22 when my first chronic illness set in. In those 6 years, I finished high school, worked several jobs, had been in love, traveled the entire country, I learned how to do so many things with my hands, I used my body to go on many exciting adventures, and made amazing memories with my friends. I found the love of my life, lived independently, got married, bought a house, started college, and got the opportunity to spend quality time with my family.

For a very long time, I looked back at my life and memories and thought it wasn’t enough. I couldn’t even look at a old pictures without the memories crushing my heart- so I didn’t. It was like losing a loved one; losing myself. But if I can appreciate from 16 to 22, then I can appreciate all of it. What about the children whose illness inhibits their freedoms in life from a very young age? It changes the way I look back. Now I can look back at my memories and pictures and say, “Wow, I’m so blessed! God really allowed me to do so much!” Instead of, “I wish life could be as good as it used to be.”

Being thankful changes everything. Focusing on gratitude takes work though. And I have to avoid that which spirals me into my darkness. If you are toward the beginning of your journey, I don’t believe that mourning the loss of your life is negative. It’s an appropriate response and grieving is a valuable part of the illness journey. It has just taken me a long time to get here, and I have required a great deal of grace to find my way. Blessings to you on your own path.

 

“And I said, This is my infirmity: but I will remember the years of the right hand of the most High. I will remember the works of the Lord: surely I will remember thy wonders of old. I will meditate also of all thy work, and talk of thy doings.” -Psalm 77:10-12

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Thank you to Mitzi Sato-Wiuff at Aurora Wings on Etsy for allowing her very special original Skull Image to be featured here. Please go check out her shops linked below and purchase one of her awesome prints or instant downloads as a gift for the holidays!

www.aurorawings.com

www.etsy.com/shop/AuroraWings

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WordPress Blog Prompt: Salad Days. Looking Back.

Salad Days

Broken Things Can Be Fixed

Strong Enough Poster | Broken Things can be Rebuilt article #spoonie #RSD #CRPS #Fibro #MS #CFS #Chiari #Migraine #invisibleillness #chronicpain

Being Broken, I roll over and apologize yet again. I am sorry I am broken. I mean it when I say it.

Agonizing pain makes me the unbearable one. I moan, I cry, I writhe in pain. That isn’t what really hurts. The real pain comes when it wakes you up. When this beast reaches past me and begins its assault on you. It strikes again in the middle of the day when a young boy wants to play and have fun, but he can’t ask because he loves me and he sees that I am in agony. So he suffers quietly trying not to be hurt that he can’t ask. Always the thoughtful loving child he would not want me to suffer. I don’t want him to suffer and feel alone even in my presence. This disease spreads the pain far beyond my arm, my leg, etc. It reaches out and it latches on to the minds and hearts of those I love. It shatters dreams, it breaks hearts, it damages everything it touches.

Broken things can be fixed. Sometimes. They don’t always look the same when they are put back together. Re-purposing, taking something of one use and redefining its use. That is now the story of my life. I won’t accept being useless. I am not. I have purpose, I have life and use left in me. It won’t look the same. The clay has to be reshaped. The design is no longer of my making. I am now at the mercy. Mercy. Grace given when it isn’t earned. Help, I need help. I have never needed help in my life. Now, I need help. I need to find a way through the darkness.

Independent. I have always been a wandering gypsy soul. Stubborn. It’s in my genes. The hardest thing to navigate has been the stripping down of all of that. I can’t just go, can’t just do, can’t just be “me.” Life has changed. I thought it was for the worse. But, along with being all that I am, I am one thing indefinitely. I am the eternal Panglossian!  I look for hope and beauty in the worst of situations. And I have found some real treasures. Most of all, the support and love of those closest to me. I am actually learning, learning that I can let others love me. Who knew. I thought I was supposed to do all the work, be on top of handling everything, making sure it all runs smooth and without any hassle to those I love. I have never been able to delegate, I don’t trust any one else to do the job without being bothered by doing it, so I do as much of all of it as I can. No, I am not an overachiever lol, not at all. I just want everything to be perfect! Well, guess what? It isn’t, and I’m not. Not perfect and NOT independent. I now am forced to rely on Mister to love me enough to help me. Guess what, strangely enough, he does! I would NOT have known the depth of his love, or the truth of it without this disease. It has brought me faith in another human, in humanity. It has brought me to a humble place where I can learn compassion, a healthy place to serve from.

I am at the beginning of my journey. It’s been just over a year now. There will be many stories on the way. There will be a lot of pain. There will be endless tears and screams.  There will be doubts and fears. I will think many unthinkable thoughts. When it threatens to overwhelm me, I will adjust, take inventory, and recalculate and make new goals. I will find the beauty in the ashes, I will rise up on wings as eagles, I will be more than a conqueror and I will be loved. This is the gift that I am left with facing the beast CRPS. I am given the chance to live in faith, to find hope, to be a light, and to receive love and mercy.  It does have a glorious side and a beautiful ending. No matter what. I live in a broken body and a broken spirit. Broken things can be rebuilt for a new purpose and a new glory and a new day. I am not a broken person, I am just being redesigned.

~Wait for it…..it will be amazing!!!

xo ~Rikki Lin

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Today’s guestblogger, Rikki Lin is only one year into her journey with chronic pain and she is such an inspiration already. She has started to rebuild a new chronic life by upstarting an oilfield jobs help page and she creates information posters for the CRPS community among other projects geared toward helping people. I’m very grateful she has given a piece of her beautiful self to us today. 

Awakening: Brain meet Body

After many years of pain I then came on a time of suffering so unforgiving, it appeared my body would not make it out alive. But finally, I feel an awakening is upon me. In some ways, I believe my brain is renewing itself.

The putrid smell and taste of physical rottenness dissipated. The illness and ongoing pain have not left me by any means whatsoever, yet over this past year I have felt a change occurring inside of my mind. Maybe a transformation.

I did not realize how large a gap I had put between myself and my body these past years. I suppose the traumas experienced under medical care contributed to my drifting. My complete and sudden loss of physical independence surely didn’t help. However, there was no crueler attacker than my own body. To endure this unending physical pain and other debilitating maladies, I must have cut so many ties between me and my lump of person. To live under a physical betrayal so strong you realize no sense of personal willpower can guide the outcome- was an enormous blow. The only way to survive it was to drift beyond my physical self.

~Free My Self~

After the damage to my brain.

After disengaging from my great betrayer: my body.

After the pain went from unspeakable to so immeasurable,

I could no longer speak.

After there were doctors who were unafraid

to use uninvited hands on my body in its weakened state.

After family members had to dress and clean my flesh.

Yes, “my self” liberated from “my body.”

It had to, you see?

This recent awakening began with feeling present again. And new creative thoughts and senses followed. More than my only thoughts, “just breathe, drink, eat.” After years of survival alone, something new surfaced, like a tiny green sprout pushing its way through heavy concrete.

For the past few years, eating has been an uncomfortable challenge and chore. Although I have little appetite, I notice the smell of foods with a new curiosity. And my tastes have changed. I favor different foods and savor scents, flavors and textures I never enjoyed before.

All of my life I have been a sort of “Tom Boy.” Collecting bugs and rocks as a child, preferring to play outside with boys, spending far less time thinking of my appearance than most girls and women it has seemed. The only lotions or perfumes I own have been gifts. But coming into this renewal of myself, I have become acutely aware of my skin. For so long I didn’t have any connection to my flesh-I have even detested it in some ways. The betrayal, the dying, stinking body I could feel slipping away from this world. But it fought. It held onto life! And now, I dab a scented lotion onto my living body in appreciation. I inhale the mild fragrance all day knowing I am the bearer of this pleasant lingering smell.

When did my eyes become attracted to jewel tones like fuchsia and purple? I long to shop for clothes and home decor some day. What!? This is unlike me altogether. Then, as I practice my handwriting, it appears much more feminine than before (my scribble used to be a family joke). Reuniting with my body has brought about a womanly change in me. And I do feel different. Aware of new things. So much has occurred; I don’t think I can go ever back to being that person I used to be. I may as well transform into someone new.

My brain is making connections and is attempting to make friends with my flesh once again. Obviously, there are some new connections, as well. It is challenging to make friends with a body that constantly bites back, but some friendships are difficult yet still rewarding, right? I’m learning a lot about Neuroplasticity and how much the brain renews itself. I hope in time I will be making even more transformations. Who knows what other discoveries I will make along the way and what new connections I might find.

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Magical Fairy by Peggy Wolf Designs Etsy | Awakening: Brain meet Body #Spoonie #TBI

Magical Fairy | Peggy Wolf

Thank you to Peggy Wolf Designs for allowing her Magical Fairy Image to be featured.

Please visit her enchanting shops of original prints and leather goods to purchase something beautiful for your home or gifts!

www.peggywolf.com

www.etsy.com/shop/peggywolfdesign

This entry has been included in The Spoonie Daily online magazine!

Green Tree / Fall

Tree Photo| Green Tree / Fall Poem #loss #death #sympathy

Tree Photo by Marie Hunter

~Green Tree / Fall~

Thank you, Green Tree.

For stretching out to meet each day unafraid.

Your leaves reached out to touch the morning rays.

Courageous branches held the birds and squirrels as they played.

You appreciated the spring rain, Green Tree.

Soaking up only what you needed.

Surrounding plants shaded by your un-impeding canopy.

Now, as you break and change, don’t be afraid, Green Tree.

Don’t hold back your leaves from color.

No one will question your strength, Green Tree.

Your beauty will remain.

Your life was not in vein.

As your last brown leaf exhales to the ground,

The forest will remember how you stood so proud.

Don’t fear the change, Green Tree.

A Body of Hope

Will the Real Me Please Stand Up?

"Will the Real Me Please Stand Up?" #Spoonie #Humor #Disabled #adapting "Phrenological Chart of the Head of the Country" (1887) by John Wilson Bengough shows then Prime Minister John A. Macdonald in a comical light.

Phrenology Head Chart

Facebook asks me to take these ridiculous quizzes. Am I a pair of stilettos or a unicorn? You know the ones; they are meant to be fun… Like personality quizzes a Psychology dropout on pot (lots) would have put together.

I can say that I like potato chips more than honey, but am I answering the question this way because I now have low blood pressure and crave salty food all the time?

On a lazy afternoon would you go hiking, hang with your friends, or lie around and do nothing? Well, now that I’m sequestered to bed in a dark quiet room on account of my “hot messness,” (intractable chronic migraine & csf imbalance) how am I meant to answer?

I think of the many lives I have had and I am grateful for each one. Because I’m a woman, I know that every woman reading this has multiple lives. Many great-balancing women juggle all of their lives at once, but my lives are like a cat’s. Each one is unique and wild with stripes and spots. While each life ends and another begins, my soul remains constant. Once I could tell the pothead quizmaster exactly which kind of fabulous shoe I prefer without my chronic pain condition in my leg confusing my answer (fyi: wooden strappy wedge).

Do I answer a personality quiz without taking my ailments into consideration? But those things are just what I do, they are not who I am. I am not my illness and my illness is not supposed to define me– yet it’s really good at influencing just about every part of my life now. What about becoming a mom and how much a woman’s life changes when she has a baby? You are still you, but everything else in your life is now changed forever. And the truth is, my personality HAS changed in some ways because of these hardships…how could I not grow or evolve?

I’m still the person I was. I still love all of the things I can’t do anymore: the hiking, the kayaking, wearing fabulous high heels (probably not simultaneously)…I don’t pine away 24/7, but when I’m faced with the specific question: Who are you? I do feel fractured.

Oh well… I’m fractured, I suppose. Oh, and I’m also a Dragon, apparently (thanks quizman). I wanted to be Fairy. Well, maybe in another life (wink).

************

This was a piece I contributed to Project Naked. This is a great program/blog in which women from all backgrounds, ages and walks of life share stories about their bodies. All women are invited to contribute. They are very hopeful to hear more from those with ongoing health concerns as the relationship with our bodies is so unique. Follow this link to read my Poem “This Body” and other women’s powerful works.

Here you can learn more about submitting one of your own pieces to: ProjectNaked.

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