Category Archives: Poetry

Poem for RSD/CRPS “Pain Tokens”

“Pain Tokens” 

RSD: 

It’s not free.

It’s not “regional,”

And it’s not seasonal.

They say it’s like fire, but it’s so much more.

Like pieces of yourself scattered on the floor.

~
RSD: 

It’s not free.

It will cost, and it will take.

People will think your pain is fake.

You’ll feel it in your body;

 You’ll feel it in your soul.

It can start when you’re a kid; 

It can last until you’re old.

~
RSD: 

It’s not free.

Your family will pay.

Some will behave in a different way.

Some try to help; 

Some go away.

Some can’t stay to watch you change.

~
RSD: 

It’s not free.

It moves and grows in ways you cannot know.

You adapt…you can flow.

You can bend,

You can throw caution to the wind!

~
RSD: 

It’s not free.

You pay the toll;

You walk the road.

Share some coins;

You’re not alone.

@abodyofhope, 2014

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

Today is Color the World Orange Day! This is an annual international campaign to raise awareness and funds for chronic pain research. Please participate by sharing something orange to social media  (or to your blog) with the hashtag #CRPSORANGEDAY. Thank you!

 https://rsds.org

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“Waking in Winter” quote by Sylvia Plath 

Lines by Mitsuhiko Kamada


Waking In Winter” by Sylvia Plath
I can taste the tin of the sky —- the real tin thing.

Winter dawn is the color of metal,

The trees stiffen into place like burnt nerves.

All night I have dreamed of destruction, annihilations —-

An assembly-line of cut throats, and you and I

Inching off in the gray Chevrolet, drinking the green

Poison of stilled lawns, the little clapboard gravestones,

Noiseless, on rubber wheels, on the way to the sea resort.
How the balconies echoed! How the sun lit up

The skulls, the unbuckled bones facing the view!

Space! Space! The bed linen was giving out entirely.

Cot legs melted in terrible attitudes, and the nurses —-

Each nurse patched her soul to a wound and disappeared.

The deathly guests had not been satisfied

With the rooms, or the smiles, or the beautiful rubber plants,

Or the sea, Hushing their peeled sense like Old Mother Morphia.

It’s the love that hurts the most: Poem

~It’s the love that hurts the most~

Is that you?

Is that your voice I heard whispering to me last night?

In a dream,

In a nightmare,

In a moment, I felt you again.

I rolled around in the sticky sickly pieces of our past.

I awoke covered in your aftermath.

Threatened by your promises,

Violence to my heart,

The remnants of our love still cut me,

Shards slice through my consciousness,

Ripping me apart.

 

The Liar Inside

Portrait by Hypnotic Teapot, Etsy

Hypnotic Teapot Portrait Artist

~The Liar Inside~

There is this voice. It whispers. (It screams.)

It tells you that you have fallen too far.

There is no returning from these hits.

It tells you that someone else would have handled this path better.

Braver. Tougher. Smarter.

Someone else would not have lost so much. Someone else would not have allowed themselves to fall…this far. 

She tells you that you are a burden. A vampire.

Selfish. Helpless. Unworthy.

She tells you that if you disappeared…no one would grieve for you. 

She has a voice and she has eyes. She shows you how others might see you: Pathetic. Weak. Alone. 

This voice is a liar. 

She lives in the home of everyone. 

She sneaks in through the window of your mother and father. 

She sings you hateful songs about others. She sings you hurtful songs about yourself. 

Satan is an angel. Nickname: “the great deceiver.” 

Silence her deception with love, service, worship, gratitude.

Silence her deception with truth:

You are loved.

You are strong.

You are worthy.

You are made in the image of God.

You are SO unbelievably beautiful! 

You can face this day fiercely and boldly!

And you are not alone. 

~a Body of Hope

*****

 Custom image by Portrait Artist, Hypnotic Teapot on Etsy. She creates stunning, unique color and pencil portraits Hypnotic Teapot Portrait Artistof you, your friends, and your pets at an affordable price. I have ordered custom artwork from her and can vouch for her professionalism and amazing artistry. Go buy a gift your loved one will never forget! #ValentinesDay

An Unlocking Spell: Conjuring Myself

My sister asked me what I wanted to do for my birthday last year. I told her that if I had been well enough, I would’ve wanted to invite friends over to make sandwiches to bring to hungry area children. I used to do this type of thing in high school sometimes, and last year fantasized that it might make for a unique summer birthday gathering that my friends would like to participate in (being my awesome friends). I was really only thinking out loud, and then asked her what she wanted to do for her birthday (since our birthdays fall inside the same week).

When my birthday came around, I went to stay at my parent’s for the week. On the day of my birthday, my family gave me a small photo album filled with pictures of smiling children. “How cute…What is this?” I asked, curious what my family was up to. My parents and sister had arranged to spend the day volunteering for a back to school program called Give a Kid a Chance which prepares underprivileged children for the coming school year. My family donated goods, packed backpacks and checked little heads for lice. They spent their entire Saturday volunteering for this wonderful program in honor of my birthday!!!! I was crying, they were crying, we were all emotional as they shared the details of the day. It is absolutely one of the most heartfelt and most humbling gifts I had ever received, (which others received) and I know I will never forget their beautiful selfless gesture.

When my mom explained why they did it, she said, “Volunteer work has always been such a big part of who you are. After you couldn’t help in the community any more, you turned your attention to caring for people online. Your sister told us what you would have wanted to do for your birthday, so we did this because you would have been doing this if you could have.”

I didn’t realize how much I needed a wake up call until that moment. I felt like a doorbell was being rung to the door of my soul that a warrior part of me had to close in order to stay alive. To fight the illness, I had to know my enemy, and get in the trenches with him. But the price was that a piece of me had to be shrouded away, protected in that way, while I fought through the very worst of it. My family didn’t know how much I desperately NEEDED this reminder of my core, of who I am.

No one had spoken of my former self out loud in what felt like years. Their gracious act and words were like an unlocking spell. Something awakened inside of me on that birthday that started a transformation- which is still in progress. I am so thankful and fortunate for them, for having the ability to see the good in who I am now, and for never forgetting the person I have always been.

I woke up the following morning with this poem trickling from my brain:

~The Apparition~

 

In the time and space between

dark rooms and restless painful nights,

you might have time to count

too many stains on the paint.

The time between forgotton breaths

may have left you wondering

who you used to be.

Did the air sneak your old life out?

Under the door?

Through the cracks in the floor?

 *

Like Russian dolls,

the top one falls:

Broken.

And mama sweeps it away.

Those who recall that ghost,

tip toe beside the host of the demon.

They bring pieces of the past,

until at last you remember.

The apparition waits outside.

Now, you can smell her perfume.

-aBodyofHope 7/23/14

*******

There are times during the fight that we must lay down our old lives and find a way to nurture today, without looking back or too far ahead. But I’ve also learned that reminders of your past can boost your spirit in the midst of a struggle. Wherever you are in your journey, I hope you have someone in your life who sees the strength in you and reminds you of it.

Peace.

Blooming Beauty is by one of my favorite artists: Peggy Wolf. Check out her gallery on Etsy, you’ll love her as much as I do.

She’ll Always be Baby to Him

She’ll Always be Baby to Him

He walks through the door to a woman on the floor. She’s sick now, and he never knows who he’ll be coming home to. The house was built with children in mind. They left a life of adventure behind to save and to plan ahead for a wonderful family instead.

She was still a girl when the illness took hold. But neither of them let go of their goals. And they kept looking on to a brighter tomorrow when all of thier visions would come into view.

More health concerns, the bills piled high, the doctors said she’ll get worse through the rest of her life. And the dreams that once made them laugh were fading into thier past.

Oh, but the one hope that they couldn’t ignore was to start a family so they prayed to the Lord. But her body took a terrible turn- the house went dark- their last dream (like her pain)- it was burned.

They believed that their love would always survive, but the emptiness was an angry kind that filled the corners of their home with doubt. Without the promise of a little one, dreaming just didn’t seem much fun for the couple who had survived everything–until this.

Now a grown woman is like his child and she wonders if taking care of her will drive him wild, but she keeps on praying love will see them through. The loss they mourn is another Chronic Pain that they must both endure, but Hope and Love they cling to just like glue.

-A Body of Hope

********

Brett Williams "Isole" | "She'll always be Baby to Him #Spoonie #endametriosis A Poem about how chronically ill couples survive without children #MS #CRPS #Marriage

This striking image is courtesy of artist Brett Williams. “Isole” is one of Brett’s chalk works. Please visit one of his pages to purchase an original piece for your home or a gift.

www.brettwilliamsart.com

Facebook/BrettWilliamsArt

Chronic Pain Time Machine

If I wish away my pain, I will wish away my life. And time is too precious. | "A Word on Time" article about chronic pain slowing down time. And how that can be a benefit to cherishing small moments in life. #Spoonie #Pain #ChronicPain #RSD #CRPS #CFS #MS #Fibromyalgia #Arthritis #abodyofhope #Migraine

When we are children, time goes by soooo slowly- sometimes we have more vivid memories from youth than just last week. In High school, I remember dating someone, feeling as though we were together for years when in reality the time may have only been months, but the value of it was just as great as many years. Was it the focus perhaps? The undivided attention? Was it the emotional impact? The relationship blew out a canyon of feelings and memories… like nothing you had ever felt or experienced before.

“Time is an illusion.” -Albert Einstein

“Time is what you make of it.” -unknown

I think about things like this from my bed now. I feel time slipping through my grasp at an alarming speed when I think about how long I’ve been chronically ill. [Especially] When I think of all of the missed celebrations gone by. The weddings. The births. All of my best friend’s son’s birthdays missed. My baby brother’s sporting events.

Only one life

Once in a lifetime

Don’t look back

Crane your neck

*

Only one life

Sand in a bottle

Sand so quick

Sand like diamonds

Every single moment

So damn precious

*

Only one life

Slow down time

Ticking on by

Once in a lifetime

Time like diamonds

Moments shine

Around your neck

But there’s another side to experiencing time. Now this is a secret that people with chronic pain know that I’ll be letting you in on:

Time slows down when you are suffering. The more pain you are in, the slower time goes.

Slow time in pain is definitely NOT like the gift it sounds like, however. Mostly, we are wishing for the minutes to speed up. But time going by faster will not diminish the pain, unfortunately. I used to push myself to get through each minute. Watching the clock, I would be relieved I got through another minute gone by- another day passed. Congratulations to me- I got through the day! The problem with that is wishing away time. Before I knew it, so much time had gone by and my condition was only worsening, treatments weren’t helping, and ticking away my life’s minutes was only getting me closer to worse problems in my future.

I cannot control so many of my circumstances, and I cannot go out and DO all that the world once called from me. However, I see a new opportunity presented. Precious moments with loved ones can be truly cherished instead of rushed through. I’m not implying everyone in pain has a surplus of time on their hands. No. In fact, what this means is the pain is so outrageous that I’m fighting not falling asleep, passing out, or screaming out loud. This very physical fight between my will and body is where the precious moments lie between. Where my best friend holds my hand at my bedside whispering to me about her son’s new toys at Christmas with a twinkle in her eyes. This is where time slows down and the moment seems to go on and on.

Life is a gift. We only have so much time. And we each only have one trip. If your current time feels it has slowed down, maybe it can be an opportunity to focus on the moments that matter.  Looking back, time will always feel like it went by too quickly. No matter your present circumstances, you always have a choice in how you spend your moments.

Time Quotes

The featured poster is original: You may share it as you wish.

Fanny Crosby: This is my Story, This is my Song

Fanny Crosby: This is My Story This is My Song article #biography #inspiration #blind #poet #hymn #quote #Spoonie #chronicillness #depression #Christian

Fanny Crosby

If you have ever been to a church where they still sing occasional hymns, then your heart has been uplifted by the works of Fanny Crosby. She was a blind woman, an activist, a writer, poet, teacher, humanitarian, and possibly, a chronic illness and depression survivor. Even though she made history by writing nearly 10,000 hymns- more praise songs than any other person, many don’t know the story behind this incredible woman and survivor.

Shortly after her birth in 1820, fever from a common cold caused swelling in Fanny’s eyes. The treatment the doctors used trying to bring down the swelling caused permanent, irreversible blindness. Fanny never resented that doctor, and later, wrote a poem about her blindness being her gift.

Growing up, Fanny was a spirited happy child, despite living in darkness. Her family had roots in the Puritan religion and her grandmother put an emphasis on her Bible education. Young Fanny took an interest in music and creative writing, and she wrote her first poem at age 8. You can already see her early knack for rhyme and rhythm:

Oh what a happy soul I am!

Although I cannot see,

I am resolved that in this world

Contented I will be.

How many blessings I enjoy

That other people don’t!

To weep and sigh because I’m blind,

I cannot, and I won’t!

After she graduated college, Fanny spoke at multiple campaigns to raise awareness for blindness education, she was a speaker in front of Congress for political legislation, and she even befriended Grover Cleveland! Even though she had gained popularity in her political writing, was a noted speaker, and was becoming a recognized poet (lovingly called “the blind poet”), in time, she said that she felt an emptiness in this work. This is when Fanny Crosby began focusing more on her spiritual path and writing hymns and praise poems which have touched so many hearts.

She shifted her focus to helping others as she sought a more meaningful life serving the Lord. Just like when she was younger and volunteered teaching blind prison inmates, Fanny set out to help at homeless shelters and was a regular patron at missions all over New York City. Her heart was with those less fortunate; she gained a new type of prominence among a different class of people for being a compassionate, caring soul during a harsh time in America. When Cholera broke out in New York City, she turned her focus to caring for the sick and worked tirelessly at the hospital near her home in Brooklyn. She was very passionate about this effort and many of her songs are inspired by this period in her life.

Fanny and her husband had one child, a daughter, who tragically died in infancy from Typhoid Fever. One of her most popular hymns, Safe in the Arms of Jesus was written just after the passing of her daughter:

Safe in the arms of Jesus,

  Safe on His gentle breast,

There by His love o’ershaded,

    Sweetly my soul doth rest.

After losing their only child, her husband became a recluse. Fanny began spending most of her time in the church and wrote the majority of her hymns and Christian poems with her minister and often, her co-writer. Over and over, there are records of Fanny not feeling well, being “depressed,” worn down, and having to take time away for health matters. It seems as though this was a regular occurrence over the course of her career. Saying she had a Chronic Illness or a depressive disorder is just conjecture, but it does appear that she dealt with ongoing health and emotional struggles throughout her life. Nevertheless, she held tight to her faith and was a constant source of inspiration to those in her life. Through her encouragement in helping others less fortunate and sharing her very personal poems about her spiritual walk with the Lord, Fanny was always willing to give of herself. She STILL is a source of encouragement and hope to anyone who sings or reads one of her writings.

Fanny Crosby’s blindness did not hold her back from pursuing her passions and using the gifts she was given. She once said that she was happy to be blind so that the first sight she would ever see would be the face of her Savior in Heaven [para]. She had so many hurdles in life beyond her impaired vision, but she continued her writing and always sought out new ways she could be a blessing to others in need of help. She made history with her words. Through her music, she continues to open hearts, and through her lyrics, souls come alive. She is an inspiration to me as a woman, as a writer, and as a disabled person. Fanny Crosby made history with her works of praise songs, but through her actions, she left behind a legacy of love.

Blessed Assurance (Chorus)

This is my story, this is my song,

Praising my Savior all the day long;

This is my story, this is my song,

Praising my Savior all the day long.

-Fanny Crosby

Pass Me Not Oh Gentle Savior 

Resources:

To read and listen to Poems & Hymns by Fanny Crosby

www.1timothy4-13.com

www.wholesomewords.org/biography

http://en.wikipedia.org/wiki/Fanny_Crosby

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

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

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!

Remembering When: poem

Don't Touch | Zazzle/MixyPixie. "Remembering When" #RSD #CRPS Poem about Family and Life with Chronic Pain. #Spoonie

Don’t Touch | Zazzle/MixyPixie

~Remembering When~

I Think About The Time When My
Days Were Mine to Call,
I Didn’t Have To Think About
Meds or Charging At ALL!!!

I Used To LOVE Hugs And being Touched
You See- I Grew Up That Way-
But NOW When People Come Near Me
I Want To Shy Away

I Used To Be The Life Of The Party
Never Sitting Still For A Moment
NOW I’m A Stranger Even In My Own Body
And I Can’t Even Remember How I Got In It!

Of Course I Am Happy To Be Alive
I Still Have So Much To Give
I Just Want A Life That Doesn’t Hurt So Much
Just To Wake Up And Live

-written by Kelly Lynn Edholm

******

Guest Contributor, Kelly Lynn has been surviving Complex Regional Pain Syndrome/RSD since 2007 along with other health challenges. She is a mother, a grandmother, an artist, teacher to the disabled, and places her faith in God first in her life. The “charging” she is referring to is her Spinal Cord Implant which is meant to help reduce pain. Thank you so much Kelly for expressing so clearly what many of us feel. 

This is the last of the Nervember Series. Visit Categories to see all of the RSD/CRPS Awareness posts from this past month.

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