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:
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:
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.
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.
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
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
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.
~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
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!
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.