Tuesday, August 26, 2008

Invisible Illness Awareness Week

This is Invisible Illness week. From Laury’s blog I’ve borrowed excerpts from a list from of Ways to Encourage Chronically Ill Friends by Lisa Copen, and added a couple of my own at the end. But first, I’d like to share a story I wrote a few days after being diagnosed with Fibromyalgia. I’ve been able to share it with a number of people in my pain management class and other places.

My Journey
By Amy Michelle Wiley

The bridge arches against the horizon, the firm wooden slats giving slivered glimpses of the river below. The scent of cedar rises strong and heady in the breeze. He stands on the bank before it, waiting for me. He calls me by name, and we step together, He and I, onto the bridge. Onto the path of My Journey.

We reach the middle, the tallest point. I gasp, jerking to a stop. The joy so nearly bubbling from within me dies, the creeping grasp of dread reaching to my throat.

On the other bank the smooth wood of the bridge abruptly meets a dirt trail, rocky and pitted with crevices. The dark path twists downward, emptying into a valley filled with fog so thick it allows only shifting glances of thorny hedges and jagged boulders.

"But Lord," I turn to look at Him, tears already finding their way down my cheeks, "I do not understand."

"This is your path, my child." His eyes fill with empathy--something stronger yet than that, a knowing, an understanding beyond my own.

"I cannot cross that." Fear and confusion fill me.

"No, you cannot," He agrees. "Only through My strength can you travel that path."

"But," the word escapes me once more. I seem unable to stop it. "Why me? Why this path?"

He reaches out a hand, gentle and yet strong, lifting my chin so slightly. "Because, child, within you is a faith strong enough to make this journey. You will cling to me, and grow stronger because of the trials. I will teach you, and you will learn. In that, I will be glorified. This is your path."

I do cling to Him then, because my legs will not support me. My eyes leave His, drawn once again to the darkness of the trail. "Is that the good that will come of it, then? That I will draw closer to You?"

"Not only that." He kneels, drawing me to His side and pointing into the charcoal smog. "Look."

At first I see nothing, only the choking swirl of haze. Then I see a glimmer of light, far in the distance. It grows clearer until I can see a small house, lit only by a dim candle that seems one flicker from going out.

"You are the one I will use to brighten that light, encourage it and fan it into a flame so brilliant it will glow for miles around." His voice rings with a timbre that fills me with something--almost an excitement. "If you do not follow that path the light will continue to grow dimmer, until it fades to only an ember."

The fog closes once more, and I stand still, taking in the rocks that spike from the ground, the thorns leaning over the path, ready to shred any who pass by. Slowly, I take my gaze from them and turn back to Him, seeking assurance.

He lays an arm around my shoulder and points once more. The fog shifts in another area and this time I gasp in wonder. A meadow of emerald green shimmers in a gentle breeze, mingling with flowers blooming so brightly I can see them from the bridge, almost smell their sweetness. Birds swoop in gentle rhythm, playing among the limbs of the trees that circle the glen. It all flows in a dance of worship, of joy, of peace.

The Creator smiles. "This is a place of rest I have prepared for you along the way."

My heart sings. He cares.

He loves.

He has created for me.

He turns and looks full into my face. Compassion fills His eyes. "The path will be difficult. You will fall. You will hurt. The journey will be long."

He searches my face. I have no words to give Him. I can only grip Him tighter, and wait for Him to continue.

But I will be with you. Every step of the way I will be there. I will raise you when you fall. I will mend your wounds. When your strength fails, I will lift you and carry you." A tear drips down His face, filled with a rainbow of feelings… pain… empathy… strength… love… "All you have to do is reach out your hand and I will hold you up."

At last He holds out His hand, scarred and mangled, strong and beautiful. "It is time."

My hand is small and white as it slips into His. Strength flows from Him as we cross the span of the bridge. I cling to His hand and, together, we step onto the path.

© 2008 Amy Michelle Wiley

From "51 Ways to Encourage Chronically Ill Friends"

By Lisa Copen

“A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world.” ~Lois Wyse

~Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.
~Put meals in disposable containers and attach a note saying “This doesn’t need to be returned.” ~Wash his car and put a little note inside for him to find later.
~Ask, “What do you wish people understood about your illness?”
~Don’t make her feel guilty about things that she cannot do.
~Instead of saying, “I will pray for you,” say, “I’d like to pray for you right now, if that’s okay.”
~Mop the floors.
~Ask, “Do you have an errand I can run for you before coming over?”
~Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it’s a good day or a bad day.
~Don’t say, “So, why aren’t you healed yet?” or “I wonder what God is trying to teach you that you just aren’t learning!”
~For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says “For when you don’t feel like doing dishes.”
~Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she’d like you to take care of it. If she says you can, be firm but not rude. ~Don’t embarrass her by making accusations of discrimination or by making a scene.
~Don’t tell her about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest).
~Ask, “What are your top three indulgences?” and then spoil her soon.
~Hold the door open for her. They are heavy!
~Ask your church youth group to come over and clean up the yard during seasonal changes.
~If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she’s feeling particularly good that day, she may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther.
~Accept that her chronic illness may not go away. If she’s accepting it, don’t tell her the illness is winning and she’s giving in to it.
~Don’t say, “Let me know if there is anything I can do.” People rarely feel comfortable saying, “Yes, my laundry.” Instead pick something you are willing to do and then ask her permission. Try the coupon in back!
~Don’t ask, “Why can’t the doctors help you?” or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.
~Avoid having gifts be “pity gifts.” Just say, “I saw these flowers and their cheerfulness reminded me of you.”
~Offer to drive when we do things together.
~Ask if you can help carry anything.

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and the author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, which can be found at bookstores everywhere.


Lori said...

What a beautiful story..so very encouraging. I needed to hear this today..."
But I will be with you. Every step of the way I will be there. I will raise you when you fall. I will mend your wounds. When your strength fails, I will lift you and carry you."
Tears are falling as I write. May God continue to bless you on this "difficult" road. He Will certainly lift and carry us:)

Lori said...

Amy, I passed an award onto you. Visit my blog:)

Kasha Sue said...

Hi Amy,
I found you through HSA. Your post was wonderful. I'm one of those people with an invisible illness, I'd never thought of it in that way though, thank you. What a blessing and encouragement! May God bless you and may His face shine upon you and give you strength for tomorrow. :) ~Kasha

Lori said...

Amy, can I print MY JOURNEY and hand it out to people in my support group (I hold a support group for those with chronic illness/disability)?
They would love this.

Anonymous said...

One of my favorite of all your writings. I simply love this one. Rose