Gifts of Illness

While not written from a distinctly Christian perspective, it was interesting to me to find another article on the perspective of seeing gifts in our weaknesses.

The Name

I wrote this poem at the beginning of the year. I'm posting it today in honor of the grand opening of the Whittemore Peterson Institute in Reno, Nevada. (Permission to reprint the following poem is granted by the author if reprinted in full, including copyright line, and linking back to this blog at http://www.GivenMeaThorn.blogspot.com  If you are not familiar with my journey though "Chronic Fatigue Syndrome," or XMRV- Associated Neuro-Immune Disease, you may want to start here.)

What's In a Name?

Head pounding

Throat burning

Pain radiates up

Into my teeth, into my ears

I'm hot

Wait, I'm freezing

Sweats and fevers

Come and go

Snuggled down in bed

In my softest jammies

Hoping for relief in slumber

Elusive sleep refuses to come

Thoughts wear me down by racing at manic speed

Of an unstoppable bullet train

Or are as muddied as trying to gain a clear view of sea life

While snorkeling in pea soup

The weight of my pajamas brings pain

Agony from every point of contact with the bed

Cozy blankets feel like sandpaper against my skin

Invisible icepicks stab randomly at my body

Where there's no pain

Tingling or numbness instead

Muscles randomly twitch and jump

Sudden weakness and I loose grasp of what I hold

The room whirls

I'm dizzy even lying flat

When I walk haltingly down the hall

I feel for the wall to keep my balance

At least I don't have hives tonight

Something to be thankful for in this moment

They come and go, here nearly as often as not

I'm glad they have not chosen to visit right now

How can I feel ravenously hungry

And nauseous all at the same time?

The thought of food turns my stomach

Yet I crave something to eat, just don't know what

My limbs feel like lead

The weight packing onto my body

Because I cannot tolerate the simplest of exercise

Only compounds my frustration

Movement saps limited reserves

I try to lie still; it works for a moment

Before waves of pain tip the scale

I writhe to keep from crying out

Every breath an effort

Not “pain” exactly, a distinct heaviness

Exhausting to push chest in and out

Would be easier not to inhale

Depressed? Want to die?

No!

Just putting my reality down on paper

Rather than wearing my loved ones out with my complaints

My nemesis has been given many titles:

The belittling “Yuppy Flu”

A pathetically nondescript “Chronic Fatigue Syndrome”

The slightly more accurate mantle of “Chronic Fatigue Immune Dysfunction Syndrome”

And after nearly 20 years of this living nightmare

Finally a name that gives credence to the seriousness of my condition

XAND – Xenotropic murine leukemia virus-related virus Associated Neuro-immune Disease*

Who would have thought I would find affirmation

Even relief, in testing positive for a life-altering retrovirus?

It's the validation that brings me gladness

I've been sick all along...

And now IT has a real name

*Since the original writing of this poem, HGRAD, standing for Human Gamma Retrovirus (HGRV) Associated Disease, seems to be the more scientifically correct name, replacing "XAND" as "XMRV" was not originally well named from a technical standpoint, being a clearly human virus, rather than murine (mouse) in nature.

© Copyright, Jennifer Saake, 2010

Dedicated to the researchers at the Whittemore Peterson Institute

Update, February 2011:
This poem has placed in the top 20 in a worldwide poetry contest at InvisibleDisesases.com.

Being Made Perfect

Remember a couple posts back where I talked about theme words God seems to work in my life?  Perhaps I posted a bit prematurely for God seems to be moving me into yet another new season. Or perhaps I didn't post "too soon," but rather this update simply acknowledges God's continual working in our lives.

On my InfertilityMom blog I recently admitted my perfectionistic tendencies. Since then I have been slowly, imperfectly (as in not every day, not consistently, not to my exacting expectations of what good Christian "quiet time" or "devotional" time should look like - gasp) working my way through Biblical references to the word "perfect". There have been days where I've humbled and challenged by the process, and times when this study has been quite liberating.

Amazingly, I've been excited and surprised to see how closely my word study on "perfect" falls hand-in-hand with all I'm learning as I work on writing this book on the life of Paul. I never would have imagined that one study would have anything to do with the other when I started battling perfectionism less than two months ago, but it's been great to see all Paul had to say about perfection.  Today, as I was tweaking some things in my book introduction, I was stunned to realize that a key verse I had chosen months ago for the opening section of the book is one that falls right into my study on perfectionism:

“Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me.”
- Philippians 3:12 (NIV)

I love it when God so beautifully orchestrates and intertwines so many different aspects of my life, all to teach me more about Himself and His loving, personal grace toward me. I'm so looking forward to sharing more about God's views on perfection as I unfold Paul's story for you through the book!

Wholeness

Rest Ministries posted a great little article today about God's Healing and how it can sometimes look different than we anticipate, but is always God's best for our lives.

I also shared a vulnerable post today on one of my other blogs, about my own quest to physical and spiritual wholeness in my battle to make wiser food choices as an act of spiritual discipline. Do you share similar struggles? Would love to hear from you on this issue.

Theme Words

One way God seems to work in my life is through “theme word seasons,” specific life lessons He wants to drive home with me and situations that bring those themes to light over and over until I finally begin to grasp a small portion of what He longs to teach me. Wait resounded in our hearts through the loss of our business and the struggle for my husband to find a new career that truly fit, all in the midst of infertility's endless cycles of hoping and hurting, wanting and worrying, coping and crying.

Waiting has given way to new horizons, a series of theme seasons too numerous to list here, but with one of the most recent being Hope. And then to Hope, God’s spent the last couple of years adding the active pursuit of Joy to my life as well. Here are some of my favorite resources from these three themes:

Wait:
- Hannah’s Prayer Ministries offers support through fertility challenges, including infertility or the death of a baby at any time from conception through early infancy.
- A Graceful Waiting by Jan Frank
- The Wait Poem by Russell Kelfer (Truly beautiful book, with a written message even more powerful than the photos! This poem was life-changing for me and has been impactful in many lives.)

Hope:
- Out of the Valley Ministries, Inc. Postpartum Depression Support
- Grieving the Child I Never Knew by Kathe Wunnenberg
- Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss by me, Jennifer Saake :)

Joy:
- Rest Ministries provides support in the face of chronic pain and illness, including National Invisible Chronic Illness Awareness Week each Sept.
- Rain on Me: Devotions of Hope and Encouragement for Difficult Times by Holley Gerth
- The book of Philippians, written by the apostle Paul.
- And a late entry to my list, a blog post I just read this week about trusting God with others' hurts, Gratitude not Guilt

"Summing it all up, friends, I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious—the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. Put into practice what you learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his most excellent harmonies” Philippians 4:8-9. (MSG)

Hope in the Shadows

Nearly a year ago I was blessed to share a guest post on the (In)Courage blog. I'm re-posting it here today:

"Wait on the Lord, be of good courage and Wait….”
How many times has this refrain whispered in our ears over the past 19 years?

We Waited through a two-year engagement before experiencing the joy of marriage.  A decade of infertility followed as we endured 10 losses to miscarriage and unsuccessful adoption attempts.  Then came the bitter surprise of post-partum depression.

Entering our 20th year of living with chronic illness, we’re still Waiting and looking for answers to my daily pain and ongoing loss of abilities.

Have you ever heard someone describe a time of trial as, “living under the shadow of [xyz]”?  Plug in some “xyz”s of your own here; maybe cancer, abuse, loneliness…

Job and the Psalmist talk of “the valley of the shadow of death.”  Shadows impress a dark picture of gloom and heaviness in my mind.

Hope demands I give shadows another look.  God paints shadows in a positive light many times through His Word. 

The Psalms sing repeatedly of "taking refuge under the shadow of His wing," or “resting in the shadow of the Almighty.”

Hebrews describes the best of this life (the Lord’s Sanctuary and the Law) as a foretaste, a copy, a shadow of what is to come in Heaven.  To God, shadows offer protection and glimmer with Hope.

It took our 2-year-old to really illustrate this point to me:
“Where my shadow go, Mommy?”
“Your shadow is sleeping, Sweetheart.  It’s dark because it’s nighttime, but we just need to get you to the potty now.  You did a great job waking up to keep your pants dry, so let’s get there quick!”
As we reached the restroom I flipped on the light.
“There my shadow are now Mommy!  Thank you Mommy!!!”
He danced a happy jig (almost having an “accident” in the process), all signs of sleepiness erased from his glowing face.

Long after our sweet son was soundly sleeping once again, I lay awake reflecting on the pure joy he found in shadows. While I tried to escapee shadows, he saw them as treasures.

I asked the Lord for strength to see my troubles through more childlike eyes that could delight in, and even thank Him for, the imprints they cast over my life.  It was then that I realized that shadows are merely evidenced by light.

What Hope!  The more deeply I feel the weight of a shadow fall across my path, the more powerful the source of Light that contrasts with that shadow.

I too often fixate on darkness rather than finding courage to stand in shadows because of the Light flooding around me.  Being “helpless” to change my circumstances does not need to equal “hopeless” despair.

Hope can thrive in shadows because of the steady, unshakeable, unmoving Hand of Grace holding me in the light of His love.  When trials threaten to overshadow me, I can rest in the refuge of the shadow of His wing.

The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned.- Isaiah 9:2 (NIV)

Verses that reflect God's sheltering shadows in my life:

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows” James 1:17. (NIV)

“I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name.” Isaiah 45:3. (NIV)

“The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned” Isaiah 9:2. (NIV)

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light” Matthew 11:28-30 (NIV)

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31. (NIV)

"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me" Micah 7:7. (NIV)

"We wait in hope for the LORD; he is our help and our shield" Psalm 33:20. (NIV)

"I waited patiently for the LORD; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God..." Psalm 40:1-2, (NIV)

“I am the man who has seen affliction by the rod of his wrath.
He has driven me away and made me walk in darkness rather than light…

“He has besieged me and surrounded me with bitterness and hardship.
He has made me dwell in darkness like those long dead…

“Yet this I call to mind and therefore I have hope:
Because of the LORD’s great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness…

“For men are not cast off by the Lord forever.
Though he brings grief, he will show compassion, so great is his unfailing love…

“You came near when I called you, and you said, ‘Do not fear.’
O Lord, you took up my case; you redeemed my life…”
- from Lamentations 3 (NIV)