February 2016 archive

An Inch Of Daylight. If I Want To Live

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inchofdaylight
“My heart is troubled, my strength fails me,
And the light of my eyes, even this is not with me.”
–Psalm 37:11

It was a shadowy week.
Not just Ohio cold and grey.
Not just smudged with Lenten ashes grey.
Not just a big inky cloud I can’t explain away grey.
It was so dark I couldn’t see my hand in front of my face.

Every morning I woke early with my family to move through our routine. As soon as they left for work and school I would make the girl’s beds, wipe the kitchen and bathroom counters and sinks, straighten the house for Better Homes and Gardens and then stumble to my own bed. Curled in the fetal position under six heavy blankets I was gripped with a paralyzing fear this would be the time I might not find my way out of the chasm of despair.

If you’ve ever tried to die before you understand there’s nothing worse than failing at it. If you’ve ever endured intake for an attempted suicide you understand the high stakes to get it right the next go round. I don’t believe in levels of hell, but if I did a hospital psych ward would be at the very least level one. This knowledge makes the slipping even more frightening. I can make a way of escape once and for all or I can hold on here. The lie is there is no real help to be found in the middle.

“On a scale from one to ten how likely are you to harm yourself?” The wrong answer to this question lights a fuse you have no power to put out. It’s really better to fudge the numbers. “Have you thought of specific ways to end your life?” Never, ever tell them how you would do it. People who love me and have sensed me slipping away say, “Call me. I mean it. Anytime of the day or night. I’m here.” They remind me I have to let them know when it gets this bad. If I’m faking being okay when I’m not they can’t help. I run through the short list. Lord, people have so many hard things to deal with. I can’t be one of their hard things one more time.

“My soul is exceedingly sorrowful, even to death.
Stay here and watch with Me.”
–Matthew 26:38

Until a few years ago, when I was finally diagnosed with Autoimmune Encephalitis and Adult PANS/PANDAS, I could only explain the sudden onset of the episodes as if a demon was coming over me even though I knew I was ultimately protected from them. I was mostly happy and hopeful even in the midst of intense daily pain and extreme life stress. Out of no where it would rush over me. I wanted to die. My healthcare professionals continued to try to understand and treat me as some variation of Bipolar, the best diagnosis they could squeeze out of the DSM. I now know there are chemicals, bacteria and viruses able to hair trigger me into debilitating physical and neuropsych symptoms. These are things completely out of my control, and my autoimmune disorder sets me up for continuous infections and cycles of sickness. As soon as I begin to feel unwell physically I become disoriented by hissing lies about the worth of my life. I have never really fit the depression diagnosis. I’m just not a sad person. Serious, yes. Sad, no. Every time it happens there is a moment when my mind and heart fade to black. The physiological starting place is compounded by a life of what can only be described as continuous pain that is often excruciating. This means I am already always standing on the ledge.

You want to live a long life. You want a future and a hope here on earth. You are maybe even afraid to die. I want release. I know there are people who need me now. I believe God has a purpose for me or I wouldn’t still be alive, but I want to go. I’m ready to go.

“Then they cried to the Lord in their afflictions,
And He saved them from their distresses;
He sent His word and healed them,
And delivered them from their corruptions.”
–Psalm 106:19-20

This year I am working through the She Reads Truth Lent study. It’s good. The best part is it’s mostly just straight up God’s Word. When your heart is torn wide open and fleshy with need the living and breathing part of Scripture finds an especially perfect soil to take root.

I am crying to Him in my distress.
I’m LISTENING hard.
I’m pointed east.
I’m looking for the light.

Another Lent resource I have used for many years is a small book of daily readings by Emilie Griffin titled Small Surrenders. She suffers from chronic illness and tells of one of my favorite poets, Gerard Manley Hopkins, as an example of a man “plagued by frailty and weakness, not just physical but psychological. At times he would plummet into an abyss of darkness, what he called ‘cliffs of fall.’ The steep dropping-off places of the soul seemed worse than any physical distress. This, therefore, was Hopkin’s prayer, his hope: ‘LET HIM EASTER IN US. BE A DAYSPRING TO THE DIMNESS OF US.’

The sun was shining this morning as I drove to my counselor’s office. I played the JJ Heller song “Daylight” over and over and over again on the way there and the way back.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

Be near me.
Be near me now.
Be near me.
Be near me now.

There is an inch of daylight underneath the door.
It’s enough for me to fill up my canteen.

If I want to live
Your love is what I need.

“You do not want a sacrifice or I would give it; You are not pleased with a burnt offering. The sacrifice pleasing to God is a broken spirit. God You will not despise a broken and humbled heart.”–Psalm 31:16-17

Photography by Cindee Snider Re. Used with permission.

JJ Heller’s “Daylight.”

(Thank you for praying for me in the “Shadowlands.” This is the first February in several years I haven’t been able to escape to Arizona. Those trips were times of retreat and healing but also reminders I could be some better. I’m missing the desert. For me it was a little like the Promised Land.)

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Love Is A Mix Tape. You Stay

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46087325a7a799ff1cd67cea1266d2dbfb88fa5

Every morning your alarm goes off at 6 am. I hear you slide out of bed and into the shower. I ease from my pharmaceutical induced sleep into first prayers. Danica pads in from her room and crawls into your still warm place under the pile of covers for snuggles. The sure whistle of the tea kettle ends our snooze. I force my aching joints and fuzzy head upright and shuffle to my nest chair. Within minutes I’m wrapped in blankets and warming my fingers around a favorite hand thrown pottery mug. I always close my eyes for the first sip of the life elixir you French press for me. I taste your care in the special mix of beans brewed with precision and the perfect amount of cream and sugar. We don’t speak. The familiar and comforting aroma and taste greet me gently and say, “Good morning, my love. I cherish you.” After you make breakfast for Danica you join me in the living room for ten minutes of together. You look across the room into my eyes and find the answer to the question of how you will feel for the day.

Last week I woke with a sharp pain around my shunt. You could tell I was wincing, and my breath would catch when the knife came. Tears welled up in your eyes as you told me what it feels like to watch me suffer. You said every time I’m hurting you are too. You said as hard as it is to be me, it is perhaps even harder to be in love with me. It is pain multiplied. You are powerless to make it stop or even a little better. You would take it from me if you could. I know this, but I would never suppose you could survive even a day of the ache I’ve learned to master over a decade. It is mine to bear and yours to watch.

Saturday night we sent our girls away to celebrate fifteen years of promises made. Delaney was disgruntled, and I told her she is old enough to understand just a little how a man wants a woman and a woman a man. I told her she is lucky her parents are still madly in love and wanting time alone. Our plans to dine at our favorite restaurant were cancelled because my brakes began grinding and scraping. We haven’t been there for five years, since our tenth. We swore we would always make these milestones count no matter how poor but with the unknown cost of mechanics we didn’t chance it. Instead we went down the road for a cheese platter and cheap red wine. It was a feast for us. We told our love story back and forth to one another. The waiter brought us a piece of chocolate cake to share. I’m sure he thought it odd neither of us wore wedding rings, yours needing sized smaller and mine with the big gaping hole where the diamond used to be. Broken traditions, symbols sold, no gifts exchanged or surprises planned, just our rare and enduring romance built on a foundation of precious things no money could ever buy.

We came home and danced heart to heart to the melodies of our personal soundtrack until there was no space between your body and mine. God talks about two being one. Most consider this hyperbole at best. Why would you ever give all of yourself to someone else? Why would you sacrifice every bit of power and protection over your own heart to be true to another? Why would you forgive betrayal? Why would you stay? Why would you keep staying when life would be easier almost anywhere else?

You buried your face in my war torn neck and told me I am the most beautiful woman in the world. You traced my many scars with your fingers remembering the hard fought battles they represent but also the Grace, the healing and the Hope. You say you love me for almost everything I am, not in spite of it but because of it. You stay because my heart is your home.

Seventeen years in love. Fifteen years married. And the band plays on.

(Photo by Grace Designs Photography. Used with permission. From our anniversary photo shoot five years ago. I love we are wearing our rings here.)

This is side A and B of a mix tape that tells our love story. There are many more songs, but this is a framework. Enjoy. (I apologize for the clunky YouTube links.)

Be inspired. Splurge on itunes to make a mix tape for your love. Sneak it on their ipod as a surprise or burn a CD for their car. (Am I the only one who still burns CDs?)
What are your favorite love songs?

Hero. Enrique Iglesias. (Our first song. Dan used these lyrics in my 40th birthday toast.)

Bless the Broken Road. Rascal Flatts. (What a terribly broken road we both walked until we found one another. No regrets. If even one thing had changed we might have never met or loved.)

I Don’t Want To Miss A Thing. Aerosmith. (Armageddon was one of the first movies we snuggled up on the couch and watched together. I still cry when I hear this song.)

Your Arms Feel Like Home. 3 Doors Down. (For the first time in years I was safe. Dan was home.)

All That I Am. Rob Thomas. (Dan’s vows to me.)

Making Memories of Us. Keith Urban.

Better Together. Jack Johnson. (Good years. So good.)

Love Remains the Same. Gavin Rossdale. (We were both lost and wandering apart, but at the root we were still oh so in love.)

You Stay With Me. Faith Hill. (I broke promises. Dan forgave. Dan stayed.)

Let It Be Me. Ray Lamontagne. (Dan asked me to marry him again.)

For You. John Denver. (Our five year vow renewal song.)

These Are the Days. Sugarland. (Grabbing sweet moments.)

Steady As We Go. Dave Matthews Band. (Danica was broken, and we didn’t know how to move.)

Dancing In the Minefields. Andrew Peterson. (We needed to love like Jesus to survive.)

I Won’t Give Up. Jason Mraz. (We couldn’t imagine life would get any harder, and then it did.)

Broken Together. Casting Crowns. (By His Grace alone.)

Thinking Out Loud. Ed Sheeran. (Our Tucson Song.)

Better Days. Goo Goo Dolls. (Our continued anthem and hope.)

Dance Me To the End of Love. The Civil Wars. (Fifteen years. Still Dancing.)

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