“I feel like your identity has become your illness. It’s like you’ve given up and given into it. I married a fighter. Where is she?”
Ouch. Nothing like a romantic marathon date at the Melting Pot to give my husband and I the space to speak the hard. Amidst the four courses (of delightful breads dipped in beer infused cheese, yummy salad, steak and lobster soaked in succulence, and a chocolate ecstasy that I am sure must have been invented by the angels) we planned, we reminisced, we cried (okay, I cried), we laughed a little, we fought (ahem, I mean “discussed”) a lot, we sat in silence…we did the work of any relationship that dares have a chance.
I’ve been walking around raw since that night as I grapple with the past couple years that have brought on my brave husband’s declaration (because let’s face it – it takes some chutzpah to say such things in the tightrope walk of a marriage relationship navigating chronic illness). We both lobbed our fair share of complaints and critiques at each other that night as lovingly as we could muster. (Beer, wine and warm gooey fondue helps all those hard words go down a little easier. Just a little conflict management tip for all ya’ll couples out there. Bathe all hard conversations in wine, cheese and chocolate. It’s practically biblical.) We walked out from our date fingers laced determined to keep some shred of connection going, but we were both lost in our own worlds.
I’ll admit. At first, I wanted to point fingers. I wanted to sulk in the injustice of his complaints. “But he just doesn’t understand what it’s like!” my inner child tantrummed. And, I may have sulked a little. Just a little. I tossed and turned throughout the night until I finally gave up trying to escape into sleep and did the only things I knew how. I grabbed my prayer journal, pen, Bible, pillow and blanky (yes, I have a fluffy blanket that I carry around the house like Lioness. Shhhh.) and tiptoed down to the couch seeking the only truth that really mattered.
“Lord, show me Your truth. Have I let my illness become my identity? Have I given up? Am I not fighting this hard enough?”
At His feet, in the middle of the night with my boys big and small asleep upstairs, in the midst of an imperfect living room strewn with toys and laundry that had been waiting to be folded for days, His words whispered truth to my tired and aching heart. Each tear that dropped on my journal held conviction yet slowly gave way to peace and hope. This is the only way God seems to do His work in me. Painful. Heart-wrenching at times. But blanketed in grace. (Usually in the middle of the night – when I have stopped talking long enough to listen.) Often there are no words. That night I didn’t pen many. I just abided. Abided in Him desperately seeking truth I could grasp. As I drifted to sleep I could feel Him whisper…
Keep seeking Me. Depend on Me. Don’t protect yourself. Trust. Stop living in fear.
When did I become so afraid?
I’ve been grappling with this question this past week. After the high of a diagnosis and hope of a cure, the past few years have been filled with unsuccessful medical treatments, hospitals and bed-rest, small successes followed by big failures. Every day unpredictable. I stepped out of a job, out of ministry, out of life outside my home. And even even life inside my home is often tough to manage.
It has left me unsure and afraid. (Very different than who I was even 5 years ago.) Fearful to dream. Fearful to make plans. Fearful of the next wave of pain I can’t control. Fearful of what this illness is doing to my marriage and my children. Fearful of another bad day. Scared of so many unknowns. It can paralyze me. Even simple tasks become overwhelming. So many days spent in survival mode. It’s where I’ve been stuck.
It’s a fine line those of us with chronic illness walk. By the very nature of the CHRONIC in chronic illness is the lack of hope that our health status will change. So we deal by working towards acceptance. Grieving what has been lost. Finding acceptance and present-mindfulness in what IS. But how do you accept and cope while still holding onto hope? While still praying for healing? While still allowing yourself to dream things are possible?
It’s a slippery slope. Acceptance, when not tempered by hope and vigilance, leads to apathy. Apathy to discouragement. Discouragement to depression. And depression eventually brings us to despair. This cycle leaves me drained and numb to… Everything. I am gripped by an inability to step forward towards anything for fear of another wave of disappointment, loss and grief.
One more set of canceled plans. One more activity I have to let go. One more relationship that fades away when I am no longer able to keep up. One more ball I drop when pain flares. Disappointment. Disappointing others because I can’t do what I once could. So am I still me? Or am I this nebulous illness?
So, is my husband right? Have I given up and given in to this illness?
I wish it were as simple as a yes or no answer. I know he knows this. I don’t begrudge him his saying so. I needed to hear it. This is what I have been able to figure out so far…
I have grieved my life pre-illness. I have grieved the loss of physical and even mental strength. I have come to an acceptance that illness may always be a part of my life here on earth. I truly (mostly) believe anything, no matter how crappy, can be redeemed. He has given me strength to get through days I never thought I would survive. He’s blessed me by showing me ways my pain has not been wasted. (And some days I even remember this.)
But, somewhere, particularly over this past year, I did begin to give in to the pain. I let go of who I was designed to be and do. I began to feel helpless. Act helpless to illness’s attacks. I feared pain getting out of control and failing at life in the big and the small. Instead of risking living with pain, I often escaped to my bed. Instead of trusting God to give me the perseverance to get through each day, I took it upon myself to hoard my energy and my time – just in case. I’ve been living a “Just in Case” life. Stockpiling energy and guarding my body like I was prepping for Armageddon. When I would feel a prompting to do something I would look at my pain and my fatigue – not my God who is bigger than both.
Don’t get me wrong. Sometimes rest is the right choice. Some days need to be spent in bed. My condition requires that I lay down every few hours. But only as a means to get back to the business of living. Not as a means of escape. Or because I am afraid of what may happen. The only way to know the difference is discernment. The only way to have discernment is to stay connected to the One who created this body of mine. Who is there waiting to show His strength through my weakness.
It’s not about me. It’s about Him. Who He created me to be and why He placed me at this place, at this time, in this jacked up body.
He made me a fighter. I’ve been fighting since I was in the womb (my mom loves to tell the story of how her feisty daughter broke her ribs en utero – I guess I didn’t like the accommodations). I came out swinging.
I am reclaiming myself piece by piece.
I stop guarding. I stop protecting.
I take a walk.
I call a friend.
I make my husband lunch.
I throw a ball with my son.
I push through a household chore.
I let myself sleep or lay down when needed without guilt. But I make sure I don’t stay there. I get up.
I blog. After months of shamefully not posting.
Little by little. Step by step.
I will fail, I will fall. In any given week, day or hour I may give up or give in. Acceptance to apathy. Apathy to discouragement. Discouragement to depression. Depression to despair.
Through the words of my husband, God reminded me it’s time to get back up again. And keep on getting back up. Thanks, hon.
My favorite verse when it comes to getting back up after falling flat on your face (AGAIN AND AGAIN!)
28 Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 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 40:28-31 NIV