Enough!

While sharing some of my story with my amazing infusion nurse, Tracy, I found myself revealing some of the losses in my story. I was honest about how different life looked now from my expectations. The loss of independence, the loss of mental acuity, the loss of physical ability, and the loss of dreams. I expressed how I had worked through those losses and emerged on the other side. With the gentle aptitude of someone truly listening, she said, “But it sounds like you still haven’t accepted it.” While my mind wanted to refute her words, I knew in my heart she was right. One thousand nine hundred and thirty-four days into this, and I was still wrestling with this “new” life I had been given and how it fit into my hopeful future. I logged the conversation in my mind as something I needed to revisit. But I didn’t have to… her sentence was on replay when life got quiet. Simply put, I still battle with this thing called contentment.

A few weeks later, I sat in another cold, white-walled exam room. My father sat to my right, and a CRNP sat before me. She furiously typed screening notes as Dad and I attempted to bring her up to speed on my complex medical history. “So, you first began having these symptoms about two years ago? And they haven’t been able to identify the cause to date? Tell me more about the triggers and what, if anything, helps.” We went over the timeline again, trying to explain it thoroughly. Her fingers continued to fly over the keys. After over 20 minutes of intake, she seemed to understand what I was experiencing and left the room, telling us Dr. A would see me shortly. Several minutes later, two white-coated individuals entered the room, signaling their status as highly educated smart people! They gave a slight nod to each of us, as they introduced themselves. (I mentally noted how Covid had seemed to forever change our U.S. customs, as no hands were extended in greeting.) Dr. A briefly gave his title and signaled to the other young lady introducing her as a first-year resident. He then returned my history orally and asked if I felt he had a good picture. I agreed. And then… the wheels came off the bus. He rather unceremoniously declared that there was no way my symptoms could be as severe as stated. And further said that he didn’t feel there was a medical explanation for my situation. For almost six years, we’ve had to fight for my healthcare. I saw the writing on the wall and mentally spaced out his words. I began begging the Lord for strength not to cry and just get to the car without overflowing eyes. With steel-like nerves, I responded to his questions in mechanical form. We finally left the appointment and started the 30-minute drive home. I just wanted the privacy of my room, a huge box of Kleenex, and somewhere to scream. “Lord,” I inwardly yelled, “You want me to accept this? Am I supposed to find hope and joy in this? Just accept that this is as good as it gets, and somehow, I’m supposed to like it?” With cynical laughter, I felt like Sara of the Old Testament, laughing at God’s promise of a child and a good future.

I tearfully shared all the above with my therapist the following day. I think there was more tears and Kleenex than talking, but she faithfully listened and challenged me to continue hoping in Jesus Christ. She also challenged me to write. To share, yet again, this part of my story. I’ve picked up my laptop literally hundreds of times since then and stared at a blank Word document. I’ve pressed record on my phone trying to just talk it out. Each place so fresh and ready to be filled with words of disappointment and then hope and encouragement. But instead of feeling Anne of Green Gables’ glory that “Every day is a new day without any mistakes in it yet.”[1], I’ve felt trapped in this deep inward struggle. My mind and heart have been a bloody battleground of distrust and hope, failure and progress, denial and acceptance, baffling fear and overwhelming trust. But trying to put that on paper in words that made even the slightest sense felt as insurmountable as Mt. Everest.

I’m often told I’m an inspiration to others. My precious village encourages my heart by reminding me of my importance in their world even while sick and largely homebound. Yet, at times, want to scream, “But what if I don’t feel like an inspiration anymore? What if I feel like I have nothing to offer the world? I’m not strong. I’m not courageous. I’m not inspirational. I’m broken. I’m fearful. I’m tapped out.”

And my heavenly Father gently whispers back, “It’s okay. I don’t need your usefulness. I don’t need your strength. I do not depend on your courage. I don’t need your hope to keep the world going. I just want a relationship with you. I want to know your heart. I want to hear your pain. I want to hear about your impossible dreams. I want it all, my daughter. Just rest in Me. Mourn the loss. Take a moment to sit in the past. Has My faithfulness been contingent on your courage? Look over your shoulder and remember the times I’ve been with you. Will I leave you now? Take a jaunt down Faithfulness Lane and recall that I’ve never required action from you to be God of all. My love covers your fear. My strength exceeds your lack of inspiration. I am the same in the past when you felt strong, today when you feel weak, and I will forever be your same God in the future as your emotions fluctuate. I simply want a connection with you – my created masterpiece. So, sit. Rest. Remember. And when you’re ready, we’ll return and tackle the world together. I am enough, my treasured daughter.”

Inhale. Exhale. Yahweh.

[1] Lucy Maud Montgomery, Anne of Green Gables