I called my cardiologist’s office late last week. It was a call that I should have made weeks, maybe months earlier. In my self-induced sabbatical from medical care, I also neglected seeking medical care in general, so lately, things have gotten marginally scary. I had a list of concerning symptoms for the nurse, and I cringed as an awkward, heavy silence weighed down the phone in my hand. I knew that each of my symptoms individually would raise a red flag, but collectively, they warranted greater concern. I breath-whispered a prayer that she wouldn’t try to insist that I make a trip to the local emergency department. (My fear of the ER is often more crippling than my fear of death). The nurse put me on hold for about three minutes, and she came back on to say, “Hold tight. We will talk to the doctor and call you back”.
She called back quickly, but not fast enough for me to maintain my grasp on the courage that had allowed me to make the call: “The doctor is out of the office on Monday and Tuesday,” she stated, “but he wants to see you on Monday or Tuesday. He is concerned enough that he’s coming in before office hours to meet with you. Can you make that happen? You need to make it happen.” Unfortunately, my specialists are located in Kansas City, about a two to three-hour drive from our home. We had just made a trip to KC a few days prior to see my Mast Cell Specialist. I debated for a second, but it sounded serious enough that if the doctor would shift his schedule to see me, I probably should shift mine as well.
So here we are, my superhero husband and I, sitting at a Starbucks just outside of Kansas City, getting ready to crash on a friend’s air mattress because my body seems to be breaking down once again. It may be the aftermath of the rapid-fire epi pen fiasco after my most recent prolonged Xolair-induced anaphylaxis episode. But some of it is unfamiliar and scary, and I am desperate for some relief.
Next week, Jordan will become ordained in the United Methodist Church. Our little family will travel to Topeka, sit in the stands, and cheer daddy on as he steps into this new stage of ministry. This week, I will hook up to the routine EKG-machine, offer up my hard-earned blood, and we will talk to my cardiologist about the next steps: more infusions, hours sitting in hospital recliners, hooked up to more IV’s, trying to find veins that refuse to be found; more tests, trying to figure out a body that refuses to work the way that it was designed to perform; more specialists, because we haven’t gotten to the actual root of all of these systemic failures; more limits, more ways that I must surrender my sense of “ability,” trading it for this still foreign world of “disability”.
For some reason, I seem to be losing my voice. I cannot sing without getting winded, and this limitation is spirit-crushing for me. I continually fight my battles with my fingers stretched across piano keys, singing at the top of my lungs until all I can do is rest in the sweet goodness of God. I wage this war wielding the weight of my guitar, fingers sustaining the cauloses of fervent worship, eyes shut tight, tears streaming down my cheeks, dripping onto the polished mahogany of my acoustic guitar. As we were battling flooded roads, sheets of rain restricting vision, and praying not to encounter hail during our drive today, I hummed along with the worship music from Jordan’s phone. As Upper room worship played “Surrounded,” I tentatively sang, “This is how I fight my battles…it may feel like I’m surrounded, but I’m surrounded by You.” I remembered a mere three weeks ago, when I sang the same lyrics with the same conviction, but they came out so much stronger and clearer. Today, my words were shaky, my notes were weak, and my voice sounded hollow. It is clear that my strength is waning, and it is manifesting in my weakened voice. Really, if I honestly think about it, my strong voice up to this point has been a surprising blessing. The rest of my body has been pathetically weak for years, so it makes sense that my vocal strength would suffer as well. I hope that this vocal weakening is temporary, partially because much of my identity is wrapped up in my musical skills. And maybe, just maybe, it is time to let that identity go with the other parts that I have had the opportunity to surrender through the process of illness.
I don’t know what happened over the past two weeks, but I am too exhausted to talk or to sing. The car ride was agonizing. Chronic illness seems bearable as long as my personality remains intact; as long as I can think clearly and feel emotionally strong. Unfortunately, chronic illness wears away at my personality, robs me of clear thought, and often hollows me out emotionally.
And then what am I left with?
This is the question. When identity-defining skills, physical health, emotional resilience, energy for relationships, and mental clarity are all stripped away, what do I have left? Is there still a self? Can hope still be found when my resources have been filtered and re-filtered, over and over again, until all that’s left is a wasted, exhausted shadow? Occasionally, my personality peeks through in a stronger moment, but it shrinks back into the shadows as soon as the moment of strength recedes.
Am I still beloved when I have nothing left to give? Am I still worth something if I am immobilized, unintelligent, and unable to contribute?
And God whispers, “Yes, absolutely.”
The deeper question I find myself asking, “Can I still trust God when all of my resources are sapped?”
Can God be trusted when I am left, broken and defenseless?
Can God be trusted when healing has not come and when, in fact, my health continues to deteriorate?
Can God be trusted when I can’t find an advocate, someone to fight for my health when I no longer have the capacity?
Can God be trusted when there are no answers, no solutions, and no silver linings in view?
My answer is a weak yet unwavering “YES. God can be trusted.”
Why? Because He’s here. God is present in this pit, with me, when I have no strength to praise Him. God is holding me in His faithful, warm arms, even when I have nothing to give back to Him, no ministry that I can engage in, no lofty thoughts, no eloquent words. God is here, in Starbucks, on the outskirts of Overland Park, Kansas. God is in the upside-down, inside-out agony of a life riddled with pain and illness. God is there, at rock-bottom, and He’s down lower when we realize that rock bottom is actually even lower than we thought it was yesterday.
God’s faithfulness is not just in His “yes” answers, miraculous physical healings, or massive human displays of glory. God’s faithfulness is in the gentle whisper of “I love you” that lands on my forehead when I am unable to get out of bed. God’s goodness is in the sense of “otherworldliness” that allows me to step outside of my pain for a brief second or two in the midst of the agony. God is faithful here, in the in-between. God is good here, when life hurts. God is merciful here, when I am frustrated and angry. God is working here, when I have no energy left to do any good for anyone. The evidence of God is everywhere, written all over the walls of the sterile offices and hospitals, in the liminal space between when I’ve been and where I’m going, in the frozen-in-time-moments when it seems that heaven touches earth, in joy, in pain, and in the sacred moments of mundane glory. God’s faithfulness is not evidenced most by ostensibly glorious wonders, but by the inexplicable peace and quiet found in the heart of someone whose life seems to be unraveling at the seams.
This is what it means to be held: When the worst happens, and we can still whisper words of praise to our unshaken, unshakable God.
Update after appointment: I’m not in immediate danger cardiac-wise. I still have out of control tachycardia, low blood pressure, fainting , and allergic reactions. There is no obvious heart damage from last week”s anaphylaxis fiasco. The uncontrolled tachycardia (above 200 bpm) can cause heart damage, so it is urgent that we find a way to manage it. We are going to appeal to the insurance for home infusions again, because we have exhausted our medication options due to my allergic reactions. And saline infusions would at least help with my blood volume (my body does not have enough blood for some unknown reason). But the best news right now is that there is no evidence of heart damage on the EKG. Now, for more testing and further trial-and error treatment. Thanks for praying!