As Christmas 2019 merged into New Years, 2020 exponentially got increasingly more serious for our family with each medical crisis. In late January, a virus hit Jordan the week before his birthday that attacked his pancreas, leaving him with a blood sugar of 589 and a diagnosis of type one diabetes at age 33. We were left speechless in the wake of a temporary virus with potentially permanent consequences. We know of one other individual who developed type one diabetes as an adult as a result of a virus. When near-death experiences come to our attention in retrospect, we sigh, feeling as if having just dodged a bullet, but we often miss the gravity of the situation in the moment. For us, this was a grace this winter. Jordan’s dangerouly high blood sugar levels were out of our awareness until he was in a safer range. We felt great relief as he responded to insulin. We did not, however, know how much gravity we would have to face in the coming months.
Early in the fall of 2019, I met with a Rheumatologist in Kansas City, who is a good friend of my primary care doctor whom I trust and love. I have come to expect little out of specialist appointments. With rare and often unknown diagnoses, I have learned to protect any expectations by putting my guard up. Any extra information that might come out these appointments is exciting, but not guaranteed. After a prolonged game of phone tag, Dr. Wang finally reached me, and we were able to have a phone appointment the week after Christmas. She shared that yes, I have a definitive Autoimmune diagnosis (besides Raynaud’s), and my full-body x-rays showed wide-spread inflammation, pointing to fusion of axial joints along my vertebrae, as well as hips, shoulders, knees, and wrists. (Basically, all joints except for toes and ankles). What this means is that my body is attacking its joints, and they are slowly fusing together. This fusion of joints results in long-term immobility and disability. The goal in treatment is to prevent further inflammation and increased fusion of joints.
We discussed treatment options, which included steroids (which I do not tolerate) and a medication called methotrexate, an immunosuppressant medication often used to treat cancer as well as autoimmune conditions such as rheumatoid arthritis and other forms of autoimmune arthritis. My stomach flip-flopped as we discussed potential side effects and dangers of methotrexate, but it seemed like the best option. Because methotrexate is an immunosuppressant, and because we were smack in the middle of a winter that felt a little bit like the game Oregon Trail that I played in elementary school computer labs as a kid, where if we blinked, we died of dysentery, I waited a couple months to start the medication, until right before our country was overshadowed by the ominous plague name Corona. Good timing.
As soon as we started the injection, I began to pick up every bug and virus that entered our house. I was sick for the first two weeks on methotrexate, and in world news, COVID-19 took the planet by force. As bodies piled up in China, and then in France, we tried to avoid the news.
Yes, I was fragile, and yes, I was immunosuppressed, but we still felt insulated in the middle of Kansas: Until we were not. When the social distancing began, they started by closing Disney and cancelling March Madness.
Our jaws dropped. Sports? Disney??
People were heart-broken. But no one truly understood the risk that COVID presented, not until people started to lose individuals they knew, friends of friends, grandparents, aunts, uncles, cousins. Then it started getting real. About the time that it started getting real, I developed a fever. I woke with a high fever on a Wednesday morning around 2 AM and was awake until dawn, with my tears rolling down my cheeks, pooling in my ear canals, as I lay on my back, begging God to let me stay with my family, asking Him to not let it be COVID. Two days later, I was admitted to the hospital with Sepsis. Somehow, my port had developed an infection that went to my blood stream. A day later, I had double-lung collapse due to ATC and was placed on a bi-pap machine because my body was too fragile to sustain the procedure involved in placing me on a ventilator.
The week before sepsis hit, I met with a new counselor for the first time. As we talked, I shared about how frustrated I get when people treat me as “fragile.”
“I’m not fragile,” I declared, “I am tough. I can handle stuff. I don’t know why people treat me like a china doll.”
My husband would have to call and cancel our next meeting because this “not-fragile” woman was lying in a bed in ICU, hanging in a tenuous balance between life and death. We had our second appointment today by teleconference, a week after I left the hospital. I chuckled as I mentioned sheepishly about the irony of my stubborn resistance three weeks proir against the identity of “fragile,” and then my ensuing dance with death.
Though mine might be more front and center, it seems that the world is having to face its fragility in this time in history. COVID takes whom it will take, and it seems that there is no stopping it’s path of destruction. Though it passes over children for the most part, it hits the weaker, the older, the immunocompromised with a vengeance, and we all watch helplessly as those we love or know are quarantined and then forced to die alone. It is agonizing.
I am fragile.
My life is fragile. This swiftly-spinning planet, tilted just perfectly at 23.5 degrees, balances on the edge of a pin. We, humanity, grasp for the illusion of control, but we are all just hanging in the balance.
In the absence of a benevolent Creator, this is devastating news. It’s all just chance, and we are, as the Bible says, “simply a mist, here today and gone tomorrow(James 4:14).”
What is our life, but simply a breath? What is our blue and green home but a speck in the universe? We are the most fragile of the fragile, balanced on the head of a pin, living our lives as if we were gods and goddesses.
I’m fragile. As I lay in that ICU bed, the doctors discussing the least threatening option giving me the best chance of survival without killing me in the process, I was utterly helpless to save myself. I whispered half-lucid prayers. I felt the flittering heartbeat, struggling to pump blood with a blood pressure of a nearly non-existent 60/ 30.
My body was out of my control. I was no longer stubborn, or tough, or able to control anything about my situation. I was dependent, fragile, and helpless. And God held me in His careful hand. In my fragile state, I was keenly aware of the attentive, constant Keeper who held me strongly and safely in my in-between state of existence.
It is tempting, two weeks after sepsis, now walking laps around our little neighborhood circle, throwing frisbee with my kids, to feel strong again. I wrestle with my own stubborn need to tell myself that I can control my life and the lives of those whom I love. But the reality is that I am no more powerful today than I was two weeks ago as I hovered at the precipice that dropped into eternity. Our frailty opens up thin space for us, because it opens us up to the power of God working in and through us.
Our need for control clogs up our pathway to the power of God, because our false sense of self-sufficiency creates a bloated fullness, leaving no space for the Lord of the Universe who is so gentle that He will not force Himself upon us. We become too full of ourselves to make space for our Creator, Sustainer, and Finisher of our faith.
And paradoxically, in our self-sufficiency, we become impotent, powerless, and dangerous.
This is the upside-down kingdom; the place where dependency creates power and frailty leads to transformation and growth. This is the kingdom that is descending right now, kissing earth, as what is shakable is dislodged and sluffed off, and we are left with the eternal. It hurts, oh it hurts like hell. Ask Eustace from C. S. Lewis’s Voyage of the Dawn Treader. This process is the peeling off of the fake skin that we have worn so long that it has grown roots into the depths of our being. The process of being made real is agonizing, as we let go of the parts of “self” that we have long believed to be true self, only to discover that they were merely lies from the pit of hell, blocking who God created us to become.
So, in reality, I’m fragile. I’m a china doll, inside and outside. I am more physically fragile than 99 percent of the population, which places me at an advantage: I cannot live in disillusionment about my frailty (even though I have a history of trying). It’s obvious. I have a number of near-death experiences, medical diagnoses, and physical traumas to show for it.
I will choose not to live with a pretense of “toughness.” I’m not hardy, I’m not strong, I’m not immune. I’m vulnerable. I’m deeply and painfully vulnerable. I can embrace this vulnerability, because I am deeply loved by the One who reigns above it all. He is the one who thinks more thoughts about me than the number of grains of sand upon the earth (Psalm 139:16-17). He is the one who clothes the lilies of the field, feeds the birds of the air (Matthew 6), and numbers the hairs on my head. He is the one who set the earth spinning and knows when it will stop. He is sovereign.
He is good. Oh, He is so good. In the deep quiet of the night, I hear His love songs to me. In the moments of worship, I feel His lips press my forehead with a divine kiss. In the heights of praise, I feel Him rejoicing over me with singing (Zephaniah 3:17). He delights in me, and I in Him. And He loves me. The God of the universe loves me. He will never leave, nor forsake me: Not in life, not in death, not ever. He is careful, so careful, with me, His beloved. He knows my frame. He formed my substance and knows the delicate balance that sustains me. And He attends to me as a loving shepherd to His sheep.
I am frail, I am beloved by the Sovereign God, and I am safe in His hand. In this reality, I am out of control and unafraid. There is no fear in this perfect love, even in my frailty. I wasn’t in danger in that ICU room. I sensed that. I was pretty sure that it wasn’t my time to leave the planet yet, but in the Lord, living is Christ and death is gain, so it made little difference in the long run.
I share all of this to say: Be at peace. You’ve never been in control, nor were you ever meant to be in control. But the One who is in control attends to you like no one else could. He is Sovereign. He is good. And oh, how He loves us. And so, we can rest, frailty and all, under the shadow of His wings.