Today is one year since I was admitted to Children’s hospital for malnutrition.
To describe what life was like at that time is agonizing. I was always exhausted, always cold. My hair was falling out in clumps, my skin was cracking, my eyes were dull and glazed over. My days consisted of trying to do what I needed and wanted, only to collapse from exhaustion into bed. Every thing was hard. Getting dressed was hard. Taking a shower was hard. Brushing my hair was hard. I could feel life swirling around me, just out of reach. I did my best to retain as much life as possible, but it was as if I were trying to draw water with a cracked bucket.
I arrived to parties after the food was put away. I left early. I barely left the house, except for doctor appointments. I was the only person in my world experiencing what I was experiencing, and you can’t imagine how lonely that is. How do I relate to someone who has never been held down while a nurse crams a tube up your nose and down your throat? How do I explain the weeks after, of panic attacks and insomnia because I just couldn’t shake that flight/fight/freeze response? How do I casually mention that to this day I have nightmares of not being able to breathe as the tube loops again and again in my throat? I watched friends go out, date, start college, finish college, but I was stuck. Frozen in time, unable to move from the agonizing state I was in. By the time I was admitted I was beginning to lose hope.
We had a phone call scheduled with Dr. Hsu to see whether he would confirm the MALS diagnosis. But that week in the hospital, with psychologists doing their best to make me admit to an eating disorder, I felt myself dying a little.
I can vividly remember going out into the hall of the floor I was on. Mom was asleep. I rolled my IV pole with my feed bag out to the end of the hall, the barely there hum of the feeding pump alerting me to the incoming sensation of cold liquid slipping through the tube. At the end of the hall there were floor to ceiling windows that overlooked Birmingham.
The city looked so peaceful at night. In the quiet of that hallway, with the occasional machinery beeping and nurse button calls and the distinct smell of rubbing alcohol, I looked out at the city and wondered if this was the what the rest of my life looked like.
I wanted so desperately to exist within the peace the nighttime city portrayed.
I wanted to become one with the horizon of skyscrapers, the empty parks, lone pedestrians. I wondered about their lives. I wondered about the offices still alight in the late hours. Was someone working late? Scrambling to meet a deadline? Or the person jogging on the sidewalks. Why were they running? Perhaps they are like me and can’t bear to be alone with their thoughts. I have often found that the pounding of your feet on the pavement to the beat of your favorite song can successfully quiet the overwhelming thoughts.
I would have given anything in that moment to be just about anyone else. I see why Paul pleaded 3 times that his burden be taken. Why not once? Because if there’s a chance the answer might change, you have to take it.
The 9 days spent in the hospital were quite possibly the hardest days of my life. I was at the end of my rope, unsure how long I could physically and emotionally continue. I wanted to do so much, be so much, but would I ever get the chance? I had already missed a semester of school, I wasn’t able to work. Was this really the grand plan God had for me? A slow painful death via starvation? I contemplated this and much more on that dark night in the hallway of the hospital.
When Dr. Hsu called I couldn’t breathe. I was terrified. If this didn’t work then I didn’t have a backup plan. I rolled my IV over to the hospital couch to sit beside my mother. It took me a moment to realize that he was indeed confirming my diagnosis of MALS. Suddenly, the floodgate of hope was burst open. The possibility of relief, of healing, became so real, so tangible. Maybe there really was more than this. Maybe this wasn’t the end after all. Hope flickered, like the office lights in the buildings from the window. Faint, but there.
There were many moments when I wondered where God was. I struggled to feel His comfort and peace.
He didn’t feel near. But then again, wasn’t He? Wasn’t He there in that quiet hallway? Wasn’t His comfort illuminated by the faint lights from the buildings just across from me? Wasn’t His peace found within the unspoken poetry I seemed to be able to find in something as small as a beeping IV machine? Small, quiet, sustaining moments of hope. Grace, moment to moment. A verse, a song, a quote brought unexpectedly to mind right before I slipped under the dark waters of pain. Acting as a piece of driftwood, of which I clung to for survival. It wasn’t dramatic, it wasn’t loud or deeply profound in the everyday sense of the word. Just a still, small voice. Quietly whispering grace and truth between the nightmares and despair. He was and is there. Always.
In a world that prides itself on being the loudest, the most dramatic, it can be hard to quiet the room around us. But I promise you, if you listen hard enough, you will hear Him. You will see Him. The new song that makes you feel a little more motivated to get out of bed, the pastor who comes alongside you to encourage and pray, in the brief moments of stillness throughout your week. Small respites from the chaos surrounding. Small moments of grace. Small bits of comfort from a God who is always faithful. Small hope, from a God who is always there.
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I love you, and I glorify God because of you! Keep writing! God has gifted you with an amazing ability. So proud of you and so thankful we get to do life together. ~ Jeanette