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This Sick Life

Learning to live with chronic illness

Published on:
November 23, 2016
Read time:
5 min.
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In a couple months, a dentist will grind all of my teeth down to stubs and replace them with porcelain crowns. Long life-story short, I woke up sick with a fat face when I was fourteen. Two years later doctors told me I have an autoimmune disorder called Sjögren’s syndrome, which explains why my mouth is as dry as chalk and my fillings never want to follow instructions to hold down the fort for all of my rotting teeth.

Twenty-seven years old this month, and I’ve had to ask a lot of people for help.

Brené Brown told me the other day in the car (on audio book, of course) that I will never grow out of needing help. In all honesty, this made me want to jam the parking brake on my Toyota Camry right in the middle of traffic. What’s the point of enduring the pain, the inching along to those flashing brake lights, banging my head on the steering wheel as I crawl my way home?

You’re telling me that no matter what model Tesla I pull into my zillion-dollar Zillow estate, I will always need help?

“The truth is,” Brené said with a Texan lilt, “that no amount of money, influence, resources, or determination will change our physical, emotional, and spiritual dependence on others. Not at the beginning of our lives, not in the messy middle, and not at the end.”

So here I am—right in the messy middle.

You’re telling me that no matter what model Tesla I pull into my zillion-dollar Zillow estate, I will always need help?
Ashley Tieperman

Moving 

I guess I’ve already learned this lesson seeing that over the last ten years, I have lived with twenty-seven different humans, three cats, three dogs, and a school of fish. (I just made a list. I’m only halfway through today’s first cup of coffee, so I could have even missed a few.)

Living with people teaches you things. Of course, there’s the normal stuff, like asking The Twenty-seven, “Hey, can you reach those paper towels on the top shelf?” Or, “Can you button this shirt in the back?”

We cannot reach all the things in this life on our own. I have The Twenty-seven to thank for this life lesson.

Living with people while you’re chronically ill speeds up this process of learning. I’ve had to ask The Twenty-seven the things your grandmother asks, “Can you pick me up some soup?” Or, “Can you bring me my medicine?”

Because right here, in the messy middle, I am the baby or the geriatric in diapers. I need help. I need help with rides to certain doctors’ appointments. I need help with my frustrations when I’m stuck in bed or must say no to a spontaneous, exhausting (to me) adventure.

This week, I’m moving again. This time to family that has to live with me in this current season of This Sick Life when I’m up against the biggest financial health hurdle I’ve ever had—accumulating an amount of money I could never reach on my own. 

In these months of trying to raise at least $50,000 for a new smile, I have felt like a pole vaulter on full speed adrenaline, sprinting to make it over the bar at a new personal record height. And in all the milliseconds when I fantasize about ignoring Brené and just figuring it out on my own, I am a pole vaulter trying to reach new heights but without a pole.

I’ll be honest, because I’m told that’s what I do best: I’ve had days in this asking for help business where I’ve given in to frantic Google searches, typing in “Top earning jobs” or “Get rich quick!” I’ll wake up every day with a smile on my face because I’ll have infinite amounts of money, influence, resources, and determination to live a pain-free life.

I dream of the day when I won’t need help from anyone.
Ashley Tieperman

I dream of the day when I won’t need help from anyone. The day I never have to send another email with the subject: Here’s why my sickness means I need help. The day I’ll never have to write another story with the title: Here’s what I need. Help. Please.

You see, I will have the very best health care. Scratch that—I’ll pay for procedures and prescriptions with straight cash. I’ll participate in every clinical trial because I’ll have the world’s best doctors on speed-text to hit me up with all the new mind-blowing drugs.

Okay, Brené, I hear you. I’ll snap out of this fantasy.

The truth is no matter what I possess, I can’t survive without The Twenty-seven. And I can’t survive without the hundreds of others who have moved me through This Sick Life. 

Touching

I have been touched by a lot of people. Literally. Especially Christians.

That summer day in high school when I woke up with a fat face marks the day that people started touching me. Nurses and doctors started poking and prodding.

Then Christians started laying hands on me.

Now, before you start tweeting to me about touching and healing and the power of God, I need you to hear me out. I completely believe in the touch of Jesus today. And if you are one of the people in my life who has touched me while praying over me, please don’t think that I wish your hands to fall off.

I swallowed back a lump of tears when a seminary professor shared the story in Mark 5 about the father crying out for the healing of his daughter. Instantly, I flashed to my own dad weeping on his knees, holding my hand while softly whispering, “I wish I could take all your pain away.”

Then I swallowed a whole lot harder when he read the part about the sick woman who reached out to touch Jesus’ clothes for healing. In a tender response, Jesus said to her, “Daughter, your faith has healed you. Go in peace and be freed from your suffering” (Mark 5:34).

I need your prayers and I need your hands.

But I need you to know that This Sick Life might always keep collecting episodes and seasons.
Ashley Tieperman

But I need you to know that This Sick Life might always keep collecting episodes and seasons. This might be the part about spiritual dependence for me because pain certainly brings me to my knees. Past, present, and future pain all make me realize that physically, emotionally, and spiritually, I am a broken human.

There’s an uncomfortable part of our stories that we like to skip, the part where we’re meant to cry out in frustration without our rider on the white horse. Maybe I was meant to feel frustrated with This Sick Life so that I might anxiously await renewal, a day where there will be no more crying or pain. Maybe I was meant to learn how to depend on God and other people more than I like to.

Living 

I remember when the tooth fairy used to leave a dollar under my pillow for losing a baby tooth. We celebrated the loss of teeth. We earned a cash reward for growing up, for making space for budding molars, as if we did anything to cause the growth except a little wiggle.

I have an autoimmune disorder that’s common for women in their 60s, and sometimes makes me feel like I’m in my 80s. I don’t exactly want to celebrate losing my teeth at age twenty-seven, but maybe I can learn. Maybe that’s what my messy middle looks like today—welcoming the tooth fairy. 

People from my past hear about my need and reach out to help. Every time I feel the spark of reward like the magical gift under my pillow. 

These are my people.

This is my family who calls to say, “We’re here for you.”

This is my old boss who says, “Ashley deserves all the help in the world.”

This is my new dentist friend who says, “We can do this.”

This is my living. My leaning on others to reach and carry for me with wide open, loving arms. 

This is me crawling my way home. 

Because I might not even know my way home without my need to crawl.

Cover image by Mathew MacQuarrie.

Ashley Tieperman

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