A Change of Perspective

We were a motley crew gathered in the courtyard of that hotel. But one thing we shared in common brought us together: multiple chemical sensitivity.

My husband Michael has MCS, and exposure to chemicals found in common household items, cleaners, pesticides, paints, and fragrance products make people like him very sick. The hotel had one building devoted to accommodating people with this chronic health condition.

Most people booked a room because they were in town for treatment by a renowned MCS doctor. Michael and I booked it because we wanted to take a short vacation and it was the only local place we could think of that could accommodate his complicated allergies.

A few of us gathered outside and struck up a casual conversation that quickly turned to personal stories—how their health broke, how long they had been sick, all the therapies and medications they tried, and what brought them to the hotel.

Surprisingly, one woman was in town for a check-up after significant improvement in her condition. “I’m so exhausted today, but that’s mostly because I was out line dancing until 5 a.m. I used to be sick, but now I’m doing much better. You really can get better. It’s a journey.”

My eyebrows raised. “Line dancing until 5 a.m.?” Everyone else standing there was just trying to survive. While her words were intended to be an encouragement, it was a little irritating to hear them from someone who had enviably left the chronic illness life behind. Others probably felt agitation creeping in, too.

As we parted ways with the dancer and the rest of the patients to unload our luggage from the car, another guest arrived.

I hesitated to exhale for fear she’d flutter away like a dandelion seed. She was extremely thin and frail—just a wisp of her former self, I imagine.  Though the sun beat down with its August glare, clothing covered nearly every inch of her body, and she wore a large, wide-brimmed hat and sunglasses to protect her face. Tubes connected her to an oxygen machine, but someone had to pull the tank for her—she didn’t have the strength.

She looks like she’s allergic to the whole world, I thought.

I looked over at Michael pulling our heavy suitcases out of the trunk. He wiped the sweat off his brow, smiled weakly, and carried them to our hotel room. He’d been ill for four years, and his sickness required these specialized accommodations. Yet here we were kicking off a mini vacation before our new baby arrived. Even with chronic fatigue, the new hotel guest made him seem like a vibrant, healthy man in his prime.

Suddenly, he was an athlete.

Press On

“I can’t take it anymore!”

Have you ever felt that way? I know I have. I usually spend those days off and on in a puddle of tears. And all the Little Debbie snack cakes I pull from the stash in our closet can’t make it better.

Runners call it “the wall.” In marathons it happens within the final few miles.  They say you feel like you’re running on empty and have nothing left. But the runners who just keep putting one foot in front of the other and don’t give up finish the race.

In childbirth, they call it transition. After hours of labor, the contractions are so intense that mom feels she’s not up to the task. When she cries out, “I can’t do this,” that’s a sure sign that baby’s almost here.

In fact, when I was laboring with our first baby, I remember saying those exact words. After he was born, I thought: This. Will. Be. Our. Only. Child. Because I can never do that again. Yet, I labored again 3 years later when our little girl was born. And I must’ve said “I can’t do this” a hundred times before she arrived.

All of these examples show us we can endure more than we think.  I look at our current life circumstances and wonder—how are we going to make this work for years ahead? I’m completely overwhelmed at the prospect. Yet I felt the very same way when Michael’s health struggles began seven years ago. And here we are, still moving forward.

Several of our friends and family members have endured sickness and hardship for decades. I’ll bet they were overwhelmed at the beginning of their journey, too. We marvel at how they persevere faithfully after so much suffering.

When we feel like we can’t go on, how do we press on?

I think there are three keys to long-term endurance in the midst of intense difficulty.

  1. Don’t think too far ahead. Forget about the miles in front of you, the hours of labor, or the years of struggle. Only focus on putting one foot in front of the other,  living through the next moment without quitting or losing your mind. Even Jesus said, “Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (Matthew 6:34).

2. Take a break. When Elijah got to the end of his rope, he begged God, “Please, just kill me already” (1 Kings 19 paraphrased). God replaced his despair with truth, gave him rest, and fed him a meal.

3. Trust. The Bible says that God’s grace is sufficient for whatever each day holds.  Paul told the Corinthians, “God is able to make all grace abound toward you, that you, always having all sufficiency in all things, may have an abundance for every good work” (2 Corinthians 9:8) Whether your day is filled with struggle or offers some welcome relief, He can give you what you need to keep going.

So the next time you say to yourself “I can’t take it anymore!” don’t look at the long road ahead. (And for goodness sake, put down those Little Debbies!) Focus only on the next moment. Give yourself a break. And know that He will help you press on.

A Life-Giving Home for Chronic Illness

I’ve been reading a fantastic book called The Lifegiving Home by Sally Clarkson. It’s really stirred my mind to think about how to create an atmosphere of beauty, love, acceptance, joy, and refuge, even in our small, ordinary, tightly packed spaces.

When your life is filled with some discouraging prospects, when you can’t leave the house much due to your health condition, or when a lot of suffering takes place there, what can you do to counter a spirit of hopelessness in your home?

Environment makes a bigger difference than we might think.

Emmanuel & Chronic Illness

As the months and years roll on, chronic illness has its own way of wearing you out and dampening down the allure of this life.

Broken bodies and interrupted lives long for deliverance…for everything to be made right again. We want someone to understand our pain and to do something about it.

In walks Emmanuel, which translated means “God with us.” Could that be true? Could eternal majesty dwell among broken people?

Yes! Jesus, God’s Son, came down from heaven, eternity, and immortality and wrapped himself in frail human flesh.

He experienced and bore all of our sickness and infirmities. He was tempted in every way as we are but never sinned.

Living His Story

We just returned from the best trip we ever had—second to our honeymoon. But it wasn’t just a vacation. We traveled almost 700 miles to see people we’d never met and to stay with their friends whom we’d never seen. It was the most adventurous thing Michael and I have done in years.

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What brought a couple with little money, lots of stress, and complicated physical infirmities to the Colorado Rockies? It all started one day when I was looking for something online related to our blog and accidentally bumped into a very similar blog called AlwaysSickAlwaysLoved.com.

Truth-Based Expectations

“It is even more crucial to have realistic, truth-based expectations for our lives. What does God say my normal life is supposed to look like?…If our expectations are not based on biblical truth, when things change we will be like my students with a poor substitute teacher. We will freak. We will get angry and frustrated. We will resist fervently all that goes against our expectations. We will find ourselves living in a sea of persistent, discouraging confusion. This is why our expectations in life must be based on the Bible. They must have a solid gospel-centered focus.” (Michael Robble in Always Sick, Always Loved; page 73)

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Did you wake up this morning to another day of living an unexpected life? I did.

So many things that have happened to us in the last six years I would not have pictured for myself or my family. We all have expectations of how life should go, with big plans for the future, and a vision of what we’d like to accomplish. And there’s nothing wrong with having a vision or a plan. But as someone once said, “Make your plans, but carry a big eraser.”

Grit, Grace & New Friends

I would never claim to fully understand the chronic illness experience. But after living six years with a chronically ill husband, I can’t help but see some parallels between long-term sickness and natural childbirth.

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When I was pregnant with our son, I attended extensive birthing classes, learned relaxation techniques,  and even had regular chiropractic adjustments so I would be well-aligned for the smoothest possible delivery. When the big day came, these measures helped me to cope well up to a certain point—even while laboring in rush hour traffic through downtown! But as it became more physically intense, everything I learned just flew out the window. I was in agony and nothing helped.  Our sweet Lincoln made his entrance into the world just by sheer grit and the grace of God!

Finding Refreshment to Stay the Course

Continually dealing with illness can be discouraging and exhausting. You may be regularly putting out fires while jumping from one crisis to another, or simply enduring persistent pain—which offers its own brand of wear-out. We all know the chronic illness journey is a marathon, not a sprint. So how can we keep ourselves going for the long-haul?

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Whether you are the one who is ill or the caretaker, here are some ideas: