Monday, February 29, is World Rare Disease Day 2016. It is a day to raise awareness of rare disorders, the need for better treatment, and how rare disorders affect patients and their families.
In honor of the day, I thought I would share some life lessons from my first year of living with a rare diagnosis.
We are broken
A diagnosis can bring the hope for treatment and healing. But first and foremost, it carries the recognition that something is broken.
Brokenness is a part of human reality. We all suffer in many ways, and we all have our limitations. As the Psalmist says, “[God] remembers that we are dust. As for mortals, their days are like grass…for the wind passes over it, and it is gone.” (Psalm 103:14b-16a, NRSV)
But realizing our brokenness is often the first step to overcoming it. Until we realize something needs healing, it cannot be healed.
When we acknowledge our brokenness, we can draw closer to each other as human beings who need love and grace. And we can turn to Him who “heals the brokenhearted, and binds up their wounds.” (Ps. 147:3)
There are great riches in clay jars
Brokenness hurts. But with brokenness can come blessing – sometimes because of, sometimes in spite of, the brokenness.
Brokenness brings opportunity. Moments of need are a chance to form new relationships and deepen old ones. Limitations are a chance to push against resistance and become more faithful. And weakness is a chance to experience the grace and power of God at work in us.
The Apostle Paul had a chronic “thorn in the side” that he repeatedly asked the Lord to take away. “But he said to me, ‘My grace is sufficient for you, for power is made perfect in weakness.’ So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong.” (2 Corinthians 12:9-10)
We are wonderfully made
Yes, we are broken. But we are also masterworks made by One who loves us.
Our bodies are crafted with such delicacy that changing a single amino acid affects the wellbeing of the whole body. Our bodies have an infinite number of building blocks, perform an infinite number of processes without needing to be directed, and have an amazing capacity to heal. And we are more than our bodies – each of us has a spirit capable of connecting with our Creator in the simplest and most mysterious of ways. We are made in the image of God.
Reflecting on the wonder of God’s creation and our place in it, the Psalmist exclaimed, “When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is mankind that you are mindful of them, human beings that you care for them? You have made them a little lower than the angels and crowned them with glory and honor.” (Ps. 8:3-5, NIV)
We are dearly and faithfully loved
If my rare disease teaches anything, it is God’s faithfulness. Even when He lets us walk through the fire and the valley where death lurks in the shadows, He walks with us.
He has answered many prayers and provided for many of my physical needs. More importantly, He has met spiritual needs. When I seek Him, He has given guidance in decisions, correction and forgiveness in sin, peace in uncertainty, strength in difficulty, and love in many situations. And when I’m not quite sure what I need, He is simply there.
Sometimes suffering can make us feel distant from God. But He provides the power to declare with Paul, “No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” (Romans 8:37-39, NRSV)
I recently met up with two friends who share my disorder. One of them has a big white service dog named Sparrow. He stays with her and when someone mentions her name, he will put his paw on her leg.
The Lord is with us even in the darkest of circumstances. There is an old song that goes, in reference to Luke 12:6-7, “His eye is on the sparrow, and I know He watches me.”
Yes, I know He watches me.
How have you seen God at work in tough times? What has He taught you through them?