Guest Contributor: Shannon Keizer
It was Christmas morning 2018. While lying fetal position on the basement floor, and my fragile body down to a mere 96 pounds, pain radiated from head to toe. I imagined my friends joyfully opening gifts around their trees with their young families, while I just prayed to make it through the day. Like many times before, I begged for relief from the pain, even if for only a few seconds.
When God was Silent
I gave up. I could no longer hold up the facade that everything was alright and I was fine. I could no longer be brave for my parents. I looked to them for answers while crying out to God, “WHY? WHY IS GOD NOT ANSWERING? Why are so many people praying for me yet nothing is happening? I do so much right in this world and get crap in return. Why can’t I have the life so many of my friends have? Don’t I deserve that?”
You might be able to relate. Although you may or may not have endured a major health crisis, you probably know what it’s like to face trials. You know what it’s like to question God’s plan and wonder why life isn’t going your way or why God allows certain things to happen. How can a God that is so good allow so many bad things to happen to someone who daily strives to please Him?
For those not familiar with my story, I was born with a genetic, metabolic disease called Cystinosis. This disease is so rare, it affects only 600 people in the US and 2,000 worldwide. Simply put, I have a buildup of the amino acid cysteine inside my cells, which creates cysteine crystals. These crystals damage various organs starting with the kidneys and bones. By childhood, damage typically expands to the brain, muscles, throat, and other organs. In adulthood it could lead to further organ failure, muscle wasting, blindness, and even death. Without treatment, life expectancy of someone with Cystinosis is 10 years of age. Currently, medication slows the progression of the disease, but there is no cure. Even with treatment, on average, a kidney transplant is needed by fifteen years of age.
I may be one of few to reach thirty without being transplanted, but I’m not immune to physical and emotional challenges that come along with the disease. Atypical of most with Cystinosis, I began producing record-breaking kidney stones at the age of 12. Recently, both kidneys filled with stones measuring over three inches each. Throughout the past year I’ve endured 4 surgeries (invasively through my back and bladder), sepsis, and infections of the kidneys and bowels.
I share this with you not to gain sympathy or draw attention to my ailments, but to identify with those walking through trials, and to proclaim the freedom and power of giving God the glory, putting all trust in Him, and recognizing His blessings when they are most difficult to see.
You may recall Paul’s letter to the Corinthians, when he said, “If I must boast, I would rather boast about the things that show how weak I am” (2 Corinthians 11:30). He continues by saying,
“…So to keep me from becoming proud, I was given a thorn in my flesh, a messenger from Satan to torment me and keep me from becoming proud. Three different times I begged the Lord to take it away. Each time he said, ‘My grace is all you need. My power works best in weakness.’ So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.” (2 Corinthians 12:7-10).
Paul points out the importance of giving God the glory and allowing Christ to work through him, rather than focusing on himself and his sufferings. I understood this, but lying on the floor that Christmas morning, my human side took over. I viewed suffering through a self-centered lens, asking all the wrong questions. “Why is God allowing this to happen to ME? Why isn’t He healing ME? Why aren’t things going according to MY plans?”
When I Tried to take Control
That day, because God wasn’t responding the way I imagined, I decided to take things into my own hands and booked a plane ticket to Seattle. I figured the healing process would speed up if my spirits were brightened.
Just one day into the trip, I landed in an unfamiliar hospital where no one had heard the word “Cystinosis”. Two days later, I tested positive for C-diff, a highly contagious infection, and was moved to an isolated glass room labeled “contact precautions”. It was a requirement of anyone entering the room to gown up in an outfit just short of a hazmat suit, which meant I didn’t get many visits, even from staff. With almost an entire country between my parents and me, we all felt alone. Although I was discharged from the hospital on day 6, the C-diff wouldn’t subside for another four months. Clearly, taking things into my own hands did not work out.
I’ve always claimed Romans 8:28 as my life verse.
“And we know that in all things God works for the good of those who love him, who have been called according to his purpose”. Romas 8:28
It seemed in all the agony I turned my back on this truth. Deep down I knew that somehow my suffering could be used for good, whether or not it could be seen in that moment. So, I humbled myself, let go of the reins, and allowed the spirit to lead.
When I Took a Step of Faith
Like Paul, I decided to focus on what Christ could do through me rather than dwell on my circumstances. I started asking Christ-centered questions. “God, how will You use my story for YOUR glory? How can my struggles be used to help other people? Lord, give me the strength to do Your will. Align my heart with Yours, and open doors to honor You.”
I began to speak out, publicly proclaiming God’s glory, and everything changed. That April, I was given the opportunity to speak at a symposium in San Francisco, alongside Dr. Stephanie Cherqui, who discovered a potential cure for Cystinosis. What an incredible moment to not only share the platform with one of my heroes, but to declare God’s goodness to hundreds! On top of that, together we raised $12 million for clinical trials!
About that same time, I took a giant leap of faith, acted on a 15-year heart tug, and enrolled in pre-nursing classes. Through scholarships and donations (for which I did not ask), my entire first year of tuition was paid. God was undoubtedly at work. I became obsessed with medical studies and thrived in science classes that years ago I would have bombed. Also, without applying, I was offered a part time job at an assisted living facility that worked perfectly with my school schedule. The list goes on, but I hope you can see my point isn’t to take credit for these things myself. Like Paul, it’s to boast about what the Lord has done through my weakness.
You may be reading this thinking, “Ok, so if I just change my attitude life will turn around”. That’s not what I’m saying. The Lord has provided all these amazing opportunities, but my health issues did not just miraculously vanish. My kidneys currently function around 23%, and it’s only a matter of time before I’m listed for transplant. The constant low energy and debilitating nausea are real, not to mention the 49 pills a day and the super stylish boot cast I sport due to weak bones and spontaneous stress fractures. One day, whether on earth or in Heaven, I will be healed, but I can’t guarantee when that will be. What I can guarantee is that God will show up in extraordinary ways when you draw your strength from Him.
Let’s rewind. Perhaps you’re not yet there. Maybe you’re so deep into a storm that you don’t know where to start. You don’t know how to put your trust in the Lord. It begins by placing one foot in front of the other and reciting Philippians 4:13, “I can do all things through Christ who strengthens me”. Repeat it over and over until you start to believe it. Then reflect on the meaning. In my experience, it means praying to make it through a workday when you feel as though you’ve got nothing left to give. It’s crying to God as you focus only on the next second of the next moment. It’s continuing forward when doing so doesn’t seem possible. It’s crossing one hurdle at a time, then looking back to see how far you’ve come. And when you’ve reached there, it’s fully surrendering to the Lord and looking to Him for guidance.
So next time life gives you lemons, don’t try to make lemonade in your own strength. And on the contrary, don’t sit by and expect the lemonade to make itself.
“In their hearts humans plan their course, but the LORD establishes their steps.” Proverbs 16:9
Seek God’s direction and open your mind to His blessings. Ask Him to use your trials for His good. Declare His glory. Shout from the rooftops what He has done for you! And remember, if something doesn’t feel good in the moment, He DOES have a purpose. He WILL use it for the overall good. Even if we don’t find out what that is until eternity.
“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12