Two weeks ago, I had a good few days. I felt stronger. I went outside with the kids. I was upright more frequently. I was thinking, “The feeding tube has helped! We might be getting somewhere!” I was not falling over when I stood up. I didn’t have to lie in bed all day. I hadn’t felt so well in months, maybe even years. Ground has been covered. There is hope for improvement, maybe even healing. We finally found an intervention that really seems to be helping me to gain some forward momentum.
It was great.
Then, five days ago, the fevers started again. Every 8 hours, lasting for about two hours. The pain starts in my fingers and toes and slowly spreads inward, through my body, like a poison, until it infiltrates my entire being. My stomach, my core, shoots searing pain like a volcano, sending me gasping and retreating to my safe place in my mind to escape the agony. With the fevers come the chills, which seem more appropriately labeled convulsions based on their intensity.
The POTS symptoms have escalated, and we suspect that I have a new allergy–to my tube feed formula, the stuff that is being pumped into me for 15 hours a day. I am allergic to the formula that is helping to restore me back to health. And insurance will not cover any other formula.
And everything crashes again.
I am a surfer.
I’m not a surfer in reality. That would be disastrous. I only surf theoretically. I surf the waves of chronic illness. Some illnesses have consistent, predictable symptoms, though, I suspect that most illnesses do not feel very predictable. My illnesses, however, are highly unpredictable. I feel better one day, go out with the family, and I get slapped in the face with a reaction in the middle of a perfectly normal outing. I am laughing with friends at noon, and by dinner time, I am moaning in bed in pain. And the next day, when someone asks me what happened yesterday, I don’t remember anything out of the ordinary. The waves are frequent, and the tide is choppy. But I am getting better at surfing.
With unpredictable chronic illness, I find myself forced into extreme flexibility.
I have to be able to adjust quickly. Got something planned for today? Can’t move? Okay, so we take a rain check. My actual health is not the only thing that forces flexibility. Finances and insurance are almost as, if not more, difficult to deal with than the illnesses themselves. I can do my infusions at home until I am forced to switch to a new insurance, that no longer covers home infusions. Then I have to find someone to drive me to the hospital for three hours, three times a week. Okay. No biggie. Shuffle the schedule. It may be a little inconvenient, but at least I have access to modern medicine and a multitude of folks willing to shuttle me around.
Sometimes, I long for the waves to just settle down. I long for peaceful, quiet, calm waters in which I could simply peacefully float. Maybe just for a span of seven days.
And yet, here I am in this ocean, learning to ride the waves.
I am learning the skills of surfing on this ocean called life. (I’m pretty positive that most people feel like his or her life is marked by some pretty unreal waves). Some of the skills that help me navigate the waves of unpredictability are lament, gratitude, and laughter.
My friend Esther Fleece, in her book No More Faking Fine, pours out her heart, which is a reflection of God’s heart, about the necessity of the process of lament. “When we lament to God,” she says, “we see Him more clearly on the other side.” To chose to not communicate to God our brokenness, disappointment, and frustration, we miss out on actual spiritual intimacy with God. It is not self-pity to cry out to God when life is difficult and painful. To lament and weep before God is actually life-giving, and in doing so, we can regain our balance on that surf-board. So I know it seems counter-intuitive, but my first skill in riding the waves of this health-storm is my ability to express my frustration.
My writing role model Ann Voskamp knows all about gratitude. She was called by God to change her life through daily acts of gratitude, and she collected blessings like wildflowers in a never-ending feild. She counted a thousand gifts in her life, and her life was forever changed. It is the secret that Paul let out in Philippians 4:11-12:
I have learned how to be content with whatever I have. I know how to live on almost nothing, or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little.”
Paul’s secret was thanksgiving, so Ann picked up a pen every day and wrote down her gifts. And she says that there is always room for gratitude. There is. Every day of my life, in bed, or out of bed, in pain or pain-free, verticle or horizontal, there is always something to be thankful for: Crisp bed sheets, a window to look out, the sound of the birds, access to running water, the presence of my God. And on the days where I can only know for sure that God is present, when I know nothing else for sure, I can be thankful. I would rather spend a day suffering knowing that God is by my side, than spend that day free of suffering but in the absence of God. God is good. I choose gratitude. I steady my balance on the board, and ride on.
Laughter is wonderful medicine, and it helps me hold steady on some of largest, most terrifying waves. God knew how much I would need humor when God gave me my husband. He is hard pressed to be serious, and in our conversations, I can be confident that at least 80 percent of the time, he is joking. With a simple witty quip, he can stabilize me when I am struggling to maintain footing. We laugh more than anything else together, and it is balm to my soul. I feel that sometimes, the choice to laugh is the choice to hold onto hope that the world is not crashing in on me at this very moment. This moment will pass, and there will be joy. For me, laughter screams “hope” when life looks quite dreary.
Lament, gratitude, and laughter: These are vital parts of my survival kit for my topsy-turvy life. It is okay to cry, it is okay to count blessings, and it is okay to laugh. God is here, on the bad weeks, when my body is so reactive that I can’t function. God is here, on the good days, when I try to test the limits a bit and see what life could look like when I am healthy. God is here, in the in between, when I am holding my breath and hoping that treatments will work. God is here, when I am completely certain that He is NOT here because I can’t seem to find him anywhere. And God is here, calming the waters of my soul, even when the waters of my life seem violent and difficult to navigate.
And because He is here, I can surf these waves and have some fun. I’m getting pretty good at it.