A Health Update
It has been exactly one month since I was diagnosed with polymyositis (click HERE to read about the condition). Since then, I have been on the receiving end of much care, encouragement, and prayers. Thank you, friends. I am overwhelmed with kindness I don’t deserve.
Many of you have also been asking how I’m doing. I thought I would take this opportunity to update you on my health. If you would indulge me, I would like to do this in the form of a FAQ. These are the three most frequently asked questions I have received over the last month.
What is it like to live with the disease?
You know that feeling when you’ve worked out really hard, so that you can barely lift your limbs afterwards?
Neither do I. But if I did work out, I imagine that’s what it’d be like.
And that is how I feel all the time. Over the last 6 months, my arm, leg, neck, shoulder, and back muscles have grown gradually weaker every day as my own immune system attacks my muscle cells, causing inflammation and breakdown of the muscle fibers. Practically, this means my arms and legs feel like leaden Jell-O, my battery meter always reads “low,” swallowing and speaking is laborious. I am slow, stiff, and sore (Sorry, that’s the preacher in me).
On the other hand, someone told me the other day that I am looking good and asked if I had lost some weight. Why, thank you. Yes, I have, though not on purpose.
But for the most part, I still look like your average, able-bodied person. And I think that’s one of the hardest things about living with polymyositis. It feels like a make-believe disease, something that’s all in my head. So, I still struggle with feelings of laziness, unproductivity, and feelings of cowardice. I feel like I should be strong enough to push through the pain.
But I was reminded again of John 15, where Jesus says,
“I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing” (v.5).
The humbling truth is that even if I were healthy and strong, I can still do nothing without Christ. Any fruitfulness is a gift of God’s grace as I remain in Him. I am learning to rest and hope in Christ when I feel weak and unfruitful.
How is the treatment working?
I should be starting to feel better at this point in my treatment plan. I wish that were true.
On the other hand, I haven’t gotten much worse, which means the medication is working to keep my disorder at bay. Without treatments, my doctor told me that I would likely be on breathing tubes and unable to move in a matter of weeks. I’m grateful that I can still drive, walk short distances, speak, and do many everyday tasks, albeit with some difficulty.
The early prognosis was that I can regain some, if not most of my strength in due course. At this point, I have no compelling reason to doubt this. Please pray for patience and a childlike dependence on the Lord.
How are you doing spiritually and emotionally?
There are moments of frustration, pain, and exhaustion that seem briefly overwhelming. But these moments punctuate a general sense that the Lord is near, that His grace is sufficient, and that He is shaping my heart through this sickness.
I started keeping a prayer journal about my health just before my diagnosis. In it, I have been confessing my fears and reflecting on my limitations. But mostly, I’ve been expressing “profound” thoughts like this:
“I preached for the first time since my diagnosis…. I’m realizing how much more limited I am in my movements. I can’t lift my arms high or stretch them out very far. I guess I will never preach quite like John Piper. Oh well. :)” (June 16, 2024)
The Lord has been using my sickness to increase in me a greater understanding and empathy for people who live with disabilities. I was moved—nearly to tears—by people who saw that I was not very steady on the steps that lead up to the stage. Within a week, they installed handrails. I realized that many people, not just me, can benefit from a simple thing like handrails. Lord, forgive me for my impatience and insensitivity toward the disabled! My compassion is growing and I am thankful.
Finally, I recently read this from Miroslav Volf as he wrote about the imprecatory psalms, what he calls the cursing psalms:
“Rage belongs before God … not in the reflectively managed and manicured form of a confession, but as a pre-reflective outburst from the depths of the soul…. By placing unattended rage before God, we place both our unjust enemy and our own vengeful self face to face with a God who loves and does justice.”
I am thankful that I still have the ability to bring my unmanicured and unmanaged emotions before the Lord of covenant love. I can trust him to do justice and give grace when I feel exhausted, useless, and frustrated. Please pray that I will be humble enough to wait on the Lord when I am in the crucible.
Thank you, church. I am so thankful for your love. The Lord is good.