“STILL” (A Beautful Kick in the Seat of Our Spiritual Pants)
James 1:27 (ESV) Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world.
Picture a man in a pure white suit replete with cumberbund, top hat, tails, and an alabaster walking cane with a golden parrot head knob. The man in your mind walks on the sidewalk in front of a row of houses, not delapitated dwellings but well loved, modestly cared for. The neighborhood is not poor but not wealthy. There is a sidewalk for pedestrians but n
o paved surface in the roadwayfor the horses and the carriages they pull or for the newly minted, loud, and sometimes frightening steam powered vehicles that have begun to apepar from time to time making their way noisily to the more notable homes just up the hill.
Let the rain fall, in your mind, as you watch this man all in white make his way hurriedly, determinedly along. He has places to go, people to see. He is not meandering. He is focused, intense. He knows his purpose in the world, in the day, in his heart. He is steadfast.
The man unknowingly courts danger and danger is about to make its play. The man, dressed in white, walks beside a muddy upaved road. And behind him, nothing unusual, a team of four pull its draught, fully loaded, to market. The horses and the man arrive at the muddy pool of water, a puddle amassing in the road from the rain at the same time. The horses hooves, the carriage wheels scatter and splatter the muddy water across the pure canvas of the man’s white suit. If only he’d heard them coming . . . .
James tells us, Christians, that as we walk through world robed in faith and in the righteousness of Christ, there is danger. There exists the danger of being splattered, stained by a sinful, corrupt world as it makes its way to eternal damnation for its rejection of God’s grace in Christ. But let us not think it is only guilt from unconfessed sin about which James warns us (according to one version) to keep ourselves “unspotted from the world.” He inherently warns us not take up the world’s reactions to personal circumstances.
For instance, James warns us not to take on anger or belligerence when life disappoints us. In telling us to keep ourselves “unstained from the world” he warns us from becoming jealous and arrogant when others succeed where we think we ought to have prospered. James waves us away from parading our discouragement as a manipulative effort to gain sympathy (a stategy that reeks of faithlessness and hell.)
But what does such a holy, faithful perspective as James requires of us in the Lord look like in real life? My niece, Kristi, endures several significant chronic health conditions. She recently updated her CaringBridge site and I want to share with you the content of her update. I read through it and heard in my heart this admonition from James: “keep oneself unstained from the world.” I offer you Kristi’s words and faith as an example, an illustration of what a duly warned, faith-filled, and steadfast life may look like. Kristi entitled her thoughts, “Still.”
Still
Dear Friends and Family,
There never seems to be the perfect time to write an update. Not because there is not anything going on, but because chronic illness is just that…”chronic”. It goes on….and on…and on. And I worry that continuing to post problems, concerns, and updates may become wearying to those that I love- I never want to be a burden, and I know that there are so many others that are going through difficult times as well – and so you all end up with looooong breaks between posts. However, I have found that despite the dearth of posting (I am sorry for that), I still have an army of loved ones who think about me and my family, ask about us, and pray for us. Oh, how you love and pray – it is such a precious gift.
And so, on no day in particular (it just happens to be a Friday), I felt that perhaps it would be a good time to restart posting periodic updates. For those who pray, I am hoping that some details for prayer will be helpful. And for anyone who is also experiencing periods of long (seemingly neverending) difficulty, I hope that knowing that you are not alone will bring you hope. And to anyone reading this far into the post, thank you for all the ways you continue to show such amazing love to my family and me.
Onwards with the update:
As I mentioned above, chronic illness is just that…chronic. In many ways, it is like having the flu every day, and yet you can’t just call in sick and lay in bed every day, and so you learn to cope as best you can (with a LOT of pills-the picture attached is just one of my 3x/day pill rounds). 
As far as my illnesses go:
*Autonomic/neurologic issues (POTS/dysautonomia): some symptoms are fairly well managed with medication, however I have had more issues with worsening daily headaches/migraines over the last year. There is one more medication left that is safe for me to try. I also struggle greatly with fatigue and pacing normal life and managing exertion is a struggle.
*New diagnoses this past year: “Mast Cell Activation Syndrome” (when the body overreacts to allergic triggers); this can cause a myriad of symptoms. Also “Eosinophilic esophagitis” which is an excess of allergic-reaction type cells in the esophagus (this explains my semi-recent swallowing difficulties). Both of these issues often occur in the same “illness cluster” along with gastroparesis, EDS, MCAS, and dysautonomia. I have meds that help with both of these, and a couple of new doctors on my list.
*The Ehlers Danlos Syndrome (connective tissue disorder) continues to be problematic – my hip surgery in July 2023 had a looooong recovery time. Ironically, as soon as I had finished 9 months of physical therapy from that, my right shoulder dislocated and has continued to periodically dislocate. Surgery is an option, but also has risks of not being successful because of my issues, so we are praying and considering options. The EDS also causes other issues, such as back pain and waking up with dislocated fingers (not painful, just very….odd!).
*Gastroparesis and motility issues continue, still causing constant nausea and other digestive issues. There are still very few nausea medications I can safely take, and unfortunately the most helpful of the safe meds was discontinued this past year. I am continuing on the (T)PN (IV nutrition), and I have both of my feeding tubes that I use for medications and symptom relief. Our plan is to continue with the TPN as long as possible, so every week we get $3500 worth of IV nutrition supplies delivered to our door….and we are so, so thankful for this. What a gift.
You may have noticed a theme in this post – words like “still” and “continue” and “chronic”. If I may, though, I would like to mention just a few additional “still”s- a few other things that have remained the same, even though days may continue to be difficult. I hope that this list is a comfort for anyone else who may be struggling.
Things that Remain the Same in Difficulty:
1. I am still myself. My illness has not redefined who I am as a person- yes, it has changed things about me, but I am still the same person who God created. I have not been robbed of my identity by my illness. (Psalm 139)
2. My life still has purpose, despite my limitations. Wow, that purpose looks a LOT different than I thought, even 6 years ago. And I still do not know the full extent of what that purpose will continue to look like. Sometimes it feels like all of my work, education, and experience was for nothing….but (by His grace) I know God better than that. He is “always doing 10,000 things and we might know three of them” (John Piper). In the meantime, I can focus on living every day in a way that honors God and encourages others in some way.
4. God is still God, He is still on His throne, and He still keeps ALL of His promises. And God does not change. My doctors may change, my plan of care may feel fragile, I may feel uncertainty and instability when I look into the future….but God is faithful. He does not change His plan of care for my life. Anything He has told me in His Word is 100% true and believable. I can rest in His character-His love for me, His faithfulness, His wisdom, His power. I can look forward to His promise of a renewed and restored Heaven and earth (and body!) when Jesus comes back. These things will never change. These are some pretty amazing “still”s.
One last “still” – I am still loved by you all, and that is such an amazing gift. You all have not given up on me or my family. You call us, you text, you write notes, you visit, you ask about us, you have helped us in practical ways….and so many of you pray. You show us the love of Christ in so many ways. Thank you, thank you.
May I beg your prayer for one specific burden this week, as I close? My mom has a biopsy for a nodule that was (thankfully, in God’s good providence) found on her lung. The biopsy is scheduled for Thursday February 27. We are praying for her to stay healthy between now and then, for benign test results, and an ultimate trust in the Lord for whatever is ahead.
Until next time (which I promise will be sooner than last time),
Kristi
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