As the Holidays roll through, there is a friendly reminder of another year come and gone. It’s also a time I receive many questions about how my health is doing. I resisted for a while communicating publicly or making much of my journey, but with so many people that have covered my life in prayer I know it is helpful to have a place to share what God is doing in my life. We are also at a place of some better “knowns” that can be shared vs alot of questions that could be confusing:) so thanks for you patience.
To start, I think best for a quick statement to say we are currently at a place of stability with my health and are seeing massive answers to prayer. But how did we get here? Its hard to condense the last 4 years in one post so please know there are so many stories that will never be told this side of glory. Here’s a condensed version:
Spring of 2019 during a season of intense stress and energy giving at the church I got sick. Really sick. If you knew me before then you knew I was the guy that never fell ill or backed down…yes some back problems but would lean in hard and health was never an issue. Palm Sunday 2019 I sang a 4 min special in the choir concert and could barely remember where I was or see the piano. Menengitis. Scary. Followed by what they thought was pneumonia. 14 days of high fever and a couple visits to the hospital. Missed Easter that year and it was crushing…I never miss the big days. Little did I know that the Lord was preparing me to be ready to miss many big days. After recovery I was back at it painting our soon to open Creative Suite at the church when I noticed I couldn't hold a brush for very long…I love painting but this was different. I've always had this running dialogue with the Lord that I would be ok to sacrifice anything in my life for his work…just don’t take the hands.
Fast Forward to Summer of 2020. Injections in the hands. No solution. Hand Specialist telling me I should just work through the pain because there was nothing wrong. I couldn’t hold a fork, a guitar, a pen…every movement of the fingers was painful, sometimes pass out painful. Yet now I was feeling like I couldn’t get “in shape” and needing to fight for oxygen through this darn mask everyone had to wear now. My only escape was to the mountains. We love to camp as a family and its a wonderful reset for my soul. Church work is hard on the soul and the family. But one day I was really struggling to stay conscious when doing basic camping tasks and Amy said “enough is enough you need to go to the doctor.” Dr. visit was a parking lot style situation where the nurse ran back inside after taking my vitals only to quickly reappear and tell me I needed to hurry to the ER. Blood Oxygen was low 80s dipping into the 70s. (95-100 is normal). Immediately the thought was covid but no it wasn’t. Something bigger and maybe worse was happening in my lungs. Lung function was only 40 percent. The blood work and imaging confirmed: Interstitial Lung Disease. Not good. Life expectancy 3-5 years. So not only are the hands not working now you take my lungs.. and maybe more…much more?
Fall of 2020 through the grace of family connections and the Lord’s timing on loving doctors in Houston we find the source of the problem. Auto Immune: Scleroderma overlapped with Polymyositis. No clue where it came from. First success: having a diagnosis. Now what? The decision to go traditional western medicine for treatment was a heavy one but we felt we had a peace about it. 8 months of high dose steroid coupled with an intense immune suppressants. Saved my life but takes a toll on the body. Wearing oxygen. Filming worship services for at-home worship. Singing a song then stopping cameras to get on oxygen again. Nuts. By end of 2021 we were seeing progress in the lungs but my body was eating its own muscles through inflammation. Switch to infusions drugs…no go. tried several others…no bueno. One of the guiding principles with this disease is that you have one token a day to give. One burst of energy…one big moment…one thing to get done. If you spend more than one, it takes twice as long to get a coin back. My natural wiring of conquer and this coin concept were at war:) Holidays of 2022 were rough. I used alot of coins. My body was going backwards with no relief in sight.
Feb of 2023 we hit the jackpot on a new treatment. Very quickly I felt swelling start to go down. Energy was coming back faster than before…and the lungs…they tested at 80 percent function and blood oxygen level of over 95! I felt like I could sing a whole new song! I could make it through a worship service with life in my veins again! Throughout this year we continued to see progress and the big moment was when our medical team in Denver (a whole different God story) telling us that we weren’t on the 3-5 year plan anymore but the 30 year plan! Prayers answered left and right. They tell me I’m the rare one…other patients don’t have success like this…I tell them it’s the grace of God and he has a plan.
So now what? Holidays 2023. I can play guitar again. I can play piano again… like I could before? of course not but I’m determined to find new ways to sing praise. The Lord has gifted more new songs this year then ever before. Many already sung by our church about to be released globally. I’m using a camera to remind people of God’s glorious creation... a reminder to cry out in worship…to take a moment and breath in His presence.
The biggest shift is my understanding of worship. These last few years have been a full shift in my appreciation for the special moments we gather together and sing. more in another post.
Prayers still needed. Pain shoots through the body often. Muscle deterioration is an uphill battle. The Meds I’m on need to keep working. Thanks to all the prayer warriors…I feel it every day.
Every Day is a gift. Every Breath is a moment of praise. Every Song is a testimony of God’s love and goodness. Sing it with purpose.
Chris
