We were hopeful that the new medicine regimen would cause the infection in my spine to subside. We were hopeful that the new regimen for pain management would result in my increased functioning.
It did not. Over the next 4 months my condition would continue to deteriorate. I would routinely be struck with waves of pain that would start in my lower back and travel all the way up my spine and into my head. I would have to lie down flat on a hard surface until the pain subsided. I can recall one such instance when our church staff was inspecting our new elementary school wing when I had to lay down on the floor of the children’s worship room and close my eyes just to get some minor relief. In spite of the debilitating pain, and exhausting poison coursing through my veins, God allowed me to continue serving my local church and community.
I would spend most of my week working from the couch at home where I could lay down whenever the pain coursed through my body. Sundays, however, required me to actually head to the church for services, so I devised a routine. It looked like this: I would arrive at the church on Sunday morning around 6am like I had done my entire ministry career. I would spend the next three hours on the couch in my office laying down flat with my laptop and Bible on my lap, looking over my notes and praying for the service. I would then get up and make my way downstairs to check on the various ministry teams that were at work and hang out with some folks before the service. I would then join the attenders of the 9:30 service and preach the message. God was so good to me as I was always able to make it through my 35 minute sermon without the pain taking me over.
After that, I would dismiss the congregation and head back to my office where I would pop some ibuprofen and lay flat on my couch again. I would stay there until the last song was being sung and then I would make my way back down the stairs and onto the stage where I would preach for the second time. After the service, I would pack up my stuff and then head to the house where again, I would lay on a couch flat on my back and sleep for the afternoon.
As they year progressed, I found that I was sleeping more and more. At least I didn’t feel pain when I slept, and as long as I stayed flat on my back, life was manageable. My appetite began waning and I began to lose weight. At one time I was sleeping around 22 hours a day and battling nausea to the point that I couldn’t have eaten even if I had wanted to. Finally, in October, Vanderbilt in conjunction with the NIH decided that it would be best to have me admitted to the hospital once again.
It would be a full-circle moment.
As they wheeled me to my room they took me toward a very familiar place. They told me that I would not be admitted in the main hospital, but instead would be going to a newly remodeled section of the complex known as the Round Wing. The Round Wing was located in what is called Medical Center North, and it was the location where I had done my undergraduate and graduate level research when I was pursuing a medical degree. Just on the other side of some metal double doors were the laboratories where I had spent so much of my time just a couple decades before.
In addition to that, the Round Wing is where I was first admitted as a baby and diagnosed with my immune deficiency. The very same floor of the very same building.
You will excuse me if I wasn’t all that excited. I would have rather not been in the hospital at all. But I was. Praise God the doctors figured out a way to better control my pain and felt that changing a few of my meds would keep me more alert. I was sent home with the new plan and the hopes that things would get better.
But they did not.
A few days after my hospitalization a couple of the church elders and my best friends showed up in my living room to have a conversation. They wanted me to take a leave of absence from the church. They (correctly) felt like I needed to focus on healing for the rest of 2020 and let them take care of the day to day operations of the church. They had already spoken to the staff and everyone was on board with their plan. Everyone except for me, but it was clear that my opinion didn’t matter. Praise God they were looking out for what was best for me and best for God’s church.
And so I took a step back. I offered to resign, but the Elders wouldn’t have it. I desperately didn’t want to be a burden on anyone. Man, I hated it.
But it was for the best as over the next few weeks my condition continued to deteriorate, leading to another hospitalization shortly after Christmas and finally our doctors at the NIH and Vanderbilt came up with a new plan. Vandy had fought the good fight, but they had done all they could. It was time for them to hand my care over the experts at the National Institutes of Health. I wish that I could say that I was completely on board with this decision. I was belligerent and mean about it. I did not want to be sent 900 miles away from my family for who knows how long. It took my wife begging me, and dear friends standing at the foot of my bed imploring me to relinquish control and go to where I could be best helped. Finally, through much wailing and gnashing of teeth, I surrendered, and we quickly devised the plan. Jodi and I to hop on a plane and head up to Maryland in mid-January.
Once there, the gravity of my condition would begin to become clear.
Jeremy Powell 