Praise the Lord, my soul,
Psalm 103:2-4
and forget not all his benefits—
who forgives all your sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion
I have given much thought to how to proceed in the next part of the story, and I have decided I want to be completely honest with you. To this point I had experienced new life. A literal rebirth with a new immune system and a new future. I had also experienced some of the darkest days of my life. Along with my family, we had endured separation, uncertainty, fear, frustration, hallucinations, odd feelings and hard emotions. Now the move to inpatient therapy was on the horizon, we felt there was light at the end of the tunnel… but things would get much worse for me emotionally and physically, and although I would love to say that I handled these new obstacles with grace and patience, I simply did not. My attitude went sour and I ended up hurting many of very people I had come to rely on along the way. Only recently have I been able to process as to why this was the case, and it is my hope in sharing, my story may help some of you write a better story for you and your family.
The previous year and a half of transplant and meningitis had been so difficult for so many reasons, but the next 6 months would take me (and many of you) to the gates of Hell. Praise God, even in my darkest moments He was there, and he dug my life out of the pit. And He can do the same for you!
Where can I go from your Spirit?
Psalm 139:7-12
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
if I settle on the far side of the sea,
even there your hand will guide me,
your right hand will hold me fast.
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
When Angel Flight arrived to whisk me away to Birmingham, we were pleased to see some familiar faces. The same crew that had flown us to the NIH six months before would be our escorts to the next destination. They quickly went about their work, Jodi signed the appropriate papers and they strapped me down to their gurney. Still unable to move most of my body on my own, I would need all of the special care afforded for the journey. After about an hour in an ambulance we arrived at Dulles International Airport and they loaded me into the LearJet and strapped me down for the flight.
I pray that you never have to utilize Angel Flight for a number of reasons, the least of which is the process by which they have to get you into the plane. When the surgeon at Vanderbilt put all of the rods and screws in my neck he told me that I could never ride a rollercoaster again. It was a limitation that I was willing to take as it just isn’t worth the risk for a little bit of thrill. That having been said, being loaded into a LearJet while strapped to a gurney isn’t all that different than enduring a death-defying coaster ride!
A short plane ride later we landed at Shuttlesworth International Airport in Birmingham and after another ambulance ride to UAB hospital, I was unloaded to the sound of familiar voices. For seven years I had pastored First Baptist Church in Hayden, Alabama, a small community about 30 minutes north of Birmingham, and outside of the hospital waiting or me to be unloaded stood dozens of friends and family that had come to greet me with signs and poster boards cheering me on in the next phase of my journey. Aside from just a handful of people, I hadn’t seen anyone from home face to face in 6 months, and although I couldn’t turn my head from side to side because I was still strapped in for transport, the Angel Flight crew raised my head on the gurney so that I could see all of the folks expressing their support.
Once in my room, I immediately began to be assessed by my new team of therapists. There were instructions and disclaimers and new rules and regulations.
Because of COVID, I would only be allowed two caregivers. This meant that my mother and Jodi would have to trade off staying with me round the clock. I wasn’t strong enough press the call button should I need something, so I could not be left alone. We had been blessed at the NIH to have a sitter in the room 24 hours a day aside from the nursing staff that took care of me, but here at UAB, I would not be afforded this luxury. We were told that I was guaranteed 3-4 weeks of therapy and that I would be assessed regularly by the staff so they could petition for more time from my insurance should they see the necessary improvement. I was placed on a full diet, and for the first time since February I would be doing my best to eat full meals and pack on some much needed weight. I arrived at UAB weighing around 100 pounds, and if I was going to put on muscle and make progress my body needed fuel. I was told that I would receive 3 hours of therapy each week day. Two hours in the morning and one hour in the afternoon. They were optimistic that I may begin to see some progress in my mobility within a week. We were all excited to think about the possibilities
Back in Union City teams of volunteers were beginning to work on the home remodel. There was so much work to be done. Floors had to be leveled, doors widened, ramps built, and rooms reworked. In addition to these projects, Jodi’s dad had begun to develop some terrible symptoms while staying with our girls at our home. We knew things were bad when Abbi called Jodi (At this time we were still at the NIH) and said, “Something is wrong with Papa!” A couple of our friends in Tennessee sprang into action and got him to the ER and then on to Jackson where they discovered a gall stone that was completely obstructing his bile duct. When the surgeon (who was in his 30s) was finally able to remove it, he informed us that it was in the top 10 largest gall stones in the history of gall stones, and that his body had been working on creating that it longer than our surgeon had been alive. As if one near death experience wasn’t enough, Papa had to join in the fun! Praise God that he recovered and was soon cleared to eat whatever he wanted to again!
All of these details, Richard’s illness, the house remodel, and watching our girls struggle in a number of ways led Jodi and I to the realization that she needed to be at home with them. For the last 6 months she had labored by my side and we both agreed that it was for the best that she spend as much time as possible tending to our home and our girls.
Although I knew that this was the best. This transition pushed every insecurity button that I had in my body and took me dark places in my soul that I didn’t even know existed.
I’ll try to explain.
Some of you may not be aware of my history aside from CGD, so I’ll fill you in. My mother discovered that she was was pregnant with me when she was 19 years old. In the late 1970s, when a young unwed girl got pregnant, the thing to do was to marry the child’s father, and so that is what my mom did. But before I was born, my biological father divorced her, and she moved back in with my grandparents. There I spent the first four years of my life, until my mom met my dad and decided to get married. Up to that point, my biological father had had nothing to do with me. I had never met him (that I was aware of) and I honestly wouldn’t have known him had he fallen on me. But once my new dad tried to adopt me, my he decided to fight the process. This led to a two year long court battle to decide whose name I would bear. I remember having to go to visitation meetings on Saturdays and meeting a whole new family I wasn’t even aware I had. It was very confusing and taxing for such a little fella. Finally my biological father signed over his parental rights, and my dad was able to officially adopt me. I was so happy and was blessed so much by such an amazing father, and amazing parents.
What I know now, that I didn’t know at the time, was just how scarring these traumas had been to me. Looking back I can remember having nightmares of people sneaking in my window at night and stealing me from my mom and dad. I can remember my parents sitting in my room with me waiting on me to fall asleep because I was too afraid to be by myself. At the end of the entire process, even though I had been blessed with amazing parents and an amazing life, I was unaware of just how traumatizing it was to be abandoned by the same man twice before the age of 6. I’ll spare you the remaining details, but aside from medical traumas in my life, the traumas of abandonment and rejection, not just the aforementioned cases, but several others shaped some of my greatest fears. The fear of being alone. The fear of being left. The fear of being unwanted. The fear of not being good enough.
And so once I got settled into my new digs at UAB, and Jodi headed off to be mom to our girls, the ugly head of these traumas all surfaced. What if I never recovered? What if Jodi didn’t want me anymore because I was an invalid? What if I was unable to care for or provide for my girls? Would they be ashamed of me? Would I live out the rest of my days in a nursing home or other facility, waiting and hoping that someone would come and visit me whenever they could find time in their busy day? Would Jodi be better off with some other guy who could be the husband for her that I couldn’t be? When you say your vows at the altar, no bride ever thinks that feeding their husband every bite they eat and then wiping his butt at the end of the day would be a part of it. She was still young. She had hopes and dreams and aspirations. Though I initially had so much hope for my therapy, these fears were whispered into my ear by an enemy that desperately wanted to see me, my marriage, my family, and my ministry fail. It would take me a long time to get to the point where I can truly hold tight to the promises that God had made to never leave me or forsake me, and I would be lying if I told you that I don’t still have to fight the lies that Satan whispers in the dark of night. But praise be to God that I am not where I once was.
I know that in the darkest night it is easy to feel the most alone. I know that when all the odds seem stacked against you, it is easy to feel that God has turned His back on you and doesn’t care for you. I know how easy it is to allow the lies of our enemy to cause you to lash out and hurt the ones that care about you the most. It is my prayer for you, when you find yourself in the dark places of life (and unfortunately we all find ourselves there at some point), that you would hold onto God’s promises to never leave you. When you trust God to hold you in His hand, then you freely allow the others in your life to be who they were meant to be. I know this now. Then, all I knew was fear.
Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”
Deut. 31:6-8
And surely I am with you always, to the very end of the age.
Matthew 28:20b
And I will ask the Father, and he will give you another advocate to help you and be with you forever—the Spirit of truth. The world cannot accept him, because it neither sees him nor knows him. But you know him, for he lives with you and will be in you.I will not leave you as orphans; I will come to you
John 14:16-18
I wish I could have handled these times better, but I did not. I’m so thankful that in God’s grace, He has allowed so many of my loved ones, especially Jodi and my girls, to extend grace and forgiveness to me.
As my mother took Jodi’s place on the hospital couch/bed, we prepared to celebrate the 4th of July. One of the physical therapy techs wheeled into my room in a powered wheelchair. It would be an upgrade from the manual frankenchair that had gotten me around at the NIH, and although I was not yet strong enough to drive it, goal number one was the to get me there! We would start immediately.
Jeremy Powell 