(The image above was taken by Kathleen Sheffer. The left was weeks after transplant. The right was taken during the “sudden smooth” a few days ago.)
There’s this song, Oceans, by Hillsong United, that’s about holding on for dear life to God in the midst of life’s storms. Go ahead and give it a listen at the link — this is a long post.
There’s this part, “So I will call upon Your name / And keep my eyes above the waves / When oceans rise, my soul will rest in Your embrace / For I am Yours and You are mine.”
Ah, man. It gets me every time. I choke up (dangerous when you have a lung disease) and my eyes, ironically, get filled with waves of tears.
In elementary school, I got my foot stuck in a piece of coral while at Shark’s Cove in Oahu. Being a lil’ kid, I thought a place called Shark’s Cove, naturally, had sharks. It turns out that the biggest threat was actually the tide. I was anchored down by the coral and the tide was rising, rising, rising. Up to my nose, almost to my eyes. I screamed, “HELP, HELP, DON’T LET ME DROWN.” These tourists were mere ripples away from me, on plastic floaties. They stared at me. Just stared. Indifferent. My mom shrieked for help from the shore, and … I don’t really remember what happened next, honestly. I’m assuming I survived.
My whole life was me trying to keep my eyes above the waves. It was always survival; the seas were never calm. And yeah, at times, I felt like God had fallen asleep to my prayers, as Jesus did in the midst of the storm in Matthew 8:23-26:
“Then he got into the boat and his disciples followed him. Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. The disciples went and woke him, saying, ‘Lord, save us! We’re going to drown!’ He replied, ‘You of little faith, why are you so afraid?’ Then he got up and rebuked the winds and the waves, and it was completely calm.”
The disciples put their shaky faith in sails and wood to keep them afloat in the storm. I put my faith in a “magic” blue pill (Kalydeco) that I believed would save me, as it saved so many others with cystic fibrosis. When it didn’t work, I was sucked into this storm. I feared for my life. My foot was stuck in the coral of CF and I was drowning in mucus and tears. Mom was on a metaphorical shore, praying for me to be helped as transplant centers refused to offer their life rafts.
The answer for the disciples was right below decks, not in the sails or the wood of the ship. When they woke Jesus, He said simply: “You of little faith, why are you so afraid?”
Two years ago, so deaf that I couldn’t hear my own words, I screamed in fear to God, “DO SOMETHING. DO SOMETHING. DON’T JUST WATCH ME. DON’T LET ME DROWN.” But it was an outraged prayer, not a faithful one. I wasn’t ready to join Him. I loved the world more than Him.
And then I almost died and, as you’ve read many times before in this blog, I had an epiphany. Unlike in the story in Matthew, He was awake all along. I was the one who needed to open eyes. I rested in God’s embrace as He whispered that I was little, but there was no need to be afraid. “I just want another chance, Father. Please, help me. I don’t want to hurt anymore.”
Little by little, my fear seeped away, until I was on that operating room table experiencing the calmest calm. A calm calmer than I thought possible. I finally grasped a faith that could break a sea in two.
This was the evanescent eye of the storm. The waves returned and crashed, crashed, crashed. I faced opioid withdrawal, grief, a breakup. But the torrent eroded the remaining strongholds of stubbornness around my heart. I was learning to give it all to God. To accept that my faith in God didn’t make me a lucky Irish who would never be affected by bad things again. Rather, my faith gives me the strength to sing the mantra, “when sorrows like sea billows roll, whatever my lot … it is well with my soul.”
I stood by the sea in San Luis Obispo a month ago. It was calm.
I stood with my uncle and remarked that, today, I breathe better than I have since I was a child. That I hear better than I have since 2010. I made the remarks and realized I hadn’t realized that until I made the remarks.
Jehovah Rapha (The Lord that Heals) heard me and delivered in ways I didn’t think possible. After a whole life of storms, I’m mesmerized by the “sudden smooth.”
On Saturday, I had a “Lungiversary” party to celebrate the year since my transplant. I went from a year of near-complete solitude to telling a friend at the party that I was relieved not everyone could show up because my house was too packed.
On Monday, I finished a day of work in which I cried four times. Once, because I edited a column that reminded me of how torturous a life with chronic illness is. Pain memory is a root of gratitude for a new life of relative health. The second time because a writer thanked me for helping them with getting evaluated for a lung transplant — my journey continues to positively affect others. The third time because I edited the column of a parent whose daughter asked him if he loves having a child who is disabled. (His answer: “I love you.”). The fourth time because my friend wrote a poignant column about our transplant journey together. The job is perfect for me, and was only obtained after months of applying for several other less-perfect jobs whose employers didn’t even bother to email or call me back. God closes doors to open better ones, yeah?
My breakup is now history, and a valuable friendship with her remains. We both have gratitude for our past relationship because it was six years of only ever building each other up. I know God has someone perfect in mind for the both of us.
My health continues to be excellent. I haven’t had organ rejection or major infections. I am rock climbing and muscle training. In San Luis Obispo, I rode an ATV over dunes and a horse up a gorgeous mountain.
My hearing is better than I hoped for. It takes many people years to enjoy music with cochlear implants, but it all sounds completely normal to me. My audiologist is even enrolling me in a study about how cochlear implants perceive music! My dad gets annoyed because he tries talking to me without realizing I’m jamming to music (it streams directly to my brain via Bluetooth). I ask if he’d rather that I listen to lots of music or be deaf. He concedes.
If you study the Bible, you’ll know that Peter, despite seeing Jesus calm the stormy seas, eventually forgot His greatness — for a while, at least. He declined even knowing Jesus three times in a single night. I don’t ever want to forget what God did for me. I want to live like the man in Job 33:19-33 who is saved from the grave and has his body restored to youthfulness, then spends the rest of his days praising God for healing him.
God already made me healthier than I have been since my youth. Life is melodious, radiant, technicolor now. What I do with the rest of my days is my decision. I think I will choose well.
Brad, congratulations on your lungiversary! I am in the hospital now, and when I am not sick with side-effects, I have been reading and enjoying your blog. I salute you for what you have been through and overcome, and that is just amazing; you are an amazing guy! Thanks for sharing these tough parts of your life so that the rest of us CFers (and really, I guess everybody) can be encouraged from it. You have inspired me to write more about my experiences, in the case that it might help someone the way that your experiences have helped me.
Thank you so much for reaching out to say this! Comments like these keep me going 🙂
I’m so sorry to hear that you’re in the hospital and having intense side effects. I hope that you can also experience the “sudden smooth” one day.
I 100% encourage you to write more about your experiences. It’s been a therapy that’s worked wonders for me, and so I strongly advocate for others to try it out as well. I set out to write this because I wanted to encourage others, so to read that someone is inspired to do the same is fantastic. Please shoot me a link if you make your writing public!
Hoping the best for you.
So inspirational, Brad. Your faith is a model for us all. Oceans is so beautiful and I can relate to it as well and appreciate your introspective thoughts and sharing. May you rise up to experience life fully and embrace the blessings before you with thanks and God’s grace. Sending you love and continued blessings.
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Thank you so much for this kind comment! It’s been a crazy journey. But I wouldn’t trade it. Hope you’re doing great!
AMAZING to find your blog. Absolute blessing to this mama’s heart. I am inspired and encouraged at the work of our Lord in your life. As my husband and I attempt to raise a beautiful young lady who has cf, we are struck often by the enormous “heart work” of it. The anger seeps in despite our best efforts to love on her. CF is just a monster of a disease. Yet, as you said so well, with God it isn’t free of trouble, just a bit of strength to get through them. I have really enjoyed getting to know you through your writing. God is good and we are thankful for His work in you, and your ability to so eloquently write about issues of CF. I am extremely thankful for those with cf that can help the younger ones (and parents) to learn through your heartache. THANK YOU!!! Blessings to you!
Hello from the southern Oregon Coast,
My son Jeremy is a 41 year old Christian with CF and is just starting the transplant journey. His favorite book of the Bible is Job. I find your postings to be refreshing and very helpful. So much of it sounds familiar, even down to things like Star Wars (I raised him on the movies!) book stores, writing, gummy bears and being an adrenaline junkie. I could never complain as he got that from me! Keep writing, You have the talent and the heart to do this. You never know who you may be helping. Maybe a sixty six year old mother who needs all the comfort and encouragement she can get!