What it was like Having Brain Surgery

Dear friends and family,

As many of you are aware, this past month I have been living in New York City and have had Deep Brain Stimulation Surgery. In total I had about 4 surgeries in 8 weeks. As you can imagine, there is a roller coaster of emotions welling within me. I’m trying to find the right words to communicate everything I have been through. I ask that you would give me grace as I write, and read to the end before coming to conclusions…

About four or so months ago, I had severe abdominal pain. I didn’t know what was wrong, but figured with time it would pass. But after not sleeping the entire night and 12 hours of nonstop pain, my mother suggested we go to the ER. After some testing, it was revealed through a CAT scan that I had a kidney stone. I was able to get a prescription for pain meds, and went home and passed it the next day.

The pain of kidney stones is so severe that many women that have had them say it hurts just as much, if not more, than childbirth. When you mention that you have had a kidney stone you typically get the knee-jerk reaction: “Oh my gosh! Those are so painful! 12 hours straight! I can’t even imagine!” It was painful, don’t get me wrong — it was a kidney stone, after all — but in all honesty, I’ve been through so much worse in the past 12 years. And as I got that knee-jerk reaction from more and more people, I began to realize that people, as sincere as they are, truly don’t know the depth of the emotional pain from my condition. Only God knows what I’ve been through. It’s comforting to know that God knows, but it’s hard knowing that there’s no way you can communicate your emotional and mental pain, and in that sense you feel very alone. There was a part of me that was irritated even telling people that I had a kidney stone, seeing the reactions again and again. I got way more of a reaction from people when I told them that I had had a kidney stone than I ever did when I told them I was having a bad day mentally.

Last summer, my emotional pain had reached a level that was unsustainable. I felt I was at the maximum pain threshold. I felt like I was treading water every moment of my life. I wished that there was a way I could “tap out”, but there was no way to “tap out” or to escape the pain, so I just felt like I was suffering unendingly. It got so unbearable that I actually began to wish I could die. I agreed to have the DBS surgery, not really with the hope or expectation that it would provide any relief, but with the hope that it would kill me. My hope was that in my death, I would be in heaven and free, and reunited with Jesus. When my doctors first presented the idea of surgery, I thought “maybe this is my way out”. With them prodding and poking at my brain, the chance of something going wrong was always there, and perhaps this was my ticket out of here.

I’m not afraid of death, but rather the unknown. They call OCD the doubting disease. Anything that is not 100% certain results in extreme stress. And so the uncertainty of what happens when you die creates severe stress for me. Do you go to heaven right away? Do you go to a soul sleep and await Christ’s return? Do you see a bright light, or are you surrounded by a veil of darkness? So many questions, and no answers… In some sense it is a little scary… The odds of something going wrong were slim, but yet again, they’re not taking your tonsils out — this is brain surgery. The risk is definitely higher. So I was feeling hope that I might die and also terror that I did not know what happened when people die.

I remember the first brain surgery I was going to have. We had gotten to the city earlier the night before, it was pouring rain and I couldn’t walk around. I felt tired and decided to just go to bed. We woke up around 4:30 AM. My dad cleaned my head with a special cleaning shampoo. I really didn’t say much, got dressed, and walked outside to our cab. I took one look up — it was the NY Times building (as we were on 40th St) — nodded my head and got into the car. We drove to the hospital, entered through the surgery entrance, and filled out the paperwork to be properly admitted for surgery. I’m a talkative person, and I didn’t really say much. The doctors and surgeons came in and explained how the surgery was going to proceed. I remember I got up and went to the bathroom, locked myself in, and just started bawling. It was years’ worth of emotions finally boiling out of me. I was all alone on the bathroom floor, sobbing with tears, and I prayed, “God, whatever happens, may your will be done.” I was reminded of how Jesus prayed in the Garden of Gethsemane (as He was about to be taken to be crucified), that He prayed a similar prayer to God the Father.

As I continued to sob, there was a part of me that wanted to call it off, as I wasn’t sure if I could go through it. But I knew I had to have this surgery. I just knew. There was no turning back now… It takes a lot of mental strength to go through and continue with something like that. (Enduring a kidney stone is a cakewalk compared to enduring the mental anguish.) I knew that they were going to cut my skull open and insert 3.5-inch electrodes into my brain, and I would have to remain awake for part of the surgery. If off by a millimeter, it could be the difference between life and death.

I struggled to collect myself but did my best and re-entered the waiting room with my family. I prayed with my family and in that moment, God gave me a lot of peace. I knew that no matter what happened, everything was going to be OK, even if I couldn’t see the whole picture. To be in the hands of God is the safest place you could be. So I proceeded with the surgery.

The surgical team came and took me back to the operating room. They shaved my head, put in an IV, and put my head in a brace. I was definitely starting to feel more calm and became more talkative. I even cracked a few jokes and the whole staff was laughing.

The surgeries went well. I did not have any brain bleeding or infections. And I was able to recover quickly from each one. I am thankful that my surgeries did not prevent me from enjoying NYC.

Although my original intention was the hope of death, I believe God is trying to give me hope through life. After turning on the machine and having it on for over 2 weeks, I can say that these past 2 weeks have been some of the best I’ve felt in over 1 year. I don’t want to get my hopes up, and I’m not out of the woods yet, but in all honesty, I have been doing better than I thought I would. Even though not perfect, I will take any ounce of mental relief I can get and consider it grace from God. I have been walking more, talking more, laughing more, and enjoying life all the more. I have been working on cool projects on my computer again, something I haven’t been able to do since the summer. Also, in less than a week, I will be able to get back on the road and be able to drive my car.

I want to thank all of you for your prayers and continued support. I am eternally grateful to every one of you. We stayed in a beautiful location in Manhattan, about 5 blocks away from the hospital. I even had a view in my bedroom of the Empire State Building. It was surreal to say I got to “live” in New York for over a month, and I took advantage of it every moment I could. I worked on my computer in the New York Public Library, coffee shops in Bryant Park, and art galleries. I gave tours to family and friends, pointing out everything I could, and highlighting my favorite buildings and architecture styles. For those of you that know me, you know I love skyscrapers. But it’s funny, as I’ve taken my friends, family, and even best friends on the tour, I always love seeing their reaction… “Man Caleb, I always knew you loved skyscrapers… but you REALLY LOVE skyscrapers!” A day after they had turned my machine on, I was so excited that I walked almost 15 miles in one night.

Without your generosity and support, none of this would have been possible. You have blessed me and my family beyond words and have overwhelmed us by your love and compassion. You made this happen, and as I said, I am eternally grateful to every one of you. I want to ask for your continued prayers, as I will be making monthly visits for fine-tuning and programming the device. There will be good days and bad days. There will be times where things probably won’t be as smooth as they are right now. But all in all, I’m feeling better, and I will gladly take it! I will keep you updated with everything and look forward to catching up with lots of you in person.

To God be the glory.

Never Give Up… Never Surrender!!! – Caleb

Funny story… When they first turned on the DBS machine, the doc said, “This setting might make you laugh,” and sure enough, when he turned it on, I burst out laughing… I thought to myself, “Man, I had a device surgically implanted into my brain and a guy is wirelessly controlling it with a computer, entering different numbers which in turn increase the current flowing through the device, and it’s going to different parts of my brain and causing me to laugh for no random reason. This is kinda creepy, but man is this wild!! I’m a cyborg now!!”