In Light of Suffering: Lessons from my heart transplant

What should we do when we suffer?

I thought I would take a break from my usual AI-related writing and jot down some of my ideas that hit a little closer to home. I’ll talk about my personal experiences with suffering. There is a lot in here that may be triggering, so please only read what you can. (Feel free to skip my backstory and go to the last section, it will just make less sense). A lot of this I have never put into words, much less written down, so this was very hard to write.

A bit of my life (You can skip this part, but it might help)

I grew up in a country that I, unfortunately, cannot disclose online. At age 9, my health suddenly deteriorated. Finally, I visited a hospital in the capital. After a quick ultrasound of my heart, the doctor declared I had to evacuate to the U.S. on a 24-hour basis. Having no time to say goodbye to my friends, I left for Colorado.

For the next 3 and a half years, I, who had once been an aeroplane-obsessed TCK (third culture kid) travelling everywhere in the world, would have to stay close to Children’s Hospital Colorado, and never go too far away. I couldn’t even go to the mountains in Colorado because they were too high for my heart to handle. Since I was diagnosed with restrictive cardiomyopathy (a gradual stiffening of the heart) I would, eventually, need a heart transplant. For better or worse, my heart failed much faster than my doctors expected. By age 12 I had to carry around a bag that pumped medication directly into my heart. Sometimes, the tube in my heart would get pumped upwards into my neck, then I would have to go to the hospital and get it repositioned. Regularly an at-home nurse would come to my house to clean the port (placed on my upper arm). Even worse, my 12-year-old brain thought that the bag of medicine looked like a purse.

Every day I became more tired and less able to do what I loved. It took every ounce of adrenaline for me to barely stand through my sister’s wedding. It got to the point where, though I tried to hide it, I would randomly fall asleep in the middle of activities I love. I remember I was playing Monopoly one day (at the time my favourite game) and, I must have fallen asleep because I woke up several hours later. I was also constantly dizzy, every breath I took caused discomfort in my lungs (which were filling with fluid). Finally, my doctor listed me for a heart transplant. This meant that at any random time, my parents would get a call from the hospital.

One night, it hit me that I could actually die. Mentally, I had always known this, but now it finally seemed real. Then, a few nights later:

“We have a heart” - the Doctor.

It had been two months since I was “listed”. I was in bed when I was woken up and told the news. I quickly ran to take a shower (which prevents post-op infections). It was all very surreal. On the drive to the hospital, my sister read some verses about things that sounded suspiciously like death.

Eventually, having arrived at the hospital, it was time to just wait. I played Uno with my uncle and Battle Ship with my cousin. I think I pretty much got to talk to everyone a little bit before going in. Oddly, I, who generally got very nervous about shots, felt no fear going into surgery. It wasn’t just that I felt peace, I did. It was an inexplicable knowledge, not belief, that I would not die, that God was protecting me. I knew it as well as I knew my own existence. This was a defining moment of my faith, and every day since then I remember that knowledge.

The next most defining moment of my life was when I woke up from the transplant. My eyes were blurry, I looked around and felt more alive than I ever had. I could see my heart beating through my chest and felt my pulse everywhere. Simultaneously I was in more pain than I ever imagined possible. For a long time, I drifted in and out of sleep. I was in and out of consciousness for the next couple of days, every few hours or so I would be roused and the nurses would drain blood from my chest using tubes that were inserted just below my ribcage. The process was unimaginably excruciating and I flash back to those moments several times a day, even over seven years later. Interestingly, my actual broken chest hurt very little in comparison, my back actually hurt far worse due to how far they have to stretch both sides of the rib cage open during surgery.

A few days later or so, they removed the two chest tubes. Pulling those out was even worse pain. Just after that, they removed two wires that were connected to my heart. This was also very painful. The removal of the catheter, breathing tube, and neck IV were, combined, nothing in comparison.

A few more days and I was allowed to go home. I was then readmitted for a while due to a mouth infection. After being released again, I developed a bad fever. I was immediately readmitted and it took them several weeks to determine what I had. After developing an increasingly horrible headache, they did a brain MRI and determined I had had a brain bleed during the surgery.

The following 6-8 months were defined by taking painkillers in what was a mostly futile attempt to numb the pain. There was enough blood, that when I turned my head I could feel the blood move, and the pain moved with it. Thankfully the bleed had happened in the peripheral of my head, it did no damage but it hurt. During all these ins and outs of the hospital, I made two friends who also had heart transplants.

Around a year after my heart transplant, after an amazing Make-A-Wish trip, my family moved to Germany. I arrived at Black Forest Academy halfway through my seventh grade. The next three-ish years were some of the best years of my life. I made amazing friends and got to visit about 16 more countries (bringing my total into the 30s). I even got to visit my old home again and see the people I had to leave.

Despite this, I was constantly sick, I missed about half or more of each school year. Every kid’s dream right? Not when you have to constantly play catch up and miss out on time with friends. I had to quarantine when things like the flu would go through my school. On the worst occasion, there was an MRSA case and my entire grade was forced to have most classes in a single classroom (which I felt was my fault). I rarely had enough energy to do the things I wanted to do or be in the places I wanted to be. It got bad enough that my family had to move back to Colorado for better health care.

I was entering my sophomore year at a completely new school in Colorado Springs. I hated being gone from Germany so much that I genuinely remember very little of that year. Anyways, near the end, Covid began. Having a *very* compromised immune system, I had to quarantine completely for the next almost one and a half years. The only people I saw were my family and occasionally others at an extremely socially distanced picnic. Those years were very different for me than almost anyone else’s quarantine. I still don’t fully know what to think of them. Several times, I had to quarantine in my basement or room for weeks because of a mini outbreak in my house.

During these years and the next year out of quarantine, three people very important to me died. My two friends died who had heart transplants (about a year apart from each other). Even though, at the time, we were no longer very close, I had a strong bond with both of them. A bond I didn’t realize until they were gone. Every day since I have wished I had somehow been a much better friend. This thought fuels all my relationships now. I also struggled with immense survivor’s guilt. Compared to them, my life since transplant had been amazing. I travelled the world, saw my nieces and nephews grow up; two of my sisters get married. And (in my mind) I experienced far more life than they had. If anyone should have died it should have been me. Only now do I realize how self-centred that thought is, though I still struggle with it. Then, roughly the time that my second friend had died, my amazing aunt who had been struggling with a brain tumour also passed away. I cannot tell you the number of times I prayed that if either of us had to die, that it would be me. Another thought I now know is essentially selfish.

I have always placed enormous pressure on myself to live up to the decision of my donor and/or their family. Living with the fact that someone died for me to live, has made my life confusing, to say the least. On the one hand, I live with the fact that I have two sets of DNA in my blood (I guess I’m an X-men!), that my old heart is sitting somewhere in a lab, and that there is a family out there, somewhere, still desperately missing their kid. On the other hand, all of this has completely changed the way I think about Jesus. I have to honour the owner of the heart currently in my chest. How much more should I want to honour the one who died to save my soul? Unfortunately, I generally do much better at the first.

All of these things led me to think of myself as a “main character”. I began to assume that I would somehow change the world. I always thought that part would come naturally. Don’t get me wrong, I still want to change the world. However, I have come to realize that God can use my suffering with or without my help. I had, as the Ancient One (yes I’m going to quote Doctor Strange in an article about God and suffering) put it, “Arrogance and fear still keep you from learning the simplest and most significant lesson of all…. It's not about you.” It’s not about me. It’s not about you. Our suffering hopefully leads us to become better people, but beyond that, we aren’t the point of our suffering. We may never know what is. Here are some of the lessons I have learned from my taste of suffering, take them with a grain of salt though, I’m just an idiot college kid with too much free time and a substack.

But first:

I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws. Ezekiel 36:26-27

Some scattered lessons learned

My favourite movie quote of all time is when Vision said, “A thing isn’t beautiful because it lasts” in Avengers: Age of Ultron. Cheezy as it may sound to you, for better or worse it is true. Your health, home, job, and life, are all impermanent. They will die. A lot of the chapters in my life ended before I would have hoped. Regardless, they were beautiful, and I wouldn’t trade them for the world.

The “good life” does not end “without any regrets” but rather a peace with them. I have plenty of regrets, but my faith is in God to redeem them rather than myself. Redeeming my story is up to Jesus, not me.

A good death is what defines a good life. We waste so much time trying to answer what a good life is, please, let’s move on. A life well ended is a life well lived, it has been redeemed. With this in mind, I think the “good life” part comes much more naturally.

My priorities are most likely wrong. Sometimes, I will prioritize personal development, health, school or my future career more than things with eternal value. What has eternal value? Your relationship with Jesus and your relationships (and impacts) with people. These are the only things you will take with you. Two things in your life matter, everything else has to be a means to those ends. If it isn’t, it’s probably worth cutting it out.

The odds don’t matter. Given only some of my medical history, the odds of me having survived this long are somewhere less than 5% (yes, I did the math). I now have relatively good odds at a normal life, even though at any moment my body could reject my heart. Honestly, the thought of figuring out some semblance of a “normal” life expectancy is terrifying to me. Living like there is no tomorrow comes too easily for me. I’m having to learn to live like there is one.

Bad, evil, and suffering are all very different. A natural disaster can be “bad” but few claim they are “evil”. Both evil and bad cause suffering, but suffering is neither evil nor bad. Suffering is simply a consequence, an effect, of our selfishness, someone else’s selfishness, a violation of our wills, the problems in the world, or all of the above.

Safety, health, and home are all illusions. They are very temporary. Whatever your situation, you live on earth, I promise eventually something will come along and wreck what you had planned. This will cause suffering, even if the outcome is far better than you had planned. I learned, subconsciously at first, that suffering is not bad, or evil, it is a consequence of selfishness. Why do I “suffer” when my college cafeteria is out of ice cream? Because my will was violated. Why did I suffer from the pain from my surgery? Because my own selfishness did not like or want the pain. Not that it is wrong to suffer for that reason!

Pain is the epitome of reality not being the way we want it. Our “bodily autonomy” is rarely violated more than when we feel physical or mental pain. Not only is the outside world “wrong”, but my own body is. That is a big deal. Is the solution then to become apathetic? I don’t think so, again, suffering is not bad, it can produce enormously good results. I would not trade an ounce of pain for who I am today. Rather, our goal should be to align our wills with Jesus in such a way that we suffer when he does. Only then can our suffering truly be objectively “valid”, and selfless. What many will tell you, when you are going through suffering, is to focus on yourself. I have seen this again, and again, and again. If self-love was the best path towards joy, the U.S. would have the best mental health in the world. This never works, trust me. Becoming more self-centred never helps you. Yes, care for yourself, and to a healthy extent, love yourself. Many people do not do either of these and they desperately need to. Many more people do not love others enough. Like no one. However, the only thing that truly helps us in our suffering is if we can align our desires with those of Jesus.

Does this reduce pain and suffering? Nope, if anything it will increase it. We will still suffer from physical and mental pain, only now will we also suffer from the uncountable evils that exist in our world. Every evil is inherently against God’s will. So why suffer with Jesus? Why align our wills to His if it only makes suffering worse? Because no matter what you're going through, you are alone, and no one fully understands you. No friend, counsellor, or pastor understands an ounce of what you're going through, not really. You are pretty much completely alone. However, we have an all-knowing God, who knows your suffering, and if the same things cause me and God to suffer, then suddenly I have a friend that understands and can provide me with strength and love. Remember, God is all-knowing; he literally understands your subjective suffering. And that is one of the many things that makes true Christianity different from every other belief system or religion, we have a God who cries. In that God, you will find your true Friend and King.