The last few months have been kind of rough.
I’ve gone through three intensive rounds of chemotherapy, the last of which was meant to eradicate my immune system so I could get a stem cell transplant. Not an easy process.
I certainly don’t intend to bore you with all the details, but it has involved a lot of clinic visits, blood transfusions, medications, hospital stays and the like. Needless to say, it’s given me a lot of time to think and contemplate a lot of things, and in the moments of lucidity between mind-altering medications I’ve been trying to compose some very rough and raw thoughts about the whole process, mostly as a way of thinking things through for myself, but also perhaps to be a helpful insight into some things I have learned and discovered through this whole process, especially as I am still very much in the midst of it. The Prednisone makes my head spin quite a bit, so bear with me!
One of the most difficult aspects of this whole affair has been the sense of loss that I feel from time to time. It’s somewhat difficult to describe in any meaningful way, but it’s sort of the feeling that somehow, somewhere I have lost who I am as a person. Obviously (well, maybe…) I am still me, but sometimes the things that are a normal part of your life seem so familiar, that when they are gone you feel lost and out of touch with who you thought you were.
For example, over the last few months I have been unable to work at my job. Now I like a vacation as much as the next person, but I also really love my job, especially being able to be creative and use those skills on a day-to-day basis. The physical and mental toll of the chemotherapy as well as the medications that I am on have essentially stripped that away. It’s hard to describe the way it feels to not be able to concentrate, become filled with self-doubt and second-guessing, wondering ‘will I ever get my creativity back?’
Among other things, I also have had to put a hold on any sort of music, as I have to be very careful about germs (guitar strings get really gross!). That has been hard, as song-writing has been such a large part of my life.
I also can’t go outside. You never really realize how much of a blessing it is to stand in the sun and breathe in the air until you can’t do it anymore.
Probably the hardest aspect has been the isolation. Since my immune system is rebuilding itself, I have to stay away from everyone. Friends, family, co-workers- everyone. The only two buildings I have been in over the last few months have been my apartment and the hospital. The same walls get smaller and creep in closer and closer in your mind, and sometimes it feels like a prison- wanting to escape, wanting to get away, but not being able to, and having nowhere to go.
At times all of this colludes together to really bring about a profound sense of having lost who I am. I described it to someone once as feeling like I was kind of hovering between existence and non-existence. I have the tendency for the dramatic, but sometimes that feeling is very real and very powerful. I am normally a fairly level-headed and rational person, but I have had my moments of breaking down and just wondering if it’s worth it, wondering who I am anymore, wondering if it even matters.
At any rate, I don’t intend a litany of ‘oh look at how bad things are for me.’ Rather, I just want to set the stage of my emotional approach to rest of this process and the things I have been learning, struggling with and discovering, because it really begins here.
“Why?” is a dead end.
I certainly don’t begrudge anyone the cathartic relief of asking why these sorts of things happen or why we have to suffer, but I have always found it to be a dead-end. Perhaps it’s because I tend to take a more philosophical than emotional approach to life, but as I contemplate the sheer complexity of even the most rudimentary aspects of existence, it is clear that my finite mind is not capable of grasping even these, let alone some metaphysical answer to a riddle I cannot even begin to ask. As I think about it, I suspect that even an answer to the ‘why’ would not be sufficient. I am reminded of the book of Job, and how it operates on two levels. At the end, Job is never given the reason or the ‘why’ for his suffering. Interestingly, however, the reader knows exactly why he is suffering, and the riddle is supposedly solved. The difficulty is that even though I know the answer, it honestly doesn’t really seem like all that good of an answer. Again, my mind is too small to wrap itself around even the obvious.
When we think about our suffering in relation to God, we tend to resort to easy answers. I often hear about how suffering is the result of our broken world, a natural and inescapable aspect that is part and parcel of our existence. In the midst of this, God does not desire us to suffer but works through it to bring about good. And I think all of that is true. However, it seems to stop before it really gives any meaning to it all, before the answer has any teeth. In the end, stopping there seems to make suffering simply looking in the gaping maw of nothingness and meaninglessness. It has no purpose beyond purposelessness. Worse, God and I seem to be in the same boat, perpetually reacting to dismeaning and privation, as if always trying to escape from a black hole. In this, it often seems the only difference between God and myself is that God hopefully has more resources and foresight than I do.
As I contemplate these things, I am continually brought back to the Gospel of John where it is said that In the beginning was the Word, and the Word was with God, and the Word was God. Word in this passage is Logos, which is not simply a ‘word,’ but is multifaceted and replete with meaning. It points to a fundamental purpose, a primordial reason behind everything. The upshot is that against the seeming background noise of nothingness that the universe seems to be, there is a reason underlying it all. Because of this, nothing is without meaning or purpose, since everything that exists does so because of the Logos. This is perhaps one of the greatest triumphs of the Christian worldview over the pagan world, in that the universe became infused with meaning and reason.
But John goes even further. The Logos is not simply some ethereal reality out there somewhere, not some distant ground of being that has no contact with our existential reality. Rather, The Word became flesh and made his dwelling among us. The pinnacle of the Christian understanding of God is the Incarnation for this very reason- the very one who is the purpose and reason behind and in and through everything that is has united himself to our condition, has become like us. All of the ways we feel and suffer and toil and groan are taken up by the one who sustains our very existence. Because we have been united to God in this way, there is no possible aspect of our life that can be without meaning. The great maw of nothingness has been banished completely because of the Incarnation. The ‘why’ of all our doubts and fears and sufferings is found not in some intellectual explanation or emotional release, but is found in the very God who is the ‘why’ of our being, the reason we even exist. To be united to God is the only answer, for it is the very purpose of even being at all.
Gratitude is the Antidote to Despair
When you feel miserable, it is extremely easy to keep feeling miserable. In fact, it is absolutely no challenge to make yourself feel even worse. Despair is one of those subtle things that creeps in in such small ways, that it can be difficult to realize it until it rears its ugly head in moments of extreme weakness.
As I first started this process, I felt fairly confident in my ability to handle it. I presumed to have the intellectual ability to understand what to expect, how to respond to situations that might arise, and all those other presumptuous things that I so arrogantly feel myself capable of from time to time. At first I felt I was handling the chemo pretty well- I’ve been through it before, and although this regimen was far more intense, I had confidence I would be able to ride it out. But as the days turned into weeks, and the the weeks into months, as the fatigue began to wear away at my body as my very muscles atrophied, the mental and emotional toll began to make itself felt in an extremely intense way. There were moments of lying awake at night wanting not to go on, wanting to give up, feeling that it really wasn’t worth it. I fancy myself to have a strong will, and to be broken down in such a way was humiliating, a blow to my pride, a sign that I was not as strong as I thought I was. In those moments I found myself wondering who I even was, sickened by this pathetic spectacle of weakness. How did I get to be this way? Is it even worth the effort anymore, if all I have is this lack of strength, this disgusting wasting away?
It wasn’t until my second hospitalization that I really hit rock bottom. I had been unable to sleep and was utterly exhausted, the meds were swirling my mind around and I simply felt awful. I felt abandoned, alone, useless, worthless, just sort of existing but without any reason or purpose. In that moment I felt a despair I had never really experienced before, as if I was floating alone in a cold and and empty space without any way to get out. All of my prayers seemed empty and hollow, as if no one was listening, or perhaps as if I wasn’t even talking. It is hard to describe.
God is merciful, and began to bring back to my mind something about giving thanks in all circumstances. To be honest, in that moment it seemed like a joke. Here I felt as if I had fallen out of the bottom of the universe, and I am supposed to have gratitude for something? Yeah right.
Despite my best efforts to indulge in more self-pity, I decided to try it. After all, I felt as if I had nothing left to lose. Actually, that’s not true. I still had the self-pity to hold on to, like some kind of anchor to who knows what. Nothing inside me wanted to let go of it, but every feeling I had wanted to grasp on tighter. I realized it was going to take a sheer act of my will, enlivened by God’s grace, to engage in an act of gratitude. I started to think of things to be grateful for. I tried to start out big- existence, life, family, stuff like that. It didn’t work. When you turn your gaze so far inward and envelope yourself in so much darkness, the brightest lights can end up blinding you.
So I started with Legos. Over the preceding weeks I had received some Lego sets to build to help pass the time while I was in the hospital. It was fun to be able to have something to focus my mind on, even for a few minutes. So in that moment of despair, I started by thanking God for Legos. A small and seemingly simple joy, even silly perhaps. I found that as I willed myself to be thankful for Legos, for a moment I was able to turn away from myself and my inward gaze where I found only despair to something in which there was joy and beauty. A small spark to be sure, but perhaps sometimes that is all it takes.
Beginning with Legos, I was able to find other small things in which I could find joy and gratitude, even other silly things like biscuits and gravy, The Next Iron Chef on the Food Network, Sour Patch Kids, and on and on. I don’t think it actually matters what it is, the important thing is that having gratitude for anything refocused my gaze from the darkness I felt within to the utter delight and joy of God’s creation without. Starting small led to bigger things, and the more I began to have gratitude for small things, the easier I found the transition to larger things.
When you feel miserable, that last thing you want to do is to have gratitude for anything. Self-pity becomes a form of self-indulgence, because it comes naturally and is exactly what you feel like doing at the time in response to challenges or suffering. What happens is that when you continue in that form of self-indulgence, your gaze turns inward so much that everything becomes colored and tainted by the pain and darkness you feel inside, so that looking out at anything else takes on the same shades of despair that you naturally feel inside.
In this way, gratitude is a form of self-denial, in which you put aside the natural way you want to respond. It ultimately comes down to an act of the will, because in the moment of despair the absolute last thing you want to do is to have gratitude. Self-denial is the only way to make moral or spiritual progress, and so I have come to find that in my feelings of despair and helplessness I am continually confronted with the choice of indulging my natural tendency towards self-pity or denying my feelings and willing myself to be grateful. Even a small act of self-denial can be very powerful, and as it becomes a habit it begins to change the way you perceive yourself, the world and your circumstances since you begin to train your mind, heart and will to focus outward rather than inward. If your gaze is directed through the joy and wonder of God’s creation and the life he has given you, there is no limit to what you can be grateful for, but if you allow your gaze to be mediated through the way you feel, the darkness will never end.
This is not to say that I am a saint. I struggle with this every single day. Every time I feel tired or think through what’s going on in my body I feel the underlying urge to let self-pity take its course, and so many times I fail. But I am trying, and making gratitude a part of my life has begun to dispel the despair.
Suffering is the Path to Spiritual Growth
I have always found it easy throughout my life to say that I have a strong faith, to say that I believe in God, etc. And I honestly believe (or at least want to believe) that I have meant it. However, suffering has a very peculiar way of cashing that out in your life. It really forces you to take stock of how real this is to you in a way that nothing else can. Over all the chemo treatments I gone through over the course of my life, I have always found myself at this sort of crossroads where I have to really come to grips with how much I really believe, how much faith I really have, how meaningful this actually is to me. It is never pleasant, because I suppose in my arrogance I always assume I have more faith than I actually do, whereas in these moments I come to realize how weak I am, how pathetic my lip-service seems to be most of the time, how little faith I actually have. In those times, my prayers almost always ends with Lord, I believe, help my unbelief.
Suffering strips away my pretensions and self-delusions, bringing me face to face with who I really am and what kind of faith I actually have. Most of the time I am ashamed at how little faith I find I possess, and I can only pray that God will give me more. Perhaps the difficulty is that during the easy times faith comes equally easy because we don’t feel the necessity of it. God kind of is out there, I believe in you, but things are going pretty well so I don’t need to try too hard at this. It’s sort of like watching an exercise video from the couch- I can intellectually appropriate what is happening and what I need to do, and there is some value in that, but unless I actually work out along with it, the impact is nearly negligible. I think suffering is a sort of spiritual workout- not an easy thing to do and not something that comes naturally or even by choice, but something without which there can be no growth.
The same is true of anything- the only way to progress in anything is to undergo some kind of suffering. Learning, while I consider it enjoyable, takes a lot of effort that could be used for other things, but if I didn’t expend the effort, it would never happen. Exercise, mastering an instrument, loving someone- all of these things come with a cost, and I guess it always surprises me how I never really seem to apply it the same way to my faith. The scriptures say:
My son, do not make light of the Lord’s discipline,
and do not lose heart when he rebukes you,
because the Lord disciplines the one he loves,
and he chastens everyone he accepts as his son.
I don’t pretend to be able to parse out the intricacies of when God brings suffering into our lives, why that may be or anything else like that. All I can say is that in my own life the only times I really find myself growing in my faith is when I have to suffer. Sometimes it is through little things, and sometimes through big things like what I am going through now. I have no idea if God intended for this to happen to me, is allowing it, or perhaps even both or something in between or somewhere else. All I know is that in the midst of this whole ordeal I I have been forced to put my faith where my words are, to examine the veracity of my belief and and how it lines up with my life, to put aside the pretensions and posturing and arrogance and realize that I am ultimately helpless and frail, that my hope can exist only in God alone. Not in getting cured, not in getting better, not in any hopes or dreams I may have, but in the sheer confidence of God’s will and his love for me. If I don’t have the latter, the rest of it is a meaningless pile of ashes.
Suffering becomes the crucible where faith is forged, and I honestly don’t think there is any way around that. It is not easy, it is not pleasant. Everything inside of us resists the idea, recoils from the pain, would rather take an easier way out. I feel that every day, and in so many moments I want it to all end, for things to go back to normal, for God to just stop everything already in some miraculous way. And if that is God’s will, so be it. However, in the moments where God graces me with faith, I have to admit that if my faith and relationship with God is really going to be the most important part of my life, the very reason and purpose of my existence, then I must embrace suffering as a blessing in disguise, for it becomes the catalyst for me to grow in my union with God. It becomes the way to become a son of God. In this way faith must grow because I have no idea what is going to happen, no idea where my life is going. I am compelled to fully rely on God’s will for me, wherever that might lead, even if it’s somewhere I don’t want to go. My prayers become something like this:
God, I pray that you will heal me, but I pray that your will be done, and help me to really mean it.
In the end, I really want to mean it. Probably most of the time I don’t, and I have to ask God for mercy and grace and faith to do so. Not an easy thing, and I have no doubt that I will struggle with it until the day I die.
My only prayer is that God can use my sufferings to bring about my redemption, to give me confidence that he is always with me, that his love is greater than my pain and that he will somehow take this sad excuse of a person and somehow, some way turn him into a son of God.