The last 4 months have been an absolute blur. Most of the time I have trouble keeping track of where the time went, how fall so quickly turned into winter, how Christmas has come and 2012 is bearing down upon us with breakneck speed.
When life moves that fast, it can bring things into a strange sort of focus and change the way you perceive life. When every day brings a new clinic visit, going to the hospital, having some kind of procedure, etc., it sort of feels like every movement forward is a victory, every setback a defeat, but still every moment and every day is so crucial, so important. In such a context, there is both excitement and anxiety, hope and trepidation.
Not quite a month ago I was on my back in the hospital, barely wanting to move and feeling at the lowest point of my life. Now, I am back at home, feeling better and actually having some form of a normal life. To have such a dramatic change in such a short period of time, to be on an upward swing was an amazing experience, both going through it and in retrospect.
Eventually the dramatic changes stop, especially with stem cell transplants. After about 45 days post-transplant I have entered a period of relative stability where counts ebb and flow very gradually as I am slowly incorporating my brother’s stem cells, my immune system is rebuilding itself and steroids are both suppressing that immune system and preventing rejection. It has become (and will remain) a very slow, drawn out ordeal in which progress is agonizingly slow.
And that’s when it hits you. What I like to call The Grind.
You get to a place where things settle down, and you begin to face the day-to-day realities of what you actually have to do to make it through this, and I am beginning to suspect that it is in the mundane where the mental and physical toll is to be had and faced.
I knew going into this whole thing (at least intellectually- ha!) that the physical toll on my body would be immense. After all, chemotherapy is extremely brutal, especially when the final dose is meant to eradicate one’s immune system. For most of the fall I was unable to do much more than lay on the couch or on my bed simply because of the sheer exhaustion of it all. I attempted to keep as active as I could, but it was difficult.
The thing about atrophy is that it is so subtle. It creeps up on you and catches you unaware, eating away slowly and silently, and it’s not until it’s too late that you discover the extent of the damage. That was one thing I was completely unprepared for. When I was going through chemo and in the hospital, it was natural to feel tired and lay down all the time. Now that I am back at home I have finally had to come face to face with the scope of the atrophy.
For example, I used to have pretty strong leg muscles, especially in my thighs and calves. Three months of chemo essentially devastated any leg strength I had, and I have to admit it was incredibly disconcerting to discover. I can remember how I used to be, how strong I used to feel, and to come to the realization of how much of that has been lost was not an easy thing to deal with. And I think I know why.
The dramatic changes are exciting. To go from the hospital to feeling better a few weeks later gives you something to hold on to, to look at and feel good about, something to truly celebrate.
But there is no dramatic change one can apply to atrophy, no magic fix that will reverse the damage. Rather, the only remedy is a lot of time and a lot of work. It means that there is not going to be a sudden flash-of-light moment where you are back to where you were, but that every day, every moment is going to be a struggle to take the effort and undergo the discipline to get to where you want to be.
And any progress is going to be slow. Really slow.
It is perhaps in the day-to-day grind that we truly come to terms with who we are. The crisis moments of course bring that about too, but the mundane has a way of revealing our true character, simply because there’s no flashiness to it all, nothing bold or arresting. In every moment there comes the choice to move forward or to move backward, to progress or to atrophy. Every decision becomes an indication not only of who I am but also a directing arrow of who I want to be.
For me, that is where the real mental strain has begun to manifest itself. It is still extremely frustrating to find myself so weak and fragile when I know where I want to be but knowing it will take a long time to get there, especially when I haven’t felt like myself for a long time and want more than anything to do so. Progress is slow and painful and requires more out of me than I usually want to give. But I suppose if I were to be honest with myself, that probably isn’t much different than how I have lived most of my life.
A week after my transplant, I was laying down on a bed in the clinic because I simply didn’t want to move. The nurse practitioner came in and said something I haven’t forgotten: If you’re going to get through this, you need to be vertical more than you are horizontal.
Most of the time I feel like I’d rather be horizontal. The unsettling thing I have discovered is that it’s not just in regards to the stem cell transplant, but actually most things in my life. Looking back during the many moments of introspection afforded to me in the middle of another sleepless night, the realization is that my natural inclination is generally to want to be horizontal, to seek the least resistance possible, to avoid whatever extraneous effort I can.
It kind of makes me ashamed to have to come to grips with that, because I generally like to maintain (or pretend) in my own mind that I am a pretty disciplined person. And perhaps it’s not as bad as I am making it out here; after all, this seems to be confession time and I am also heavily medicated, so results may vary. Nevertheless, I can’t shake the feeling that so much time has been wasted, so many opportunities missed, so many chances for growth and life have been squandered simply because in my normal human frailty I want things as easy as possible.
I am reminded of the first lines of one of St. Augustine’s prayers which he composed after 30+ years of dissolute living and searching:
Too late have I loved you,
O Beauty so ancient,
O Beauty so new.
Too late have I loved you!
You were within me but I was outside myself,
and there I sought you!
As I face the long grind of recovering from this transplant, it is quite honestly overwhelming to think about. Part of it is the medication, but just contemplating the road ahead and all the strain and effort it will involve makes my head swim, fills me with anxiety and seems at times like something that will never actually materialize. It is often quite discouraging, even though things seem to be going pretty good.
The thing is that I don’t want pretty good for a long time.
I want better, now.
Don’t we all.
I have been learning, not necessarily by choice, the value of discipline. More confession time: I don’t like to discipline myself. Being vertical is not something I usually feel like doing, just like the day on the bed in the clinic. I would rather go lay back down most of the time if my feelings were any indication.
St. Paul said that I beat my body and make it my slave. Most of the time I indulge my body like a mistress.
I am struck by Paul’s language about making his body a slave. After all, a slave has no choice but to do what his master says. When I think about the relation of myself to my body, it makes me wonder who the slave is. Looking back over my life, when I get an urge to eat something, I often eat it, whether or not I’m hungry. If I want to buy something, I buy it, whether or not I need it. In so many myriad ways I find that my feelings and urges and desires have an unmitigated control on much of what I do.
Discipline is the only way we can master our feelings and our urges. It gives us the habit of denying the natural tendency toward atrophy and self-indulgence so that we can become more than what we are, so that we can grow and develop beyond the present state we are in. We are meant to be vertical in every area of our lives. Discipline, although it is hard, supplies the state in which we can do what we need despite how we feel. It begins as an act of the will, sometimes a very sheer act of the will in the face of everything that competes and beckons against it. But as the will is developed and nurtured into a habit, that very act can become a sort of second nature that takes over and sustains you even when your will feels weak, your mind can’t think straight and the feelings run so strong and so deep.
Enter the Treadmill.
What that has meant for me, among other things, is a lot of walking. Even though I only get a few hours of sleep at night, and even though more than half of the time the last thing I want to do is get on a treadmill and walk, I have to discipline myself to do it.
It wasn’t easy, and often times still isn’t. After the first few days out the hospital the last thing I wanted to do was walk. Every feeling was to lay down, to get horizontal again. But I had to make a choice in those moments to get vertical and walk. Even though it was hard, I began to find that the more I did it, the more I subjected my feelings to my will, the easier it was for that choice to become a habit. Now that habit is able to make up for the feelings when my will feels weak which allows me to do what I need to do even when it is the most frustrating.
Again, I am nowhere near being a saint. I struggle every single day between my will and my feelings, and not just with the physical aspect. The whole process has affected me physically, mentally, emotionally and spiritually. It has been a constant struggle to try and maintain a healthy spiritual life. After all, Sunday worship has been a part of my life since I was born. Being in isolation for four months and unable to worship God in a corporate setting takes its toll on you, even if you don’t realize it. It’s something I cannot change right now, but that doesn’t mean the effects don’t remain. As I look back over the last four months, I have noticed a tendency to let that part of my life slowly atrophy; fortunately not as much as my body, but it happens.
I don’t think I realized it until my stint in the hospital, where I had to come to terms with a lot things. It is so easy to let things slip away, to allow one’s love for God to ever so slowly grow cold. The worst part is that we often don’t realize it until we come face to face with it and realize what has happened, and to be honest that kind of scared me. I felt so ashamed and so weak, much like the disciples must have when they fell asleep when Jesus asked them to stay awake in the garden. I have always wondered how they could have done that, until I realized that in many ways I fall asleep on Jesus all the time. I get horizontal when he wants me to be vertical. He told the disciples the spirit is willing but the flesh is weak; sometimes I have to wonder how willing my spirit actually is.
That realization was not an easy experience, and all I could do was ask for forgiveness and the grace to discipline myself to stay awake. It has not been easy by any means, and I am nowhere near where I need to be, but God is rich in mercy and has been helping me to make prayer a more consistent part of my life. The medication and the isolation do not help by any means, but I also have had to lay aside the all-too-easy excuses and decide that this is something important- actually the most crucial thing- and I need to be willing to slug through the mire of whatever I feel if I am really going to give God the love that he deserves and desires and has given to me in such abundance.
But more than just will, I am finding it has to come down to love. Discipline in any area of life is valuable, but if it exists only for its own sake, it can quickly become an idol. As I move through the moments of this experience, I find I have the opportunity to take the things I need to do physically, mentally, and spiritually and focus them beyond just myself and my circumstances, to go past how I feel and where I eventually want to be, to orient them around God’s will for my life and the great gift and responsibility he has given me with every moment I am alive. In that manner, my will and my love can come together in the muck and the mire of the day-to-day struggles and be transformed into something I could never accomplish on my own.
It is perhaps only the constant pressure of the grind that can turn ordinary rocks into diamonds.
In the end, the treadmill is probably the perfect metaphor for how I feel right now. I know in my mind that it is doing me some good, but as I walk it still feels like I am going nowhere, forever walking in place. I want the goal to be reached now, not the slow and constant plodding that is the only way to get there.
I am learning, ever so slowly, that discipline is the only path out of this and is the only way I am going to be able to deal with the mental and physical and spiritual strain that the grind tends to bring. With God’s help, perhaps someday I can obtain the discipline I so sorely need. I find my mundane, daily grind prayer echoes the opening of the liturgy of the hours:
O God, come to my aid.
O Lord, make haste to help me.
If that was the only thing I ever prayed, it would probably be the most honest thing I could ever say, because it’s true.
Every single day.
So here’s to staying vertical.