A man’s spirit sustains him in sickness,
But a crushed spirit who can bear?
Imagine me standing side by side with Peyton Manning. He’s in uniform, holding one of those huge official NFL pigskins. I’m in sweatpants and slippers. Peyton plays football. He says so. And I say, “I play football, too.” As proof, I hold up my 70’s-vintage, hand-held, push-button Classic Football by Mattel with the green screen and the little red light bulbs.
I play football, too.
By comparison, it’s not really football. I know there’s a Madden game out there with a rumble feature and pretty realistic graphics and all, but I get dizzy watching the screen, and too much telly hangs heavy on my heart.
Once in real life I tackled Benjy Deubner on a full sprint. Wes Patterson took me down during a game of two-hand touch at Camp Kitchi-Khanis, and both Wes and Ben are big boys. So I know what real football is, and I know this game isn’t it. But it’s as close as I can get right now.
My friend Dave Roise and I have something in common (besides music, faith, frame, and our aging taste-buds): we both love flying. Dave actually had the guts (and the time – before eight kids) to get his pilot’s license. By the time I came of age, I’d read too many stories of young aspiring musicians dying in plane wrecks to spend time learning how to read the gauges.
But when I was a kid, my uncle Mike would take me up in his yellow Piper Cub. Mike would let me fly. My dad’s duck-hunting buddy, Bob, would land his green Cub on the road in front of our house, taxi down our driveway, and ask mom if he could take me for a ride.
How cool is that?
Once Bob offered to take one of my dad’s aunts up. She was a big lady. A Piper Cub is a fairly light, front/back, two-seater (technical jargon) with sticks and pedals coming up out of the floor for control (more technical jargon). There’s one stick in front of both seats. When one is moved, the other moves with it.
So you’ve probably seen enough movies and heard “Pull back!!! Pull back!!!” enough to know one pulls the stick back to go up. And you probably know where this is going. (I find it intriguing, but irritating when tangents hang unresolved – a useful writing tool when making a point, which this story may not – so here’s what happened…)
Bob taxied onto the road and picked up speed for a quarter-mile or more – whatever it was, it was significantly more than it’d usually require – and he pulled back on the stick to take off. The stick only went so far. And instead of the sudden silence of the landing gears leaving gravel, Bob heard the sound of my great aunt grunting oddly behind him.
Fortunately for them in this case the runway went on for quite a distance (as roads typically do). But most runways aren’t like that. Runways begin. And runways end. If, when accelerating down a runway, you aren’t off the ground before a certain point, you must throttle down your engine, stop, turn around, and in some cases, taxi all the way back to the other end of the runway (if you’ve flown you know how painfully long this takes) to try again.
One of the more difficult aspects of having a chronic illness (or cancer, or pain, or loss, or a handicap, or a hardship of any sort) is this nagging sense that no one really understands. This is both a reality and an exaggeration. It is true that my suffering is my suffering and not someone else’s. My pain really can only be known by me (with God being the exception – He knows).
But it’s also true that all of us hurt in some way at some time, and our hurts help each of us understand the suffering of others, which, by the way, may be incomprehensibly more horrid than any thing we may endure. So there are people who really do understand. People who get our pain better, perhaps, than we do.
The real wicked thing is how subtly a genuine need and our desire to communicate that need becomes an incessant demand to be understood. I’ve experienced this in others and in myself firsthand. It’s childish and completely uninviting. I can smell it in conversations and the words of others like a dirty diaper. Perhaps because I’m sitting in it so often myself.
Nonetheless it is necessary to let those who love us know how and when we hurt and how they can help – THOSE WHO LOVE US. What they do with the knowledge of our need is up to them. And how we respond to how they respond is up to us. We as much have the opportunity to love in the absence of love as they have in the presence of need.
So I have a hard time sometimes coming to the keyboard and tapping out the details of my pain (or even my descriptions of the good times) for the general public (versus my closest friends and family), for fear that I’m playing to the adolescent mantra of ME-ME-ME, whether by my whine or by my whinny. But I’ve come to recognize recently why it is that I must do this.
One reason is the obvious and often stated desire to inform the prayers of those of you who do pray for me. I’m not hesitant to say that I need to be prayed for. And I’m rarely hesitant to say how. At least for most things.
But the other that has come to mind is the fact that not everyone can put his or her hurts to words. I can. And perhaps my words will give voice to the needs that others have but cannot express. And perhaps this voice will speak into each of us a deeper longing to love well. And then perhaps we will do it.
So for those of you who read my last post and wondered what in the world was going on, I hope this clarifies. I’m writing to nurture empathy. Not for me, but in us, for others. If my method was too abrupt an aversion from my normal writing, I apologize. Please be certain there is no numbness to the kindness I’ve been shown in so many ways.
God has allowed me to experience in these passing moments what other people live with daily. I write what it was like so that those who can’t put their pain to words can be heard and perhaps understood. Then maybe the rest of us will be able to love them better, and maybe their pain will subside just a little.
Prednisone may cause euphoria, insomnia, mood changes, personality changes, psychotic behavior, or severe depression. It may worsen any existing emotional instability.
How many sci-fi plots have revolved around a weapon of some sort that fries a person slowly from the inside out? The kind of thing where there’s no evidence the person is being killed until he’s dead – except this tortured look of panic on his face right before he goes…
Mental maladies are like this. And those that are brought on by medications that doctors say are necessary to cure other illnesses are particularly diabolic. It is, as they say, the cost of the cure.
I have swallowed more narcotic and prednisone pills in my life than I would have liked to. But the evidence so far says I’m probably better off for it, considering the damage an unresolved Crohn’s flare-up can wreak on a guy’s gut, the immobility that is brought on by untamed pain, or the typical outcome of an unaddressed cancer of the terminal sort.
Nonetheless, the residual and cumulative effects of these drugs and repeated withdrawal episodes have nurtured in me a deep hatred for The Zone and OxyCrawl. I am thankful that these drugs do what they do to keep me alive and “well,” but every trip through is harder than the last.
This last weekend was one such journey.
I’ve explained this before, but the treatment protocol I’m on includes five days of high dosage prednisone every four weeks. This is a drug that one would typically be weaned from, but not with this protocol. It’s what I think is called “pulse” or “shock” therapy. I’ve done it twelve times now, and am scheduled to do three more. The 2 to 3 days after the 5 are the toughest ones for me. Other days I may be very tired, but these are days of fatigue plus – extreme fatigue, plus mental/emotional fragility of the obscene sort.
One might ask why this has not been so much of a problem before, and I wonder the same myself. While I have noticed the emotional upset in months past, these last few have become more and more difficult.
The only thing I can say is that I don’t think we fully understand the effects of these drugs on our bodies – the chemo, narcotics, steroids, and anti-depressants. I’ve noticed, particularly with the chemo, the same dose of any particular drug can trigger two different reactions at different times. It’s as though the last dose somehow changed my body, and this dose is dropped into a new pool (considering the DNA-bashing qualities of chemo, this may actually be the case).
Whatever it may be, there were a few hours Saturday and Sunday that were just plain scary. I was home alone with Aedan both times – which for the most part was a good thing, as when he’s happy he helps keep me sane and anchored. He was sick and had just woken from a fever and Tylenol-induced nap. He asked me for a glass of water, and when I tried to rise to get one for him, I had a debilitating anxiety-attack. My vision went fuzzy, my ears rang, my limbs tingled, my chest went numb, and I felt like I couldn’t breathe.
I couldn’t get out of bed.
By God’s grace I was able to keep this from Aedan’s knowledge. And after awhile, it passed. But I had to call Jen and ask her to leave her sister’s baby shower to come home. Later that evening, I was finer than a happy summer day.
Sunday, a similar thing happened, only the physical symptoms weren’t as intense. But both times, what was going on in my mind was the most terrifying thing. I was hearing overlapping lies and accusations said about me, and by me about others that I just couldn’t make go away. It was like I was in a car going too fast down a loose gravel road, with rocky ravines on both sides, dangerously close to careening out of control. As I paced the living room floor Sunday afternoon I prayed. I prayed simply but sincerely. And it took every ounce of my being – every calorie spent – to hold it all together. It felt like I was losing my mind – like I was just a breath away from going insane. This is a scary thing.
I was rescued by a few well-timed phone calls, a handful of well-placed prayers, and a couple chuckles with my dad. Again, come Sunday evening, it was as though the whole thing had been just a bad dream.
And while there are still daily aches and the hanging propensity for sadness, it is bearable and not unlike being human – something other than the medicine-induced mess I stumbled through last weekend. It seems at least for this month, the worst is behind me.
The Little Beast
But the thing I want to be really clear about is how covert mental-emotional volatility can be. It is a sneaky machine. And it is especially important, at a time in which it and the broken lives left in its wake are so common, to understand how hard it is to detect. And how easy it is to dismiss.
While my mind was near the edge, my body was well-dressed and groomed. While my thoughts were falling apart, my words held together in conversation. I could be polite. I could be coherent. Yet with my closest friend, I had a hard time being frank about the urgency of my need for help.
Another thing to note is that it did not matter to me that the emotions I was experiencing were rooted in thoughts that were not true. It did not matter in the moment that my inability to master those emotions was due to the chaos of chemical reactions caused by medications. The pain and the panic were just as real as if I’d just watched my legs get crushed in some tragic accident.
Lastly, it was horrifying to realize in weakness how easily the recognition of something true (few really could know exactly how I hurt) was twisted into falsehood (no one cares, this will never change, I’m all alone…) and turned into the opportunity for some very destructive emotions.
Traditional doctrinal language for this is “carnal nature, the old man, the flesh…” When our will is weakened, this beast of a thing thrashes about as in the throes of death. Even, I believe (not all doctrine teaches this, though I believe the Bible does), in the minds of those who have been redeemed.
We are all utterly dependent upon the grace of God to keep it together, and the mercy of God to hold us when it all falls apart. And I believe that the evidence of this grace and this mercy is most often more than merely an esoteric, internal experience. It is a very visceral, practical outworking through the words and actions and prayers of people just like you and me. It may end in an experience of the spiritual sort, and it most definitely begins there (love starts with God), but it is most often articulated through the concrete acts of compassion in flesh and blood conduits of God’s choosing.
For me this weekend it came through the likes of my boys Aedan and Eli, my mom and dad, good friends Dan, Debbie, Bruce, Mavis, Mark, and Ben, and my beautiful bride. The rescue God gave came through them. I’ve gone to great lengths this last week to chronicle the details of this experience (not all of it posted here), partly so I’d never forget, but mostly to help fortify the resolve of folks like you reading this to become the rescue in the lives of those you may know who suffer in these ways.
I journey through these wicked wastelands a handful of days each month, but some people live there. A few have taken up residence because they don’t want to leave. But maybe others are still there because there’s nobody who knows where they are, or how much they hurt, or how they can be helped. If nothing else, I hope my words this week have served to give voice to the answers to these questions, if not the answers themselves.
Another fun trip down the runway.
There’s so much more I could say, and I hope to, but not here. Not now. I appreciate the attention you’ve given to have read this much already, and I hope you’ve enjoyed it, but I’ve already pushed this blog well beyond what blogs were made to do. Any more would be material for a book, not a blog.
But briefly, for those of you who read these updates to know what we’ve been up to, I must tell of some real good times between the bad. Better said, the bad came between the good: Christmas with both families; a New Years solo retreat at Mount Olivet Retreat Center; a handful of speaking opportunities; a three-day trip to Michigan for a pastors/leaders conference at Mars Hill; a cold weekend at the Fargo Ramada with family (two trips down the water slide); a weekend at the Cotton Mansion in Duluth for our five-year anniversary; and plenty of life-shaping one-on-one with my boys.
There has been much good.
That said, at least twice we’ve throttled down at the end of the runway and turned around to take another run. It is hard to get off the ground. And with three more courses of this chemo/prednisone combo on the calendar, it’ll be summer before we’re able to do something more than spend fuel running back and forth down this runway.
But the run is still a rush. While it’d be as wrong for me to say I’m well now as it’d be for me to say I play football like Payton Manning, I sure don’t mind pushing these buttons. There’s no doubt here that when God has done what He means to do in and through this junk, it’ll pass.
Trusting that I am forever…