Thursday, July 20, 2017

The Days Before Surgery

In the days before a major surgery, we fall into an uneasy rhythm. Neither of us really sleeps well. One of us is worried about the waiting and then the caregiving and then the weeks and weeks of single parenting. The other of us tries to alleviate his fears about all that could go wrong by working overtime in futile attempts to do all the things that need to be done while also nursing an increasingly uncooperative back. Pain and guilt and disappointment are not insignificant factors in the calculus of our arguments in this week before surgery.

I'd be lying if I said that the dominant emotion I feel leading up to surgery isn't anger. There's an anger bordering on rage that percolates in the back of my mind and settles into my stomach in ways I never fully anticipate, and I fail to suppress it completely. At unexpected moments, it spills out onto Ren and the kids, paving the way for guilt and fear to coat the nooks and crannies of my consciousness.

The thing no one tells you about being a caregiver is that it will make you mad, and it's an anger that has no place to go. I want to be mad at Ren for having such a shitty spine and for convincing me that he would always be the healthy part of our "in sickness and in health." I want to be mad at the kids for not rising to the impossibly high levels of cooperation and performance that times like this require. I want to be mad at friends and family who don't reach out or offer to help. I want to be mad at all of you whose lives aren't completely upended every 6 to 18 months and who can imagine what the future will look like well enough to plan for it. But, I know this anger is inappropriate, so I try to distract myself with mindless activities. I spend too much time on Facebook and look for reasons to run useless errands. I obsess about stupid stuff. I pick fights with Ren.

Do you know how to remove a blood drain? Can you tell the difference between a skin irritation caused by adhesive and the beginnings of a wound infection? When is lethargy the sign someone is exhausted from major surgery and its recovery and when is it a sign of something more serious? Does unexplained pain merit a trip to convenient care, or does it mean you should go straight to the ER? What about a cough? Is it allergies? A cold? Or the beginning of so-call hospital induced pneumonia? These and many more are the kinds of questions I am expected to be able to answer when I am put in charge of the care of a person who's just had another major surgery, and, while the surgeon, your primary doctor, and the hospital are great at making sure you're well enough not to die on the operating table, they become surprisingly hands off once you're sent home. I suspect that maybe what I am angriest at is a healthcare system that sends people home after major surgeries--which are benignly referred to as "procedures"--while trying to convince them that they'd be "more comfortable" at home or that short hospital stays are "safer," a healthcare system, coincidentally, that also provides so little support for families of kids with special needs that a major health crisis like this makes it nearly impossible to move forward. But, I'm not supposed to be political. This is a humor blog after all, so forget I mentioned it.

By the day of surgery, I will reign in all of these frustrations and fears, and I will sit with Ren for hours as they shave and prick and pull and ask dozens of the same questions. Then, I will watch as they use a marker to map their plan on his back like a football coach diagramming plays. When they wheel him away already hooked to an IV with his head in a surgical hat, I will walk to the waiting room and wait. As the hours pass, I will struggle but ultimately fail to suppress my anxieties. During the impossibly short few days he stays in the hospital, I will keep him company and advocate fiercely for him. On day four (!!), he will be pushed out in a wheelchair, helped into the car, and propped on pillows, and I will drive him home, slowly, avoiding bumps and taking the turns along the way carefully, hesitantly. Once we're home, I will support his full weight as he gingerly makes the seemingly epic journey from the garage to the bedroom where I will help him get comfortable in bed and where he will essentially stay for months until he is ready and able to rejoin the world of the living.

In the meantime, life will go on. The kids and I will figure out how to find joy and have fun and include Ren where we can. I will remember what it's like not to feel so raw and vulnerable. And,(hopefully, most likely, assuredly) I will find my sense of humor again.

Monday, June 12, 2017

On Getting Pummeled

Growing up in a small town in the rural Midwest, not surprisingly, I didn't get into many fist fights. In fact, I was only ever punched once, by a kid named Dallas who should've been in 8th grade, not with me in 6th. Dallas stood beside me in lunch line. I was the last name in the alphabet, and he was the first kid to transfer in that year. When Dallas wasn't in detention or in-school suspension, he stood next to me in line and sat next to me at lunch.

Dallas and I didn't have much in common, so we rarely spoke to one another. He sought to be (and on some level was) an intimidating kid. You'd think, then, that I would give Dallas his space. And, normally, I did, but you guys, 6th grade was rough; I was in a class with all sorts of kids who got into all sorts of trouble, and on this particular day, I guess I'd had enough. Because, when Dallas started cursing because our line wasn't getting picked to go in for lunch, I turned to him and pointed out that if he'd shut up, our chances of going would increase considerably. He responded by shoving me, so I shoved him back. That's when he clocked me.

I don't know if you've ever been punched in the face, but it's a weird sensation: CONK! That's what it sounds like, followed by an odd ringing sound (I mean, I guess I understand the phrase "getting your bell rung" better thanks to Dallas). I was less hurt than really, really shocked that he actually hit me. Sure, I ended up with a brushed cheek and a stiff jaw, but more than that I walked away with a visceral understanding of just how unnatural violence is. Bodies aren't meant to be punched, and there is no way to reason around the violation that occurs when that line is crossed.


Our bodies have limits; this is the lesson I've been reminded of over and over again over the past few years. We are not Wile E Coyote who can peel himself up off the road, re-inflate, and jump back into the chase. In fact, these bodies we inhabit are very, very fragile. Ren's brother, full of life one minute, expired on the sidewalk the next. Ren, able to run a marathon one night and unable to walk the next day. The body, it betrays us.

Part of why I am thinking about this is because I have watched the man who used to run to the peak of the mountain to check out the view before running down to get me and take me along to enjoy it be completely waylaid by his own body. Ren has literally shrunk before my eyes, bending further and further forward as his spine slowly but surely gives up on him. We have been together for 20 years, and this tragic saga has dominated the last six. It used to be that the most stressful part of the saga of the spine was that we didn't know what would happen next--it was like watching a super slow-motion chain-reaction train wreck with no end in sight. Now, though, the nature of our tragedy is clear. Ren's back is done; he will have a fusion of the thoracic spine, T1-T12--twelve full levels compared to the two and three levels of his previous two fusions. The surgery itself will take 6-7 hours with another 2-3 hours in the recovery room. After that, it could take 1-2 years before he is "back to normal," though we all know that normal is long gone.

I don't know how to describe this disruption to our lives as anything other than violent. The children no longer remember life before Dad's back went south. They don't remember the hiking, the running, the playing. They don't remember Dad not being in pain. It's hard not to feel mad and sad and jealous of all the people around us who are going about their lives raising children and building amazing (not tragic) memories. Surgery #6 will stop us in our tracks. I will become a single mom. Ren will miss months of our children's lives.

The other reason I've been thinking a lot about violence and the limits of the human body is the very real struggle we are having with aggressive meltdowns. I've written about autism and meltdowns many times before (here, here, and here, for example), but this is different. Those meltdowns tested my mental stamina. These test me physically. And, what I have learned is that I am not strong enough. Because I am mom, I am the recipient of most of the aggressive meltdowns that happen at our house. And, because I am not a cartoon mom, I end up with scratches and bruises and wake up with aches and pains. 

Since I am not strong enough to defend myself, Ren has been intervening. Perhaps the greatest irony of all is that despite his crappy spine, Ren is still stronger than me. When a meltdown starts, using some story about Power Rangers or superheroes or Godzilla as a distraction, he swoops in and employs a simple judo move to neutralize the situation. Then he sits calmly and waits for the episode to pass. It makes me mad that I am not strong enough to hold my own; I hate that I crumble after a few good right hooks. With a spine like his, Ren shouldn't be wrestling on my behalf.

We are working hard to get to the other side of this aggressive meltdown phase before surgery #6 at the end of July. These days, I have a pretty good idea of my outer limits. It scares me to know that the challenges on the near horizon far exceed them. People often say that God doesn't give you more than you can handle. I think I used to believe this meant that the struggles helped us build character. I don't really believe that any more. Because, whether I have the strength to face the impending challenges or not, they are coming, and I know that I have no choice but to put my head down and walk into the massive raging hurricane, one foot steadily in front of the other.