When the dust settles

In May I published a piece here about being sick for twenty-five years and being told I was fine. Then I did something I did not expect to do. I kept reading it. Not proofreading it. Reading it the way you’d read something somebody else wrote, over and over, for days. I read it in the truck between calls. I read it at night after everyone was asleep. And most times my eyes welled up and I had to stop, because if I kept going I was going to actually cry, and I was usually in the truck or sitting on the couch with people in the room. So I’d close it, look out the window for a minute, and go back to work. The moments I let happen, I let happen in private. What I could not have told you at the time was what exactly I was reacting to.

I think I know now, and it’s this. I lived those twenty-five years one day at a time, which is the only way anybody survives something like that. One tired morning. One appointment. One set of results that came back normal. Individually, none of it is unbearable. You get up, you go to work, you tell yourself this is just what your body is, and you go again tomorrow. Written down in order, on one page, it stops being a series of ordinary bad days and becomes what it actually was, which is a quarter of a century. I had never once seen the whole thing laid end to end. The article was the first time. That’s what I was emotional about. Not the illness. The math.

There’s a specific grief in this that I did not have language for, and I want to try to give it some, because I don’t think I’m the only one carrying it.

We have rituals for people who die. We know what to do. We have language for a marriage ending, for a job lost, for a friend who moved away. We have nothing at all for grieving the version of yourself that never got to exist. There is no funeral for the man I would have been at twenty-five with a working endocrine system. Nobody sends a card. He didn’t die, because he was never here. He isn’t a memory. He’s a subtraction.

But he’s real enough to miss. I think about the father I’d have been at thirty-five with the energy I have now. I think about the husband I couldn’t be because I had nothing left in the tank by six o’clock, and told myself and everybody else that I was just a quiet guy. I think about the work I’d have done and the shape my life would have taken, the ordinary things a person does when their body is not taking itself apart in the background. Because that is what mine was doing. Not all at once. A little at a time, for twenty-five years, and the accumulation eventually showed up as kidney failure and liver failure, two cardiac events, and a stretch where I could not walk to the end of my own driveway without stopping partway so I’d have enough left to get back. That’s what a quarter century of being told you’re fine looks like at the far end of it. I’ll never meet the man who didn’t have to do that, and there’s no version of the next thirty years where I catch up to him. That’s the loss. It isn’t dramatic, it doesn’t photograph well, and there’s nowhere to put it.

What I didn’t understand in May is that a subtraction on one side of the ledger comes with an addition on the other, and the addition turned out to be harder to talk about than the loss.

Here’s the part that took me longest to work out.

The quiet guy everybody knew was not a personality. It was a budget. Feeling things costs a body something and mine did not have the surplus, so I stopped spending. I didn’t have the energy to raise a concern, so I didn’t raise it. I didn’t have the capacity to say what I needed or wanted, so I said nothing and let it go, and then let the next one go, and did that for twenty-five years. On top of it I spent years medicated for a condition I did not have, which flattened whatever was left. From the outside, all of that reads as an even temper. Steady. Cool. Doesn’t get rattled. Never makes anything about himself. That was my reputation and I leaned on it, because being the easy one to have around was cheaper than admitting I had nothing left to be anything else with. The calm I was proud of was not calm. It was a symptom, and it did its job so well that I mistook it for who I was.

Then the treatment started working, the medication came off, and the feelings came back. Not gently and not in order. Twenty-five years of things I never processed arrived roughly all at once, in no useful sequence, mostly at inconvenient times. That’s the real reason I kept having to close my own article and stare out a window for a minute. The backlog came due.

Nobody warns you about that part. Everything written about recovery is about the body: the weight, the numbers, the medications you get to stop taking. All of that happened and all of it is good. What nobody tells you is that getting your health back also hands you the emotional bill for the years you spent without it, and the bill arrives after the good news, when everyone around you has already moved on to being happy for you.

And there’s a harder piece than that, which I went back and forth about putting in writing.

Now I have the energy, so I say things. I bring up what’s bothering me instead of swallowing it and going to bed. I ask for what I need, which I had honestly never once done in my adult life.

I’m not good at it.

That’s the part I’d leave out if I were writing the flattering version. I say things quickly and sharply and I don’t always think them through first. Somebody says something that lands wrong, and where I used to put my head down and take it, now I snap back. I stand up for myself. I tell it like it is, except sometimes it isn’t how it is, it’s only how it felt in that second, and I said it before I checked. I pick the wrong moment. I answer the sentence instead of the person.

The reason is simple and a little embarrassing. I never learned to filter a response because I never had a response. There was nothing in the tank to build one with. Twenty-five years of not reacting means twenty-five years of no practice at the thing everybody else has been quietly getting better at since they were young, which is the half second between what you feel and what you say. I’m forty-nine and I’m learning that from scratch, in real time, in front of people who reasonably assumed I already knew how.

So I’ve hurt people I love without meaning to. Not by being cruel. By being fast and unfiltered and certain, in a house where none of those things had ever come from me before. That one is mine and I’m not going to dress it up.

And it turns out some of the people closest to me were attached to the other guy.

I have been told I’m not the same person. I have been told, in nearly those words, that somebody isn’t sure they like this new version of me. I understand it. I do. Nobody signed up for this one. They built their picture of me over years and the picture was accurate the whole time, right up until the thing making it accurate finally got treated. But there is no clean way to describe what it does to find your voice at forty-nine and learn that the people you love most were more comfortable when you didn’t have one.

I don’t think anybody meant it as a cruelty. I think they were being honest, which is the thing I’ve always asked people to be. It landed anyway.

It hurts both ways, is the honest summary. It hurts to hear that the man who finally showed up is harder to like than the one who had nothing left to say. It hurts them to live with somebody who says the sharp thing before he’s thought about it, from a direction they never used to have to watch. Both of those are real. Neither one cancels the other out, and I’ve stopped trying to work out which of us has the better case, because there isn’t one and it wouldn’t help.

So they aren’t wrong that I’m different. I am more productive. I have more energy than I know what to do with most days. I’m considerably more opinionated than the man they knew. I’ve already owned the part of that difference that’s genuinely mine to fix, and I’ll keep working on it, and I expect I’ll keep getting it wrong for a while yet.

But here’s where I’ve landed on the rest of it. Being yourself for the first time in years is not a character flaw. It’s inconvenient. It’s harder to be around than a man who never needed anything from anybody, and I understand why the old version was easier to live with. It is not a defect. People change, all of us, constantly, usually for reasons that aren’t visible from where anybody else is standing. Sometimes that’s hard to understand and hard to accept, and that’s allowed too. Nobody has to arrive at liking the new version on my timeline.

I know all of that is true. I’m still working on making it feel true, which is a different job entirely.

So here’s the position I’ve been in since spring. I am healthier and happier than I’ve ever been in my adult life. I have been grieving the whole time. And a few of the people I care about most are still deciding how they feel about who I turned out to be. All three of those are true simultaneously and none of them takes turns with the others.

I think people expect a recovery story to be gratitude and nothing else, and I am grateful, genuinely, in a way that’s hard to overstate. I would take this deal again tomorrow and twice on Sunday. But gratitude and grief are not opposites and they don’t cancel each other out. They just live in the same house now, and lately they’ve taken in a third.

There’s one more thing I want to get right, because it’s been read wrong from the outside and I read it wrong from the inside for a while too. I build a lot. A business, software, a book, a training program, most of it inside the last year and a half. People occasionally look at that output and see somebody running from something.

I entertained that theory about myself for a few months and then I dropped it. It isn’t running. It’s what a body does when it finally has surplus, and a man who had none for twenty-five years is going to spend some. If the output looks like a lot, that’s because the baseline everybody is comparing it against was a man operating on empty. The honest comparison isn’t to what I used to do. It’s to what I’d have been doing all along.

That doesn’t mean I’ve stopped paying attention. There is a real difference between building because I finally can and building because I’d rather not sit still, and the two feel identical from the inside. The test I use is simple: am I enjoying this. Most nights the answer is yes and I keep going. Some nights I catch myself at eleven, three tasks deep into something that could have waited until Thursday, and the answer is no, and I go to bed. That’s the only policing I’m willing to do on it anymore. I’m not going to treat my own energy as a symptom. I did that for twenty-five years with the opposite symptom and it cost me everything it cost me.

When I finished the article in May I had the idea for this one almost immediately, and I decided not to write it. That was deliberate. Everything was still arriving. Anything written that week would have come from inside the wave and it would have been about the wave instead of about anything. So I put a file on my desktop and dumped lines into it whenever one showed up, in the truck, on a ruck, lying awake, and then I left it alone for four months and got on with the rest of my life.

The waiting was the whole exercise and it was harder than the writing. I’m not naturally a person who lets things sit. I fix things. Give me a problem and I’ll take it apart the same day. What I couldn’t do was fix this one, because it wasn’t a problem, it was a feeling, and feelings don’t respond to diagnosis. They respond to time and to being allowed in the room. Twenty-five years of practice at overriding what my body was telling me made me very good at a lot of things and completely unqualified for that.

So I waited. And what I want to report, for anybody sitting in the version of this that comes after their own good news, is that it does settle. Not resolve. Settle. The grief for the man who never was is still there and I expect it always will be, but it’s stopped being the loudest thing in the room. It’s part of the account now, alongside the rest. The second one, being new to people who have known me for twenty years, is further back and moving slower, and it will settle partly on my schedule and partly on theirs. Theirs is not mine to set. That took me most of the summer to accept and I’d be lying if I said I’ve fully accepted it.

I’m forty-nine. My blood pressure is normal, my A1c is normal, and I can chase my son across a yard without stopping halfway. Two shots a week for the rest of my life, which remains the best deal I’ve ever been offered. And underneath all of it, twenty-five years of feeling that finally has somewhere to go, attached to a man some of the people around me are still getting to know.

Twenty-five years is a long time to be somewhere else. I’m here now, and this is who was underneath the whole time. Everybody’s allowed to take the time they need with that. So am I.