Five Minus One

I did something yesterday I haven’t done since returning to work. I refused a story.

I’d warned people this might happen. I’d asked colleagues to try to shield me from having to edit stories about dead children or cancer. But I work in a news wire and when you’re in the job where it’s your job to pass out stories to other editors, you often want to keep the plates spinning, so you shovel them onwards without looking at them.

And that’s how I found myself looking at a story about the Vatican threatening to refuse last rites to people who attempt euthanasia. And I can’t even speak to much about what the article said and what the Vatican’s arguments were. I got hung up on “death” and “last rites” and pretty quickly found myself down an ugly rabbit hole of Colin’s last moments and whether we’d had last rites for him and whether it matters if we did, etc. etc. It’s not as if I shut down. If anything, it’s more like my mind went at warp speed for a few moments there going through those final days a year ago. I didn’t even get too upset, because I quickly remembered that he hadn’t even had his first communion yet, so, by my theology, his baptism is enough to get him to heaven. And I don’t even know why I let myself get wound up by this because, even though I belong to the church, I don’t get so caught up in the rituals like some of the more dogmatic Catholics might. I believe he’s in heaven whether or not someone smeared oil on his forehead.

But it still tied me up. And there was no way I was going to edit THAT story. I’d already had a few annoying experiences that day, so there was no need to add to the misery.

The point, however, is not that editing for a news service can carry hidden anxiety triggers, it’s that it’s the kind of thing that brings me back to my question of what do I do after my therapy sessions run out. Do I just push on with moments like these, because there will always be moments like these? Do I look for some way to get better? Am I actually even sick? Being sad and upset seems like the only rational way to approach the situation.

I did meet my therapist last week. We have more sessions left than I had been led to believe, but only a handful. We’re going to stretch them out. Maybe I won’t have my last session until January. But he’s being pretty stern. Even if we could convince the insurance company to let me keep going (a big if), is it fair for me to keep going. I freely admit, I don’t particularly expect him to fix me. I mostly go because I enjoy speaking to him and, as my friend Liisa puts it: “It’s useful to have a person to talk to who isn’t affected by any of your decisions and who doesn’t want anything from you except your money.”

But that’s not really therapy. Dr. Kehrer pointed out that, first of all, if we hang on to one another because we like speaking to one another, that’s blocking up therapist time that someone in dire straits could be using. More pertinent to me, he asks if keeping me in therapy is the best thing for me. I’ve been through hell, but I still want to be part of society. Going to therapy is not going to help me do that. Being part of society will help me.

Which all seems to make sense, but then I think about how it’s such a strain to try to be around people and simultaneously not bum everyone out. Last night I went walking with my friend Markus – who knows all about Colin and has listened to me moan more than once – but also his friend Piet, who doesn’t really know much about it. I’m not going to unload on Piet because I barely know him and I don’t want to bum him out.

At work, he use Slack to communicate. Every day we start a chat group with the editors on duty. We ask for advice. We tell dumb little stories from home. We keep each other briefed on the work flow. Sometimes we even get stuff done. Last week, when Alexei Navalny, the Russian dissident in a Berlin hospital after a poisoning, got taken off of ventilation, there was a debate about the appropriate wording. One editor noted that, if Navalny was up and walking, he must be off the breathing machine. “It would depend on the situation,” I pointed out. And just like that, the conversation thread went dead. Understandably, nobody really wants to be talking about breathing machines with me. I don’t want to be speaking about breathing machines. And then I want to ask Dr. Kehrer: Are you sure this is going to work?

But therapy is difficult. I asked Mrs. Sim, the therapist from the hospital if she has any ideas. She’s also not convinced I need therapy. But she only has five days to help me, because they’re phasing her job away at the hospital. Someone decided they didn’t need a staff psychologist who focuses on the families of the affected. I asked her how the remaining therapist would handle the workload. She said that conversations with families in the pediatric oncology ward would only be limited to real crisis situations from here on out. Like every conversation in the pediatric oncology ward isn’t a crisis conversation. Like people call up the therapists because they want to discuss the pattern of their dying child’s pyjamas.

I don’t know what I’m going to do. And I don’t mean that in the sense of “Life is so hopeless.” I mean it in the sense that I’ve got to figure this one out. It doesn’t help that trying to find a new therapist/paid friend to moan about life with is going to be a challenge during a pandemic. For the time being I’ve given up on going to my men’s group at the hospice because I can tell my worries about contagion would distract me from anything anyone might say. Not the best time to meet up with a stranger over coffee, is it?

We got the question for the first time about a week ago: “Do you have plans for September 17?”

I don’t know what it says about where my head is, because my first instinct was to ask “Why? What’s up that day?” Like, even if that weren’t the first anniversary of Colin’s death during this time of pandemic, someone would be inviting us out to the hot new bar downtown or something.

I have to say I’m approaching this week with the weirdest sense of calm. I met my therapist yesterday (I’ll blog about that later) and had to tell him that, honestly, I’m more upset at this point about the impending end of my therapy sessions than I am about the birthday. A friend asked me if I’m bracing for Thursday and, again honestly (as if I’d be doing this blog to tell lies about how I feel) I’m not worked up about it.

I don’t think September 17 stands out for me as the day I lost my son because while, yes, that’s the day that stands on the death certificate, we’d lost him in such drips and drops for the weeks and months before that that he was all but gone by that day. Is the day I lost him the day we found out for sure that the tumor had returned? The day we threw the towel in and moved to the hospice? The last day I remember him really showing an interest in toys or books? I have no idea, but – at this moment – September 17 just seems like a day we have to note. Maybe I’ll have completely different thoughts about this in 48 hours. But, right now, it is a day that I will mark, not because I have to but because I want and need to do something to note the day. But I can’t claim that I’m worked up about it at this point.

That said, it is going to be a weird week. I’m absolutely not in love with the fact that this whole nightmare means my birthday will for the rest of my life fall two days before the anniversary of his death. It is odd thinking “It’s my birthday. Cake! Gifts!” knowing that we’ve got to brace for a complete turnaround in emotions in two days. I’m staying home most of this week, partially because I have so much vacation to burn off, but also because we’re not convinced that the kids won’t feel simply unable to cope with it all in the next few days. We already had them both home for parts of last week and the jury is still out on whether they were actually sick or whether the impending anniversary was starting to throw them off balance. We still haven’t decided if we’re going to pull them out of school on Thursday.

We really don’t know what we’re going to do. Germans have this concept of “Todestag,” which translates to nothing more than “Death Day.” But I don’t know what one is expected to do on this day, save go to the gravesite and remember the person. Which doesn’t seem like nearly enough. But I also don’t know how big of a production you want to make out of something like this. I suppose at the end we’ll just do what we think we can handle and that will end up being what is “right” for the day. But it’s a screwed-up way to spend a week.

We ordered the gravestone yesterday.

There was a last-minute rethink about the design of the stone which actually made things easier and means the stone will probably be standing in about a month, as opposed to 2-3 months.

There was also a last-minute rethink about the style of text for the stone which, impressively, cut the cost by about 1,000 euros. Who knew that laser etching was the cheaper version?

Also, we were warned that, when the stone is set up, there will be a phase of a couple of weeks while the foundation hardens. During this time, we are not to shake or push the gravestone in an effort to make sure that it is standing stably. The fact that he told us this makes me think it must happen, from time to time, which conjures up all manner of images of unfortunate graveyard experiences.

So, that’s that. That part of the grave might be done in a month, though I’m led to understand that the gardening is going to be a part-time job for the foreseeable future. There might also be a delay because the graveyard is doing some general landscaping near the site, and it would be better if that was finished before the stone gets put in. Whichever happens, we’ll share photos here when that’s done.

The possibility has come up that I might be done with therapy, at least for the time being, and I honestly don’t know what to think of that.

I never thought I’d be someone who would seek out therapy, much less find myself a little sad that it might be ending. But live through the last five years like I did and all sorts of things that never seemed possible suddenly become everyday. So, here we are. My therapist says that we have three sessions left before the insurance stops paying, so we have to figure out what to do.

Now, he hints that it might be possible to continue. My family doctor certainly thinks it wouldn’t be impossible to find a way to convince the insurance company to keep paying. I don’t know. I’ve never quite understood the rules for what the insurance will and won’t cover. When I decided I might want therapy, I started looking around for English-speaking therapists. Then the insurance company said ‘no silly’ and told me that they would assign one to me. I didn’t get along with her well, started referring to her as “Morticia” and then, when I asked if I could find someone on my own, the insurance said ‘sure.’

That was in 2017 and I don’t know how many sessions I started with and how many I could potentially still have if I hit the right bureaucratic levers. I’m not sure if therapy begun to discuss the way your child’s potential death could affect you needs to change, billing-wise, once you transition to the actual death of the child.

But I think it’s also a bit besides the point. I can’t decide if I still want therapy or not. The truth of the matter is, I don’t think there’s a “fix” for me. I’m behaving thoroughly rationally. My son died because life is unfair and our number came up, so I react by suffering a background level of anger higher than I ever imagined possible for me. All things considered, I think being a little more prone to anger than I was before isn’t the worst reaction to what happened. Especially since, as my therapist points out, I recognize the problem and try to keep it under control.

So, therapeutically, I feel like I’m in a dead end. There’s no therapy that’s going to make me stop missing Colin or stop feeling it was all so unfair or keep me from having a twinge every time I see a little boy who would be his age busily not dying. This is just what I do now.

To me, going to a psychiatrist is, essentially, talk therapy. I sit down. I lay out the mess that is my life. And he nods his heads at the right points and occasionally points things out from a different viewpoint. I get upset that I grumbled about going up to Colin’s room in the hospice the last night he had his eyes open. Dr. Kehrer points out that, no matter what, it showed Colin loved me that he wanted me up there one last time before he never opened his eyes again. It works for me.

And I know there’s any number of friends who will sit and listen to me or share emails with me or even read this blog. I know there are other non-professional resources out there for me. I don’t question most people’s willingness to help. But there’s also the truth that I don’t want to be that depressing guy who talks about his dead kid day in and day out. I don’t want to be that person. I don’t want to bum my friends out. I don’t want to suck all the joy out of the room every time I show up. So, I’d like to talk to my living friends about non-depressing matters, even if the state of the world makes it hard to pick out non-depressing things to talk about these days. And that’s why I’m not sure I’m ready to give up a therapist. At the end of the day, I like having someone around who’s paid to listen to me whine so I don’t have to lay this on other people morning, noon and night.

I suppose it’s also a bit of a double-hit, because the coronavirus crisis has also made it that much harder to attend the monthly meetings with the bereaved Dad’s group. Those were cancelled from March through May. They managed to resurrect them in the hospice garden for a month or two and I made it to one of those. But now they’ve moved back inside and, when I had the chance to go to one last week, I opted out of it, simply because sitting in a room with a handful of other guys seemed like too big a risk. This from a guy who’s worked up the courage to go a restaurant amid all this and sends his daughter across town by public transportation five days a week so she can attend her new high school. I know, none of it makes sense. And it’s probably based somewhat on the fact that I’m still on the fence about the Dad’s group. They all seem like nice guys, but there’s the fact that, no matter how good my German may or may not be, sitting around talking about my feelings with a group of people I barely know would be difficult in English. Throw in the hurdle of a foreign language and I feel I spent half the meeting not understanding what’s being said and half being frustrated because I can’t package my feelings into words in my second language half as well as I might like.

And, just like that, I’m going from having one professional support system and one non-professional support system to a world where I have neither. And I’m not panicky about that. As I said, I know I have people to whom I can speak. I’m just aware I might be starting a new chapter in this miserable story. And I’ve never been particularly great at change. I guess, if nothing else, I can start blogging even more. I guess, what it really came down to is that I wish I was the one deciding to give up my security blankets instead of the one having rugs being pulled out from under me. Then again, if I’ve learned nothing else from this experience, life seems to be far more about having rugs pulled out from under you than one would ever really like to think about.

Several months into the coronavirus, a friend pointed out that a) I liked writing and b) I had ample time for it during the lockdown, so why wasn’t I?

There was no way around it. Writing was probably healthier for me mentally than going through old clothes. And, honestly, I’d developed a bit of an unhealthy obsession with crosswords after a friend got me a trial Wall Street Journal subscription. So, I started writing a story I’ve had knocking around in my head for years. And then, because I still have this dream of being paid to write novels, I started poking around to find out how one would look into getting published.

A friend I asked suggested writing essays. This came only months after another friend had suggested a book about grief.

And I don’t know what to do with those suggestions.

It’s not that I don’t have things to write about. Honestly, give me a topic and I can probably whip out 750 words without trying too hard. I like writing. No, it’s not the actual production that’s the problem. It’s the marketing. Myself. The story. Colin’s story. I don’t know how to turn this mess I’m in into something that people would want to read. Which is where I stop and think “Well, of course, no one wants to read about a dying kindergartener.” So, it becomes a question of thinking of how to write something that people should read.

To me, if I was to embark on an essay/book about grief strategy, I feel I should have something useful to say. Here’s how this problem hit me. Here’s how I got through it. Here’s how you could get through it too. Or, here’s a problem wound up in the whole situation. Here’s a possible solution. There has to be, in my mind, a journey from this awful point to a place where I don’t necessarily solve the problem, but get us somewhere with a view of something helpful.

I don’t have that. I can write you up 25 essays tonight if you want, but the morals of the story will be “Childhood cancer is really awful,” or “It’s terrible watching a 5-year-old die” or “Nurses who sign up to help families with sick children shouldn’t quit without notice.” I kind of would hope that those lessons are self-evident.

I mentioned this to Christina and her response was to think about how everyone has reacted when we tell them the story. All the details about the diagnoses and the doctors who expect you to somehow keep a child calm while they’re sticking a needle into their skull and the nurses who disappear on you and the lady bringing you a wheelchair for your dying child, who asks right in front of him “So, how long does he have, anyways?” Everyone is horrified. And it’s not that we don’t expect this. But having lived through it, it’s almost like a twisted, bittersweet memory. We can sit on the patio and talk about the one awful nurse at the hospice or the other mother at the hospice who made the really good lasagna. And it’s not as if we look back at this fondly or have forgotten the pain. I think it would be how two tornado survivors would say to one another “And remember how the roof disappeared?”

And she’s right. If I wrote down the whole story – OK, I’ve done that already – it would probably terrify anyone who came into that cold, but it’s not like I take us anywhere. It’s not like I bring us to a place where we’ve learned or achieved anything.

Would that be enough? I can’t say I feel it would. One of the first things I did when I got back to work was to try to convince the health reporter to do a larger story about the problems with Germany’s home health care network. He seemed interested. Then Covid-19 came along and health care reporters haven’t had a lot of time for extra projects since.

So, that would leave me to tell the story. And I’m stuck with nothing other than the thesis of “Well, that was terrible.” If he had to die and I have to write about it, then I want it to be something good. If I’m forced to accept that life handed me some of the worst lemons there are and it’s now my job to make lemonade, I’d like it to be something useful, not just “Hey, look at this horror show.” I have to fight the fact that there’s a part of me that wants desperately to get published, but I can’t use my child’s death as an excuse to make that happen. I’ve got to find something to say about it that matters. I feel Colin deserves that much. So, until that point, I guess that’s what this blog is for.