Five Minus One

Perhaps one of the more questionable decisions I’ve made in my new career as bereaved Dad was the one to read the Book of Job.

Let me explain, I’m not the best Christian in the world. I’m far from the worst, I like to think, but I’m not a front-row-of-church kind of guy, if you know what I mean. I have questions about practice. I have questions about theory. I have a certain level of discomfort with contemporary Christian culture which does clash with the set of beliefs I hold. What can I say? I also read comic books but tend not to get along so well with others who read comic books. I’m difficult.

But a long time ago I did decide that, if I’m a Christian, I can read the Bible. The goal is 1-2 pages a day. I don’t always manage. My success rate is heavily dependent on how much alcohol was consumed the night before and how early the children got up.

But I keep reading. And every time I get to the end, I turn the book over and start again. I know this is not the way many advocate reading the book. You get a lot of chaff in with the wheat this way. Some stories raise a lot of questions. What to make of the story in Judges where – to summarize radically – a man mad at his treatment in town cuts his dead concubine into 12 pieces and starts a war? But it’s what I do.

And now I’ve reached Job and … oof. I knew it was coming. I knew how the story goes. But, I have to admit, in the past, I’ve let the more poetry/verse parts of the Bible wash over me. Now I come to passages like:

Why give light to a man of grief?

Why give life to the bitter of heart,

who long for a death that never comes,

and hunt for it more than for a buried treasure?

And there’s no way to pretend that’s not a bit difficult to get through. I’m not comparing my life to Job’s. I have not lost all my possessions. I have not lost all my children. I do not believe Satan is personally testing me (though, I guess, Job didn’t know that either). It just rhymes a bit too much with my life and feels more familiar than I ever imagined this book would ever feel.

Back when we were in the hospice, Christina’s sister and husband came to visit us. Florian is – and I do not mean this in any mean way – far more invested in Catholic culture than I am and asked me “Are you mad at our dear God?”

I don’t know what answer he expected, but my answer is no. God sat out the Holocaust. Pol Pot got to live to old age. Children die every day. I don’t see God intervening in life on a daily basis, otherwise I’d have to believe things would look a lot better. So, if God is letting us sort it all out, there’s no real sense in raging against him or the universe. Which is not to say I don’t from time to time. I spend too much time listening to XTC’s “Dear God” and Tori Amos’ “God” right now than is probably healthy for me, strictly spiritually.

But this is not me pretending to have any answers. It’s just another way of showing that what should be everyday life is that much more complicated now and, if you’re like me and choose to believe in God, it throws in a lot of questions about theology into the mix.

Well, I just paid what should, hopefully, be our last gigantic bill for Colin’s health care. In a fair world, it would be the last bill ever, but I can’t shake the worry that the hospital will surprise us in a few months with 800 euros for the MRI they forgot to tell us about or, what I truly fear, a backlog of quality surcharges, since they forgot to add one to the 16.32-euro bill.

Because it was a bill to our home health care, it was annoying. It took them several tries to get us an accurate bill. Then they wanted payment in about five days. It took us significantly longer than that to get the paperwork filed to the insurance and then to get the money back. Even then, I had hoped to pay the bills last night, and then my bank’s website had some kind of meltdown, so here I am, paying bills and blogging about it in the few stolen minutes I have between shoving the kids out the door in the rain to school and heading out to work myself.

I thought there would be a bit more satisfaction to being done with that bill. But, in the end, it’s just another chore in what is on most levels a normal middle class life. I didn’t live out any of my revenge fantasies like leaving a nasty message in the notes section or hand-delivering the payment in 2-cent pieces (The final bill was 18,361 euros: one has to be practical about these things). It’s just done and hopefully we’ll never hear from these people again. Hell, given the mess that company is in, there’s no guarantee that there will be someone still running the place to receive the money.

For now, it will be odd to, for the first time in a long time, have our bank account filled with only our money from our salaries, not with loads of funds sloshing between the insurance and the providers. Honestly, I’ve never quite understood why I have to be the middleman in this, why the insurer can’t just pay the providers directly. But that’s the system.

Whichever, I don’t believe that was truly the last bill. But I guess only time will tell.

As always, I struggle with the adjective. There was a moment where I thought I’d start this blog with a “good news” moment, and then that didn’t feel right, as we’ve all had a moment or two in the last few days where it all got us down. But I wanted to get the blog entry up, so here it is.

Not so bad news? I don’t know. I’m going to have to work on the marketing.

But we seem to be winning on one small front: the issue of all the medical machinery which we’ve been trying to donate to the hospice.

To recap, it’s been ages since the insurance companies agreed that all of these breathing machines, etc., belong to us, even though we used their money. This is not standard practice in Germany, but Christina and the kids are privately insured, which means the rules are a little different for them. It also took a while to convince everyone since, apparently, some of the forms used to procure these machines were the paperwork for the regular insurance system, not the private insurance system. But we got everyone to agree a while ago that the items actually belonged to us.

And then the hospice said they wouldn’t take them. Or, to be more precise, they will take the items, but they won’t give us a charitable receipt. And I know, our willingness to be charitable shouldn’t hinge on a receipt, but it’s been a rough year and we’re not broke, but it’s had its costs, emotional and tangible. So, if we do own this stuff and we can get a tax deduction for donating, we’d much prefer that route. The hospice argued that they were leery, since we couldn’t prove ownership. Finally, some friends of ours in the banking and legal professions essentially told the hospice to shut up. If A gives B a car and then B decides to donate it to C, that’s B’s business and C doesn’t have to worry about how B came into possession of the car, especially if B has legal paperwork proving ownership.

This seemed to satisfy the hospice, because they’ve now asked for the purchase paperwork, so they can confirm the price of all this stuff when making the receipts. At least that’s what we assume. It was no fun for Christina, who got to spend too much of this week going through all those old receipts. You’d like to think they have no emotional weight, but they are tied so closely to Colin that you just can’t go through all of those without feeling like someone is kicking you in the chest. But this ball is at least rolling and hopefully our tax return this year will be supersized.

Meanwhile, in all of this, one of the breathing machines ended up back at the supplier’s office. We have no idea, since the hospice was under orders not to let these people walk away with anything. But the supplier brought it back here and we’ve got it tucked in a corner somewhere so we don’t have to look at it too much. Even better, Christina found a doctor named Samuel Okae based in Germany who is looking to open up a children’s clinic in Ghana and they’re looking for just about every kind of piece of equipment you can imagine, so they’re very excited about our donation. Let’s just hope they make the writing of receipts a little easier.

I’ll be honest, part of my motivation to write this post is to find out if the email distribution system I’m trying out is working, so my thoughts are in a bit of a ramble. There are things I want to write about, but I haven’t quite formulated my thoughts yet. And there are things I think about, but wonder if it’s a good idea to share them.

For now, I remain hung up on talking about Colin. The Peanuts mugs above? Part of a set I got Christina a few years back at this chain in Germany. There’s nothing particularly special about them: Christina just likes Peanuts.

The Lucy mug is no longer with us, unfortunately. Christina dropped it and now we have six bowls, but only five mugs: Charlie Brown, Snoopy, Sally, Linus and Woodstock. We’ve looked in the store where we got them: They no longer sell this line.

So, I wrote the company. I asked if they might have a mug tucked away somewhere. And, as I was writing the letter, I wondered how thick I should lay it. Should I just say we can’t find a replacement? Should I talk about how happy it would make my wife? Or should I really go the distance and tell them how miserable a year we’ve just had with all the awful details and hope that touches someone enough so that they trek to the deepest, darkest parts of the warehouse where someone put aside a rack of Lucy mugs that they’re going to sell on EBay someday.

I didn’t. And they don’t have any Lucy mugs anywhere. And I kind of wonder what I was thinking, considering using Colin’s death as a ticket to a Lucy mug (I would have paid for it!). And it gets me back to my Catch-22. I don’t want to talk about Colin all the time, because it will bum people out. And I don’t want to not talk about him, because that feels disrespectful and I think people maybe need to know why I’m on edge. But I also worry what happens when all I become is the guy who lost a kid. I don’t want the death to define me and I don’t want to use it as a crutch. Which is so tempting? Work is too hard? Maybe I’m feeling a little mentally ill? People talking about stuff I don’t care about? Well, excuse me, but why am I supposed to worry about your problems after the year I just had? There’s such a journey in this process – because learning to live without someone like Colin also means kind of learning again what kind of person you are and what you can still manage. I’ve not been horrified at what I’ve discovered so far, but I also don’t think I’m passing with straight A’s either, if you know what I mean.

Wrapping up some other points:

• I emailed the colleagues at work with the whole story about Colin’s death and how it might be something to report on. I felt a little bad about dropping the news of his death in an email, but it wouldn’t have been any easier doing it in person. And I at least have it done.
• I don’t have sleep apnea, according to the pulmonologist.
• However, I’m still not sleeping great. My doctor has me on an herbal mix of hops and valerian. I fall asleep fine, but I did that without aid. Now, with the pills, I at least fall asleep faster when I wake up in the middle of the night. But it’s still a rare night that I don’t wake up 3-5 times. My low point: Waking up last week feeling absolutely refreshed and then realizing it was only 1:30 a.m.
• I paid the stupid 16.32-euro bill. And I didn’t do it by driving to the hospital with a bag of 2 cent pieces.

Who wants to help me find all the errors in the above photos?

Off the top of my head, I see:

• The bill was sent nearly four months after the patient died
• The bill was sent six months after the treatment was given
• The treatment was provided by a doctor neither Christina nor I can remember seeing since 2017
• The bill is for 16.32€? Seriously? Even assuming the doctor did see Colin in July, what services did she provide that only amount to 16.32€? What could she possibly have done that only equaled that amount? If the service was so crucial, how come the bill is only showing up now?
• The bill showed up a day after I compiled our insurance claims, containing a whopper of an 18,000€ bill from the home health agency that I’d really hoped would be our last bill regarding his health care.

On the plus side, it is the first bill we’ve received for Colin for more than a month, so that’s something.

I suppose I wasn’t ready for any part of this new life, but I didn’t expect sleep to turn into such an ordeal.

I don’t remember having a ton of problems sleeping during April and May when we had him in the house. Nor when we were in the hospice. I mean, sleeping was hard in April and May because some of the night nurses just made so much noise. And I couldn’t sleep long when we were in the hospice since I wanted to be up in Colin’s room shortly after 6 a.m. every day.

But I remember going to sleep and staying asleep during all that time.

And then we got home after he died and, suddenly, I didn’t sleep very well any more. I’d fall right asleep: That was never a problem. Staying asleep? Not so much. Most days I would wake up after 3-4 hours of sleep and then really have to toss and turn until I could get back to sleep. Problem was, once school started, this meant I was usually waking up around 3 a.m. and then getting back to sleep just as I had to get up to shove Emma and Noah out the door to school.

Things then took a strange twist when I woke up one night to find Christina had hooked me up to the finger clip we had for Colin to check his blood oxygenation. It got even creepier because, when I woke up to this tableau, I immediately asked what was going on. But Christina wouldn’t answer. Turned out she was trying to count my breathing rate or heart rate or something like that, but I’m here to tell you it’s uber creepy to wake up like that and then have the person in bed just stare at you.

Christina is worried that I might have sleep apnea, which is apparently a thing in the Sorrells family, which is why I was wearing the whole get-up you see in the picture above. I hope it worked, because I feel I barely slept last night. It didn’t help that Emma showed up and hogged the bed for half the night, but I was also probably uncomfortable with all that on. I should get a verdict by Tuesday or Wednesday.

So, we’ll see. Right before Christmas, my therapist told me I can get melatonin over the counter in German pharmacies, which frankly knocked my socks off, since you basically need a doctor’s note to get ibuprofen here (and will get a serious talking to from customs if you try to mail some to yourself, I can tell you from experience). But I got some. It’s a tiny, tiny dosage mixed in with some other homeopathic stuff, but it does seem to help. I have kept waking up at 3 a.m., but I’m now able to roll back and go to sleep. And I can tell you from personal experience that if a child shows up in the middle of the night to philosophize, it doesn’t put me down so hard that I don’t wake up when the debate club fires up.

Still, I wish I knew why I wasn’t sleeping. I’m tired, I can assure everyone of that. I don’t feel like I’m having bad dreams. I don’t even know if I’m technically having recurring dreams, since they’re so infrequent and different every time. The basic scenario is that I’m talking to a health care professional – I might be in the hospice, the hospital or at home – and they’re really excited about some new thing they’ve discovered that will make Colin feel better or maybe even cure him. And I’ll listen to them for a long while and think it doesn’t sound like a bad idea when, out of the blue, I’ll remember “Oh, Colin’s dead, so we can’t do anything for him any more.” And that’s when I wake up. The only variation I had was a few days ago where a former work colleague was trying to sell an unauthorized version of Colin’s story to some TV station and I, oddly, didn’t really care.

But again, that’s not every night and … well, I just don’t know. I’m seeing the doctor last night. Maybe I can get a better melatonin dosage after that and really sleep through. All I know is: I don’t plan to be up late tonight.

I spent most of the week after Christmas marveling at how easy it had been to move through the holiday, barely weighed down by sadness or bad memories. It was surprising, since Colin loved Christmas and it really is my favorite holiday.

Then came New Year’s, which is not my favorite holiday. I’ve never much cared for the atmosphere of “We must party now.” Berlin’s obsession with fireworks has also grown old over time. So, I started December 31 with my usual attitude of “Let’s just get through this.”

Then we decided to go to the grave and light a sparkler for Colin. Christina wanted to go just as it turned dark and it seemed like a really good idea. And it’s not as if I had a breakdown or anything. I wasn’t intensely sad afterwards, but I was also not in the mood for anything like a party. It took until almost 11 p.m. until I could halfway register something like gaiety (upon which, I immediately drank too much champagne). The only upside was that, since it was obvious I didn’t want to be at the festivities, I used the threat of my potential flight to get people at the table to turn off their mobile phones for once. I mean, if I elect not to escape the party for a book in a quiet room, the people who claim to want to be there don’t get to escape to the internet.

And now it’s the new year and, if I’m not mistaken, probably still New Year’s Day somewhere in the world as I type this. I see a lot of challenges ahead. Like, the retreat for grieving families won’t take you until your loved one has been dead for six months, since they say the true grief often doesn’t hit until about half a year later, which presages a really rough March and April for us. There’s Colin’s birthday and all the first anniversaries: of him being taken off solid food; of being told that the cancer was back; of moving into the hospice. It’s not as if I plan to wear black and ritually weep for each of these, but the memory will be there, darkening whatever else might be happening that day.

It’s encapsulated best in our family calendar. We’ve had five to six columns in our family calendar for year, keeping track of everything from holidays to chemotherapy appointments. We usually never fill out a month until we’re almost upon it, and that includes the names on top. I know we had Colin in there regularly through the summer and then, one day in August – after Emma, Noah and I returned to the house – I was filling things in and it just dawned on me that it was kind of pointless to put him in for October and November. I have no idea how his name got in the December slot, in my handwriting no less.

But now we’re down to four names, and it’s just another sign of his absence, just like when his name disappeared from the list of active accounts at our bank to the way that, when I set up our 2020 filing system, I’m not going to need a separate binder for Colin’s medical bills any more. The thing is, there’s no escaping it and, all things considered, I’m not sure I would escape it if I could.