I haven’t been blogging much in the last little while. Some of it is that I don’t feel I have much to share that is worth sharing right now. Some of it is a few practical constraints. And some of it is just life interfering.

About 10 weeks ago now, I apparently hurt my back. I say “apparently,” as I don’t remember specifically injuring it. No moment where I lifted a car to save a child and felt my back go, “Ugh.” No slipping on ice and feeling my back go in a direction it wasn’t meant to go. I vaguely recall putting on my left compression sock one day; I was turned a bit on the edge of the bed; and as I finished, my hip kind of popped. That’s a bad description, more just like the joint jerked briefly. It wasn’t like a joint cracking, nor something slipping out of alignment, more like my hip slipped back into the socket awkwardly. It felt odd, but it wasn’t painful. And it is only in retrospect that I wondered later if something happened. Because a few days later, my left lower back, just above the hip went crazy. Incredible pain. Settled down to regular twinging and spasms for 2 weeks, saw doctor, planned for physio. Then chaos ensued. I was going to the washroom, stood up, and it felt like my whole back was seized by a vise. I needed Andrea to come and help clean me up, then in the living room on a heating pad. A week later, I ended up calling an ambulance because the pain started again and wouldn’t stop. A solid 7-8 on my 10-point scale, with occasional 12s that had me literally screaming.

I got better drugs, I did some physio. But what made the most difference? Heat and a back brace / weight belt thingie from Amazon. It basically wraps around like a belt you would wear while lifting weights, and holds everything in place where it should. I’ve had twinges since then, but even on the first day of the worst pain, I could still move around if I had the belt on. Fast forward to the end of the ten weeks, and I’m feeling back to somewhat normal. I just did a trip to Peterborough/Lindsay for a funeral, and I was terrified by the likelihood of the trip plus a different bed screwing me up. Nope. I’m back home again, and feeling okay. Sure, I’m still wearing the brace a lot to be safe, but slowly emerging into movements without the physical support. Best investment I ever made.

But during that time, I’ve been spending a LOT of time on the couch in the living room as a couch potato. I definitely wasn’t looking for more time in front of a computer blogging. I barely was able to make it through my work hours early on. Quite a few days I finished work, hobbled up the stairs, and sat for 2h with the heat on my lower back. The weird part? After about 5w, the left side was fine — just in time for my right side to flare up. Sigh. Anyway, I haven’t been able to be at my computer much, so no blogging. I haven’t even really been responding to email or texts, just short notes.

Which brings me in part to the title of this post. You’ll occasionally see amateur philosophers trying to wrestle with some ancient themes like the difference between a life well lived and living well. Or in my case lately, more like “well, living”. In my brain, I am often thinking about growing, learning, goal setting, etc. Instead, I’ve been figuring out which show to binge that I would not get bored with quickly. ST: Voyager, ST: DS9, CSI: Miami, Lucifer, The Flash, and another 20 or so are in my on-going queues. Andrea has even joined me for NCIS: LA, which back when it was part of my live watching, was always at the bottom of my list compared to just about any other new show. It’s okay. Pretty formulaic, interspersed with soap opera crap that I would normally fast-forward through but you can’t really do that when watching with someone else if you want to stay married. Put the remote down! hehehe

But this past week, we had to go to Lindsay for a funeral. Uncle Scott, Andrea’s mother’s brother, passed away 2 weeks ago and they scheduled the service this week to give time for everyone to make it over. I’ll share some links in the future, probably a whole separate post about his life, but while I was sitting in a pew reflecting on his life, and my own, I came back to the old chestnut. Is it better to live a life well or to have a well-lived life? They are not the same. One looks more like living every moment to the fullest, grabbing every opportunity that comes your way. The other might look like someone who is happy with their life in whatever form that is (a warm family, healthy bank account, big house, or lots of friends). For what it’s worth, Uncle Scott did both. Andrea’s eulogy talked about how if you ever wanted to see someone learn to water ski by sure force of will, regardless of whatever obstacles the universe had placed in his path, it was seeing Uncle Scott do it. And his infectious smile that made everyone feel better just being near him. An innocence of spirit that we all lose over life, but which Uncle Scott kept. More on that later.

But for me, I don’t feel like I’m doing any of the three. I am not particularly living well, ensuring a well-lived life, or even “well, living”. My sense of mortality is stronger than it used to be. Some depression has lingered longer than it should have been allowed to visit. And some of that is just a series of things…the pandemic. Andrea’s cancer. And a ton of stuff over the last six months for Jacob. With no clear answer or cause.

I often hesitate to talk too much online about Jacob’s stuff because it is not my story to tell. I try to focus on how I’m dealing with other people’s stuff, what I’m thinking, what I’m dealing with myself, etc. But it is difficult to do so without talking about him and the load he’s facing. Basically, to the extent this is the diagnosis, Jacob likely has a concussion. Some symptoms fit, some don’t, but he never really had a head injury. We know he fell about 2w before the symptoms started, he was coming out of school, missed a step, and fell hard on his upper body. A good jolt that maybe did something else. But he had headaches constantly (now diagnosed as tension headaches) and increasing dizziness, along with fatigue etc. We’ve dealt with most of the headache stuff, at least to the extent that it wouldn’t be as debilitating, but the dizziness is messing him up. What does that mean in the grand scheme of things? It means he’s been out of school almost 5m, attending 2-5 days per month at best.

Separate from the stress of the injury, we have been dealing with a lot of chaos. Every day is a game-day call. Is he okay today? Can he go to one class? Two? All day? Nothing? Does he need a lunch? A ride at 8:30 or 10:15 or 1:30? Or rides home at 10:15, 11:30, 12:30? 1:53? Is Andrea in the office Tues and Thursday this week? Am I in the office Monday / Wednesday? If he’s home on Wednesday, can he be by himself? Is there nausea? Does someone need to stay with him? He is struggling with day to day stuff, is it fair to ask him to take a cab one way by himself? Can he handle the mental load of his own transport, on top of everything he already deals with?

For those who like sports metaphors, most of the time, it comes down to a game-day question…is he in the game today or on the bench, and am I taking him to the stadium or not?

Andrea has been handling most of the load for scheduling things, I handle transport. We switch off for who goes in with him, but since she’s been with him for the neuro conversations, often it is better for her to do the next specialist too so she can answer what the neuro said. Some we do together, if they’ll let both parents in at the same time (some are still on single parent accompaniment because of COVID protocols).

I’m not sure how much of my beliefs as a parent are derived from personal experiences and how much professional, but they are both being challenged. I have a strong personal belief in self-empowerment and helping Jacob have the best information to make good decisions that are his own, up to the level of his capacity.

In my work-mode, I would say that it is a strong belief in human rights and the right to self-determination, to make the decisions that affect your life rather than having them made for you. I did a lot of work on the UN, and interacted with children’s rights issues, as well as the UN Convention on the Rights of Persons with Disabilities. You often see references to these rights being simply summarized as “No decisions about us without us”. It often finds itself in the realm of guardianships, the role of the state for children or persons with disabilities who cannot “stand for themselves” legally for whatever disqualification is in the statutes…age, infirmity, whatever. Yet it could equally apply to reproductive rights or MAID. Nothing about us without us.

For Jacob, that means I strongly push for him to be the person they see as the decision-maker, with Andrea and I more and more as trusted advisors. He is smart and has a good head on his shoulders, with a good heart. I trust him to be him. Yet when it comes to 8:00 a.m. in the morning and he is saying he is too sick to go to school, the V&E questions hit…do I trust him to be judging that completely correctly, that he really can’t go, or do we disregard it as mere teenage resistance and “force” him to go? A concussion is not something you just beast your way through, but you also can’t just wait until your brain feels better. If you don’t push at all, you don’t heal.

Some days it is draining, other days it is stressful, most days it is both. And we’re not even the one with the issue.

I have been feeling a sense of loss of control in recent weeks. That we don’t have a handle on his recovery. However, to be more accurate, I mean that I, myself, do not have a good handle on his recovery and what we’re actually accomplishing. Andrea’s doing awesome for her contribution, but also struggling under the load. I feel like I want to push more, do more, see better results, help him more than I am. I want to manage things more, maybe with no better results, but at least less of a sense of helplessness and less of a sense of deferring too much to Andrea’s mental load. The back stuff knocked me off my game for 10w. Hell, there were days when, even with the back brace on, I couldn’t load the dishwasher or do laundry (two of my main household tasks). Andrea’s been picking up my slack too. Sigh.

Anyway, where was I going with this? Oh yeah. We have some glimmers of what’s going on, we have some plans we can implement to make things better. And while we have a bit more uncertainty than we would like for some possible surgery over the summer (unrelated to the concussion), I am primed to take leave to help J with rehab. In the meantime, I’m trying to organize my thoughts on how to help him. And we can’t keep juggling work schedules and personal schedules.

So, I’m going to take three weeks off to do almost nothing except help Jacob when needed. Even if that means taking him to school for an hour and sitting in the parking lot waiting for an hour or two until he has to leave. After that, we’ll hopefully know what is happening for the surgery. But, for a short break, at least it will alleviate some of the juggling.

It isn’t living well, nor even well-lived, but hopefully it is something better than simply “well, living”. Fingers crossed (btu hten I typf lke hist, so maybe I won’t cross them).