I had it all worked out, was going to post some pics post-dental surgery today. Except apparently the universe had other plans for me.
Back in about 2022, when I had a root canal, they used an oral sedative like Diazepam or Triazolam, plus an IV sedation like Propofol. Together, they knocked me OUT. No memory of any of it.
For my cleaning in December, I did the IV only, and I didn’t go very deep. I was fully conscious, no amnesic effect, probably could have driven home. Obviously, not enough for something more serious than cleaning.
So, I arrived today expecting to do the two drugs … and no. Apparently, the rules have changed. I could do oral sedation AND nitrous oxide, OR I could do just the IV. I could not do oral plus IV. They called the dentistry hotline for Ontario, got a “no”, tried to push it but they said that the dentist would have to write to be validated for their interpretation. (The dentist felt he had been doing it for 30y and there was a loophole that you could have oral sedation too for nervous patients.)
Two hours of them arguing amongst themselves later, and I was back home with just a prescription for an antibiotic. If the College or deputy God of dentists say we can do it, we’ll do it. Otherwise, I’ll be on the hunt for a full surgeon with available anesthesia.
I guess N is for no dental stuff today. Stay tuned for the REAL N that I came up with.
I was having trouble deciding what to write for “K”. Kayak is an obvious one, although I’ll come back to that in a moment. I considered going whimsical with kicking back or being kooky. Some sort of cute title that suggests that I shouldn’t take myself so seriously and instead try to find some silly things to do where I don’t have a stick up my butt. I’m not sure you can be spontaneously kooky if you’re “planning” it in advance.
Anyway, back to kayaks.
The short version of a long story is that I like being around water. I grew up in Peterborough but spent most weekends at Chemong Lake. I like calm bays, bullrushes (although we called them bowrushes), croaking frogs at night, campfires, no mosquitoes, the sound of nothing at times but perhaps some lapping waves maybe. Or being on a calm lake first thing in the morning, early in the evening. Maybe lying on a dock and staring up at the sky.
While Andrea’s family have a shared cottage, we don’t get up there often enough for me to declench and really just relax. I don’t quite relax as much just being near water if there are parking lots, boats, beaches, and people around. Walking around the parks or being next to the parkway doesn’t really do it for me. Sitting up at our friend’s place near Manotick is pretty good most of the time.
If I was sitting by a quiet lake, even camping in a trailer and sleeping nearby, that would likely do it. But visiting a busy lake or river isn’t enough. I need to be out on the water if it isn’t already quiet on shore.
The problem? I don’t really know how I want to get out there. It’s definitely not a canoe, as I’ve never really enjoyed canoeing. I have enjoyed kayaking however, so that is my go to option. Stand-up paddeboating could be fun if I could actually stand-up for long periods — or at all, really — but I can’t, so kayaking is probably the next best thing. My brother always loved those small sailboats, and I get the attraction. I might be okay with some sort of rowing scull if I knew more about it. I don’t know how good that would be on a lake or river with any waves though.
Anyway, I digress. It’s likely a kayak. That I have figured out. I think.
The next challenge is I have no idea which kind to get. Or rather, which variables I should weight to choose. Basically, I know from previous kayaking that my core is not very strong nor are my leg muscles good for sitting flat for long periods of time. It will get better, yes, but to start, I’m not doing flat options. I’m going to need some back support, and likely a bit more sitting “down in” than the simple ride-on-top versions.
Yet I’m also considering doing a long-haul travel option in a camper of some sort. Which might not have much room. Which argues heavily for one of the ones that come apart or even inflate. Do I get that immediately? Start with a basic one and then transition to a second one designed for travelling if my first doesn’t work well with my travel plans? I’ve got some good feedback from the kayaking groups. And from Trailhead at Fairlawn from their paddle shack about 18 months ago.
Except, whatever I did with the information Trailhead gave me, it’s gone from my memory and my tracking system. I am positive I wrote about it somewhere — my blog, Reddit, maybe in my OneNote or email. Gone. Can’t find it anywhere. And I was reasonably certain the brand was Pungo with a specific number of design like 120 or 150, but Trailhead doesn’t seem to carry those. Or at least they don’t now. I am pretty sure it was a recreational kayak with a wide base so that I wouldn’t flip given my weight (the wide base also ups the weight limit). I’m sure I had one that was rated to 350 or 375 lbs. Can’t find it now. Which isn’t a big deal, I’m not buying today. I’ll figure it out later this year.
I suspect I’ll buy one for the summer and try to go here in Ottawa at least once a week to get “going” so to speak. Fingers crossed anyway. I’m encouraged that my back is not screaming at me like it was last year, and that I’ll be in better shape too by summer.
So I guess K is indeed for kayak. Just no idea which one.
Okay, I’m not really talking about a witch doctor, just a foot doctor. David Seville (future creator of the Chipmunks) sang the song The Witch Doctor and I like the tune. Sue me.
But I did go see the foot doctor today. A lovely hour in a nice comfy chair talking about all the things that have gone wrong with my feet in the last 40 years.
Well, you see, Doc, it started with an ingrown toenail when I was 17. It got ingrown and then infected, and Epsom Salts weren’t doing the trick. So a local sawbones suggested we rip the toenail off and see what would happen. Apparently, what would happen is the new one would grow back into the exact same pattern and groove, get infected, and put me back in the same place at age 18. Fun for everyone. Oddly, it was never seriously painful, just annoying. But we should solve it permanently, he said, and even though I wanted to try to find some way to mould the skin over the corner that was stuck in a groove, the sawbones suggested we destroy the nailbed. Gone forever, easy peasy lemon don’t squeezy. A year later, I was back. You see, doc, they tried to take the whole nailbed, but they missed some, see…no, literally, you can see it, part of it grew back. Yep, I have a partial toenail on my right foot, on the big toe. Looks odd, not hideous, just odd, and I didn’t care about cosmetics and it had no functional problem. So we left it. It’s annoying to cut or sand down, but well, it’s better than another unnecessary surgery.
Now, over the last couple of years, my left big toe hasn’t liked me much. It is curling on the outside AND digging in on the inside. Plus, well, I’m not very flexible so I don’t do a great job on any of my toes cutting my nails. Sometimes I even catch them with the scissors (OW!). And I occasionally get mild fungal stuff going on when my feet get way too dry.
So it was time to get a professional assessment. Do I need to do anything about the big toe? What’s going on with my old toenail on the other foot? What’s going on with the other 6 toesies that seem fine and the two baby toes that I irregularly butcher? And why are my feet so dry, even if I use moisturizer?
About $100 later, much of which I’ll get back from a health claim, and I’m ground, trimmed, moulded and prescribed.
♫ My friend, the foot witch doctor, he taught me what to do ♫
I don’t think the song will catch on. But he had a lovely student with him from a school in Toronto, former Curtis gal, there on placement for 8w. She expertly clipped all my toenails, worked around the dry skin to clean out any extra skin or toenail scrapings. And then used a grinder/polisher that was super cool to get rid of all the top levels of nail. A very advanced pedicure, if you will. I confess that I’ve always wanted to go for a pedicure but thought my feet were too grody to go, and I was ashamed. Somehow going to the foot doctor is a different vibe, no clue why. Maybe because I was actually DOING something about it.
Funny question — he asked me what I expected / wanted to do and I said I had no expectation. I wanted to know what the options were, what I should be doing health-wise, etc. He doesn’t want to talk about doing anything to the nails until we have an updated A1C number which I’ll get sometime soon with some lab work. I’ll go back to see him in 8w.
In the meantime, some Polysporin on the one toe to make sure the rough and red areas don’t develop anything; plus a fungicide AND a moisturizer to combat whatever’s going on. He said moisturizer alone, which is what was recommended by other “professionals” would only make things worse; equally, the fungicide alone would dry out my skin even more. It needs to be both together in a compound formula. Ah, I see. (I really don’t but I’ll follow instructions!)
Oh, and he might be able to get me the liners for my compression socks! They’re hard to get randomly, but he stocks the same brand. They’re getting a quote for me. 🙂
I go back in 8 weeks, they’ll do a follow-up trim. Alas, the same young lady won’t be there, she’s only there for 8w at a time. As an aside, I found out people doing placements for that short a period usually use Airbnb for accommodations. Cool.
Now, I need to find a compounding pharmacy. And in a few weeks or months, the foot doctor will tell me what I should consider on that big toe. It already looks better than it has in years. That is cause for singing. Shhh, very quietly. People look at you funny if you sing about foot doctors.
Of all the topics I have in my A-Z, this is the one that I feel the least comfortable covering.
Let’s start with the basics. I’m turning 58 in June, and I feel like I’m 70. Between initial wound care and then my back problems, my mobility took a hit in 2023-2024 that carried into 2025, but I’m feeling less inhibited by my lower back. I don’t have a lot of stamina or endurance, my muscle tone has been depleted extensively, my core is really weak…I’m just not in good “shape” physically.
The only “plus” side (hah) to losing muscle tone is that I also lost the weight that goes with it. I’m down from a high of 350 to 306. That is NOT because of a sustained effort on my part, alas. It will go back up when I start working out, but I hope to be below 300 by June. I have plans for chair yoga plus the exercise bike and the Bowflex. I just have to get back to it.
For more outward-oriented fitness, I would like to buy a kayak in the next 18 months, but it will probably push to next year. I’ll go golfing a few times this year, and I’m hoping to get my scooter going. Plus more walking.
I have plans for cooking, although the contribution for health is more in avoiding eating out and cooking fresher materials than it is a specific health push for the meals.
But I have six specific issues I need to deal with this year.
My blood pressure has crept up in recent months, so I need to make sure my medications have the right dosage and make sure it stays under control. It’s the first number, not the second that is worrying me, while the second number is normally the one for concern. It’s an easy fix; blood pressure monitoring, check dosage with the doctor.
My diabetes seems under control most of the time, type 2, and right now, the biggest impact is on my lower legs and feet. I need new compression stockings, which requires a new referral and prescription form, which requires a visit to the doctor to get, etc. It’s annoying but easily fixed. For my feet, I had an ingrown toenail back when I was 19, it got infected, and they removed it. It grew back into the same groove and got infected again. So they destroyed the nailbed to theoretically get rid of it entirely and yet didn’t get it all. So I have a partial toenail on my big toe on my right foot. No big deal, looks a bit odd, but well, whatever. However, my toenail on the big toe on my left foot is not in great shape or growing in the direction I want it to do. I’ve trimmed, directed, massaged, etc. but I just need someone more professional to review things and tell me what to do. My GP agreed, I’m seeing someone next week, it’s not terrible, but worth having it checked out before it becomes something more egregious, particularly tied to my diabetes and that all diabetics have feet problems.
My sleep has gotten messed up big time in the last year. The mask I use on my CPAP has a wrap-around strap and it’s been annoying me on and off for the last year. I ordered a new one off Amazon, works fine, but I don’t have the same seal I used to get from the old setup. It seemed like it was part mask, part strap and part machine. The machine did NOT seem to be providing the same level of air as it used to, or more accurately, I wasn’t getting the vapour lock to force it to close my mouth all the time while sleeping. I played with it, it would get better, the strap would lessen, blah blah blah.
Shortly before Christmas, we visited the CPAP place to get Jacob a unit to try, and I talked about getting a new machine. Like the compression socks, you need to have a prescription to get one properly and to have it all covered. And the place won’t give me one without an updated prescription; the sleep doctor won’t see me without a new referral request; and so I have to see the GP to get the referral form. Sound familiar? Now, I know too much about billing issues to not understand what is happening. If I go to my sleep doctor, who prescribed it last time, they get a set fee for seeing me as a follow-up patient. However, if they get a “new” referral, they get more money from OHIP to see me. Hence the reason why they want a new referral. I am 100% a follow-up patient, but if they force me to get a new form, they get paid more to see me. Even though all they are going to do is ask, “So, how’s your machine working? Good, good. Here’s a new prescription to replace it with a new model.”. My sleep machine IS due for a replacement, almost 10 years at this point, it even has a message on the machine saying the “motor” is at the end of its life and the unit should be replaced. And the province will replace it, covering most of the cost. I just need someone to write me a new Rx. We put in a request for the referral, someone will call me, etc.
In the meantime, the sleep place gave me new straps for my headgear. I tried it once, but it didn’t fit at all. I ignored it for a week. Then one morning I woke up, was thinking about it, and went, “Doh!”. The previous headgear comes with two pieces on the sides that serve as extenders…meaning the strap at the back of my head only has to cover about 4-5 inches of space. The NEW straps are designed to go about 9″, way too big. Unless…unless…unless I take off the stupid extenders and run it from ear to ear the way IT IS DESIGNED, YOU NINNY! (Me, not you). And so I put it on, and whaddya know, the vapor lock came back. The other design wasn’t working for me as well as it could; one new strap later, and I slept through the whole night without waking up. The sleep data shows everything is working relatively well, anyway, but I feel more rested. The first week with the new strap was like heaven in comparison. Now I’m back to waking up. But at least things are in “motion”.
I have also noticed as I age that my hearing is not as good as it once was, so I’m trying to book a session with an audiologist to get hearing aids. Do you know that it is not simply “call and get them”? I have literally tried making appointments in the last two years at three different places and either got cancelled or fully ghosted. I don’t know if it’s a business problem, an audiologist availability problem, or the market is just saturated somehow. It’s annoying.
Level 2 problems have entered the chat
I’ve previously written about my fear of dentistry. Growing up, we didn’t have good coverage and we didn’t go very often. More for problems than regular maintenance. It wasn’t until I was an adult with coverage through work that it became more of a regular thing. I didn’t enjoy it, of course, not that anyone does, and I do have a really strong gag reflex, but you know, I got it done. I had an amazing hygienist for a while, kept me calm and didn’t gouge my gums. Oh, sweet bliss. Did some cavities, a bit of other stuff, all good. But doing cavities was hard with just freezing for me as the longer they were in my mouth, the more I would start to get nervous.
It all culminated in a really bad experience where I had a post in my mouth between two teeth, some latex wrapped around a hoop, and it felt like I was swallowing the latex. I had a full-on, no word of a lie, panic attack. I thought I was going to die swallowing the balloon that was in my mouth. I eventually grapped the chair arm, had the guy work on me for about 10 minutes and get everything out, while my whole body wanted to lunge out of the chair and do zoomies in the hallway. It was literal torture for me.
After that, I switched dentists, and she recommended I go the sedation route. I did, did some route canals with NO MEMORY of any of it, it was perfect.
Then the pandemic killed me for oral care. I totally changed my routine, and I did not keep on top of my cleaning duties. Not egregious, but not healthy either. Forget flossing every day, I even missed days for brushing. Anyway, back on track, but it hurt the status of my teeth and gums. I have two teeth at the front of my mouth that the nerves went dead, and the teeth have started to turn black. It grosses me out and embarrasses the f*** out of me too. I should have seen a dentist long ago, but well, fear and cowardice prevented me. Even with the sedation, I was afraid to go. Over Christmas, I had an abscessed tooth that caused me a lot of pain, and I’m do for a double route canal in two weeks, plus some cavity fillings. Great fun. Except I’m not even sure I can do it. I did an extra-long cleaning before Christmas, and even that requires sedation for me at this point. And I didn’t go “under”. I was awake the whole time, both aware and feeling what they were doing. That is not a good omen for the route canal. I cannot be aware for 90 minutes while they work in my mouth. I might need an actual IV to do this. Another dentist offered to do it over Christmas with just gas, and I was like, “No chance”. She even said she didn’t think she was up to my level of problems. (Welcome to my world, is what my wife would have said, I’m sure).
So there’s that. It’ll get done, I just don’t know what it’ll look like. I took a picture of the before look of my teeth, and I’ll share it with the after photos. Part of my way of facing my fear is to out it. However embarrassing my mouth looks, the only way to face the shame is to own it.
The next problem that has levelled up is mental health. There are a bunch of diagnostic tests that they do for psychosocial metrics around happiness, motivation, depression, etc. When I was in wound care, and having serious problems with my shins, something weird happened, and it made me a bit worried, enough to do the tests.
All of the tests ask about whether you think things are hopeless, whether you ever feel like nobody would care if you were gone, and whether you are considering harming yourself. Well, I’m fine on those. I’m not suicidal, so we can take that off the list. However, my wound care lasted a few months, and then I had a huge setback that put me back even farther than when I started. I was feeling old, I was feeling like it had no light at the end of the tunnel, I was in pain. It wasn’t hopeless, but it wasn’t fun. And when I went to see a special clinic, where the main guy is also a surgeon, I wondered if this was some sort of potential radically bad infection situation where they could consider removing part of the leg. Not likely, but I wanted a solution. And if they had said that was the option, my reaction likely would have been, “Okay, is this an outpatient thing?”. I wasn’t suicidal but I wasn’t feeling particularly protective of myself either. I wanted solutions. Today. I was not in a good headspace for calm, logical decision-making. But I spoke to the GP at the time, ran through the diagnostic tests, nothing scary, low to moderate depression and anxiety. Totally appropriate for the situation.
However, the fall of 2025 pushed my buttons some more. We had a good trip in the summer, things should have bumped up after that once we were home. But they didn’t. I’m a bit stressed about retirement options, sure. Jacob’s health is ongoing, mine too, Andrea’s showing signs of burnout; we’re all in need, so to speak. And I’ve noticed that many of my coping methods are NOT working as well as they had in the past. I wasn’t shaking things off when persistent thoughts intruded. I have lots of ways and techniques to shake my brain out of a wayward path. None of them were working, except the one that overrides everything.
I go for a drive, no destination in mind, just as long as there are lights, turns and traffic. I turn on some music that I like, and I blast the f*** out of it. Between driving and listening to the music, I can only keep one thought in my head at a time, and not for long. So I start daydreaming and drifting, driving out the big terrible conscious stuff that was bothering or nagging me, persistently, and just “being” in the moment. It lets me relax. No catastrophizing, no worrying, nothing but light driving and focusing on the road or where a song’s story might have come from or goes after the song ends.
Unfortunately, that’s not sustainable as the only working technique, nor is it good for my hearing.
As an aside, my brothers have dealt with similar brain paralysis and fixations. My brother Don was in the hospital at one point for an extended stay for his diabetes, and while he was in there, they put him on antidepressants and had time to properly calibrate the dosage. I had lunch with him about 2 months afterwards, and I didn’t recognize some of the things coming out of his mouth. He was talking about something that was frustrating him, and that would normally be the onset of a rant about the level of frustration. Instead, he said, “But there’s nothing I can do about that right now so I’m focusing on this over here.” WTF? WHO ARE YOU AND WHAT HAVE YOU DONE WITH MY BROTHER?
Improved living through appropriate pharmacology.
So, going back to those diagnostic tests, I was doing a physical before Christmas (related to a pension thing, but a good thing to do anyway). And I mentioned that, at some point, we should talk about mental health again. So we did the tests again, and I’ve moved from low/mild-to-moderate to full-on moderate depression. Still a smidge on the lower side, but clearly higher than I had been. I told him I was open to meds, if that was warranted, but I also fear them. Too many people have said they don’t feel like themselves on the drugs. But I need help.
The long and the short of it is I am now on happy pills. It’ll take a good five weeks for them to take hold, and I’m only about 2.5 weeks in. It’s a class of drugs called “selective serotonin reuptake inhibitors” aka SSRIs. Mostly, the drug is used for depression and anxiety, and increases serotonin to improve mood and balance. The first few days, the only noticeable effect was that it made me dizzy for the first few hours after taking it, which went away after day 5 or so. I’m a little sleepier in the day this past week, but nothing big or unusual.
Will it make a big difference? I don’t know. I got a placebo effect almost immediately. The fact that I was DOING something about it gave me peace of mind and I’ve felt less anxious the last two weeks. Is any of it the drug? No clue. But I’ll try it for 8-12 months and see how it goes. I started January 1st, so it will be easy to track.
So that’s about it. The dentist is worrying me the most; the rest is mostly noise to figure out in the next six months or so.
Although I am privileged economically, I feel less empowered emotionally. I was reading an article sometime ago about emotional development in terms of navigating difficult situations, at least those that are emotionally challenging, and I’ve been reviewing my experiences for any insights or lessons learned that can help me today. The review is not about traumas, not really, but rather regular life events, mainly. And while I feel somewhat resilient or in touch with my inner self, I am looking back at certain touchstones.
Revisiting the past
One of the touchstones you see in the literature is “dealing with shame“. It usually revolves around either a deep insecurity or self-doubt (hello, weight!), or is merged with another touchstone, such as recovering from failure. Back in 1996, I declared bankruptcy. Several issues were at play, not all of which were of my own making. Still, the part that was my responsibility was trying to juggle working as a consultant, living on my own, paying student loans, and not being particularly skilled with finances. I don’t talk about it much, obviously, as it’s not something I’m proud of, but it was the right decision for me at the time. And like the tenets of programs like AA or NA, you have to admit your failings to take away their power to control you and empower you to move on. My situation is obviously better now, but a lot of that is because a) I started to earn more money and was in a stable job over time, and b) I married someone with an equally good salary that doubles our reach. I wouldn’t say I’m yet good with money, I still eat out a lot, but it is what it is. I’m better than I was, not as good as I would like to be. There’s a lot of emotional turmoil in my past that’s tied to money, but I don’t feel it controls me.
A second (or third?) touchstone is basically saying goodbye to someone who’s still alive i.e, the two of you simply won’t be together anymore by choice. Often, that is a moderate and expected loss, say with transitions at the end of elementary school or high school. More often, it is a break-up. If the relationship simply ran its course, that’s not really the touchstone being considered…it’s more the “hey, we probably won’t even be friends anymore” kind of separation. While I don’t have any raging exes out there, and I left on good terms with almost all, I’m not really in active touch with any of them either. Not that I feel I should be, just a sense of missed opportunity perhaps, maybe because I feel a bit differently about love and loss than most people.
I feel like everyone you love — both romantically or as a close friend or family member — takes up some form of permanent residence in your heart; even if they move out, they leave behind a bit of themselves, an imprint perhaps or an echo. I can think of three people from high school, two of whom were close friends, and they still reside in my heart. My best friend drifted off to a different university; another I reconnected with at one point but the relationship was a bit toxic, so I had to end it. The third is living some version of their best life in Ontario, someone I thought I would know my whole life, and yet I haven’t had any contact with them in 30+ years nor expect to ever again. At university, I can think of two really close friends, gone from my life mainly through inattention. Add in another 3-4 in BC. While I was at DFAIT, there were about six, with two really close friends who will always be in my heart. Add in another five or so over the years who moved from good friend to close friend. Plus a dozen or so current friends who also hold a similar place. You say goodbye to many of them in stages, often without even knowing they’re leaving.
It’s interesting that in the original article and some linked materials, almost none of them talked about an odd touchstone. Finding out who you are as a person. Self-love, I suppose. Coming to terms with yourself. My PolyWogg status from 1996 to 2001, when I field-stripped my psyche, was painful and cathartic, terrifying and exhilarating. Beyond challenging. And I did it to myself, for the most part. Looking back, it let me become the person I was when I met Andrea. It ties in, in part, to the touchstone of being truly vulnerable, but I think it’s almost a double-barrelled vulnerability. Everyone talks about being vulnerable with someone else, obviously, but I think it is equally important, if not more important, to initially be vulnerable with yourself.
All the articles and materials discuss the obvious challenge of grieving the loss of a loved one. My father, my mother, some friends, my brother, Andrea’s grandfather and two uncles. Obvious losses, relatively common experiences. Yet my experiences with my dad before his death created something weirdly healthy. I knew when I moved out West back in ’91 that I might come back for a funeral. So I made sure that anything I had to say to my Dad, I said it to him when I felt it. When he died, I felt like it was the best relationship I had ever had with him. Nothing unsaid, nothing left undone. And I carried that approach forward.
The literature talks about “forgiving someone who has hurt you”, or dealing with “unresolved hurt” from others, but I don’t feel that was quite what I did with some. I simply decided, for example, that my Mom was who she was, not the Mom or person that I thought she should be. Sure, she could annoy the piss out of me, things that could frustrate me to no end. But each time I thought about it, I came to the same conclusion. She lived according to her life and her rules, not mine. Again, my relationship with my Mom ended on the best terms I had ever had. There was a slight disappointment that I couldn’t do a couple of things she wanted me to do after she was gone; I had to accept not only her limitations but also my own.
For my brother, Don, I wish I could have waved a magic wand to change his life and give him a more positive outlook. I’d like to do the same for another family member. But, in the end, all I can do is accept them for who they are; I cannot live their life for them. Instead of a warped version of the Serenity Prayer, my thoughts remind me of a particularly good line from the TV series “The West Wing.” In a flashback episode, they discuss how to convey Bartlet’s intelligence (including a Ph.d. in economics) in a more relatable manner to the average person. None of what they try works. Until Leo sets the game plan — “Let Bartlet be Bartlet”. For my family and friends, I try to do that. Let Don be Don, let my Mom be Mom. In situations where I can’t do that, such as where their behaviour negatively affects me, then I can’t be around them. The literature often links that to another touchstone, “putting yourself first”, which I started to do about a year after my father died. I buried myself in another approach for about six months, trying to please everyone, but eventually, I had to say enough is enough and step away.
I’m not always good at this one…both in terms of doing it when I need to, or not doing it when I shouldn’t. It’s a tricky balance.
I find it interesting that none of the literature appears to address a particular variation of the above themes. It talks about losing someone; it talks about saying goodbye to someone; but it rarely talks about coming to terms with almost losing someone. The fear, the trepidation, the relief, the release. But the emotional rollercoaster has very different twists from actual loss. When Andrea was 26w pregnant with Jacob, she had premature partial rupture of the membrane (PPROM). Basically, her water half-broke, causing her to leak but without labour nor draining completely. I’ve written before about how this became a math equation for 10 weeks. If person X (Andrea) is leaking fluid from her uterus at rate U ml per day and replenishing fluid at rate R ml per day, and baby Y (Jacob) needs enough fluid to prevent infection and do the backstroke for mobility and growth, how long can Y stay in X?
She made it 10 more weeks before a planned C-section, which is another story altogether, but at 26w, I felt like I was going to lose one or both of them. It was a scary night. There was little risk to Andrea, in reality, but it didn’t feel that way until after the birth. Yet the fear for Jacob never really dissipated. Through the NICU experience, and then 5.5 months of emergency room visits, failure to thrive, and a host of other issues, it seemed like the universe had decided to stack the deck against my son. I find it odd that so much of the literature talks about facing your own mortality, or actually losing family, but not much about the process of facing the potential mortality of your spouse and child. It has been the most difficult time of my life. And while it helps, it is hard to pinpoint lessons learned.
My most persistent challenge
However, out of all things that I have faced in my life, my most persistent challenge has been uncertainty. It is my greatest weakness, my fiercest foe. I thrive on planning, controlling for variables, and contingencies on top of contingencies. Decision trees to guide possible outcomes. Uncertainty kicks my ass every time.
When Jacob was born, and we found out that he had cataracts (as we expected), I was quite active in searching out information, joining discussion groups, looking for expected pathways for what was to come. It was mostly catch-up, as Andrea had cataracts and stuff as a child, so she understood most of this more intimately and even intuitively at times. For me, it was all new. So, I researched the crap out of it. That was my coping mechanism…more info to aid in my forecasting of possible outcomes and developments.
Yet Jacob had a LOT more going on than just his eyes. Over the first year, he saw Ear, Nose and Throat; plastics; PT; gastro; respirology. I used to joke that I felt we had seen everyone except a vet, and I wasn’t even sure there wasn’t one in there. Now that we know he’s a penguin (!), maybe a vet would have been good! 🙂 And we had dozens of appointments, if not into the hundreds. Once in a while, we would meet a new specialist or ER doc, give his patient history (PPROM at 26w5d, C-section at 37w, double pneumo thorax, never intubated, always breathed on his own, a bit of jaundice, torticolis, swelling, congenital bilateral cataracts, blah blah blah), and they would pause before asking, “Do you have a medical background?”. No, no medical background. Just a steep learning curve with lots of repetition.
But, as much as I worried, Jacob was Jacob. He grew at the rate he was going to, and at a year, most of the simple stuff resolved. Our favourite words were, “We don’t need to see him anymore.” We were in the car before they finished the sentence. But as he got older, we started hearing the words Cerebral Palsy. And the docs told us NOT to go rushing to the internet to research all the details. Because most of it wouldn’t apply to him anyway. No sense worrying about the whole spectrum rather than the specific symptoms, if that was even what he had. Yet that had been my goto solution for uncertainty with his eyes. I researched the crap out of it. For CP? I listened and didn’t go down rabbitholes.
Jacob has extra issues, yes, but he deals with most of them himself. We help, but most solutions are Jacob being Jacob.
Until eighteen months ago. The short version is he fell down, no big deal, although not fun. Yet, two weeks later, he started showing signs of headaches, dizziness and nausea. We thought at first it was a concussion, but it didn’t react as a concussion. Regardless, you treat the symptoms. The nausea is mostly gone. We found medicine for the headaches, which mostly works, although not perfectly. But, we don’t have solutions for the dizziness. Which has left him in dire straits at times for being able to attend school consistently or frequently.
However, none of that is particularly relevant to what I’m talking about. I’m talking about me, and how I am dealing with helping him, taking care of him, even advising him. We have no answers for him. The doctors have no answers, nor even a prognosis. Will he be better in 6m, a year, never? Is this temporary or permanent?
Last April, I was stressed out of my gourd. I was juggling work, transport, Jacob’s appointments, etc. Andrea does most of the bookings, I would drive him here and there. But there was no predictability. I took time off from work for 3w, wondering if I should just take off several months to help him. Except once I took the time off, my stress dropped to zero. Instantly. WTF? How? All of Jacob’s stuff stayed the same. How could I have zero stress?
It wasn’t Jacob’s needs that were messing me up. It was the uncertainty. He’d plan to go to school Monday morning, so I would plan to stay home that morning to drive him while Andrea would go into the office. Except Monday morning, he’d be sick, and staying home. So, then he would be going Tuesday now, but I planned on going to the office Tuesday. So I’d rejig things on the fly. Then Tuesday morning, something else would happen, and I’d have to adjust the schedules of Andrea, Jacob, and me all over again. Then an appointment would get cancelled and something else would have to get adjusted. The uncertainty was killing me. But once I was off work and thus available whenever Jacob needed me, the uncertainty was manageable, and all the stress disappeared. The problem wasn’t working, per se, but rather adjusting schedules when uncertain forces conspired against us.
I’ve been fortunate. Work has allowed me to continue working from home while Jacob is rebuilding. No scheduling headaches. It works. But as we approach the end of Grade 10, I’m increasingly stressed. Next year, his grades will be much more critical to his future. And yet he is NOT back to full strength. Nor is he showing signs of significant improvement. It’s a gradual improvement, but it is far from success. Plus somewhere in the next two years, he’s supposed to have major surgery for his legs and hips, complete 40h of volunteer work somehow, and maybe learn to drive. If he could drive himself to school, a bunch of pressure would slip away. He wouldn’t have to wait for me, nor would I have to juggle as much. We’d still have to attend appointments and other commitments, but at least school would be better covered. If he is even healthy enough to drive.
I want to help him, I want to frame the problem for him. I want to control the variables, put in place a set of solutions that I think might work. I want to reduce the uncertainty and make changes, try to fix things. I want to know how I can help instead of feeling like the only thing I can help him with is being a chauffeur. I am finding it really hard to just “be”. To let him manage things with Andrea (he responds better to Andrea, or at least, she doesn’t seem to make it worse like I do, I just stress him out).
I know the right answer in terms of my role. It’s to tell him that I love him. To tell him that I believe in him, that he’s doing his best and he’s capable of whatever he sets his mind to, that he has hurdles, but he is awesome. To tell him that I will do anything he needs me to do to help him. And to get the f*** out of his way.
To let Jacob be Jacob.
The universe is full of uncertainties, and I really f***ing hate that about the universe right now. It kicked my mental health Tuesday so I took the day off on short notice. Wednesday was a little better. But like most things, it’s day by day.
Uncertainty sucks. And the rest of my emotional learning doesn’t seem to be of much help.
