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.