Christmas Day With My Parents, And Other Life-Threatening Challenges

Christmas day this year was rather challenging, principally because my dad is dying. He’s 87 and got cancer 3 years ago. The 18 months of radiotherapy and chemotherapy probably saved his life, but now his bone marrow is fucked and he can’t make his own red blood cells, so he’s going to die. He knows it, I know it, everyone in the family knows it. We just don’t know when. I feel absolutely devastated.

Watching his steady decline is all the more painful because it brings up all the unmet needs I still have in my relationship with him, like security and significance, that I now know for sure he will never fulfil for me. I’ve realised this intellectually for a long time but seeing him slowly die real nails it home. My relationship with my dad has always lacked emotional intimacy despite my best efforts to connect with him over the years. He just didn’t have it in him. At the same time, he’s the one person I feel most confident in saying who genuinely loves me… and now he’s going to die. Fortunately, he’s not in any great pain as far as I can see… he just gets tired a lot.

Which brings me to my own health problems. I get tired a lot too. I have had a mysterious chronic fatigue illness for 12 years which has left me feeling absolutely exhausted every single minute of every single day and has driven me batshit crazy searching for answers. A year ago I had a sleep study (a.k.a. polysomnograph) and was diagnosed with severe obstructive sleep apnea, which probably explains all my symptoms and also turns out to be life-threatening.

This has caused me a lot of anxiety, not just because it’s a serious life-threatening illness, but also because having breathing obstructed during sleep puts my body into fight-or-flight mode all night. I heard one expert describe it as being like having a mugger come up behind you and put his hand over your mouth and nose every 60 seconds. Yikes. Yet because it only happens when I’m asleep, I wasn’t even aware of it: I’d just wake up every morning feeling exhausted with my heart racing and my body buzzing.

Finding an effective  a treatment that works for me has been challenging. When I asked the sleep specialist who diagnosed me what caused it, thinking that knowing the cause would point me to the best solution, he said: “It’s caused by the muscles in your throat collapsing when you sleep.”

I’d already done enough research to know that, but it didn’t explain why my airway was too small to tolerate the muscles in it relaxing during sleep, so I asked: “And what causes that?”

He replied: “Your body loses muscle tone as you age.”

I knew that too, and it still didn’t explain why my airway was too small to tolerate the muscles in it collapsing, so I kept probing deeper: “And what causes that?”

He shrugged his shoulders and replied: “Genetics.”

I wasn’t convinced. I knew that obstructive sleep apnea is a modern lifestyle illness which has been around a long time but was only named in the 1970’s as its incidence started exploding far too fast to be caused by to evolutionary genetic changes. There had to be a better explanation.

Nevertheless, after a year of trying alternative treatments and a mainstream mandibular advancement device which failed to treat it effectively, I finally relented and bought a CPAP machine. I don’t find CPAP easy to sleep with and it may take a few months before the effect on my daytime sleepiness really kicks in but it should keep me alive while exploring my options, including various orthodontic treatments and/or some pretty gruesome surgery.

The research I’ve done indicates that the likely cause of my obstructive sleep apnea is the orthodontic treatment I had when I was 13. Like every other kid in the playground at the time, I had crowded teeth, and the orthodontist my mother took me to said that my teeth were too small for my jaws. His solution was to extract my four perfectly healthy bicuspid teeth and put braces on to pull my front teeth backwards, close the extraction gaps, and straighten the remaining crooked teeth. It was agonising and lasted about 3 years, after which I wore a retainer for another year or so; however long he told me to. I did what I was told because I was that kind of kid.

Unfortunately, I now know that this whole “treatment” was a complete disaster for me.

The problem wasn’t that my teeth were too big: it was that my jaws were too small, and this was a consequence of the overly-soft diet my mother had raised me on. Rather than using a palate expander to expand my jaws, which had been around for over 100 years at this stage, the orthodontist had extracted teeth: which actually shrinks the jaw even more. The pain also made it impossible for me to eat the crunchy food that is necessary to promote development of the bone in my jaw, which made the root cause of the problem even worse.

This meant that there wasn’t enough space in my mouth for my tongue, which has nowhere to go in the middle of the night other than backwards into my airway, giving me obstructive sleep apnea. That led to chronic migraines in my 20’s, anxiety, depression, and burn-out in my 30’s, and eventually chronic fatigue syndrome in my 40’s. I wasn’t diagnosed until age 50 because I don’t fit the profile of a typical obstructive sleep apnea patient: While I am male, I’m not obese, don’t drink, don’t smoke, have small tonsils, and only recently became middle aged. Sleep specialists who never bother to do a root cause analysis still haven’t identified teenage extraction/retraction orthodontics as a risk factor in obstructive sleep apnea. No doctor ever asked me about it, you won’t find it listed on any of the mainstream lists of risk factors for obstructive sleep apnea, and many orthodontists are even in denial about the link.

It wasn’t until I came across airway-focussed orthodontists and dentists trained in dental sleep medicine who understood the mechanics of the interaction between teeth, jaws, the tongue and the airway during sleep that I learned what had caused my chronic health problems and what I was up against to find and implement a solution.

I used a mandibular advancement device for six months, but this advanced my lower jaw so much that I couldn’t chew properly anymore and there is research showing that long-term MAD use makes sleep apnea worse over time. I’m coming to terms with the fact that at age 51 I may need braces again, an excruciating upper-palate expander and possibly double jaw surgery. I remember how painful braces were when I was a kid, and I’m frightened that the treatment I need is going to be long and painful too.

I’m pissed off that an illness I had no idea that I even had until 12 months ago has had a devastating impact my life, physical health, mental health, career and relationships; and it could all have been prevented if I’d been given the appropriate expansive style of orthodontic treatment at age 13.

With all that in mind, on Christmas day I drove both my elderly parents to my sister’s place where we all had a pleasant Christmas lunch together. My narcissistic mother has always set the emotional tone of family events and this Christmas day she was in a fairly good mood, perhaps because dad had made it through the year again.

On the way home in the car dad sat in the passenger seat and mum was in the back. Our conversation led to the topic of sleep and I told my parents about the potential orthodontic treatment and surgery that I’m staring down the barrel of in order to treat my obstructive sleep apnea, save my life and restore my health. No doubt there was some anger and frustration in my voice as I couldn’t help but feel that the parents who were supposed to protect me from things that could hurt me when I was a vulnerable child had failed to do so, had left me to sort the resulting mess out for myself, and were in the car with me.

My mother’s response was to condescendingly say: “Oh, you poor deformed little boy.”

When she said it, I felt an unpleasant, disorienting sensation which I now recognise as my disowned anger, pushed down over years of experiencing terror around the explosive way my parents expressed their anger. My experience of anger around my parents has been so destructive that I used to completely repress mine. I’ve since spent years learning to connect with and express my anger in a healthy manner.

I felt hurt and angry, and despite my fear of how it would go, I finally felt the courage to tell my mother that I didn’t like what she had said. The conversation had moved on a little but I didn’t want to just let this slide, so I turned off the radio and said:

“Mum, I really didn’t like it when you called me a ‘poor deformed little boy’.”

She replied with “Well I’m sorry…” and then proceeded to justify why it was OK for her to say something hurtful that in response to me expressing my fears about treatment for a serious life-threatening medical condition. It didn’t sound like a sincere apology at all, which was further demonstrated as we went on to have a long argument where she became very aggressive and I felt my feelings being completely invalidated.

My mother is a classic narcissist and whenever she is challenged on her behaviour, her response is to go on the attack and tear shreds of her opponent; even though by any normal standards she’s the one in the wrong. When that doesn’t work, she plays the victim. It’s a total mind-fuck.

At one point she said: “It’s just my sense of humour.”

Maybe she does have a wacky, eccentric sense of humour that I’ve just never discovered before, but I didn’t hear any levity in her delivery, and sensed this was just another retrospective attempt to weasel her way out of taking responsibility for hurting my feelings.

This argument reminded me of all the arguments between her and dad that used to terrify me so much when I was a kid. It’s no wonder I became afraid of conflict after experiencing it being scary, hurtful and without ever any resolution. Except this time, I did a much better job than dad ever did of disarming her attempts to blame me for her upset.

I can’t honestly remember everything that was said during the argument, but I feel proud that I stood up to her bullshit more effectively than ever before. When dad tried to weigh in, I told him to stay out of it because even though I sensed he was likely to be supportive, I didn’t feel I could trust him to stay the course when mum inevitably started attacking him.

I’ve learned that I can’t rely on his support in conflicts with my mother because he’s basically terrified of her, like everyone else in the family. He usually ends up siding with her regardless of how ridiculous her position is, just to keep the peace. Besides, the more people you have in an argument, the less likely you are to resolve anything and this was between mum and I. Being assertive with him felt good too.

My mother kept on making me wrong, eventually winding up at: “Look Graham, I’ve said sorry. I don’t know what else you want me to say.”

This was technically true, and it was quite uncharacteristic; but it also felt totally insincere. It sounded more like she was sorry that she wasn’t winning the argument than sorry that she had said something that had hurt my feelings, but that’s narcissistic guilt for you.

“So why are you still arguing then?”, I replied.

Mum went on to continue criticising me for upsetting her, eventually turning to the good old guilt trip saying: “Well you’ve ruined Christmas Day, Graham!”

I wasn’t going to fall for this manipulation, so I replied with simple undisputible facts: “No I haven’t. We had a perfectly nice Christmas day, and you’ve said something in the car on the way home that hurt my feelings, that’s all. It doesn’t change the fact that we had a lovely lunch together.”

When her attempts to make me feel guilty for being assertive with her failed, she changed tack into “martyr mode” and started playing the victim. I can’t remember exactly what she said, but it was obvious what she was trying to do. I wasn’t going to fall for that either so I started using the “broken record technique”, replying to each of her manipulations with:

“I don’t accept that mum. You’re not the victim here mum, you’re the person who had said the hurtful thing.”

Meanwhile, dad is sitting in the passenger seat quietly observing the fireworks.

When I dropped my parents off at their place, my father apologised to me saying: “I’m sorry.”

I took it as a sort of blanket apology on behalf of him and my mother, but it felt hollow since it wasn’t him who had made the hurtful comment, nor engaged in the argument afterwards. Perhaps he was sorry that my mother was such a bitch, but I think that’s too big a stretch.

“Thanks dad, but it’s not your fault”, I replied.

As I said goodbye to my patents, my father and I hugged.

My mother was well and truly in martyr mode by this point and declined my invitation to a goodbye hug. I doubt I would have wanted a hug either if I had been in her position, but it reminded me of all the times in the past that my mother has withheld affection to punish me for being assertive. It’s manipulative and pisses me off. I barely slept that night, I was so angry.

I’ve lived with this kind of bullshit behaviour from my mother all my life and have had countless hours of therapy to try and deal with the impact on me and get her out of my nervous system. Sometimes I feel like a fraud because I haven’t fully dealt with my own childhood conditioning yet, but the little breakthroughs like being assertive with her on Christmas Day are how I make progress.

I have deep empathy for what my clients are going through and just how fucking scary it can be to cut the emotional umbilical cord with the narcissistic mother who brought you into the world, withheld the emotional connection, support and encouragement you needed to develop a sense of safety, and then blamed you whenever she was upset.

Emotionally healthy people don’t put up with this kind of behaviour in the real world, but little Hitlers like my mother get away with it in families and passive men like my father either stand by and let it happen, or weigh in with their own abuse. That shits me. So do domestic violence campaigns that only focus on men as if women are faultless.

My father was pretty pathetic when it came to standing up to my mother’s shadow side, but it was my mother who did far and away the most damage to me. I have a couple of close friends with very young sons and when I see them in person or on Facebook showing the delight that they experience at their son’s every move, I feel a huge sense of loss that I didn’t get that from my mother.

I’m crying as I write this so it’s still painful for me even 50 years later, especially when my father is dying and I get reminders like the argument on Christmas day. What I got was a narcissistic bitch who gets angry with me when I’m upset, attempts to justify hurtful comments by saying things like “I’m your mother!”, acts like a spiteful child and then tells me to “grow up” when I stand up to her. The whole thing is completely backwards and it’s a total mind-fuck.

Five weeks ago, I visited my mother’s older sister in hospital. She was 97 and still quite lucid. Our families spent a lot of time together when I was a kid, but I never really connected with her emotionally because she felt a lot like my mother to me: cold, distant and hard to relate to. However, on this occasion she opened up and told me her experience of my mother (and father): “They were both very angry”, she said, “I don’t know why.”

“What do you think caused her to be like that?”, I asked.

She replied: “She was always like that. She wanted to rule the roost. I’m very different… more… compassionate and…”, she struggled to find the right word, perhaps feeling guilty at criticising my mother in front of me.

“Sensitive?”, I suggested.

“Yes! That’s it. I’m more sensitive”.

I knew my mother and aunt had had a brother who was rarely spoken about that died in an accident at the beach when my mother was 12, he was 17 and my aunt was 20. I though this was worth asking about: “Do you think your brother’s death had had a big impact on her?”

My aunts eyes welled up with tears and she said: “We’ve never spoken about it”.

I saw a side of my aunt that I hadn’t seen before and it was very validating for me to hear her perspective on my parents. It was like she was wanting to tell me that it wasn’t my fault and that I wasn’t the problem. I also got to see the impact of not sharing emotional pain in a family: it just stays unresolved for decades.

Two weeks later my aunt died. I was supposed to be a pallbearer at her funeral, but I woke up with a screaming migraine that morning and was in so much pain that I couldn’t make it to the funeral.

Earlier on Christmas Day my mother had shown me the order of service from my aunt’s “Celebration of life”, and I thought: “Typical of my emotionally avoidant family to want to avoid their grief by not calling it a funeral.”

I grew up going to church like the rest of my family but now I’m an atheist and I see their religion as a desperate attempt to avoid the pain of reality and the frightening vulnerability involved in emotional intimacy with real people. I feel trapped by my current reality; especially my health problems, my father’s impending death and the latent impact of my toxic mother.

I broke contact with my mother for about 18 months a few years back and it was the best thing I ever did. I neglected the connection with my father because they lived together, I wasn’t calling anymore and he rarely calls me. When he was diagnosed with cancer I got back in touch because I wanted to spend time with him before he died. I was really triggered by my mother’s behaviour and prefer not to spend time with her but she is his principal carer so I don’t feel like I have much choice.

Being dog tired myself all the time doesn’t help and while part of me feels like I need to retain contact with my family for my own support, the reality is that my mother’s narcissism has infected everyone so when I got ill nobody was there for me anyway. I was effectively bedridden for several years and nobody came to visit. Not family, not friends. Nobody. That hurt a lot. The whole thing seems ludicrously one-sided. I get that parents have children to meet their own biological needs but I feel like I’ve just been a toy for my parents to play with that they felt no responsibility to meet my emotional needs, whereas I’m supposed to feel obligated to help them now that they’re old. I resent that. It’s unfair.

I know life is not fair and that I have it better than most, but it still upsets me when I’m feeling overwhelmed by my own challenges. While my mother’s attitude had shifted positively somewhat when I reconnected in the wake of my father’s cancer diagnosis, her toxic nature still rears it’s ugly head when I’m upset about something. She goes on the attack in order to avoid having to feel anything remotely unpleasant, depriving me of any compassion or empathy from her. Plus I get wounded in the assault.

The only real solution is to get on with my own life and form better relationships with women I enjoy being around. I’m still single and that wasn’t ever what I really wanted; but the truth is I’ve struggled to establish relationships with women that aren’t co-dependent. I inherited my father’s low self-esteem and poor communication skills, so I’ve spent a lifetime working on my own. I actually think I’ve done a pretty good job, but here’s what really pisses me off:

I’ve spent most of my life trying to undo the damage that was done to me as a child and now in addition to all the bullshit emotional baggage I got lumbered with, I’ve got a physical structural problem that’s causing my tongue to choke me in the middle of the night.

No amount of meditation, positive visualisation, talking therapy or emotional healing to fix it. I may need surgery for fuck’s sake, and braces. I’m angry with the orthodontist who wrecked my airway, my mother and father for letting it happen. I don’t believe in God, but I still had a lot of religious conditioning so I’m angry with him too for not being there for me when I needed him.

I’m also worried that I don’t currently have a career capable of paying my bills. My first career as a highly regarded and well-paid computer engineer stalled when I got really depressed in my late 30’s. Like “Please God, let the plane crash” on a business trip in China type depressed. I now realise that this was most likely due to the undiagnosed sleep apnea. Back then I thought it was psychological. The many psychologists, psychiatrists, counsellors and doctors I have seen over the years didn’t pick it up either. Even in the medical profession, the symptoms of sleep apnea aren’t well recognised so it took 10 long, exhausting years to get a diagnosis.

I’ve spent the last 3 years studying music full-time at TAFE, which has been both wonderful, but also challenging due to my ongoing fatigue. It was only near the end of the course that the sleep apnea was diagnosed and I got an extension to give me more time to deal with it. The teachers were truly wonderful to me. One of them commented one day after I had done well in the recording studio: “You weren’t nurtured”, and I knew he wasn’t just talking musically. That’s still painful for me.

I have applied to study a Bachelor of Music at Sydney Conservatorium next year, but I wasn’t accepted. That actually hurt more than I’m willing to admit. My second choice is a Bachelor of Arts majoring in Music, which should still be good but I realised yesterday while enrolling that it doesn’t allow me to do all the subjects I really want to. I feel like a scared and excited kid leaving high school. No wonder it hurts so much when my mother sticks the knife in by saying “Grow up!” when I’m upset. There’s an element of truth in it.

Much of our psychological growth happens in the state of deep sleep each night and I’m chronically sleep deprived. Growing up has literally been hard for me. Plus my parents were really shitty role models with terrible communication skills that terrified the crap out of me a lot of the time. How was I supposed to grow up with that sort of bullshit going on around me? I’m still angry with them despite years of forgiveness meditations because we’ve never really been able to talk about it; mum just goes off the deep end every time.

I want to call my mother to talk over what happened between us on Christmas day, because I know that’s the adult thing to do and I’m sick of acting like a child around her just because she frightens me so much. Yet I know the conversation is unlikely to go well. I’ll probably end up angry and have another shitty night’s sleep. The best I’ll be able to say is that I feel proud of myself for standing up to her when she goes on the attack, and that it gets a little easier each time I attempt to slay the dragon. It’s not like I’m going to get the warm, appreciative response that I would like for the fact that I’m willing to put myself through some discomfort in order to try and resolve a conflict with someone important to me.

If I was physically well, my father wasn’t dying and I had a successful career, I’d move to the USA and have a go at living the dream in the land of opportunity. I had panic attacks last time I traveled overseas but then maybe that was the sleep apnea making me hypervigilant. The land of the free may not live up to my rose-colored expectations and I’m sure it would have its own challenges, but at least I’d feel like I was pursuing my dream. I don’t think I could afford the US healthcare system though and while the treatment I need isn’t widely available, it is available here in Sydney where I live. I’ve even found a competent, world-leading orthodontist and ENT surgeon locally who can do it. I’d love to just skip the country, cut all contact with my mother and leave everyone in my dust, but I’m pretty much stuck here until I can have the surgery and then another year while I recover.

In the meantime I’ll keep working at launching my new career locally, which might actually be possible next year when I’m not too exhausted to go out in the evenings when my gigs are likely to be or so depressed that I just don’t give a shit about performing.

I have a headache now. That’s pretty normal for me, but it’s a little stronger than usual. It’s been quite cathartic writing this and getting it out of my system. Thanks for listening/reading.

Update: My dad died of cancer two months later, the day before I started University and a couple of weeks before the COVID-19 pandemic forced everyone in Sydney into lockdown.