It’s been a while. And there’s a reason for that. Not the usual writer’s block but rather simply not knowing how to “do it” anymore. I’m talking about writing the post. Stick with me and I’m going to try to “do it”. I’ll explain as we go along. There won’t be anything fancy, just text, because I simply don’t know how to do that stuff anymore. It seems to have gone from my brain and I’m back to being a beginner again. I can hardly find my way around a keyboard anymore.
A few weeks back, a friend asked me how I was. That’s always a hard question. Do they want to know the truth? Can they handle the truth? Can I handle telling them the truth? Or are they just being polite? For a multitude of reasons, those questions included, and a number of others, I told her was…
On 4 November (today, on NZ time) bloggers from around the world come together with one purpose. That is to call for peace.
Usually, I would write a post along the lines of where I am at in terms of my desire for peace, both in my own life and worldwide. Unfortunately, at the moment I am struggling with my eyesight, thanks to Thyroid Eye Disease, and this makes writing and screen-time difficult and uncomfortable.
So I leave you with the words above. Who can beat the wise words of the Dalai Lama? They are certainly something to think about as we hope for peace and compassion in our world.
Thanks so much to my friend Michelle Frost, of the blog Crow’s Nest who generously put together the image in this post. She really did save me in spite of her own busy-ness preparing for today. I hope you take the time to pop over to her blog to read her post for today.
I haven’t been blogging much lately. It’s not because I haven’t wanted to. I have. And generally, I still have a lot to say.
But my brain isn’t functioning too well, and it gets in the way of getting the thoughts (and feelings) from my brain onto my screen. I start plenty of posts but they simply don’t end up saying what I want. And so I don’t even start to write. It’s easier that way because as a writer, there isn’t much worse than not being able to get the words out. Don’t mistake this as writer’s block. It’s not.
The problem I have is called brain fog (aka cognitive dysfunction) and I currently have two chronic medical conditions which make this a daily reality. Then there are several medications I take which contribute to the severity of my brain fog. And let me just say for those who have never had it, that the term ‘brain fog’ drastically underestimates the issue.
It was only a few days ago that I tempted the derision of another by raising the issue with my doctor (again). My brain fog has been so bad lately that I feared some type of permanent brain injury had somehow taken place, or perhaps even early-onset Alzheimer’s Disease. (There’s enough Alzheimer’s Disease in my family to know that it could well be a reality for me some time ahead).
My doctor told me to take a multivitamin. There is a lot I could say about her response, but I won’t because well, this post isn’t about her.
Regular (yes, I realise there has to be something to read to become regular) readers will remember that my mother lives with Alzheimer’s Disease. You can read previous posts that address this aspect of her, and my life here and here, as a starter. What’s important to know is that World Alzheimer’s Day is important to me. It’s right up there as far as awareness days go. Not just because of my mother’s current fight, but also the past fights of an uncle and my maternal grandmother, and of course, that one day this may well be my fight too.
Mum has been living in a secure facility directed at dementia care for nine months now. In that time, I have witnessed her fight become more intense. I have watched as she now struggles to recognise anyone but me. Sometimes she knows I am her daughter, but other times she is adamant I’m not her daughter, and that instead, I am a long-standing friend. Then other times I’m not altogether sure just who she thinks I am, except it is clear that I am of meaning to her. Only a couple of times have I got the sense that she had no idea who I am. Yes, all of that leaves me sad. I am grieving for someone who stands in front of me.
All of that leaves me thinking about why I do what I do?
Why do I spend time with Mum most days, often while I am in a great deal of pain, and often when brain fog is leaving me struggling to even speak with her (and/or the staff)?. Why is it important to me to be there for her, regardless of what physical, emotional or mental toll that has on me? Or simply when I could be doing something else?
I am the only person in her life that she actually recognises now. I find this terribly hard. Each time I have the realisation that she doesn’t recognise someone, it hurts. Each time she tells me she doesn’t remember being married, or the man she was married to, it hurts. I find that one particularly painful, simply because she was married for 53 years (to my Dad) and her brain has shut out all those memories.
But I have a unique opportunity to attempt to keep those memories alive, whether that maybe in telling her about aspects of her life, or simply keeping the memories alive in me. I can do that for her. And I can be her voice in a world she finds increasingly bewildering.
Imagine if you knew only one person. That person would be so important to us, and we would probably rely on them a great deal. I would hate for my mother to not have that one person, and so I do what I do for her sake. For her sake, to have a person in her life.
Realistically though, I know there will come a time when she no longer recognises me, but I am determined to be there anyway. Determined to be that person for her, even if/when she isn’t aware.
The truth is though, that I do what I do for me too. A year or so ago I would have told you that I am there for Mum for the sake of my late father. Doing what I thought he would want. But I know now that I also do it for my sake.
I have never had a good relationship with Mum. Actually, we now have the best relationship we’ve ever had. This is my opportunity to have a relationship with my mother. It might not be the sort you would hope for, but we have a connection. It is unique, it is largely one-sided, but it is something I have never had.
I’m not making up for lost time, but rather simply having what I am fortunate enough to be given at this time. Perhaps neither of us were ready for a relationship before, but now we both benefit. It is for her sake, and for mine.
And with that note, I will take my multivitamin (because I’m just a little scared not to).
I’m sure I won’t be quite the last writer to respond to the Netflix series ’13 Reasons Why’. I know I’m late in the piece, but it took me a while to get through the series. And once I had? Well, I wish I had never gone there. I wish 13RW didn’t exist. And I wish the bullying, mental illness, self-harm and suicide didn’t exist either.
It’s so easy to forget the impression this bundle of heartbreak has. Even two days out from having finally finished watching it, and I’ve abbreviated not only from ’13 Reasons Why’ to ’13RV’ but the pain of watching those last episodes has started to ease. It’s not quite so raw as it was two days ago. “Life goes on“, or so they say. But it doesn’t always, does it?
So where am I coming from in choosing to write about 13RW? I’m not a teenager going through similar angst. I’m not a parent of teenagers watching their offspring going through this angst. Actually, I could have easily opted not to go anywhere near this series. I did because I was curious. I have friends who have tragically lost offspring to suicide. I have friends and family who have teenage offspring. I have (extended) family who are teenagers themselves. And I wondered. I wondered what the hype was about. I wondered about the series behind what others were writing about.
It took me a while to get through the series, not because of the distressing nature of some material in it, but because I found it dragged in the first half. It was like I was watching the old television series ‘Beverly Hills 90210′ with a lot of the gloss taken off. I struggled to get engaged in the series because teenage angst (as it seemed) just wasn’t something I was interested in.
But I kept going, and as the material became more distressing, I became more engaged. To the point where the last few episodes, which centred on rape and suicide, had me glued to my seat and becoming more and more distressed and well, traumatised. By the time the series was finished my mind was replaying scenes over and over. Scenes I could do without being repeated. Scenes that I wondered how teenagers would cope with when I was so badly affected.
Of course, it’s fair to say that the reasons I was so affected were such that teenagers might be unlikely to react the same way. Or perhaps they might react for different reasons. But still, it made me think about my teenaged nephews and niece. The teenagers I love and care about. How would they react to ’13RW’? Had they seen it by now? What was their response?
My niece is almost thirteen and has apparently expressed her wish to see ’13RW’. This was on my mind as I finished the series. I had a desperate wish to wind back the years so that she would be a young child again. I wished that she wouldn’t need to be exposed to the events in ’13RW’. Ever. I wish that I could wind back the years for my nephews too.
Then it occurred to me why I might want to do this. I was only a year older than my niece is now when I began to be exposed to some traumatising and distressing events in my life. Things that I didn’t have the knowledge or the maturity to handle. Things that I wasn’t able to talk about. That no one heard about.
At the time, I deemed it impossible to talk to my parents about. Actually, they would never hear of the distress I lived with then. They were simply left to wonder why my behaviours were as they were. Wonderings that were never answered for them, because I simply buried it all very deep down inside.
The trauma of those years actually lives with me still today. I resolved some of it in my years of therapy but my therapy was cut short and I never completed the journey.
Perhaps that’s why I fear for my niece and nephews in watching ’13RW’. Because I fear of their lives away from the television carrying such trauma. It’s why I want to roll back the years.
I know I can’t. I know that I can’t protect them from distress in the way that I wish I had been protected. Not only are they human beings who have to make their own way, but also they are not my children. I love them and I want to keep them safe from bullying, rape, self-harm, suicide and other issues of mental health. But I know I have little control over that.
What struck me in ’13RW’ was how little the parents knew of what was happening to their children/teens. That doesn’t seem that different from real life for so many. Certainly, for me, my parents didn’t know what was happening to me. If they had, I’m sure they would have at least, attempted to protect me. They simply couldn’t protect me from what they didn’t know of and what wasn’t happening under their roof.
While I thought that ’13RW’ dragged at the start, I was somewhat overcome by a tsunami of feelings by then end. It transported me back to my own teen years. Somewhere I usually try hard not to think about. Somewhere I wouldn’t wish on any young person that I love.
That’s where I’ve gone in watching this series. It’s where my mind has journeyed across the past few days. It hasn’t been pleasant, and actually, it’s not what I was expecting. I thought I could handle it. I’m a suicide attempt survivor and I thought that a fictionalised account of another suicide and other teenage trauma would not upset me. I was wrong.
” If you hear a song that makes you cry and you don’t want to cry anymore, you don’t
listen to that song anymore. But you can’t get away from yourself.
You can’t decide not to see yourself anymore.
You can’t decide to turn off the noise in your head.”
While I was driving home from visiting my mother this morning, I realised I was holding my breath. I think I had been doing so most of the morning, as I was terrified (yes, really terrified) that if I didn’t that ‘she’ was going to come out of my mouth.
‘She’ would come bursting forth from what is usually my nice, kind mouth with ‘her’ negativity and judgement. This fear has been building all week and was being triggered by the actions of a staff member at the Dementia Home where my mother lives. I am never impressed by this woman, in total contrast to my usual reaction and appreciative support of the rest of the staff. I don’t like many of the things she does and I don’t think she does her job well. That’s fine, but for some reason she triggers the ‘On-switch’, and I want to tear her to shreds. I think I even want her to lose her job (I am shocked by the strength of my feeling).
That’s right. I’m not always a nice person. Actually, I can be vile. I can be a total bitch. That part of me has been in existence for what seems like as long as I can remember, but actually, my memory of her just goes back to my teenage years when ‘she’ would come burst forth to spew her vileness particularly at my mother.
The explanation of ‘her’ is that I have Borderline Personality Disorder (BPD). I hasten to say that perhaps not every sufferer of BPD has this fragmentation. I don’t know. What I do know is that I do, and every so often the nice, kind, even friendly Cate will transform into this nasty, cruel, bitchy ‘she’ who I recognise well, but cringe when I realise ‘she’ has revealed herself. I don’t like ‘her’. That is an understatement. I just wish I could ‘turn her off’ when I realise ‘she’ has taken over, but most times, I don’t realise ‘she’ is in charge until the damage is done.
Read about BPD and you will quickly realise that some writers refer to us as “drama queens” (and kings, presumably). “attention seekers”, “bitches”, “monsters” even. I try to stay clear of such writers because while I don’t want to label other BPD sufferers, I know that for my own part, sometimes I am a “bitch” and sometimes I am even a “monster”. Yes, really. You might think you know me. You might think I am a nice person, but that is only one side of me. Thankfully it is the dominant side, but in the dark, lies the monster, and ‘she’s’ not at all nice.
Lately, I haven’t seen too much of ‘her’. While I admit my mother was on the receiving end of her for too many years (we didn’t ever have a good relationship anyway), ‘she’ isn’t there anymore. ‘She’ somehow disappeared from our relationship, and even though I don’t really understand the change, I am glad and relieved. My mother has enough to cope with in life, without a monster daughter. This was also the main relationship in which ‘she’ appeared so it was good to have ‘her’ gone.
There have been times lately when I have felt ‘her’ rising to the surface and about to take hold, but somehow I have been able to dissipate the rising pressure and somehow escape ‘her’ clutches. It is always a palpable relief when I can do this, but I never know exactly how it happens. I know that for me, being able to do this is a sign of mental wellbeing.
But then in the last couple of weeks ‘she’ has been back. I usually don’t realise ‘she’s’ back until it’s too late. Until ‘she’ has taken hold of me, and I am a monster. One side of me cringes as the other monster side delights in the ride. Yes, ‘she’ loves it when ‘she’ gets to be in the driver’s seat, while I just wish I wasn’t there. I quietly hope I’m not doing too much damage as my words spew forth, but ‘she’ doesn’t care.
Don’t get me wrong, I’m not talking about having multiple personalities, having Dissociative Identity Disorder (DID). This is different, and while I’m no psychologist to understand and explain the brain, I do understand that we all have different parts to ourselves. Maybe for most people, those parts are not the “monster” I see in myself. Maybe they’re not quite so marked.
Scary and a little weird, I actually find myself liking ‘her’ to some degree. I don’t like the hurt ‘she’ can cause, but I do like that ‘she’ just says whatever ‘she’ thinks. There is no holding back with ‘her’ and I like that ‘she’ isn’t constrained by… well, anything. I don’t like the damage, but just sometimes I admire ‘her’ for being free to say anything without fear of consequence. I am torn. I like this ‘me’ but I’m also terrified of ‘her’ because I know all too well the damage that ‘she’ can cause, and has caused.
Aside from hurting people that I actually care about, I have lost along the way. I have lost people. I have lost jobs. Yes, I have lost two jobs where I wasn’t able to reign ‘her’ in. I was, in those jobs, two people. One Cate was very good at ‘her’ job. Staff and clients thought I was excellent at what I did. I got high praise and was rewarded well. But in both situations ‘she’ rose to the surface in my working relationship with a boss. At the time, I had no understanding of BPD and was totally lost. I didn’t understand why this was happening. All I knew was this “monster” would rise to the surface and I didn’t know how to stop ‘her’.
Recently, ‘she’ took over and destroyed what had been a nice dinner out with someone I care about. ‘She’ ambushed the evening while I wasn’t watching and I admit now that I am ashamed of the things I said and did. Once ‘she’ took over, I couldn’t stop ‘her’. I couldn’t take back the control, and part of that was because I kind of liked what she was doing and saying. That is what I am ashamed of most. What sort of monster am I, that I would cause pain and like it?
‘She’ keeps bubbling toward the surface and I find myself holding my breath, terrified that ‘she’ will take over again and that I will lose more relationships. I am inclined to shut myself away and hope ‘she’ is prevented from rising. If I don’t talk with people, then maybe ‘she won’t be able to rise.
This is a pretty negative post. I know that. I don’t expect many ‘likes’. I am ashamed to admit that I am a monster but I know that maybe by writing about that part of me then maybe I can take ‘her’ control away. Maybe by being open to the point of feeling quite uncomfortable with such disclosure, I might take her power away. Perhaps by bringing that monster in from the dark, to bring light onto how she is, I will find a way to take control again. I hope that it enables me to find that elusive ‘off switch’. That has to be a good thing.
One final note. I have called myself a monster and I have related that to my having BPD. But please know that I am not saying that all people with BPD are monsters. Not at all. I am using this word to describe something in myself that I strongly dislike. Something I find monstrous. I do not know enough about BPD and other sufferers to label them as such. I only know about my BPD. Actually, none of those I know who have BPD are people I would describe this way.
“Because humans are complicated beasts, the monster said. How can a queen be both a good witch and a bad witch? How can a prince be a murderer and a saviour? How can an apothecary be evil-tempered but right-thinking? How can a parson be wrong-thinking but good-hearted? How can invisible men make themselves more lonely by being seen?
“I don’t know,” Connor shrugged, exhausted. “Your stories never made any sense to me.”
The answer is that it does not matter what you think, the monster said, because your mind will contradict itself a hundred times each day. You wanted her to go at the same time you were desperate for me to save her. Your mind will believe comforting lies while also knowing the painful truths that make those lies necessary. And your mind will punish you for believing both.”
When “everything seemed so good”, the short story (in case you don’t have time to read the whole post) is that “everything wasn’t so good”. Believe it. Everything was not as good as it seemed. It is not as good as it seems.
There’s been a lot in the media about suicide lately, in New Zealand particularly. There have been the on-going discussions about the Netflix series ‘Thirteen Reasons Why‘ generated by the book of the same name by Jay Asher. I am only just starting to watch the series, so have no other comment to make.
In New Zealand too, there has been an on-going call for a review of the mental health system in our country, some of which has been generated as a response to statistics of suicide, and what seems an ineffective system that all too often ends in the death by suicide of people who don’t get adequate care. More people die by suicide in my country than die on our roads. This is not acceptable, although I would add that neither toll is acceptable to me.
Then this past week, perhaps New Zealand’s best-known advocate for suicide prevention, comedian Mike King, resigned from the government’s Suicide Prevention Guidelines Panel after a draft paper was released contain no specifics or targets to lower statistics. This post is not about Mike King’s resignation, and so I won’t get into it here. But it does seem significant to me, that there has been so a large outpouring of disappointment and anger directed towards those of the Ministry of Health who wrote and released the draft paper. Note however that the paper has been released for public discussion and comment so I would encourage readers who are concerned to make their views known to the Ministry of Health.
And then at the end of last week came news of the death by suicide of musician, Chris Cornell. I admit that I had not heard of him until last week, but now I find myself commenting on reaction to his death. That in itself is a little crazy but as we know, when celebrities die there is a great outpouring of reactions of all types. And when that death appears to be the result of suicide, the outpouring seems to be even greater. Suddenly everyone has an opinion (including me sometimes) and every opinion tends to hold too much in the way of assumptions.
As I said, I wasn’t familiar with Chris Cornell, and I admit I have quickly given up reading much of what has been published both by mainstream media and individuals on social media. That is because, most of it made me so angry. Most of it, missed the point for me.
Let’s take this statement:
“But, why, many are asking, would a man who was worshiped (sic) by his fans, had a beautiful family and successful career, take his own life?”
– Matt Agorist, The Free Thought Project.com
Are people that shallow? Do people actually believe that because someone’s life looks so good, that it must be that good? This is what makes me angry. Whether the subject is a celebrity or simply your next door neighbour, reality is never quite as good as it seems to outsiders. Never.
What I know of Chris Cornell is that he was a successful musician, a family man, a middle-aged man, but also a recovering addict and someone taking prescription medication for anxiety.
As an addict myself, let me assure you that addicts are not addicts for the sheer pleasure of it. In very simplistic terms, we are addicts because we wanted reality to be better than it was, you see to addicts it wasn’t as good as it seemed. And being an addict is not as good as it might seem to those outside their world.
The need to take prescription medication for any mental health issue also spells out to me that everything is not as good as it might seem. We don’t take those pills for the buzz! But then, maybe if you’re looking in from the outside, that might be how it seems.
I also know that middle-aged men are taking their own lives too often. The statistics are pretty well published and that suggests to me that their lives are not as good as they might seem to those of us on the outside.
I find it really sad that society generally sees only what it wants to see. When someone dies by suicide, society sees nothing of what was that person’s reality. This must make it incredibly hard on family and friends to grieve when society refuses to see what was real.
It must also make it very difficult for those who have suicidal thoughts, to get help from those around them. Because those around them refuse to accept that everything might not have been as good as it seemed.
This is not rocket-science, but I think that it can make all the difference in how we are there for those left behind, and those who still struggle. If we are to be of any help, we have to acknowledge that the view from the outside, is not the reality on the inside.
I’m the first to admit that my heart has been firmly closed off to all other heartbeats for a number of years now. There was no way I wanted to even know that another heartbeat existed.
There was the terribly hurtful, disastrous relationship from a few years ago. Most of that I never breathed a word of my pain to anyone (although if you can handle cryptic you could check out here and here). That’s about as forthcoming as I chose to be, for a whole host of reasons. But what I can say is that I firmly zipped up my heart and determined never, ever to let it free again.
And then about a year before was a grief of another kind when my dear cat, Penny (see here) got her angel wings and left this earth. She was sick and suffering, and as hard as it was to let go, I had to let her free. Penny and I had been together for twelve years. We had got each other through thick and thin, and to go through her final days and then to grieve when she was gone took a very big toll. I wondered whether I would ever be able to bear that burden of love for an animal again, knowing that at sometime heartbreak would come again.
As time has gone on I have struggled to think of allowing myself to love another animal. I had decided, and have no doubt that I won’t be loving another human in that intimate way again, but I tossed and turned about a pet, and each time deciding that I just couldn’t go there.
There were good excuses too. Money, earthquakes (yes, really!), housing, money again, and of course the fear of loving and then losing again. I came to the conclusion at one point that I would like to get a dog instead of a cat, and so then there were all sorts of excuses why that wasn’t going to happen either. Money, earthquakes, housing, even more money, would my health limit my ability to exercise a dog adequately, and the age-old fear of loving and losing. It was looking like it was never going to happen.
Until about three weeks ago, when for some reason I didn’t really understand I drove out to the local SPCA Animal Rescue Centre just to look at the cats. I wasn’t at all prepared to adopt a cat that day; I was “just looking”. I saw two cats that I was instantly attracted too. One of them was adopted by others later that day. I was certain the other would go within days.
And then I got sick (a long story not for this post) and I just assumed that ‘Zion’ as he was called, would be happily adopted and settling into his new home. I told myself I would have adopted ‘Zion’ if I hadn’t got sick, but now I (and he) would never know each other beyond that afternoon together on the floor of the SPCA.
But strangely ‘Zion’ waited. I finally got back to the SPCA Centre two weeks later and I was sure he would have gone. He was a two-year-old, healthy and friendly male and I couldn’t see any reason why he wouldn’t have been snapped up. But as the SPCA staff explained animals often choose their owners and perhaps ‘Zion’ hoped/knew I would come back. Either that or my guardian angel had kept him out of public view for two weeks.
‘Zion’ and I have been cohabiting for one week now and I think we are both happy with our new arrangement. After a long discussion (admittedly a little one-sided) he has changed his name to ‘Hobbes’ (after my favourite cartoon character) and he is settling down nicely. He’s fast asleep at my feet as I write.
What felt good was to having some ‘thing‘ else in the house with a beating heart. Something else, alive with likes and dislikes, good and bad habits, and of course a unique personality. I hadn’t banked on any of that. I had forgotten the joys of pets and to find another heartbeat near mine is a good thing.
It’s odd because when I think of another heartbeat, what comes to mind is that beating sound and sight of the ultrasound of a pregnant woman’s belly. I have never been a maternal person. I never wanted to have children (for lots of very good reasons mostly documented somewhere across the years within this blog), and actually, the thought of another heartbeat within my body actually freaked me out a bit.
As it is, I’ve got another heartbeat, not inside me, and not a human one thankfully, yet one who still takes up half of the bed. I am growing quickly to love him. He doesn’t yet understand when I am in pain and so don’t appreciate that some of his endeavours to express his affection, and I guess that is much like a young child. I do believe though, that in time he will come to understand my needs of him as much as I understand his needs of me.
We are a partnership. If my theory that he waited those two weeks for me is correct, I hope he will soon come to the conclusion that I was worth the wait. That will be something I can only guess at.
Maybe my desire to keep my heart safe isn’t altogether that healthy. I don’t know, but it’s necessary to keep my mental health intact for now. It’s taken me just over five years to get another pet, and I hope that has allowed me the time to find within myself what I need to be able to give to Hobbes. He deserves the best of me, and I hope he gets it.
Before I forget, meet Hobbes:
“Our perfect companions never have fewer than four feet.” — Colette
Rock-a-by baby On the tree top, When the wind blows The cradle will rock. When the bough breaks, The cradle will fall, And down will fall baby Cradle and all. – Mother Goose, c.1765
A nursery rhyme that has always struck me as (just a little) scary. Who puts a baby in a cradle, and then in a tree? What do you expect? The baby IS going to fall.
Right now (and actually for a long while previously), my life is dominated by minds that have perhaps been put in a metaphorical tree, the bough has broken and so has the mind.
Firstly, the onset and continuing existence of mental illness in my own life. Mental illness has been very obvious for around twenty years now, although thankfully (for now) it’s not quite the crisis that it has been previously. There’s always the possibility, though that the branch may break again. With the diagnoses and history I carry, I would be a fool to deny that possibility.
But now, I’m living the day-to-day reality of caring for my mother who has Alzheimer’s Disease. It is different from my own broken mind experience yet there are some very real similarities. Sadly, at this stage of medical knowledge, there is no light at the end of the tunnel with Alzheimer’s. Rather it is getting steadily worse and will continue to do so. People don’t survive Alzheimer’s. Not yet, anyway.
That breaking of minds is something I could write about endlessly. Both my own mind, and more recently my Mother’s. But it’s not where my thinking is today. Rather, I’m thinking about what is left when the mind has broken. That thinking comes from the image below, one I came across yesterday on a great Facebook page, Alzheimer’s Sucks – Memories for Joe Hennington. As an aside, I can tell you that Alzheimer’s does indeed suck, so that immediately tells me this page is a good one. It is worth a visit.
Image credit: Permission to reproduce obtained from FB: Alzheimer’s Sucks – Memories for Joe Hennington
Let me say from the outset, that it is not my intention to conclude whether or not the message contained in this image is correct. I don’t know the answer to that, and I wonder whether anyone really knows. I share it because it made me think, and so I want to discuss it. To hopefully at least start to sort out my own thinking, and maybe find a little of what others think.
This image stopped me in my tracks. “The heart holds what the mind can not“.
I had seen a similar statement before but perhaps because of where I am at with my mother’s Alzheimer’s journey, it really made me ask yesterday:
“When the mind breaks, does the heart step in and protect what really matters (what the mind held)?
Is what was loved, sustained?”
Yes, that is what I want to know. I know the easy way to look at this. I can tell myself, “yes, my mother still loves me now and will continue to do so when she no longer knows me“. That is, of course, what we all want to believe.
And what about with severe mental illness? When my mind was so terribly broken (in an admittedly different way) and I didn’t want to know my family, I suspect they might have wondered “did she still love us?” Clearly, there were times when my actions and words indicated otherwise.
I can remember my then-husband wondering “do you still love me?” Such a question came at a time when he was having to watch me continuously, primarily because the mental health services were simply not available and someone had to make sure that I stayed alive and ate something. I hated it (and I’m sure he did too). I reacted in such a way that he must really have wondered. It probably appeared that I hated him. Perhaps I did.
I don’t think I had the capability to love him (or anyone) at that time. My mind was very much broken and was fighting for survival in such a way that I wonder if love was even possible. If you could magically take away the mental illness then, of course, I would say then that I loved him. But magic isn’t real life, is it?
My mother’s Alzheimer’s Disease is different. She’s not having to fight me for her survival, in the way that I had fought my husband. There is also not some hope that we will get her back, as she was. The mother I knew, has largely faded. I don’t buy the train of thought that the person with dementia has already died and that we are simply left with her body. But that’s a whole other post so I won’t go there right now.
A few days ago Mum and I were in her room looking at something that she has always loved. I said something about it, and I saw her looking at it as if she had never seen it before. Then she looked to me and clearly wanted some explanation. It was an object rather than a person but I found it startling because it was an object she had loved. Only in the last few weeks, she had referred to it with affection, but now she had no connection to it.
And so I wonder, what about when it is a person. When it is me? When the time comes that she doesn’t recognise me, will her heart still hold what the mind has lost? Will she still love me?
I want to believe that she will, even though she won’t even be able to communicate it. Who wouldn’t want to believe this? But I suspect that it’s not quite that easy. Maybe that’s the glass half-full person I am. I don’t know.
Perhaps too, it comes from my own broken mind. I have struggled to believe my mother loved me for most of my life. We haven’t had an easy relationship. It’s difficult for me to believe that her love will be sustained when I’ve spent nearly fifty years doubting the existence of that love.
What matters is that I will keep being there for my mother, even if that love has gone. More so, perhaps I need to turn all of this around. What I need to know is that she will still know that I love her.
And in terms of my own broken mind journey, perhaps what really matters is whether I could still somehow comprehend love from my husband and my family. Actually, I’m pretty sure that I couldn’t and perhaps that was part of the problem. I’m really not convinced that my heart could hold what the mind had lost.
I suspect these are questions for which there will perhaps never be adequate answers (for me anyway). Something I perhaps have to accept as it is, without understanding.
What do you think? When the mind breaks, what happens to what the heart held? But please don’t tell me that of course, my mother loves me. If you do, I will know that you have missed my point.
“You’re so beautiful,” said Alice. “I’m afraid of looking at you and not knowing who you are.” “I think that even if you don’t know who I am someday, you’ll still know that I love you.” “What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?” “Then, I’ll tell you that I do, and you’ll believe me.”
I was sitting outside (okay, so I admit I was having a cigarette) when I saw one of my neighbours walking up the back path towards me.
I said: “Hi”
He said: “How are you?”
I said: “Good”
And that was it. I had lied through my teeth, but it was okay because he just kept on walking and then walked in his door, leaving me to contemplate what I had just done. The conversations (if you can call them that) I have with this neighbour never amount to much more. I have similar conversations with another neighbour. I lie to him too. But that’s how we talk to most neighbours, isn’t it?
This time I was struck with how easily the “good” rolled off my tongue when actually I was feeling anything but good. Would it matter if I said, “good” in answer to any such questions, for the rest of my days? Does anyone actually want anything beyond this lie?
It’s easy to say, and it’s easy to hear. I’m not requiring anything of you when I answer your question this way. You can just keep going about your day. Even for friends and family, it’s easier that way. No need for you to do or say anything. I’ve given you a ‘free pass’.
But I could get side-tracked by that as I write. It’s easier for me if I don’t tell you how I really am here, on my blog, either. Maybe it’s easier reading for you too. But I’m going to push myself to not opt for the easy. You see, I’m not good. Actually, I’m struggling.
I know you want to read positive stuff on a blog that refers so often to hope, but right now I’m struggling to find my hope.
My mood is dropping and I am fairly sure it has to do with the stress in my life right now. The more stress, and the more I struggle. My stress comes mostly from caring for my mother. She needs more from me now, but has less to give me in return. She mostly knows who I am. She certainly always still recognises me, but clearly has trouble connecting that recognition to the right person. Me. Sometimes she thinks I’m her sister and she used to mistake me for my father. That doesn’t happen so much now. She struggles to remember him at all (he died nearly six years ago). Nearly 54 years of marriage seemingly wiped from memory! This illness is so cruel.
It’s hard. I don’t have expectations of her, but it’s not easy day after day, teaching her the same things. Telling her stories of her life. It would be heartbreaking no matter who she was, but this is my mother. All the things she taught me as I child, I now teach her. And I feel very alone in this.
There’s more, though.
My eating is considerably off track, and to even admit that much takes an enormous amount of courage. Much more will require more than simply an empty screen before me. You’re just not going to get the details, this time anyway.
In the last year, I have lost 17 kilograms with no conscious effort. I know, lots of people would love that to happen, and true I love that I have lost it. I needed to, I was overweight (yes, people who have had Anorexia twice can be overweight!) but I hadn’t done anything to lose it. It has really gone through firstly ill health back at the middle of 2016, and the rest I guess, has been through stress.
The reason I’m telling you this though is that unless you have been where I’ve been you have no idea how tantalisingly dangerous it is. Seventeen unconscious kilos are tempting me to consciously step back onto the eating disorder ‘merry-go-round’ (don’t think for one moment though, that such a move would be the fun of the fair!).
I don’t make it a habit to weigh myself, mostly because of this reason. It’s too easy to get taken in by one kilo lost and before you know it I’ve been sucked into losing 20 or 50. I was weighed when I was admitted to hospital briefly back in July. I saw then that I had lost seven kilos. Then I was admitted to hospital briefly a few weeks ago for an minor procedure. The deadly mistake was looking down at the scales. And I choose to use the word ‘deadly’ because that’s exactly what it can be when you have an eating disorder.
So I admit it. I am back to considering every mouthful. And part of me hates being back there, but I admit, part of me loves it. That’s the ‘deadly’ part.
But then, there is more…
My black and white thinking is very definitely more black and less white.
There is no light at the end of the tunnel. Whoever said there was, was fooling me.
Everyone is against me. I struggle to think anything different. I can’t believe that anyone would be on my side.
I said a few weeks back that I would write about anxiety. Meanwhile,it’s just getting bigger and bigger. And yes, more consuming
Is the sun going to rise tomorrow? Right now, I just don’t know.
I’ve come to a new appreciation of people who choose to keep their curtains pulled shut through the day. Sometimes it’s a way to cut the world out. They can’t get me! I fool myself so easily!
I’m sorry if you came here for a post full of recovery and hope. I guess what I need to say to you is that recovery and hope is not a linear journey. Sometimes the dark overwhelms us. Sometimes people are throwing so many lemons at us, that it is almost impossible to make the damned lemonade. Sometimes all we can do is throw the lemons back. Let someone else make the lemonade, I’d rather have a coke.
This post is about a recent suicide that has reported and commented on in many different realms of social media.
There are no images in this post. There are no video images. And there are no links. This is done out of respect for the family and a desire to keep from encouraging the triggering nature of this disturbing and distressing story.
This morning I was waiting in a hospital waiting room. If you’re not too nervous about what you’re waiting for, waiting rooms are great places for surreptitious people-watching, and I did my fair share while I waited. What I immediately noticed was that every adult (except me who was busy watching) in the room had their eyes and fingers glued to their phone. What’s more, the organisation in whom whose waiting room we were sitting, was advertising on the wall, their ‘free wi-fi’ to waiting patients.
The internet is something that we watch from morning ’til night, and then into the night for many of us. We can’t put it down, and that’s exactly what the designers of social ap’s want. They want every adult in the room glued to their screens. They’d probably like children too, but in this waiting room, the only children were babies. This is what those babies have in store for them in the years ahead.
The internet and social media, in particular, is great. There’s no denying that. Until a 12-year-old girl films her suicide on a livestream, and no one stops her. No one gets to her in time. Then we let each other down, her most of all.
Many people have written about this since it happened, and maybe you’re sick of the subject. Maybe you think it’s time to let this 12-year-old rest in peace. And there’s no doubt in my mind, that she deserves some peace. It’s okay with me if you choose not to read this post as a result, but I simply have something that if I never put into words, I will never get peace.
We let each other down if we are glued to the internet but we don’t use it to save a 12-year old’s life.
It’s likely that most of us learned of this tragic and horrific event after the fact. I certainly did, and I immediately made a decision that I was not going to watch the tape of this girl’s death. It wasn’t going to serve any purpose in hindsight. I could do nothing. I also resolved not to read too many articles, posts and comments (that’s why I don’t mind if you don’t read mine). They would simply upset me further than I was already upset. Why? Because human beings can be cruel, and it’s in this instance that I believe we see the worst of it.
Perhaps what has upset me the most is the people who commented on the livestream at the time and egged the 12-year-old on. Suicide baiters. People who see a potential suicide and encourage the person to ‘jump’. In a ‘nice’ society it would be good to think that such people didn’t exist, but they do. And they did, in this case.
A friend of mine lost her son to suicide some years ago, when people watching him on the edge of a building shouted at him, encouraging him to jump. What’s more, several uniformed police were watching and did nothing. He did jump and he died. My friend has lost her son forever. The suicide baiters got what they wanted, although for the life of me I can’t imagine what it was that they wanted.
Whether we egg someone on or do nothing, we all carry that person’s life in our hands for the rest of our days. Even if we simply did nothing, I believe that we let this 12-year-old down and we let each other down as fellow human beings.
We have the ability through the internet to make sure that 12-year old human beings are safe. When they choose to record something like this and put it on some form of social media, we have the opportunity to keep them safe. When that doesn’t happen, I have to wonder whether it has lost its point.
Sure, social media is not simply about suicide prevention and keeping at-risk people safe. Sadly, it seems such stories simply become entertainment. But when we have that opportunity, surely we have to grab it with both hands.
Facebook is currently being criticised for refusing to take down posts which give a link to the livestream, and I think the criticism of the company is warranted. It serves no healthy purpose now other than as a statement of the day we as a human race let down this child with irreversible consequences. Now, it is voyeurism. And if anything, it eggs on other people at risk of suicide and self-harm.
Facebook say that the posts in question don’t violate their community standards. I am inclined to think that if their standards allow this to be posted, I’m not sure I want to be part of their community.
On a good note, apparently a few days ago, a man in Thailand tried to livestream his suicide attempt. A friend intervened and his life was saved. If only it had been this way for our 12-year-old.
It breaks my heart that young people are dealing with such heartache and trauma that they are considering, and acting, on suicide. I don’t have children, but I do have a 12-year-old niece and several nephews who have been 12 in recent years. I can’t bear the thought of them suffering to this degree, and reaching out without anyone reaching back with help.
Our twelve-year-olds deserve our protection. Whether we know them personally or not, they deserve at the very least that we don’t let them down.
At the point in which the 12-year-old posted this video, we as a society should have responded more than we did. Apparently, it is possible to hear friends and family calling out for her. But it wasn’t enough. They didn’t get to her in time. We human beings didn’t do enough.
And now that this 12-year-old has tragically died, the record of her suicide needs to be taken off social media out of respect for her and her family. Any viewing of her video now is outright voyeurism. It’s wrong, and it will only distress people who are probably already distressed or provide some sick sense of satisfaction to people who need their heads read (and I’m not talking about people who have valid mental illnesses). But we do have to ask as a society, what did we do wrong and how do we make sure this never happens again. We need to talk about this in all aspects of society.
We have to stop letting each other down. We have to keep our 12-year-old’s safe.
“there is a loneliness in this world so great that you can see it in the slow movement of the hands of a clock.
people so tired mutilated either by love or no love.
people just are not good to each other one on one.
the rich are not good to the rich the poor are not good to the poor.
we are afraid.
our educational system tells us that we can all be big-ass winners.
it hasn’t told us about the gutters or the suicides.
or the terror of one person aching in one place alone
Infinite Sadness... or hope? 