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It hurts to see her like this

As a mother, to watch your child go through such a trauma and seeing her not want to live is HARD. I cannot imagine life without her. But I also have to be prepared for life without her .. Just in case I cannot change her mind. Despite the fact that I don’t believe it, I have to tell myself that I am doing my best and that is all I can do. She has depression and BPD.

It feels like it has been such a long road … despite the years that have passed since I learnt about her condition, some days it feels like yesterday when I first saw her with the fresh cuts and then at other times, I feel like that visual is buried deep in my brain. But despite the passing of time, the hurt of witnessing your child’s evidence of self harm, suffer an eating disorder, cut off all her friendship groups and leave secondary school unable to complete it – is very very painful.

My wishes upon death

My dear daughters

As the world seems obsessed with the Covid19 Death rates and FEAR has settled upon mankind let me now discuss this ever sensitive topic that so many people seem to feel that nations need to go into a huge debt for. I hope for both your sakes that it will not be a lifelong burden. But I guess the whole world may never be the same after 2020.

When I was 5 years old, I remember crying in bed. Mum peered up from her bed across the room – she was either reading or watching TV at that time of the night, and asked why I was sobbing. I replied that I was going to miss her when she passed on. She was rather taken aback, and said that she was only 31 and hoped to live a little longer. After which she told me to go back to sleep… and from that day on wards I knew that I was someone who needed to prepare ahead of time – to say goodbye, that is.

Planning for me just meant that certain things that are inevitable can be faced calmly. And Death is definitely on the list. Perhaps mum’s saying of “The one thing that you can be SURE of when you are born is that one day you will die”. So on THAT note – to save you both from worrying too much what my preferences are let me start now with some suggestions.

BURIAL OR CREMATION ? At this stage, I am still undecided as to whether I would like to be buried or cremated. I like the idea of being scattered but I also like the idea of a site to you to come and visit me. I am sure you know that I believe in travelling souls after my passing – so just give me the heads up when you intend to visit the grave and I will be present with you. Your father has indicated that he would like to be buried near Grandma and Grandpa, so that works for me too. The grave site near the Mornington beach, has its attractions and I love the beach myself so don’t over think this one. Happy to be buried at the Mornington site.

CHURCH OR HILL TOP ? In terms of the service venue, it sounds a bit of an ask but a service on a high spot such as a hill top on a nice sunny day … I am not sure if there are any restrictions about whether a church service needs to be held technically “at church” … I know dad has said that after the service, you can push my coffin off the cliff / hill top and set it alight at the same time for a more dramatic effect. I worry more how we will get the coffin up the hill top in the first place. So you now know my first preference for a venue. Good luck.

But if you had to choose a church, a nice cosy one would or our home based St. Dominic’s could pass.. as long as the Pastor giving the service speaks clearly in English and is engaging. Give me one of the boring ones and I will haunt you afterwards! I dislike speakers who drone on.

MASS OR SOUL RELEASING SERVICE ? As to the type of service, I am going to find this hard as I am Christian “and more”. So spirituality, tends to be a bit boundary-less for me. How do I encompass everything about our existence and The Universe at my passing, a bit of everything that make up my beliefs? I would like – a passage from the Bible, Psalm 23, is I know is predictable but has very solid words. I have recited those words many a time when I needed reassurance. I will mark some of my other favorite passages in the King James Bible located in the study bookcase. [On a side note – please do not give that copy of King James away, as that was given to me by my father and it is special]. I would also like a short recital of a Buddhist chant. You may select from one the two chants that I have learnt [and painted] – “Om mani padme hum” or “Nam myoho renge kyo”. As to the rest of the ceremony – I leave it up to both of you to fill in the gaps. My only advice is – if you get stuck, just go with your heart and choose the one that makes you happy.

BOOKLET LAYOUT – Please also feel free to select any of my art pieces for the front cover of the booklet. I assume you WILL have a physical booklet right? Please don’t do the “e-thing” on me. Paper and nice smooth creamy rustic paper will be fine. Around the 100 gsm mark please. As to printing dates, I am not fussed – disclosure is not an issue as you both know.

On to the topic of MUSIC and PHOTOS. This one will be interesting – Classical and Soul-like during and upbeat at the end as you are walking out ? My favourite classics from “Pride and Prejudice” (Dario Marianelli and Jean-Yves Thibaudet); Dionne Warwick’s Say a Little Prayer for you; and a MUST is Israel Kaʻanoʻi Kamakawiwoʻole’s version of Somewhere Over the Rainbow medley; … and whatever takes your fancy. There are a heap of photos stored in the server – so do your best to siphon through them all. My favourite ones have always been with the ones taken with the two of you on Mother’s Day on the years where we have managed to take a photo without protest from either of you.

Life is to be celebrated and I will say that I have been blessed – with both of you and dad. Overall, it is and will be a good life. So I would like a “happy funeral” despite the circumstances of death. Do not fear, as “you” will live on and the love that we have given and shown to others will live on – both as part of our energy and in their hearts. We will always be connected, as mother and child – and I will be by your side if you ever need me. Live life to the fullest each day and give love unconditionally with compassion as best as you can.

I love you both. x

A Carer’s Nightmare

So I am sitting here – 3 weeks sick – with an eye infection and sore throat in the middle of winter. “It’s Viral” so the doctor said last week – and has advised me to sit tight and let the virus runs its course. I messaged my husband the other day and said “I am so tired .. i just don’t have the energy to get up most mornings. Not sure why”. He wrote back to me “You are sick (ie. my germs). You have a depressed daughter. You are going through menopause. OF COURSE you are tired”. OMG why didn’t I think of THAT myself?

I think the ultimate nightmare for a Carer is when you get to the stage where you say to yourself – “I DON’T CARE ANYMORE”. And those words will be said many times over as the journey with BPD rides up and down.

I DON’T CARE – Those words sound SO bad don’t they? Makes you feel like a shitty mum who has given up. A point where you are want to look her in the eye and say – Please STOP. Please STOP with all the shit.. the hurtful words, the sarcasm, the oh i am sick so i cannot make my days work, oh look at these stories of others like me who never get better and all the negativity. Please STOP making the rest of us hurt and tip toe around you.

Baby, I love you but you seriously need to pick yourself up and do something about it. If you say that you want to try going back on medication (this will be the forth time) then we need to see a psychiatrist (this will the fifth one). How about the DBT course that is meant to be a useful tool ? Can you start that at least? Can you at least try to go for your driver’s license so that you can be a little bit more independent? WHAT? YOU want to drive into a tree? Do you understand the severity of the stress all this causing? There are SO many things I want to say but alas dare not – because BPD people are hypersensitive and need to be coaxed ..

How long is this going to go on for and when will I get to the PEACEFUL stage in MY life? How many days can I go on Carers Leave for? And please tell me to whom do I apply to?

I googled for local support groups hoping to maybe find one I can attend – to vent, to see if other parents are going mental like I am, to maybe get some strategies and ideas … perhaps hear some success stories. THIS is what I found on a state website as part of some tips for Carers ..

“Eat Well and Exercise” .. Sure no problems. Plenty of time to do all that! Being a bit cynical here but yes i get the point ..
“Get a good night’s sleep. Don’t drink coffee or tea in the evening and explore ways to wind down before bed. Meditation, listening to music or reading can help if you have difficulty falling asleep.” .. ah I have been getting this wrong – I have restless sleep and only getting 4 – 5 hours generally. Must change that habit.
“Don’t throw out leftovers – store them appropriately refrigerated or frozen for a quick meal the next day” .. wow who would have thought of that? That’s a ripper of a tip.

I know I am being a bit of a obnoxious here – perhaps some people genuinely need those tips – but where does the internet keep the good stuff?

AND then I remember – the good stuff is in me .. Unconditional Love. Resilience. Forgiveness. Faith and Hope. She is my baby – was then, is now and always will be. So I guess there is no other allotted Carer, BUT ME …

But for now – I am allowed to be a bitch and grumpy because I am sick ..

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3 months later

Week1-19 – The universe must have heard my calling because I have been in contact with “Family Connections” and since joined a Support Group and there are about 16 of us in the group. It has been difficult to listen to the stories of the other members about their life experiences handling a person with BPD. In the group, there are members with husband, wife, son and daughters (similar age to mine as well as older) whom they are dealing with.

The core features of borderline personality disorder include emotion dysregulation, impulsivity, and interpersonal dysfunction.

According to the DSM-5, borderline personality disorder is characterized by:

Pervasive instability of social relationships, elf-image, and emotions; marked impulsivity beginning in early adulthood and present in at least five of the following contexts:

• Frantic efforts to avoid real or imagined abandonment, reflecting intolerance to be alone

• Unstable and intense relationships marked by abrupt and extreme shifts between idealization and devaluation

* Identity disturbance, seen in an unstable self-image or sense of self

• Impulsivity that is potentially self-damaging in at least two of the following areas—spending, sex, substance abuse, reckless driving, binge eating

• Recurrent suicidal gestures or threats, or self-mutilation

• Marked mood reactivity

• Chronic feelings of emptiness

• Frequent displays of inappropriate or intense anger

• Stress-related paranoid ideation or severe dissociative symptoms.

Why are there cuts on your arm?

SO .. I comprehend the “science” of CUTTING .. the fact that endorphins emerge; the distraction of Physical Pain away from Mental Pain; the silent emotional cry that says “I am out of control and I need help” and even the stupidity of the act when used frivolously [when Zayn left One Direction, some girls posted on the site “CUT” to show how sad you are that he is leaving the band].

I also know that if you are serious, you go lenghtways to hit a major artery. Smaller cuts across also hurt – depending on how deep and how often you retrace your lines. And the Scars do linger .. one, two, more years or even permanently depending on what you choose to inflict at the time of pain to yourself.

These lines are yours to keep and yours to heal. Just like wrinkles and frown lines, they tell a story.

My daughter was no different – she cut as a way of releasing. [As did her sister and I when we went thorough our own dark times]. And she did this, cutting, for I would say – a period over 2 years … and I also found 4 coin sized burn marks once. God knows if she use a candle or a lighter but that would have been painful. Last year after one month’s admission to hospital, she did two deep cuts up the length of her arm – when I saw that I nearly called the CAT team. But we watched her closely for a few months and she has since not repeated that type of cut line.

She went to the supermarket with her dad two years ago. My neighbour, a solidly built tall man, from across the road happened to be there as well. She was wearing a T-Shirt that day and therefore her lines were visible. Healing, but still a tad raw; red lines with intermittent scabs. My neighbour spotted them and said, “What are those?” looking down at her left arm intently. She said nothing and walked away. Then he bumped into her again a few aisles later. This time my husband was also with her and my neighbour made another remark, “OH I see we have a cutter” … I am not sure what my husband said but they managed to evade the full story and interrogation.

She came home upset and she asked what gave my neighbour the right to ask such personal questions. I just soothed her and said people are just curious … and yes as an adult he should know better and have better manners – but, it is what it is. That was the end of that conversation at that point.

A year later we were together on a trip, discussing that fact that she might meet new people while we were away. So she asked, “What do I say if they ask me about my cuts?” Ahhhhhh .. the sensitive topic has arisen again. Well, I wanted her to THINK about what she had done and how she would have to deal with her depression / BPD pain as she grew up. Her posts about her depression on FB would also be a mark (unless she removed them) – has she thought about that yet?

How much do you want people to know? Do you want to be flippant? Do you want to tell your story? If so how much do you say? Do you say “No of your business”? Do you want to say “What does it look like moron”? What if they are genuinely concerned and they care? What if you are looking for a job and your potential employer asks you? …

She thought about it for sometime and decided that she would be happy with a medium level type response – not too dismissive not, too detailed, A One Size Fits All response. This was what she felt comfortable saying :-

“Sometimes in life you go through shit and it hurts. I have people who are helping me at the moment. Thank you for asking”.

Good girl. Nice one – I like.

Well .. I can’t see my tiny cuts anymore. Maybe that is because I am concentrating on my wrinkles and frown lines more .. and ensuring that she has no new cuts on her arm.

The cuts don’t define her or any of us. They are just markings we made on the trees we passed along the way as we journeyed out of the dark forest. Namaste.

Justifying Mid-Life

Mid-Life … whenever THAT is – theoretically is half your lifespan. But with our ever changing lifespan length, who knows when it will be. Thanks to the wonderful world of medical developments, we are generally lasting longer. It is quite amazing that we spend 95% of our health insurance’s pool to care for citizens in their last 5 years of life.

Well mid-life or not … I hope I am at least in the ball park. It gives me the right to not associate with people I don’t like; spend my money without having to answer to anyone; have no airs about who I am and what I feel comfortable speaking out about. Yes you can do all that listed and more and still not be at mid-life. But at mid-life, it feels different. It is like the cage door has opened and you are truly walking on uninhibited grasslands. You have EARNED your right after being responsible for so long. The Dutiful Daughter, the semi-scholastic Student; the semi-scholastic tertiary Graduate; the supportive Wife; the nurturing Mother; and the industrious Business Owner… It is and has been exhausting. No wonder when you get to the Peak and you look down at the past on one side and the pending future on the other side – you can REALLY see the view. Continue your life “AS IS” and the same grass will grow or mow the other side down and re-grow new grass. This is a main marker point in life where you get a chance you to make changes in life for yourself selfishly.

I embarked in this Entitlement stage of mid-life when her illness showed up.

In an instant I could go no where. I did not even feel entitled to anything. I felt so bad that my child was hurting so much and she was in places so dark that it took me 7 hours to reach her at times. I did not know where her self hate came from, why she felt her friends had abandoned her, why she hated her beautiful body, why she blamed me for bringing her into this world when I “was incapable of caring for her”. Most of all – everything I had so called achieved in life felt like a failure because this one thing I had to nurture and protect had failed to see a reason to live .. I HAD FAILED and I was at the half way mark. Everything I had accomplished to this point seemed to have no value just because this one person. Why had I not seen it earlier and what could I have done to prevent it? What sort of mother was I? Had we as parents been too lenient? Too harsh? Not strict enough? Why did I not understand her hints at needing help and mis-interprete her as a normal child with enough resilience to push through? What the fck did I/we do wrong that I/we could even get to mid-life and think we had it all in place? I had to face my own depression for a certain period and I did my best to manage without imposing on the family (I am ok now) but did that have such a bad effect on her?

As a mother, you are as happy as your saddest child. It’s a hard concept to accept especially when you have spent so many years learning not to let others invalidate you and your self-worth. Are your own kids the exception then? And when that is not the case, is that when you are forced as a parent to kick your child out of the house because they are causing too much grief and disruption to the family dynamics?

It has been a few years now and she is slowly getting better. She does not visit the darkness as much. And she is less at war with herself. But until she is well or is as well as can be, walking down the other side of the hill without her will feel very empty.

So I guess I am not saying that she validates my happiness and but I will have to wait until she is ready and safe .. and then I will happily roll down the other side of the Mid-Life hill with grass stains and all.

Breathing back to Basics

I get so stressed sometimes I forget to breathe …

We have forgotten how to breathe – the proper way that is. Deep breaths with intention and power that actually allows oxygen into our lungs. The breaths that we use to take as babies and when we sat outside on the grass in the sunshine as a child. It takes a lot of practice to get it right. Apparently it starts – nose in, go all the way down to your belly (you should be able to feel the belly muscle expand) and then back out. And this Tai Chi teacher I met last year said she even mastered the ability to harness the energy of her breath back out through her spinal cord to complete the cycle.

Recently I worked out that I have forgotten how to breathe. With all my daily stressors, from work and home, – I take shallow breaths. At times I will suddenly click that I have even stopped “breathing”. Not like I would be gasping for air like a fish out of water – but it was noticeable that I had just taken small shallow breaths for a period of time. And how long was that period? I cannot even say.

Shallow breaths start at the nose and end at the chest. One third the journey that a proper breath should be making. In that, the body does not get its full intake of oxygen and the blood stream.

DEEP BREATHS = 1. Better detoxification process for body; body is more efficient at releasing toxins. When you inhale and exhale deeply, the body releases carbon dioxide, and along with it many toxins. 2. It reminds the body that it is NOT in a stressed environment.

BUT more to breathing – it would help her – I wish she would let me (or anyone else) teach her HOW to use Breathing as a technique to help her when she gets her panic/anxiety attacks.

When it got bad and she had panic attacks, she would be in a crouching position, frozen, and not be able to move. On the grass, in the middle of the school oval, anywhere, until we picked her up and helped her walk back to the car. If we were out shopping, she would literally need to go home immediately .. She sometimes refers to it as “Mr Anxiety” – an endearing term to de-personalize the experience.

Now that she is in a slightly better space, she verbally lets me know she is experiencing an attack, gets fidgety and sets about to either annoy me with gentle whacks and/or pokes my arms or my face. Whilst I am irritated that I get used as her “slapping board” I guess she is at least .. letting it out. I know Deep Breathing will not resolve her issues but it is a Tool – one that I am sure the DBT course teaches people with BPD. But alas she is stubborn and will not undertake any treatment at the moment.

The ART OF BREATHING is something we have forgotten – as well as the art of laying still like vegetables .. Be a Broccoli for a day and take deep breaths.

The Healing Code Breathing

Breathing with CHI

When Cheryl Died

Cheryl found out she has cancer, leukemia, in the latter part of the 2017. It could have been triggered by the mold that was growing in the school building that she worked in. The smell that she hated so much in the building that she worked in daily made her feel so sick. She started to notice the smell around March 2017. She went to perform an allergy test and she was diagnosed as being heavily allergic to mold … so it made sense that she applied to be transferred to another building. But all blood tests showed up normal at that point in time ..

[Mold Blurb ref: https://www.poison.org/articles/2011-oct/mold-101-effects-on-human-health%5D

She went on a holiday to Vietnam around June of that year and felt the heat of the days while she was there for a few weeks. When she returned she felt exhausted all the time. It was unknown if being in a hot country, did the heat of the days trigger anything in to change in her body after being exposed to mold.

So despite having a clean record in March, she decided to re-visit the GP in August. When she said “I am so tired I could just lie on your floor” to the GP, he immediately ordered another set of blood tests for her. Turned out she had blood cancer – the marrow was just producing rouge cells. Chemo therapy was the treatment prescribed and she had two rounds by the time early 2018 came.

Cheryl was a mum I knew from school days and whilst we were not close friends, we had a common friend whom we were both close to and that was our main link. We would have Friday night drinks at our friend’s house and laugh away the “shits” of the week that had passed.

But in terms of Cheryl as a person, I always loved her smile – she reminded me of Moon Face in Faraway Tree; A sun flower beaming and she had the Tinkle Bell laughter special. And she was a popular woman with no airs about her.

After two chemos and one attempted stem cell replacement [that did not work], her body gave up – she said she just did not have the energy to carry on despite all the rallying of her friends and family. She passed away in the second month of 2018. We buried her in her home town and its been a full year since I said goodbye.

Here’s the thing – when she passed away, I knew our common friend would miss her deeply. For me, less .. I knew that I would be reminded occasionally of her as I came across things that related to her. But at THAT point I really thought about “WHO in my life I would REALLY miss if they were no longer physically present”. And it hit me – my parents, my husband and my two daughters. Yes I have girlfriends whom I am close/very close to BUT the people whom I would really feel a hole in my life for if they were gone, I counted on one hand. FIVE.

So I now try to visit my parents as often as possible who knows how long they have left .. I realized that despite the fact that my daughter is still recovering from depression/BPD and finding her way – I still NEED to also be with others who will leave a hole in my life. I need to ensure that I don’t forget that others who need me too.

And I need them for my sanity – so that I may continue to experience the balance of a normal relationships.

Cheryl had about 6 months from the time she found out to the time she passed. Her kids are not dissimilar in age to mine but they will travel a different journey without a mum to watch them complete their adult hood. I am humbled to be given a chance to see my kids grow up. And even though we/she have/has mental issues we have a chance to share the ups and downs .. preferably less downs moving forward .. please ..\

At her funeral, I learnt that Cheryl often wrote “Be Jolly” on the greeting cards that she sent – such an odd old-fashioned expression I thought at that time. It seems so under utilized as an expression nowadays. But as the days have passed, I understand that was how she lived her life – she was sunshine and she was “happy” infectious. It also represents looking at the world from lighter side no matter how hard things get.

So my dear Cheryl –

Each day I am reminded from you, that DESPITE ALL THE DARK DAYS AND CHALLENGES that I face, I am still alive to watch both my girls grow up; that I have the opportunity to make time to spend with my parents before they pass on and to cherish some more years of companionship with my husband. And that I can still choose to be jolly ..

The Be-Gratitudes

I am grateful for everyday that she is lives another day and is here with me and the family.

I am grateful for my husband [who had little clue about mental illness an its repercussions] who is a rock to me and. . my dog who is a Constant and brings so much puppy love.

I am grateful for each day when I wake up – remembering that Cheryl passed away from leukemia in March last year and will not get to see her children grow up or finish living her life.

I am grateful for my eldest – who battled her own darkness too – but is safely at studying and working now.

I am grateful for the psychologist who helped me with some strategies when it was so out of me depth and who told me to just hold and sit tight when she raged – for all my daughter wanted to do was to lash out and know that I would stick around and contain it for her.

Lastly I am grateful for my ten fingers and toes and our home – because after dealing daily with her illness; I really go back to basics and are grateful for things that I have overlooked and really taken for granted.

GRATITUDE : I have never been the type of person who would be the ungrateful kind. But as the years passed, with the full onslaught of life’s demands and acquisitions, I forgot to go back to basics. Her illness brought that aspect back into my life – along with the Nexflix boys, The Minimalists. Less is the new “More” I say …

As a mother who comes from a traditional culture of “Education being a critical passport”; doing well academically; and striving for a career to be a professional with a good title, explaining to the family members that she simply IS NOT WELL enough to finish school was painful. My husband and I were NOT embarrassed – after all, it is what is, but we had to change OUR own mindset that she has a different path as well as those who were close around us. Maybe not being able to finish school was okay as she could always take sub -courses to build her career. This wish of mine is a long way away so I cannot even plan for that now.

But on the mornings after I have been though a sleepless night and wake up with waves of anxiousness as to whether I can have a good day, I open my day with my Be-Gratitudes and it settles me. Namaste ..

We don’t communicate like we use to

Let me put it out there, I am not a lover of technology. By that I am referring to the new world of super computers, mobile phones, e-games, the endless pool of movies on demand. I KNOW technology has been helpful in many ways in advancing us BUT I think it has now tipped over to a “overuse” and addition status. We don’t call people, our friends to talk anymore, instead we message.

I always knew she was shy. But she would come home and share her day with me. I knew she had friends and she was not being bullied. She seemed fine. But she was bottling up all her fears and anxieties. As a working mum, I did not realise the extent of time she was spending on gaming after school. My husband is a believer that this generation of kids – the first generation growing up surrounded by lots of technology – should learn to self-regulate from young. This is a fundamental difference between us – I DON’T think at a young age (up to late teens) the child can self – regulate. Everything of entertainment purpose in technology is designed to keep the audience coming back for more.

The problem is if you are shy and a keeper of your feelings, having the use of a mobile phone, you have a barrier and you don’t get as many chances to develop the skills to express yourself verbally. Also you will internalize a lot of emotions and thoughts. Any e-message received that you have doubts over you ruminate whether the tone was cutting or dismissive – words that can be read over and over again in case you missed the point.

The problem is if you are shy and a keeper of your feelings, having the use of e-games means you can lose yourself in another world with anonymous players. Whilst you are communicating with the other players, this is a very aggressive form of interaction. The spoken and the typed words do not in any way resemble pleasant. The imagery of “The League” and other e-games embeds itself even at 1-2 hours per day worth of entertainment.

The problem is if you are shy and a keeper of your feelings, when it all gets too much – you lose the connection to a lifeline of talking and expressing your inner concern. It is much easier to play with your two friends – the phone and the game.

And .. we are the first generation of parents to see our kids grow up with all these new forms of entertainment. So different to what we grew up with. Whilst I understand every generation has been different is lifestyle, this generation has had more changes in many aspects – easy access to information just by Googling, more things to worry about as there are myriads of make up videos, a bazillion fashion items to shop from ..

I tell her to stay true to herself. To express her thoughts when she is bursting from anger, confusion, self hate – rather than cut herself. I remind her she is an empath like me and she needs to understand that tears are normal and that we get joy from doing acts of kindness. I tell her that Yes, I would miss her if she chooses not to live and I respect that the choice to live has to be hers, but I hope she will stay so she can take me shopping when I am old.

The problem is if you are shy and a keeper of your feelings, and you have a family history of depression but you are also on the BPD spectrum, the new world of technology can be a trigger. Well .. THAT is my take anyway.

I am glad that she can now message me “I am not feeling good” and I can call her to ask if she wants me to come home and take her for a drive ..