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.

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.

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 ..