A Strength She Never Knew

 

It has been a long time since I have posted. All though we have had many ups and downs,  overall no news is good news. My daughter has been relatively stable and apart from dealing with some horrific trauma memories (of which I will save for another post as I am still dealing with this on a personal level) she finally decided to embark on a holiday with her partner. Sadly the cruise she picked became an appalling episode of major unwarranted discrimination. This resulted in me forming a letter of complaint demanding an apology and asking them to review their future policy and procedure in relation to managing passengers with a mental health history.

On day 3 of her cruise they were in Common dining room and confronted by security staff who requested she accompany them to a room for questioning. She reports that she was questioned and supervised for over an hour where upon security and medical staff advised her that another passenger had expressed concern regarding her appearing distressed, and had noticed she had cuts on her arms.

My daughter advised them that at no time had she been distressed and that that yes she had old scars on her arms but no cuts.

They requested to take photos of her arms and proceeded to question her regarding her mental health history.

They also questioned her partner at this time regarding my daughter’s medical history and the stability and personal nature of their relationship

At all times my daughter remained calm and compliant even volunteering; above and beyond, my contact details to verify the information they were requesting.

It should be noted that my daughter has never had any history of any oppositional behaviour. This was once again confirmed by myself when staff phoned me in Australia.

The staff at this time advised my daughter and her partner that they had the power to remove them from the ship and if; after speaking with the Captain, this decision was made, they would need to arrange for their own transport home. At no time did they give any reason for why this may occur.

Following this interrogation they were advised they could remain on the ship but they would be watched.

Later that evening my daughter was advised; by staff at the bar, that a ban of alcohol purchase for that evening had been placed on her.

For the remainder of the cruise both my daughter and partner felt they were treated like second class citizens by security and many other staff. Other passengers who were witness to their abrupt removal from The dining room were also unnecessarily concerned in my daughter’s presence.

Interestingly I received no correspondence from the cruise line for over a month. I then; through friends of friends, engaged a journalist who interviewed my daughter and then tried to contact the cruise line for their side of the story. No one was available to speak with the journalist but surprisingly within 48 hours my daughter and her partner received a formal apology with acknowledgment that their treatment had been over the top. They also offered a full refund of their cruise fares. All though slow in response; and in my letter of complaint I never asked for money, I think the compensation was fair.

I also implored them to review their policy and procedure in regards to mental health
It is all very well to have a company policy intended to action potential instances of domestic violence or self harm by guests and that the safety of guests and crew is paramount. But does that mean that anyone with scars on their body, or any other out of normal appearance has the potential to be interrogated in a similar fashion?

It still remains a major concern to me that with out some clearer guidelines within their existing policy and procedure, the potential for similar treatment to others is likely to occur.
I would hate to think that anyone should ever be treated the way my daughter and her partner were treated.

Thanks to the hard work of both Jeff Kennett and now Julia Giillard, (Chair of Beyond Blue) mental health issues are been far more readily acknowledged and treated in a more positive and supportive nature. Their mission statement is focused on reducing stigma and discrimination. I would like to see this and other cruise lines (and other organizations) seek a advice from groups like Beyond Blue in formulating more progressive policies and procedures.

I am so proud of my girl in how she handled herself during this time and she has shown great strength in moving on from this, not dwelling on such a negative experience.  Perhaps a Strength She Never Knew.

 

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Thoughts Are Not Facts

  I should warn you this latest post is almost a light bulb moment for me and I know that the concept of Radical Acceptance is nothing new and in fact it is part of the whole mindfulness concept that seems to be very popular at the moment. It sounds so hippy to “just be in the moment” but for me it has become an invaluable tool in managing this whole nightmare of my daughters mental health. 

Radical Acceptance is a term used by psychologists and in particular used in DBT (Dialectical Behavioral Therapy) 

Accepting something does not mean we agree with it or even like it, we just accept it for the realty it is. Fighting that reality only creates more pain and suffering. The pain is inevitable but the suffering is optional and will be so much worse if we can’t accept the pain. 

I can say to myself 

“My daughter has BPD”

“My daughter chooses to self harm during periods of emotional instability” 

“My daughter will have periods of instability and crisis relapses”

“This is what comes with her BPD”

These statements are the reality. I don’t like them, I don’t want or approve of them. BUT I accept that these are the facts. 

Acceptance of these facts is my way of saying “OK, this exists, this is happening or has happened, how do I choose to handle it? 

I am not wasting energy in worrying about or trying to change what is. 

It is almost a relief to allow myself to use that energy in working out how I can deal with it, rather than how I want to control it. 

A Relapse and fury with our Mental Health System 

So here we go again The thoughts of trust and improvement are gone and replaced with with ‘doubt’ ‘guilt and ‘how could I have missed it again’. But with these thoughts come the even more concreted thought that I have heard endless times over the years. ‘In the end nothing I could have done would have prevented it. I know my daughters determination is there for the negative, but also the positive. She is still here, she’s hanging on and in her own way she is asking for help.

The Mental Health System is yet another obstacle in her recovery. 

With private psychiatrists who can pick and choose and drop her if she becomes too difficult. A private health system that seems to only have a capacity to take her when she is out of crisis and willing to engage in some therapeutic help. ( totally ludicrous considering the nature of mental health issues and difficulty getting my daughter to understand and be willing to engage in such therapy) 

Which leaves us to continue to bleed on the ever exhausted and over stretched public system which can only have the capacity to keep putting out the spot fires and hence we live in the danger that this crisis will continue on much longer so they don’t consider her just stable enough to move her out due to their desperate need for the bed. 

It beggars belief that if a mentally unwell individual feels she is safer from herself (her fears, her anxieties, her depression and her suicidal thoughts) and she is in a place surrounded by professionals who are trained in managing these very issues, then why in heavens name can she not stay there until she feels safer and more competent in helping herself? And if a public system can’t provide that then a private facility; that I pay through the nose to have insurance for, should have the capacity to to take her. In crises or not. 

This chronic failure of our system results in a silent wave of 50 preventable suicides a week. My daughter was almost one of those 50 this week. 

Patrick McGorry (the executive director of Orygen, the National Centre of Excellence in Youth Mental Health, and founding director of Headspace) has written in The Australian Newspaper (Saturday November 14) discussing this very issue.
Below is some of what he has to say. 

The Turnbull government has the opportunity, the means and the economic and public health imperative to do for mental health what has already been achieved in cancer and cardiovascular disease.
In cancer, we practise prevention wherever possible. We place a huge premium on lifesaving early diagnosis. Once diagnosed, the full complement of evidence-based treatment is guaranteed and made available. If 16 courses of chemotherapy are required to give the best chance of remission, then this is provided. Patients are not short-changed for financial reasons as they are in mental health.
Everyone agrees we have a poorly designed and broken mental health system that has not delivered. We spend only $7.6 billion on direct mental healthcare out of a total of about $140bn on the whole health system.
However, the commonwealth also needs to work with the states to redesign acute services and transform them from the traumatic risk and containment centres they so often are to truly therapeutic environments.
All Australians who need mental healthcare have a right to receive it in a timely way that is developmentally and culturally appropriate, and with sufficient expertise and staying power to meet their unique needs.

Grief …mine that is  and what does the future hold?

It has been a long time since my last entry and I am pleased to report that overall things are traveling ok. But an underlying pattern is emerging. As we near the end of yet another year my daughter again is adamant that the school she is at is the wrong one…again. Contrary to her school’s reporting that is she is doing really well and passing comfortably. Obviously more self sabotage in place. 

I think the thing that saddens me the most is that as a parent we we aim to raise our children to be self sufficient  individuals that can live indendently by going into the big wide world with a good education and employment. This is sadly not the reality for my daughter and  my accepting this is so difficult.

This child has not even managed to obtain a part time job and all though she completes each year at school she fails to stick at many subjects chopping and changing schools and subjects thinking it will be the solution to fix how she is feeling.  With this constant pattern she continues to speak about going to uni or TAFE. Her thoughts are so unrealistic. How does she think that TAFE will be any different to where she is now with study, assessments and exams? She can’t even cope with 4 days a week of school with out reflecting on what a big week she’s had. How does she ever think she’ll be able to hold down a full time job?

So does this mean I have a dependent child on my hands for ever?  I try so hard to be so encouraging of her ideas and plans but there must come a time when the reality needs to be spelt out to her. But perhaps she all ready knows the reality and what would me re enforcing that negative idea of her future achieve? I guess on some level we are both holding onto some hope that things will improve. 

So I take myself back to the baby steps. The here and now. Take each day as it comes and be grateful for every day we have. 

Changing Tracks 774 ABC

Raf 
As much as I am desperate for the issue of mental illness to be talked about and brought to people’s attention so it is not something to be hidden from society, in the interests of and in respect for my daughters privacy I would appreciate if this story remain anonymous. 
I know it’s shorter than others but it really is one I feel needs to be shared. 

I remember another busy morning of what I considered to be another normal day rushing around the house. Hearing the usual excuses for why she didn’t want to go to school. Asking again for bandaids. Me; in my rush, thinking ‘gosh those blisters on her feet from her school shoes are lasting a long time.’  A few hours later; settled into my work, I recieved  the call from my daughter’s school.

Please come and collect her.
I get in the car trying to remain calm I put on the radio. Playing was Alicia Keys  Girl On Fire.
I arrive at school to learn my daughter has been self harming. I look at the cuts on her arms and the counsellor  suggests she see a psychologist, and so our journey begins.
I’ve heard about self harm. Heck, in my profession as a school nurse I’ve had to manage it. I know the deal. Give non judgmental support,  try not to show too much alarm, provide opportunities for the individual to talk about how they are feeling. BUT this individual is not some one else’s kid. This individual is mine. This is different.
We continue along with our life and with an element of underlying concern, I feel, that although my daughter has gone to this extreme, she is; after all, experiencing normal adolecent highs and lows that so many go through and I’m sure this too shall pass. 
Moving forward to several weeks later and and I leave my daughter at a friends house after school. I take the time to do some shopping. My mobile phone rings and it’s her friends mother,  I hear the words “razor blade”,  “bad”, “ambulance”and “blood” I remember removing my ‘mother hat’ and putting  on my ‘nurses hat’ as I rushed back to the house to find my daughter in the shower. Contrasting visions of clean white and blood red. Something you see in horror movies. My daughter slumped in the corner murmuring “I’m sorry.”  
Wrapping her arms in towels and putting my pale and shocked daughter into the car we went to emergency. She was admitted and after sitting with her for hours I drove home and put on the radio. 
Girl On Fire was playing. 
No diagnosis was given. The medical profession are loathe to give adolescents a label as such. But  the words ‘borderline traits’ were consistently used and my medical mind told me this was certainly an accurate assessment of my daughter.  
Our journey of mental illness began. Through  so many trips back and forth in and out of hospital, psych wards and specialist appointments.  Times of separation from my daughter and through times for her struggling through her ongoing intensive therapy, bringing many painful memories back to the surface for her to work through. This song would often come on to the radio and it resonated with me. 
This girl on fire, not backing down, fighting every day for her survival, pulling herself out of that darkest place of depression everyday, choosing to stay alive. Choosing  to fight that black dog  of depression.
Giving a surface impression that everything is ok, nobody knowing she is that lonely girl in what she feels is such a lonely world. 
Leaving her trail of destruction in the scarred minds of her friends and family who have witnessed her catastrophic and demonstrative  feelings of despair and wanting to give up.
My daughter was on on fire. 
2 years later this ‘label’  of Borderline Personality Disorder was something that gave my daughter a feeling of validation, that she had a name for what she had thought was just her going crazy. 
My daughter did not back down
My daughter chose to keep fighting
And while our journey continues I like to think we are through worst and we have got our feet on the ground.


Sent from my iPad

NEW BEGINNINGS

So Christmas is upon us and my daughter has been home for nearly 5 months.
As I have mentioned before, I learnt so much during her time away. On reflection I learnt how totally burnt out I was and in turn how my depleted energy in managing my darling daughter with BPD was actually making our relationship so much worse.
So; with the luxury of getting a break and being able to absorb so much knowledge in the course I did regarding managing individuals with BPD, I have been able to effectively put into practice so much of what I learnt and amazingly it works!
That’s not to say we don’t have our bad days where she goes into a meltdown and I say things that just exasperate the whole situation- after all I am only human.
But I have learnt to listen to her, I actually have a better understanding of how she sees the world. Her perception of the the world is so different to mine. She sees and feels things with so much more emotion than I ever do. Her days are a constant battle to put a lid on those extreme emotions and try to behave the way everyone else does. This is something she must learn. Learning this is so much harder if she doesn’t feel she is being heard or understood.
If my house was burning down and I ran out side panicking and pleading with someone to call the fire brigade and someone said to me “don’t worry it’s just a house, I’ll call them in a minute.” My response would be more panic and franticness (if that’s a word) and I would probably become angry, possibly hit the person who said it. Because that is MY house, MY reality and I don’t think people are listening to me or hearing my urgency.
Admittedly in my mind a burning house is far more urgent than; for example, a teenagers full wardrobe and a feeling that she has nothing to wear. But when you pair that feeling with an individual who feels things with so much more emotion, then naturally a flippant comment like ‘don’t be ridiculous you’ve got a wardrobe full of perfectly good clothes’ is really not letting her feel I have heard her. That’s not to say I agree with her or have to solve her problem, just let her know that I hear her frustration.
This simple realization has improved our mother daughter relationship enormously.
Now that she feels I hear her and understand how she feels she is ready to take the next step in learning how to manage her emotions. This too is a battle for her but I recognize that any skill takes time to learn, and there are always some set backs with hopefully more steps forward.
All though I am on a single parent income I have finally bitten the bullet and taken out private health insurance. This is definitely not something that I can really afford but with the gracious assistance from my family I am managing. She hopes to commence a DBT program in the next couple of months (sadly; due to the financial constraints and ever increasing adolescent mental health issues, this therapy is not even implemented in the public health system) and it is to be hoped that this will help her learn the skills she needs to manage her BPD.
She has been accepted into a senior high school next year and very excited about a fresh new year.
I hope too, that this means new beginnings and positive strong future for my girl.
I am so proud of how far she has come and how hard she is working at staying well and healthy.

MORE SETTLED DAYS…LONG MAY THEY LAST

My daughter has been home over a month now and as I come against her highs and lows I appreciate only now how emotionally land physically burnt out I was 6 months ago. I feel I am coping so much better with her ups and downs. That; and being better equipped with the knowledge I’ve gained from the course I did on managing individuals with BPD, has assisted me to adjust my entire approach to a potential crisis. A change in how I speak, when I speak, how I listen and my body language. All of this, as well as a slightly more mature and rested daughter, is having a major influence on how we are communicating and positively living together. Something I don’t believe I would have had the emotional energy to implement had I not had that valuable break while she was in Perth.
I am blown away by the way she is actually saying to me, “I don’t like it when you say….” I feel so controlled when you tell me ……” I understand you feel …”
I firmly believe this is because I am communicating so much more with her in a more calm and rational manner and this is turn is causing her to communicate back in a similar fashion.
This is not to say we don’t have our bad days, but even the bad days seem to be easier than they have been previously.
I am back at work and loving it. She has been sick on several occasions and needed to be collected from school. Fortunately her dad is not working so he has been able to collect her and drop her home. She has had to be home here alone while I’ve been at work but Imm determined that as long as I can I will treat her as I would any other healthy 15 year old.
Last week She had her first psychologist Austin appointment since she has been back. She blew me away announcing her plan was to continue on approximately monthly appointments with them in the hope she could finish them up entirely by the end of the year, and be totally out of the system. This; I feel may be slightly ambitious but it is such a positive outlook compared to previous.
So as the title of this entry suggests, long may these settled days last!

LOOK AT THE DISEASE….. NOT THE SYMPTOMS

There was a post on face book today that really re enforces what I have previously posted here regarding the societal attitude to depression. Robin Williams did not die from suicide, he died from depression. Suicide is suggestive of the idea it was the individual’s choice to die.
I go back to my analogy of depression being a disease, like cancer we do not choose to have it. When someone dies from cancer there is always a cause, like pneumonia, pulmonary embolism or a stroke. But we always say they died of cancer.
Depression is a disease. How often do we hear of someone dying of depression? We don’t. We hear more they died of the symptom, suicide. Australian statistics on the incidence of depression are rising rapidly, particularly amongst our young Australians. Perhaps we could remove the stigma of mental illness by focussing on the the disease rather than its symptoms in turn gaining more insight into this disease. Robin Williams did not die from suicide, he died from a disease………Depression.

http://showyou.com/v/y-6csfDT5ovps/one-of-the-best-robin-williams-tributes-ive-seen?u=arsenic29

WHY OR JUST BECAUSE

I remember when I was kid hearing about about a family we knew who lived on a neighboring farm. They had a young son who had drowned in the river that backed onto their property. This; I remember, the adults commenting, was a terrible tragedy.
Now some 40 years later if such a thing would be to happen there would be an outpour of horror from the community with questions like ‘how could the parents let this happen?’ Why wasn’t the fence up to stop him falling into the river?’ Or ‘who was meant to be watching him?’ In today’s time society is so quick to look for blame or a reason why, instead of accepting that sometimes bad thing happen…..just because.
When I am really happy Or sad I generally can tell you what has happened to make me feel that way. When I’m sick I can also sometimes tell you why but sometimes it is just because. If someone gets cancer we can all wisely say oh he was a smoker or she drank quite heavily, but sometimes it happens to the tea totaling non smoking purist and then we want to blame it on that! Sometimes it just happens. So too is depression.
Often when my daughter’s mood spirals down I want to be able to say this is because she’s had a argument with her friend or she did badly at school test. But if I ever suggest this she gets so angry with me. I really need to learn that sometimes she feels like crap because. Just because. No reason, No blame, just because.
Really my suggesting it is for any particular reason is irrelevant anyway because it happened anyway and her feeling crap is just how she feels.
This is something I am trying very hard to learn. But I really believe that the alternative is counterproductive and is not therapeutic for my daughters mental health.