Monday, 30 January 2012

Dark Clouds Roll In

I write, I blog, I heal, I hurt but still.....even now......I cry. 
At the most unexpected moments, the dark clouds roll in and that dark, sad feeling wells and overwhelms. 
Time stops. 
At that exact moment I miss them and it is too much. 
I miss them too much again, I miss them all, for everything that will never be and for never holding them and when I think of them I also cry in frustration at myself, with self-pity I flounder at my own ridiculous inadequacy at being able to do the most basic of female tasks.

But then the breeze stirs and the clouds clear, time starts to move again and so do I. Until next time.

Two birds loving each other
 Sydney, Australia November 2011
During those particular moments go back to being filled with that raw, coarse, despairing sort of pain, the same as just after the twins died.  But as last year progressed and before it got bad again I remind myself that I started not to mind those moments as they eased.  I am still waiting for them to settle down this time, it is taking longer.  I think a healing scar that gets reopened takes longer to heal so I am being ever so patient. 

 However this evening when I was discussing these spontaneous moments of crying on a FB group I remembered something that I almost forgot I used to look for during that manageable stage last year.  That when when those moments become less raw, less all consuming bitter, heart wrenching pain and frustration, I know I won't want them to go away completely.  They are like magic.  It is at those moments I think my boys are with me and it is them stopping time and pushing through, reaching out and touching me from wherever they are now.  As soon as it stops hurting so much and I can focus on the moment I will feel them again and it is then that the sorrow turns to comfort....

Saturday, 28 January 2012

Bupa turnaround!

Gerbers. San Jose, Costa Rica. Jan 2012
So following on from my rant last week I received a surprise telephone call yesterday afternoon from (drum roll please) a lady in the customer relations department at Bupa.  At first she started reciting an obviously, carefully worded script about how they simply couldn't cover me and all the reasons why.

I stopped and asked that for just one moment if Bupa could just stop and listen to me.  If I had had the time to prepare I would have worded it better, but instead I reiterated what I had asked for, how and why I felt I hadn't been treated well and what my expectations were.  

My objective: I just wanted to know if Bupa could pick up the costs for a private diagnostic consultation with a recurrent miscarriage specialist plus if there was anything else that they might be able to cover.

She responded "Really?  Is that all you were asking?" I reiterated "Yes, from the day I called you last year until now, that was all I was honestly expecting, a little bit of help, anything more you could manage would be a bonus but even that would be a massive help."  I offered again to send the debriefing summary letter which I received explaining the very complicated detection of CHI and what it meant after I lost the twins, she was the first person to say that "yes, she wanted to read it."

She went away and called me back 20 minutes later with an authorisation number for that private diagnostic, consultation and also advised that if any tests were required as a result of that consultation that they may also be able to pick up the cost of those, depending on what they were and how much they cost, but to let them know all the same. 

She said she read the letter and was so very, terribly sorry for what I had to go through.  I responded that the letter was only after my first loss.  Could she even begin to imagine what I felt like after it happened a second time?  I could hear on the line she was teary.  That is empathy, because sadly if my story doesn't make someone have that reaction I know they aren't getting it.

WOW, 10 months, 8 telephone calls and countless emails.  10 months of very persistent, tough-skin, resilient but calm (if not teary) conversations with Bupa.  I was determined to make myself be heard, not just for me but for any other poor silent Mum that turns to them, I want them to understand.

"Dear Bupa, 
If I you learn anything from this complaint for me please let it be that when a mother calls and her baby has been stillborn she is not looking for Bupa to be the miracle, she is looking for support and help.  

Silent Mums appreciate that they can no longer have everything, in fact we are coming to terms with living the rest of our lives knowing that something will always be missing, and a significant amount of the immediate future feeling like we have nothing at all to live for, so if we are calling we are looking for your charity.  

We won't know the words, we don't know what we need. We can't think, our heads are full of self-loathing words for our own failure and the word 'WHY?' shouting very loudly, it overpowers all ability for rational thought and coherent sentences.  

Listen to our story and please help us, don't tell us what you can't do.  Take a look at our cover and see what you can do.  This might be a little counselling or to cover the price of a private specialist consultation.  Whatever you can give us that might help us as we attempt to scrape the tattered strands of hopes and dreams back together is all we are looking for.  So please do whatever you can and never ever a simple 'no'"

Oh, and for all you other silent Mums out there also getting nowhere fast with exclusion 24 exception 2 of Bupa's policy the words they need are apparently 'payment reimbursement for a private, diagnostic consultation' with a Specialist.

Today is one year and three weeks since I lost my beautiful twin boys and three months since I lost my beloved Gabriele.  It will be a long, long time until I see any of them again, still coming to terms living with living without them.

Monday, 23 January 2012

How Bupa doesn't help you find healthy

I hoped to write a better entry today but feel I need to share my recent wrangling with Bupa as it is just another example of what my life is all about now, what I am forced to explain and relive and the distinct lack of comprehension and compassion there is towards us silent Mums and Dads as well as preciously little help and support.

So I have just returned from another whistle stop, multi-leg, business trip to eye on the kitchen table the acceptable pile of post waiting for me.  Contained therein was the 'response' that I had been awaiting from Bupa on how they could help me with my situation. 

Before I go on to recount this whole painful scenario it, of course, goes without saying that my circumstances are 'exceptional', we all know how I have redefined that word in the last year. So the reason I contacted them in the first place is that I believed that this kind of situation would be exactly where that investment I have been faithfully making into a Private Healthcare plan should come into its own.  Needless to say I was wrong, and on receiving this latest 'official response' I am left wondering why on earth I waste my money paying to them? Since this whole life changing and difficult experience started they have done nothing but pull me through a mill of heartbreaking and emotionally difficult conversations and justifications with an organisation that doesn't care. 

The odd thing is that my NHS consultants and I are very clear about what they can cover and can't cover on the National Health Service and all my contributions to this side of healthcare has nothing but delivered so far.   With such a clear distinction one would have thought that Bupa would be picking up where NHS have to leave off, which so far is just a small but significant part of the proposed treatment plan being put into place.  Straight forward, right?  Nope - wrong!

A had a very clear request to Bupa 'would they help me with costs towards seeing a recurrent miscarriage specialist if the need arose?' (I know the waiting times for these with the NHS are extraordinarily long) and would they consider paying any money towards the cost of treatment that the NHS indicate they cannot cover?  Two very simple questions.  Now for the explosion of crap I have been through to get a non-response. 

Firstly check their policy, good luck to anyone that understands that - it reads like a manual to French grammar whereby there are more exceptions to their policies it is difficult to separate the direct contradictions.  The main clause is that 'Pregnancy and Childbirth are not covered' but then look to the page on the right and read the exceptions; except in the case of miscarriage, stillbirth, etc etc.  Oh - not to mention Caesarean delivery, never known anyone needing one of those unless they were pregnant!

OK - so from what I understand I definitely and categorically fit into a number of their 'exception' clauses.  So off I went ringing their 0845 number, only three calls later speaking to telephone representatives that lack any kind of sensitivity training in this matter, I was able to get them past the main clause to be informed that in order for them to consider paying for a private referral I would need three consecutive stillbirths as they did not differentiate between stillbirth and miscarriage - yep.  I was actually told this on the phone.  I then had to spend a week sending them the legal definition and explaining the differences between stillbirth and miscarriage and why one stillbirth equates to three miscarriages according to NICE guidelines.  Of course it made me cry!  It was tremendously painful being put in a situation where I was expected to explain this, not to mention expensive time on the phone.

I escalated the issue, to their supposed Customer Care department.  I expected at least someone to call me and ask me for further information.  No one did, in the end I called them and offered more explanation on my side as to why I believed I fell into their exception clauses as well as the aforementioned reason why I really, really didn't want to have to go through a third stillbirth before they should help.  I was told that things would escalate to another person further up.

Nothing, no answer to nearly six weeks, no follow-up, nothing.  Today a letter in the post what clearly shows that Mr Hunter Customer Relations Manager who never made direct contact with me and who clearly didn't understand my request looking at the content of the absolutely appalling response which should read: 

"Dear Mrs C, 
You can absolutely tell from the tone of this letter that I have never lost a child and couldn't give a crap about your circumstances.  
We heard you have been diagnosed with CHI, we have no idea what this means and even though we made you explain until you cried on the phone we weren't really listening because you can see in this letter that I still don't really know what your enquiry is about and can't be bothered to contact you to find out.  
Basically it sounds really complicated to us and being an insurance company we always prefer to never help if at all possible so are writing to  tell you we don't give a monkey's whatsit about you enquiry and enjoying putting you through hell on the phone my making you explain in minute detail what you have been through in the past year.  We are not going to cover you because when it sounds complicated we just say we don't cover Pregnancy and Childbirth, if you have a problem with that go to the Financial Ombudsman and explain you whole crappy story over again to them.  

Oh by the way don't forget to see you GP about what's available on the NHS"

Perhaps if I had sent them this, all that is left being when your baby dies, a box full of memories while Bupa steals hope
I mean seriously, of course I am seeing my GP!  I told them I had an NHS Consultant.  No apologies for their shortfall in comprehension, no explanation of what the exception clauses are in the policy if it is indeed the case of the above blanket statement.  No real offer to help, not even to suggest other areas they could help me out.  

So far away from helping me find healthy Bupa are officially helping me find unhealthy...............I hope their psychiatric care is comprehensive.  Stealers of hope, I am writing back to you shortly.

Read my next entry to find out the clause that will help you gain some co-operation! Bupa Turnaround

Sunday, 8 January 2012

Silent Birthday

Yesterday I flew back in time on my way to Costa Rica, it meant that the day lasted an extra six hours.  

View from my hotel window
San Jose, Costa Rica Jan 2012

I sang 'Happy Birthday' to the boys and thought of them all day, it was all I could manage being on a plane.  Having said that I can appreciate why this significant day can be hard on Mums and Dads a birthday without cards, cake, present.  Without your children.  But that is my reality so there really is little point eating myself from the inside out going over this in my head.  Remember 2012 is the year that I am letting myself off the hook a little bit.  

Furthermore it is hard to make this day any more outstanding than any other simply because I think of my boys all the time, consequently their Birthday, for me is just another day without them. 

Yesterday was the colour of dusty roads in winter (refer to SOC scale) I honestly believe that yesterday marked a whole year away from that day, I cannot be more grateful for this. 

Wednesday, 4 January 2012

Shades of Horrid

I wrote some time ago to another lady trying to put down in words how you cope with multiple loss, special dates, basically the aftermath of this past year and have been reiterating this advice to myself over these last few days. Another friend lost her soulmate before Christmas and I feel her pain and was trying to think of how to explain to another the raw, heart ripping and crushing emotional disaster you go through.  I think the following is the best I can do.

Looking back at these particularly sad, not strong enough, try crippling moments I see that put into perspective that these are absolutely not the worst moments. These are the aftershocks, the wave-like reminders that you can see approach from the horizon and might have time to prepare for, they shouldn't engulf you and though they might annoy, in much the same way a healing wound itches when it heals, this reminds you that you are healing and not at risk of bleeding out.  Not sure how many metaphors I can get down here but in basic words you start rating your life on a scale.

The scientific name I have given this scale is 'Shades of Crap' (SoC) and when I think about the colour I rating them they come in shades of grey. 

For me, by far the worse colour on the SoC scale was finding out that my sons had died, each time this happened it was the black hole of black that literally sucked the light out of life.  Of course the other end of SoC is the colour of a winter sky in the UK, that day when the drizzle is so light but soaks you nonetheless, what my Grandfather calls 'lazy rain'.  

So now that we have the scale set up I can place any subsequent  events in a sliding fashion meaning that everything and anything that comes before, or after, this exact moment is never as black as the day my children died, therefore must rate somewhere else on the scale, no matter how much these events hurt me they are just a buzzing noise compared to the initial sonic boom, mushroom cloud, atomic fallout. 

I took Christmas a bit like that and will be taking the twins' birthdays the same way.  I have decided not to dwell on spending money and on how sad it is that I can't hug my sons on their birthday (that will not happen in this life), instead I have taken a fraction of what I would be spending on them and sponsoring a children through SOS Children's Villages in return I get thanks from a little child in Costa Rica who lives in an orphanage, for whatever reason.  I write to her, I can send her presents and most of all I get to meet her, she will (hopefully) smile at me and that will remind me of how important and precious life is and why it is absolutely worth living. So I will let you know how this goes when I fly out on my boys' Birthday, all going to plan this whole experience should not even make it onto the SoC scale......

I know I still get those days when I simply do not won't want to function but that damn sun is going to keep rising everyday and trying to resist the impossible does nothing but exhaust me.  I need that strength to deal with the devils that will be going round my head.  So 2012 is 'go easy on myself and let myself off the hook year'.

Oneday I will scrap the SoC scale and everything will be shades of blue. Sydney, Australia Nov 2011 Australia Nov 2011
So to my friend: Time will march on yet all is not lost.  Believe. Above all, breathe