For your information...

Somebody asked about the details that we forgot to put in the blogs below. We interred Ben's ashes under a lovely big tree at Box Hill Cemetery. Yes, anyone is welcome to visit. You'll find the plaque in the grass under the big tree near the office building.

One year

Yesterday was the first anniversary of Ben's death. A year of coming
to grips with living differently.

We interred Ben's ashes in the morning, very simply. Pete is in
Vanuatu, Andy in Canberra, so it was just the four of us in the rain
under umbrellas. Appropriate weather for such things.

Last night we sizzled sausages for young friends who seemed happy to
be together again in Ben's name.

Death

Death is horrible
Death is ghastly.
No-one wants death
To occur.

Death leaves us
With an empty space
In our hearts.

Death feels lonely and
Sometimes makes you
Feel angry.

(Matt Mulherin, Nov. 2009)

Double figures Matt!

Whenever one of our boys is about to have a birthday Chris shouts and
cheers 'Double Figures!'  This is mildly hilarious as he starts when
the number is three and continues on until the double figures is
really reached. So Matt has achieved his fantastic milestone that he
has been anticipating for seven years. Does he feel that it has been
especially special? Well… We did however all have a good laugh about
it and a good laugh is solid gold - a shared good laugh is even
better.

I do hope that Matt especially, because he's still only ten, will
remember his childhood as sad but full of fun and laughter as well. He
still misses Ben daily. He misses him deeply. Its quite sobering
really because he keeps it to himself. He is going well though and
Andy, Tim and Pete, with Sally as Matt's special invitee all did a
smashing job with his party games on Friday. If "a dirty (and wet) boy
is a happy boy" is true, the whole troop of his friends went home
happy + +. It was a bit tough on some parents and their washing
machines.

The guys keep us going. Life is real. Life demands to be lived and
young guys, in our case Tim, Andy, Pete and Matt, sure know how to
find the fun in it all. We thank God for them and we thank God for
their friends, Ben's friends, and all they have been through with us.
We are told by people who know, that the 'new normal' will be how we
live the rest of our lives. What I haven't heard much of is how much
hard work that requires. We still laugh and enjoy things. We seem to
have been laughing on and off forever really. So it's not that we are
now deadly (!) serious, only that behind the laughter is a damload
full of sadness. It's great having other young men to care for, not to
mention our zippy ten year old. (Yes! He reached 'double figures'.)

On this day

On this day twenty-five years ago Lindy and I were married.

On this day one year ago Ben was in a coma and his LD levels were rising. I wrote on the blog:

Ben has a temperature returning and his LD (Lactose
Dehydrogenase) levels are rising. This is not good news as it may well
indicate the cancer is at work. If it is, it means the chemotherapy
has not done the job. If this is the case then the outlook is very
grim as there are few medical options left.

For me, that was the day I 'knew' we were going to lose our boy.

Last night as we reflected on the last year and twenty-five years, we talked about time and metaphors for grief. I wrote to a friend this morning:

Yes we're doing ok I guess... it's a long road. We were talking about 'the new normal' last night as we celebrated our 25th wedding anniversary. We decided that wounds heal but leave scars  forever, but that so far our wound has not healed yet: it still feels pretty much like a gaping wound.

And we thought that as time goes by we would miss Ben less but we would not care any less. But so far we still miss him all the time.

A note from Katie

Hi Chris and Lindy,

I wanted to share two things with you. The first is something that
resonated with me the other night and the second is a sad (yet happy)
reality for Josh and I.

On TV the other night was one of my all-time favorite movies: The
Shawshank Redemption. I can almost quote the entire thing and think
it's brilliant - I'm sure you've seen it (and encourage you to do so
if you haven't!)! Anyway, as it got close to the finish of the movie,
I was reminded of one of my favorite quotes and as I heard it, it
struck me smack bang in the heart.  It is a reflection by Red (one of
the main characters) about his friend Andy...

"Those of us who knew him best talk about him often. I swear, the
stuff he pulled. It always makes us laugh. Sometimes it makes me sad,
though, Andy being gone. I have to remind myself that some birds
aren't meant to be caged, that's all. Their feathers are just too
bright... and when they fly away, the part of you that knows it was a
sin to lock them up does rejoice... but still, the place you live is
that much more drab and empty that they're gone. I guess I just miss
my friend."

Even now I tear up reading it back to myself and thinking about it. It
is a little different though to my/our situation, as the movie
concludes with a reunion of the two friends here on earth. (If you are
unfamiliar with the movie Red and Andy were in a prison and Andy got
out (hence the quote), and Red joined soon after.) I miss Ben all the
time and find this quote comforting - and I know there will be a happy
ending to our movie when we all get to heaven! I could go on forever
about my feelings of loss, sorrow and happiness since Ben won the
victory, but may leave that to a later conversation perhaps.
Now to the sad (yet happy) reality for Josh and I....

Next Monday we are moving house into our new two bedroom unit. This is
a good thing in itself, but we leave our little apartment that Ben
once shared with us every now and again. It reminds me that time keeps
moving and that we will have to move with it if we want to continue
our lives too, but slowly (as I remember you saying in a blog) things
will change, new things will happen that Ben won't be here to share
with us. This is one of them. We will miss showing him around our new
home, miss having him at our many bbqs that will happen, and miss many
more things too. BUT Ben has a very prominent spot on our fridge (a
couple of spots actually), so I feel like we take him with us too...of
course we take him with us - he is forever with us in our hearts! As
we packed up the other day, we took his photo off the fridge and said
to ourselves "Come on, let's go Ben - we're moving house".

Stu wrote to us this week:

I keep remembering what was happening "this time last year."

For example, Saturday was national "seven-eleven day," where they give
out free slurpees between the hours of 7am-11pm.  I remember that day
last year, it was about 10:30pm, tim, pete, sally and I were with Ben
in his little cubicle in 3-west.  Simon rang up asking what we were up
to and if we wanted slurpees.  Of course we all did, so him and Dave
HL went to the local 7-11 and told them that they needed 7 slurpees
for their friend who was in hospital with cancer.  Of course they
obliged.  Then the two of them had to carry these 7 slurpees to
Box-Hill hospital, smuggle them through the Emergency Department
entrance, then finally past the nurses into his bed (number 4 at this
point I think).  It was great, we all sat around drinking our slurpees
together, joking about how bad the 7-11 man must have felt when he
refused them at first,  and generally enjoying a good time.

Teddies (yes: I give up on 'Teddys')

Teddies adorning our bedroom to date. Lindy has named one after each of the boys, although she hasn't found a Ben yet. Any guesses which is Andy?

Divisions in the family

The astute blog reader will have noticed a variation in the spelling
of the plural of Teddy in an earlier blog.

I say the plural of Teddy is Teddys because Teddy is a proper noun
nickname for Theodore, named after President 'Teddy' Roosevelt's comic
bear hunt in 1902 and a famous cartoon in the Washington Post of the
President with a bear.

But Andy says, of course not, the plural of Teddy is Teddies because a
Teddy is just a bear and because y changes to ies in the plural.

But I say that if Teddy is just a bear it's like Pooh bear and Pooh is
his name. And if you had more than one Pooh it wouldn't be Poohies
would it? It would be Poohs. Tiddly pom.

But Andy says that argument doesn't follow because Pooh doesn't end in a y.
 
Tim is non-committal. Pete and Matt are asleep and Lindy isn't too
sure but thought we should blog it. Ben no doubt would have a strong
opinion.

The comment line is open for your thoughts. Meanwhile Teddy photos will follow soon.

Over the hills and far away...

Lindy has just written an essay for her counselling course which I
(Chris) encouraged her to put on the blog. It's long so only the
beginning appears below. You'll have to follow the link at the end for the rest.

This is a reflective essay written by 'Old Mother Duck', who went out
one day, "over the hills and faraway" but when she called, "quack
quack, quack quack: only four of her [five] ducks came back." Her lost
duckling would never come back, but every day she went out to look for
him anyway. This essay, is about grief due to bereavement. I will
begin with an account of the last six months of my oldest son's life
and then briefly present some theories specific to counselling in
loss. These discussions are, of necessity, glimpses only, and include
key concepts and approaches from Freud's beginnings in 1917 to one of
the current theories proposed by an American professor of psychology,
Robert Neimeyer (Neimeyer, 2000). I shall present the theories
factually without my own opinions but my experiences are included in
the essay where relevant. I will finish the essay by looking briefly
at loss counselling possibilities while omitting more general theories
and skills, including how my experience might affect me as a
counsellor.

Ben

"Out of a clear blue sky" has resounded in my head since my strong and
healthy 23 year old was diagnosed with a rare lymphoma. Ben had a lump
on his leg. After a couple of months he thought he should have it
checked out. It surely was innocent but it was growing. It took weeks
of different doctors' opinions to have it correctly diagnosed. The
lump was now the size of a tennis ball. It was growing every day and
looked red and swollen to shiny. It was painless. The cancer journey
started for me with his words, quiet and serious, 'It is cancer Mum.
Not maybe.' That was the beginning. We of course assumed it would be
an annoying interruption to Ben's life and nothing more. How wrong we
were. The end of June 2008 until the beginning of December that year
was all the time Ben had left.

[If you want to read more, go to the full essay.]
Radiation removed the lump on his leg but the lymphoma had already
spread. He had major surgery to remove a spleen six times its normal
size and a gall bladder infected with malignant cells. He reacted
badly to one of the miracle drugs he was given and needed increasingly
large and dementing doses of morphine. His suffering was intense and
we were amazed at his bravery and lack of complaint. He became a ward
favourite but had to be moved to the Intensive Care Unit (ICU), due to
failing pulmonary function.

Finally he was intubated and kept in an induced coma for eight days.
We watched our darling man-boy oblivious, with intravenous lines into
all parts of his body and listened to the swoosh and hiss of the
respirator breathing for him. We watched his monitors. We asked
questions. We saw his chest x-rays looking increasingly bad. Still the
medical experts spoke of hope and there being a chance of recovery. We
rejoiced when they extubated him. We assumed the best, but he was
already dying. We had three precious days with him awake. We talked
with him about 'What if you go…' He watched videos from his ICU bed
with his brothers squashed into the cubicle with him. He spoke the
fond and loving words of the dying. They have carried us through some
of our darkest moments. He saw friends and the extended family and
left short messages for people who were not allowed into the ICU. We
watched with increasing pain and fear as his blood oxygen levels
continued to drop. His body systems were giving up. He was exhausted.
He said 'I just want to come home and sit in the sun.' We were going
to lose him but still I thought there was a chance. Three days after
they extubated him, the medical team said he had to be intubated
again. He said 'If I have to go, being in an induced coma is OK. I
know what happens. Its just going to sleep.' And so we said goodbye as
though it might be the last time; all the while believing that it
wouldn't be.

Once unconscious and intubated again, to our shock and horror, he
immediately deteriorated. Many of the medical staff shared our pain.
They told us there was no hope of him recovering; the lymphoma had
done too much damage. Along with our despair, we held on to our
resolve to not have him suffer pointlessly. With tears rolling down
our faces and a surreal sense of what was happening, we agreed to turn
his life-support off. 'Was this really happening?' I asked myself.
Everything except the respirator was turned off. We watched the graphs
go flat. The respirator hissed on. We watched him die. We died too.
Our man-child was a bruised and waxen body on an ICU bed.

A Glimpse of the Origins

Sigmund Freud, is cited as having the first insights into grief as a
process. He researched grief and loss and then published a paper
called 'Mourning and Melancholy' in 1917 (Mallon, 2008, p6). This
paper outlined his proposals and they became the basis for future
theories of loss. He proposed that there was 'grief work' to be done
by the bereaved. The goal of grief, he said, was to withdraw emotional
energy from the deceased (cathexis) and so become detached and able to
re-direct the love/energy to a living person (decathexis) (Mallon,
2008). This 'detachment' from the deceased was the sign of 'success',
or put another way, that the grieving process was complete and the
bereaved was ready to 'move on'. A British psychiatrist, formed in the
Freudian psychoanalytic tradition, John Bowlby, expanded this
hypothesis of Freud's and proposed 'Attachment Theory' in the 1960s.
He defined it as, "a strong affectional tie that binds a person to
[another]." (Sigelman & Rider, 2009, p. 408). Our first attachment,
said Bowlby, is our primary carer, usually our mother. Bowlby went on
with his research and in the late 1960s, with Mary Ainsworth, an
American developmental psychologist, proposed that a person's
behaviour can only be understood when the environment which has been
theirs is understood (Sigelman & Rider, 2009). A few years after his
findings with Ainsworth, and now in the early 1970s, Bowlby continued
his research, this time with Colin Murray Parkes. Together they
developed a theory of grieving and loss which was based on Bowlby's
'attachment theory'. When we look at their new theory of grief, we see
that they have built on Freud's original ideas of cathexis and
decathexis, formalising the process of grief into four distinct
stages: numbness, shock and denial; yearning and protest; despair and
disorganisation and fourthly; reorganisation or 'letting go' of the
attachment to the deceased (Mallon, 2008, p7).

Meanwhile, also in the 1970s, a Swiss doctor was developing a new
theory based on her experiences with dying patients. She was of
course, Elisabeth Kubler-Ross and she wrote On Death and Dying (1970),
which is still 'the' text used when thinking about the dying process.
She proposed that it was a journey of stages and she acknowledged her
model was based on Parkes and Bowlby (Kubler-Ross, 1970, as cited in
Mallon, 2008, p8). She outlined five distinct and observable stages:
shock and denial; anger, resentment and guilt; bargaining; depression,
and lastly; adjustment and acceptance (Hooyman & Kramer, 2006, p. 37;
Kubler-Ross, 1970). Hooyman and Kramer make it clear that Kubler-Ross
herself acknowledged that her stages of dying were not intended for
the experience of bereavement.

Moving into the 1980s and 1990s, Mallon (2008, p9) cites a Harvard
psychology professor, J. William Worden, developed the concepts of
'grief work' and the 'tasks' involved. While his concepts are clearly
a conglomeration of theories of the time, he proposes a new and
important shift by changing the emphasis of grief to being 'grief
work' and 'grief tasks'. Worden went on to say that if the client
accomplishes his tasks, he will find himself at a 'successful'
conclusion to his grief journey. The tasks were, he said: An
acceptance of the loss as permanent; the pain of grief acknowledged
and experienced fully; adjustment to an altered reality and fourthly
and finally; relocation or 'letting go' of the deceased and investment
in a new life (Hooyman & Kramer, 2006).

The Family

Worden's emphasis on the completion of the tasks mentioned, has made
it, and still makes it a favoured method in family counselling. The
wording of the tasks has been slightly modified to suit the grieving
family system and the family grief counsellor uses the 'tasks' as
goals to aim for. (Hooyman & Kramer, 2006). Janice Nadeau (2001),
another prominent family loss theorist, concurs with Worden, stressing
the importance of family goals. She states that the bereaved family
unit must re-group in order to learn to function well again (Nadeau,
2001, as cited in M.S. Stroebe, W. Stroebe, & R.O. Hansson Eds.), and
describes the need for the family as a unit to actively search for new
meaning (Hooyman & Kramer, 2006).

There are many people who say that marriages often do not survive
major upheavals or losses like ours. My husband and I have always
invested time into our relationship, seeing it as a most important
priority. Since Ben's illness and dying, we continue to invest (and
enjoy) time together and are vigilant in monitoring our 'marital
health.' We see this as a life task, made more challenging because of
our individual and sometimes incompatible grieving processes; for
example I dwell and mull over things and he 'gets busy'. Dinners out
together every week where we can talk and listen to each other and
clear up 'issues' that may have arisen during the week are important
to us. We both believe it is important that we are more intentional
about monitoring the emotional health of our family unit than ever
before. The family as a unit of course, can only be as healthy as each
individual in it so each child needs careful consideration. Family
dinners have been a part of our lives as a family of seven and now as
a family of six present and one absent, we still sit and eat together
once a week. In this new though unwelcome family configuration, dinner
is still a time where we laugh and talk but now we share the added
bond of our unseen Ben who is still often part of our discussions and
laughter. As I write and reflect I think I can say that our family is
doing well. As we begin the life-long process of accepting and
readjusting, we are beginning to reconstruct meaningful moments and
memories in our collective and individual lives.

New models

Before I look at my last theorist, Robert Neimeyer, I must first
mention Margaret Stroebe and Henk Shut (1995, as cited in Mallon,
2008, p9). It is with their theory the Dual Process Model of Coping
with Bereavement. (Stroebe & Schut, 1999 as cited in Stroebe and
Schut, 2008), that the old models I have presented, begin to be truly
challenged. The 'Dual Process Model' states that the bereaved person
does not progress through stages but oscillates between, 'loss
orientation' and 'restoration orientation'. They describe, in
technical language I believe, what the bereaved call our
'roller-coaster' ride or 'waves of grief': Mourning, yearning and
pining for the lost one and the past life, and the complement reaction
of 'restoration orientation': where the focus turns towards the
future; including a goal, adaptation and functionality (Strobe &
Schut, 1999, as cited in Hooyman & Kramer, 2006, p42).
Robert Neimeyer (2000, p55 as cited in Mallon, 2008, p11) is a
professor of psychology in Memphis who is a current researcher into
death, suicide and loss (Neimeyer, 2000, back cover). Similarly to
Stroebe and Shut, mentioned above, his model is significantly
different from the traditional models looked at previously. While
Nadeau and Worden alluded to meaning-making as important, Neimeyer
says the reconstruction of meaning is 'the' way to live again (Robert
A. Neimeyer, 2000). "This is described as a constructivist or
narrative approach." (Mallon, 2000, p11). It proposes that purposeful
grief, changes the structure of the grief journey (Mallon, 2000).
Neimeyer says that "loss…forces the unbidden exploration of a
new…painful…boundless journey from which we will never completely
return." (Neimeyer, 2000, p200). While previous theorists wanted us to
'return' to the normality we knew prior to our tragedy, Neimeyer
recognises that we won't, can't and don't want to return without the
person we have lost. He says that the bereaved must create a new
'assumptive world'. Neimeyer's term 'assumptive world' is the world an
individual has come to rely on. Neimeyer argues that any disruption of
it causes a profound destabilising in the affected individual
(Neimeyer, 2000). I know this to be true as I experience shock and
disbelief that Ben has gone. Yearning, fear and stabbing sorrow mix
together with disbelief and make my world seem a frighteningly
unpredictable place. A new 'assumptive world' will take a number of
years to establish.

Counselling in Loss

"The grief counsellor acts as a fellow traveller [with the bereaved]
rather than consultant, sharing the uncertainties of the journey, and
walking alongside, rather than leading the grieving individual along
the unpredictable road toward a new adaptation" (Neimeyer, 2000, p.
200). While most skills and techniques used in bereavement counselling
are the same core skills used in integrative counselling (Corey, 2009)
and not referred to here, the brief therapy, goal orientated general
counsellor, needs to accept that grief cannot be 'fixed'. Having said
that, Neimeyer's 'narrative therapy' is about the client telling his
story and thereby restructuring meaning and creating a new 'assumptive
world'. In the few weeks after Ben's passing, I wanted to tell anyone
and everyone what had happened. Neimeyer says that this is the
beginning point of searching for new meaning (Neimeyer, 2000).

The counsellor's most important job is clearly to encourage the client
through verbal (Geldard & Geldard, 2005) and non-verbal (Egan, 2005)
cues, to talk through their story; repeatedly if the client wants to.
"Can you tell me more?" "What was it like for you when…" "Can you
describe it for me?" Skills like attentive and active listening,
reflecting of feelings and thoughts, paraphrasing, probing,
summarising (Geldard & Geldard, 2005), all help free the client to
share their story of grief. Neimeyer stresses that the grief
counsellor should suggest that the client finds activities and
projects which might comfort him as he walks a road he didn't choose
and which he still fights against. Photos everywhere, DVD recordings,
memorabilia displayed, blogs, written memories from friends and
family, celebrating anniversaries and birthdays in a fun way, special
memorials in cemeteries. These are only distraction techniques but
they have helped and continue to help me to 'make it' through every
day. As a counsellor I will include suggesting to my client finding
activities or projects as a way to start the reconstruction of
meaning. I would see it as valuable to explore specific 'meaningful'
options with my client to lend a sense of purpose and direction to the
counselling session. I will always stress that the aim of counselling
in bereavement is not to detach from the loved one but to continue a
modified relationship with them.

As I walk through my own valley of the shadow of death, I am aware as
Worden warns (1991, as cited in Hooyman & Kramer, 2006), that if I
cannot be honest about my own journey and feelings then I may well
jeopardise the healing process in my client. Having recognised this
possibility, it is also true that my grief experience might well
heighten counselling qualities so essential, like empathy,
unconditional positive regard and congruence (Egan, 2007).

Conclusion

In conclusion, I have looked at the evolution of counselling in loss,
through a few theories beginning with Freud in 1917. I have found that
until the late 1990s, the theories were linear and had their origins
in Freud's original propositions. I explained that I could not relate
to those theories but was encouraged to discover Neimeyer and his new
model of 'reconstruction of meaning' and the 'assumptive world'. I
found that families need special care in times of mourning and sorrow
and that counsellors must know that they cannot fix grief. I
acknowledged that my own experience could help me as a counsellor but
it could also cause problems to a client if my own journey is
unresolved.

[Back to BensGotCancer main page. ]

Ben's Got Cancer - one year old today

From Chris:
One year and 75,000 hits ago today we started this blog at Ben's request. If you don't remember how it got its name go back to the first blog. What a lot of water and tears have passed under the bridge in this last year.

From Lindy:
When people ask how we're doing I usually say not too bad. Sure! We're not too bad. We are finding ways to cope. My counselling course calls it "reconstructing meaning after loss." I have a collection of at least 50 Teddies which have taken over our bedroom and Chris has a growing collection of wine. Yep! We're doing fine if Teddys and wine are the measure. But they don't make up for Ben. [Chris says: stay tuned for a photo of all the bears I share a bedroom with.]

Black humour has also been our very welcome companion during Ben's illness and now in his absence. When we were talking with the boys about Ben's plaque in the cemetery, we talked about a different site which would have room for another set of ashes. Tim and Pete both said 'Pido Yo!' which means 'Me, Mine!'

The full monty

So to speak...

This blog has about 25 entries below. But if you want to see all the entries from the beginning, there is now an archive version of the blog located at csbkm.blogspot.com. The archive is limited to the English blog posts and may not be up to date, but it does start from the beginning and everything is on the one page. That means it will take longer to load particularly if you are not using broadband internet.

"If I get stuck you'll have to pull me out."

Update on this photo: we got the following email from friends in the US who recognised the location:

I tried to post a comment on your web page, but since I'm over 15 years old, I don't think I know how to do it!! Please post that we were just trying to teach our Aussie boys [that's Ben and Tim on their world trip] a bit about South Carolina history at Ft. Sumter, where the Civil War started... Boring!!

First time we've seen the photo... priceless!!  We always think of the dashing two and their stay in Charleston!

We thank God for sharing each of you with us.

Love To all,

Ginny y Harris

I hope the lads didn't offend the locals when they left the tour to load the cannon.

More on absence and presence

On the same theme as earlier thoughts about Ben's absence being present...

Martin Heidegger says (my paraphrase), "Our own past is not something which follows along after us, but something which already goes ahead of us."

Kids with cancer

As we walked into the supermarket this afternoon we put several coins in a ‘Kids with Cancer’ collection. Before Ben, I had almost got to the point of thinking, ‘Ah. Nah. Cancer isn’t that bad these days. They cure it mostly. It’s not a big deal. And surely they’ve got enough money!’

That was before June last year. Sigh. Cancer is still a big deal. Even when it has a good prognosis and is curable, it’s a long, tough road. It seems true to say that it is a life changing experience for everyone involved.

On Saturday last, a group of us including our family, drove to Warragul for the funeral of a 17 year old boy who had lived, laughed and finally died with a bone cancer he had during six years or so. We thought some people might be interested in his blog spot so here it is. Phil’s sister Kris has done his blogspot. Matt says we are ‘cancer companions’ and likes our instant bond with others who are suffering with cancer. ‘Acompañar’ is the word in Spanish. Something like ‘walk alongside’.

In his own words - Ben's MySpace page

I spent the first 8 years of my life in Mel-
bourne, then moved to Buenos Aires in early
'94 with my parents and three brothers. We
lived in B.A for 6 months, then moved to
San Miguel de Tucuman, where we lived un-
til early 2004, acquiring another family member.
               Moved back to Melbourne for a year,
then spent 2005 traveling Europe, North,
Central and South America with Tim, and
ended up living back in Tucuman. 2006 saw
me back in Melbourne, continuing study at
The University of Melbourne, doing a B.Sc
and a Diploma in International Studies...and
that's where I'm at now, in 3rd year of a 4
year course, not quite sure what I'll be do-
ing afterwards.
                   I go to St. Judes Carlton, I'm
a valet/concierge at a Melbourne city hotel,
do some casual interpreting (English/Span-
ish, Spanish/English) here and there, and...
wish I was somewhere else most of the
time, wherever I am or aren't...I'm the most
critical person I know, which can be good
and can be bad. I notice everything, and
have a thing for shoes-i can probably tell
you what shoes you had on last time i saw
you-test me-or don't, I might criticize you
for being 'pesado'. People are ok, so long
as they don't annoy me, which many do,
sorry...but there are a few that don't-there's
a chance.
                 I hate it when people cheapen
the meaning of words by over-using them
or using them when not appropriate; then
when they are meant, the original meaning
is no longer there. "Love you", "beautiful",
"darling", "gorgeous" are a few examples-
don't kill them!

Soliloquy for one dead

A friend sent us a copy of "Soliloquy for one dead" by the Melbourne
poet Bruce Dawe. Ah, Ben...

Ah, no, Joe, you never knew
the whole of it, the whistling
which is only the wind in the chimney's
smoking belly, the footsteps on the muddy
path that are always somebody else's.
I think of your limbs down there, softly
becoming mineral, the life of grasses,
and the old love of you thrusts the tears
up into my eyes, with the family aware
and looking everywhere else.
Sometimes when summer is over the land,
when the heat quickens the deaf timbers,
and birds are thick in the plums again,
my heart sickens, Joe, calling
for the water of your voice and the gone
agony of your nearness. I try hard
to forget, saying: If God wills,
it must be so, because of
His goodness, because -
but the grasshopper memory leaps
in the long thicket, knowing no ease. Ah Joe,
you never knew the whole of it...

Epitaphs - from Lindy

I have longed for a place to go and ‘be’ with Ben alone. Staring at his box of ashes on a bookshelf doesn’t seem right. Neither does not having any kind of formal reminder that he has walked upon this earth.

Faulkner Memorial is a beautiful place. It is where we had Ben cremated (how I wish we had had him buried). But it is too far away from us to go spontaneously and/or often. So with Matt’s help we have found and confirmed a spot in a nearby cemetry for his ashes. The site is in a grassy spot in the shade of a beautiful elm tree. It is simple and peaceful.

It is the closest I have come to feeling Ben’s presence. We think it is where he would like to be.

We can now make up an epitaph. What about these that I found in a book?:

Here lies Ezekiel Aikle……
Aged 102
The Good
Die Young.
(East Dalhousie Cemetery, Nova Scotia.)

Or this one I like:

Sacred to the memory of Anthony Drake
Who died for peace and quietness sake;
His wife was constantly scolding and scoffin’;
So he sought for repose in a twelve-dollar coffin.
(Burlington Churchyard, Massachusetts).

The plaque next to Ben’s has a toy wind whirler, the kind that are sold at shows and fairs, along with another more robust wind chime looking like a bee. As we stood and looked and smiled, Matt said "Do you think a puck and stick (in-line hockey) would be stolen if we put them on Ben’s plaque"

I wonder what Michael Jackson’s epitaph is?

If you know any funny ones please let us know. We will put them here even if we can’t promise to use it for Ben’s plaque!

The shoes...

Ben's birthday party yesterday was a fancy shoe party. Those who knew Ben well will know why. If you want to see some amazing creations you'll find them here. These ones are my favorites, made out of shower caps.

24 today

24 years ago in the small hours of the morning in East Melbourne, Ben was born. I remember it well! And I remember the fragile bundle we took home from hospital. We were awed with that responsibility which first children impress on their parents as you take them from the safety of hospital. Little did we know ...

We had an asado (Argentine barbecue) yesterday with lots of Ben's friends: large slabs of meat and chicken cooked slowly over the coals. 27kg of well salted meat went down well. He would have liked to be there.

As the weeks go by the spaces between pain get longer, but the pain is no less. We look at photos or write on the blog, we invite friends for lunch and we talk about him. There are lots of things we do to make up for the one thing we can't do, which is to have him back again. Just to see his face again.

The weeks go by

The weeks go by, the 8th of the month comes and goes and comes again, Tim and Andy move into 'Ben's bedroom', we go roller blading and remember Ben playing roller hockey, Andy uses Ben's old skates.

The blog ticks over 68,000 hits, but we don't write as much now because there isn't a lot new to say...just the same heartache that doesn't go away but does wax and wane day by day. Today's a bad day as the photos pop up on my screen and iTunes churns out "Viva la Vida".

So I have a cry and send this blog into cyberspace knowing that there are others out there too who don't want to lose him. Thanks.

I had a dream... from a friend

Hey Lindy and Chris,

I had a dream on Saturday night. Maybe a vision... I don't know how God works...

I was with Ben, we were mucking around in the shallows of a swimming pool. The water had a gold glint to it as it reflected the sunlight...it had a sandy bottom and there were small palm trees around. I'm not sure how, but at the same time we were in a gathering of some sort, there were lots of people all around...we couldn't see them, we could only hear them. They were all singing...not exactly sure what...but I KNOW the voices were worshiping God.

Ben and I were just chatting about his cancer and his death. I asked him if he ever thought he'd get through it. He told me "Nah, I never thought I'd make it, I always knew I was going to die." But he was OK with that...he was at peace. I continued to ask him questions, but someone had started a game of volleyball (or something) in the water nearby, and he wanted to play, so we left our converation there and played the game.

"It is cancer!" - from Lindy

I loved reading the pudding blogs. I’ll have to think about another recipe favourite of Ben’s. I think the guys who have lived with him might say Spaghetti Carbonara. I bet that has loads of variations!

I read in one of Chris’s latest blogs that it was about one year ago that Ben told us ‘I’ve got cancer’. I’d like to say (with humility of course) that Chris wasn’t even in the country when Ben announced it!

I never heard Ben say ‘I’ve got cancer’ in the early days of his diagnosis. He told me ‘It's cancer’ and I said ‘You told me a few days ago that it might be cancer.’ And he said ‘It is. It's cancer.’ I believe that he didn’t think ‘he had cancer’. Like the rest of us, he believed that the lump on his leg was cancerous.

It was also about a year ago when he was at a holiday house with friends for the mid-year Uni. break, that a good mate arrived after most of them were already there. He entered the holiday house in his jocular manner, greeting everyone and saying loudly to Ben;

‘Hey Ben! Hey; how’s that purulent, pussy, cancerous looking sore of yours?’ And Ben responded instantly with a quiet ‘It is cancer!’

I can’t repeat what the poor mate said in return ‘*&*%’ but he was loudly very upset. This mate and his wife were two of the most supportive and empathetic of his friends throughout the next five months of challenge.

It still feels like it could have been yesterday and all we have to do is reach out and grab him back. On the other hand it seems like forever since we’ve seen him.

We’re so glad so many of you still remember him and care too.

What happens if...

Our NZ friend says... "What happens if you make it in a mug with gluten-free self-raising flour and are stupid enough to add baking powder as well! I have a few gluten free friends and have slightly adapted the mug recipe for them too. The answer is..."


I'm not sure what a 'gluten free friend' is. Maybe it's a New Zealand thing: do they make gluten free people there?

Meanwhile on a Ben note... Lindy and Matt and I (Chris) went to the Solomon Islands for a week last week: for a preaching conference and some time out. It was interesting how it helped to be in a place where Ben wasn't. If you know what I mean...

A year ago... (from Chris)

It's almost exactly a year ago that Ben announced "I've got cancer" in his matter of fact way. The small lump on his leg that was thought to be a cyst was diagnosed as some sort of cancer. But there are all sorts of cancers and my response was "So what does that mean?"

Little did any of us know at the time what lay ahead and that he would be gone less than six months later.

Chocolate slinging match

Well, the chocolate is starting to fly: various recipes are coming in and yes, 'NZ friend' has given us her chocolate-pudding-in-a-mug recipe too. All the details can be found in the comments section on the original blog immediately prior to this one. Just click the comments link to see them. Ben would have liked a food fight.

Chocolate plagiarised(?) pudding - from Lindy

Ben texted me once from somewhere in Victoria when we were still in Tucumán to ask for 'the choc. pudding' recipe. I've also had international phone calls and emails on the subject. It seemed that he never quite got around to writing it out himself.

I have always and only used the PWMU or Women's Weekly 'original' and Ben 'bettered' this by looking up the recipe on line. He then sent me the 'improved' recipe and said that I would find it better than the recipe I always used. He was right. I haven't looked back :-)

I presume these recipes are all public domain and so shall proceed with what must be just as old as Vegemite!

Pudding
60g butter
1/2 cup milk
1 teaspoon vanilla
1 cup SR flour
3/4 cup castor sugar
1 tablespoon coca

Sift dry pudding ingredients into a mixing bowl or whatever you have... Melt butter in microwave until liquid. Add milk and vanilla to butter. Pour onto the dry ingredients and give them all a belt around with a wooden spoon until the mixture is a nice creamy brown colour. Grease an ovenproof dish; the deeper and narrower means the pudding will have more sauce rather than it drying up.

Topping
3/4 brown sugar (I often use white as I often don't have brown in the cupboard)
1 tablespoon cocoa
2 cups hot water

The topping was Ben's revolutionary change. He said to mix the three ingredients together in a jug until the sugar and cocoa are dissolved in the boiling water and there are no lumps. Pour the liquid over the back of a spoon and onto the uncooked pudding mixture. Make sure your oven is nicely preheated to moderate and put the pudding in. Keep an eye on it but it should be ready in forty minutes or so.  

A challenge...
Perusing my email quickly before sitting to write out this recipe I saw that there might be the beginnings of a Chocolate Pudding Challenge. A dear friend claims that not only does her mother make the best chocolate pudding ever but that this friend herself has worked out how to make a single-serve self-saucing pudding in a mug which cooks in a few minutes in the microwave! The real sting of this challenge is that both mother and daughter are New Zealanders! Are we just going to take this cross-Tasman one-upmanship? Let's hear from those who can better that. And yes, dear NZ friend, we will publish your revolutionary pudding-in-a-mug if you send it to us. Ben would have loved that one.

Tennis - sort of... From the grandparents.

Once upon a time...

These memories are timeless now. Always in the present.
Ben. Benny, I say each time I pass his photos on the table.

It was decided, when all grandsons were here at the farm, to go to the Gundowring tennis courts for a hit. Some of us had a bit of an idea of the game, but none were truly competent. Some hadn't hit a tennis ball for at least 20 years. Some had hardly held a racquet. But Ben quickly got us all into the swing of things, enthusiastically keeping score, commentating, and conducting affairs as if we were competing in the finals of the Davis Cup. Any contact with the ball was enthusiastically acclaimed "Shot!!" in a loud roar. Most of us were doubled over with laughter at the Prince of Clown's performance. The tennis was necessary for the commentary, but without the commentary the tennis would have been quite forgetable. Ah Ben.

Cerro Torre-Patagonia-2005

It's six months today since we said goodbye to Ben. Half a year on and I still look at his photos with a dazed look and wonder ... wordlessly ... and sniff away the tears.

Chocolate pudding?

Ben loved Lindy's chocolate pudding. But it was a tricky one... How to get the balance just right? The culinary danger is that it will either turn out dry and sauceless or an island of pudding in a sea of sauce. I'm not sure where Ben got the idea from but he came up with a plan. So stay tuned while I encourage Lindy to put "Ben's new improved chocolate pudding recipe" on the blog...

Tea anyone? - from Tim

Ben was conscious for about five days in ICU. For the first few days he wasn’t allowed to eat or drink anything except what went in via the tube.

On the third day the doctor announced that he was allowed to eat normal food again. It was just after lunch so he assumed he would have to wait till dinner time. But the nurse from the patient next door came over with an untouched tray of food because his patient wasn’t allowed to eat it. The tray had sandwiches, soup and the ingredients for a cup of tea on it.

Ben ate the sandwiches but was advised to stay away from the soup. When he had finished them he asked Dad to make the tea up for him. Dad looked at him a bit strangely but complied with the request. “What do you want in it?” Dad asked. “Just chuck it all in,” Ben replied. So Dad put the water, tea bag, milk and sugar in the cup and passed it to Ben. As he started drinking it he looked over at the nurse with the smile of a naughty boy and said, “I never drink tea.”

I don’t know whether this was Ben desperate for anything he could get his hands on, or if it was just him enjoying anything put in front of him, but either way something so small seemed to entertain him despite the circumstances…

Tim

Home schooling in Tucumán

Our larrikin son - from Lindy

Our larrikin son. Our big hearted, broad visioned, imperfect and

beautiful son. We feel diminished without him and the world seems
diminished without him. His capacity for forgiveness and his passion
for resolving conflicts is sorely missed. Couldn't there have been another way?

When it's warm and sunny I can hear you laughing and see you in the waves
or rough-housing on the beach. When it's cold and grey I miss you more; the
bleakness mimics me. When it's cold and crisp and the sun is thin and bright I
see you on the slopes, the rush; the joy and freedom of the power and speed
and risk. Your life so full of everything except regrets. Your passion never
left you. You lived and died with courage.
CSB we agree.
CSB.

5 months on

Five months ago today... and I still often find myself in a daze 

of incomprehension as I think about our last six months with Ben. 

How could those first inklings of bad news turn so quickly 

to missed classes, radiotherapy, hospital visits, grave concerns, 

chemotherapy, severe pain and morphine drips, intensive care, 

coma and a funeral? 

I don't know. It feels like a dream at times. Is he really gone? 

And as I ask myself,  I know it's true. 

The shock hits again and the tears return.

Chris

A very private pain - from Adrian

Dear Chris and Lindy,
I wonder if you'd send me a picture
of Ben
when things settle down -
not on his own -
I never think of him on his own
but always with Tim
or with his brothers
or with you all
He was always with people.
I can't imagine the pain of losing
your baby, your little boy
your clunky teenager
your strong son
but with four brothers
my heart hurts
a very private pain
hard to know with whom to share
I dare not burden you, or ask your care
wrung out in the giving
Oh wretched pain!
Do you get on with life and somehow dishonour him?
Or always weep?
He, lover of life, would never have you so constrained
maturely sad he knows
it can never be the same
always amputated
sending messages
intending deciding feeling
knowing
but never whole
until we join him
on the other side.

Adrian Lane
Carlton,Victoria
December 2008

I remember...

... when Ben borrowed our Sprinter van
about 4 years ago in Tucumán.

Then one of those torrential downpours
hit. The sort that the local boys anticipate
by filling the storm water drains with
empty plastic bottles, just so the roads
will flood and they will earn a peso or two
pushing stalled cars out of the flood.

Ben thought the Sprinter would go
through almost a metre of water. It
didn't. Water went into the engine
and this bent connecting rod was
the result. It took a number of local
boys and more than a peso to push the
car all the way home.

More thoughts about the paradox of being and not-being and time

Unlike the future, the past is so fixed. There is no changing it. It's
set in stone for good, or for ill. Yes, it can be reinterpreted,
forgotten, forgiven or misremembered. But not changed in its 'having
happenedness'.

As for the future, we mostly believe in the future; in its openness
and possibilities. We believe, perhaps naively, that we can forge our
future. And for those of us who do believe that, then the future is
mostly not a threat. For Christians too the future holds hope and
confidence.

The past also has an ambiguous presence in the here and now. It is
presence because all that we are today is rooted in the past. Without
our past we are nothing now. So the past is overwhelmingly present
today. But at the same time the past is so thoroughly past and passed:
in a second it is gone and I cannot change it, go back to it, erase
it. And I cannot hold onto it, which of course is what we want to do
with Ben. Just to touch him again and to hear his voice. To have him
alive in the present and not have him as a past presence.

Yes we walk by faith. But we admit that our eternal hope of reuniting
with Ben is of a different order and only understood dimly from this
side of the veil. And right now - to confuse a metaphor - we'd rather
have the devil we knew in his tangible earthly body. We don't want him
as only past and future, we want him present too. Is that
faithlessness? I hope not. Just human anguish speaking out.

In the present he is not here. He is so gone. Untouchable. Yet so
present in all that we are and think and do. I still get confused
about how many people should be around the table when we are "all" at
home. This must be part of the offense of death - the paradox of the
presence/absence of the dead one. The unfathomable paradox that makes
us wrinkle our faces in pained perplexity and cry out "No, it can't
be!"

Chris

PS If you are a student of Heidegger or Augustine or Gadamer or just
the school of hard knocks, and you take offense at my theology or
philosophy, feel free to comment on these rambling thoughts as I try
and make sense of this part of the journey. Of course the blog owner
reserves the right to only publish comments that seem useful and
edifying!

From my reading today: Gadamer says, "That a proposition is more than
the representation of a given objective content means, above all, that
it belongs to the whole of a historical existence and that it is
contemporaneous with everything that makes its presence felt in it."

If that sounds complicated, try reading it slowly in the light of any
proposition that matters (like, "Ben died four months ago." or "God so
loved the world...") and you feel the weight of history and personal
experience coming into the present to fill out the enormous meaning of
propositions such as those.

Excuse me God

Excuse me God?

Oh hi. It's Lindy here.

I'm sorry to interrupt you but I was wondering...

It's a bit awkward...

The thing is, um... I think there's been a mistake.

I know it's a bit rude of me but I thought well, maybe you were a bit busy
half way through last year and you got Ben mixed up with someone else.

No. Of course that doesn't mean I think someone else instead of Ben should
have gone through it.

I've been thinking about it a lot and I really think that there was a
blooper somewhere.

An administrative error perhaps? New PA or something?

I'm running out of credit so I'm going to have to call back but would you
have a spare second or two to look up your records and see whether there was
a mistake and that Ben is after all supposed to live to be a father and
grandfather?

I know that you are ok at reversing things so I thought it was worth asking
you on the off chance that there has been a giant mistake, and you hadn't
realised it, but you'd fix it up straight away now that you knew.

Please please please don't forget to check for me :-)

When better is worse and worse is better

It's over four months now since Ben died and less than ten months
since he was first diagnosed.

I'm a bit confused really. My problem is that when I feel a bit
better about Ben's death I feel worse and when I feel worse I feel
better. Mmm... sounds like I am confused doesn't it? But perhaps it
all makes sense. I think it goes like this:

As time goes by, my experience (and I only speak for myself) is that
my moments of anguish and tears are getting more spaced out. So on
that score, I'm feeling a bit better. But as I reflect on that, I feel
the pain of letting go of Ben and not feeling the intenisity of pain
that losing him deserves. If I don't feel that intensity then it seems
he's further away and I am not valuing the relationship as I should.
And for that, I feel worse. So when I feel better I also feel worse.

And when I feel worse I feel better because the most painful moments
are also the moments of feeling closest to Ben: remembering his voice
and life together and moments in hospital, particularly the last few
days.

So grief has its stages and ambiguities doesn't it? And for the
counsellors amongst this blog's readers: don't worry, I'm not racked
with guilt for not feeling worse... but thank you for caring!

May this Easter be a time of thinking about resurrection and the One
in whom Ben trusted for his own resurrection.

Chris

A long time between posts

Dear Friends,

It's been a long time between blog posts hasn't it? Two weeks in fact.

Actually, I put up a photo a a few days ago but took it down a few
hours later because it caused too much heartache.

I guess the lack of blogs reflects the fact that not much has changed.
While Ben's absence is constantly with us and there are still things
to say, it seems that most of what we might say has already been
said in the blogs below.

Someone asked me recently if I had days where I didn't think about Ben
or feel the pain. I said, "No... hours perhaps, but not days." And I
think for Lindy it's minutes maybe but not hours.

Someone else who has lost three babies talked of a 'new normal'. It's
not that you go back to normal, she said, but that you adjust what you
expect normal to be. That seems to make sense for me at present:
normal at the moment (and "for as long as it takes"), is like living
with a weight on my shoulders and an unseen but constant shadowy
companion that dampens my spirits and makes me more prone to
frustration and grumping at Lindy and the boys.

So now I go back to my study and think of Hans-Georg Gadamer's
descriptions of the 'finiteness' of human existence. And I'm reminded
of St Paul's words at the end of his chapter on love in his first
letter to the Corinthians: Now we see things only indistinctly like a
blurred image in a mirror. Now what I know is incomplete. But one day
I will know fully, even as I have been fully known by God. Right now
three things remain sure: faith, hope, and love, and the greatest of
these is love.

Thank you for listening!

Chris

From Lindy

Ben is always in our thoughts and our dreams and we often find
ourselves saying 'I remember that Ben…'

At the same time we are thinking and dreaming and talking about our
four healthy (thank God) boys. We hope and pray that they don't feel
second class because they didn't die. :-( That would be awful wouldn't
it?

Sometimes it seems so long ago that I knew Ben. Sometimes I look at
his stuff and I wonder if he was ever 3D. At the same time missing
him intensely is something we all live with in our different ways.

I have a friend who has been through something similar and she
writes me letters and always signs them off with 'Keep looking after
each other'. So far so good. It would be too easy to let a chasm form
as we try and process our pain in different ways.

'Shameless marketing' blog removed...

This blog has been removed for fear that it might have been misunderstood... always a danger if you don't know Chris's quirky sense of humor.

Meanwhile we wrestle daily with the paradoxical conjunction of Ben's constant presence in our thoughts and his such final absence from our lives.

Our sincere thanks to so many people for walking this road with us.

3 months... From Tim

Three months, three weeks, three days, three hours; much difference?

Three months after purchasing an item of technology, its price is
severely devalued. The same can't be said about grief. There isn't an
equation for grief; it's not as mathematical as some would like it to
be. Grief isn't necessarily inversely proportional to time past.

For me, Ben's death is similar to what I imagine an amputation might
be like. An amputation involves losing a part of yourself. After this,
one has to re-adjust to life without what has been lost. This is the
stage where things are at now. Even though people are independent
beings, strong friends form part of who you are and for this reason
losing someone is like losing a part of who you are. Once this has
happened, you have to make adjustments in order to be able to cope
without what has been lost.

I've heard that when people undergo an amputation they will sometimes
forget that they have lost a limb and will perform actions as if it
was there, such as taking a corner wider than necessary to avoid
hitting the non-existent limb on the wall. In the same way, I find
myself forgetting that Ben is no longer around and when I see
something that would have interested him I go to pull out my phone to
message him and then I get that helpless feeling when I remember that
there's no way to communicate this with him anymore…

Time

Time heals they say.
But time is also a river that sweeps us inexorably on,
Away from the past, from Ben.

We tumble through the rapids, bruised and battered,

Gasping at times for breath.
Longing for peaceful water left behind.
Can't we pause for a moment, or better, go back?
To savor the past and not to forget.

For as long as it takes

"For as long as it takes" is the title of an excellent article on grief and the myth of closure. It can be found here in last Sunday's Age.

The article talks of the "aftershocks" as a new wave of grief is triggered by memories or reminders. For me the aftershock comes with a start - a bewildered lostness and a physical knot inside - when I see photos or think of Ben and then suddenly realize that he is really gone. And gone so far away. I would walk 500 miles just to see your smile again. So I cry, and then do the next thing that has to be done. For as long as it takes.

One Weekend-from Keith, written after the funeral

I listened to two fathers speak of their adult children this weekend.
One not used to speaking in public, we laughed and interjected.
One a leader of men, we cried, silent.

A daughter's wedding.
A son's funeral.
Same age.
One right.
One seemingly wrong.
All with faith.

Both with reflections of birth, childhood and teenage years
space of their loved first born.
Pride in their adult child, choices made, successes achieved.
Words, attitudes and body language all communicating in volumes.
Unconditional love.

One with absolute delight walked his daughter up the aisle, watched as she
space left in the safe arms of her new husband. Life unfolding.

One with uncontrollable grief walked down the aisle behind the coffin of his
space son, watched as he was carried on the shoulders of six strong
space head shaven mates. Life closing in.

I know which father I would rather be. Yet God the father lives with the
space experience of the second father, not of the first.
A glimmer for the weeks.

Thanks - from Lindy

Some people asked me to expand on what we are grateful for. So here it is...

There are so many things about Ben's life that I am grateful for. I thought that I would limit this blog to the last six months and that horrible 'C' word. It is amazing that in such a traumatic time there were very many things to be thankful about along with treasured memories noone can take away.

We are thankful for;
>>> His gentle death which he had talked about. Just before he was intubated for the second time (the day before he died) we did a hypothetical 'just in case' scenario while not really believing that this would be our last goodbye. Chris took photos of messages Ben sent to a few people via hand gestures J. He told us then that to 'go' from an induced coma would be good because he knew about the coma state and that he would be peacefully unconscious and simply not wake up. He said to die that way would be the best. Less than 24 hours later his dying happened just like that. He never woke up.
>>> We were with him as he died and were given time and privacy during and after his death.
>>> He died being spared many more months of terrible health to then die anyway. As we lived a 'normal' summer holiday period, many times I would thank God that Ben hadn't had to survive disappointment after disappointment as he struggled to survive and couldn't do the things he enjoyed most like sun, sand and surf, good friends, lots of laughter, all done with high spirits and high energy levels.
>>> He missed out on the health complications involved in preparations for the Bone Marrow Transplant and then the inevitable and life-threatening side effects once it was done. He missed out on experiencing getting left behind as life kept moving people forward but not him as he remained debilitated and frustrated in hospital. He was unable to even stand after two weeks in ICU. He was weak and we were thankful that he didn't remain in that state any longer.
>>> He said he wanted to go home and was 'over' hospital. It was less than 24 hours when he moved on to his true and permanent home.
>>> Despite feeling pretty lousy he went to the Uni. Church weekend camp and was able to drum in the music team. Drumming had been an important part of his life for many years. It was the last time he drummed as far as I know.
>>> Pete Newmarch's 21st. That weekend was like a special opportunity that Ben was given. He had a 36 hour period of time when he could come home, sit on the driveway in the sun with Sallie and that night go to Pete's birthday. He checked with Pete prior to going to make sure he wouldn't be up-staging him. Pete had no hesitation. So Ben was able to be with lots of his friends after one month of being in hospital and seeing very few people. As it turned out that night was the last time he saw most of his friends.
>>> He was able to farewell his cousins and extended families with special and individual times with them.
>>> The existence of mobile phones and SMS. Ben was often too weak or in too much discomfort to speak on the phone but he would often respond to an SMS from friends or family. It kept him in the loop and kept us in touch with his reality.
>>> Ben went severely down hill at a time of year when Tim could spend hours at the hospital with him. It was a time for Tim to remember and treasure as he was able to be a significant support and affirmation for Ben in his last days.
>>> As Ben's health deteriorated hospital became the place he wanted to be. Once again we thank God for Box Hill. We visited the Alfred Hospital's ICU soon after Ben had gone and were overwhelmed at the size of it and the apparent lack of personal involvement of staff with their patient. Everyone knew Ben and knew us and that involvement was a great comfort to him and to us.
>>> He trusted the Doctors who cared for him in his short illness. He had respect for his specialist and was confident to follow his suggestions. The hospital registrar he thought was 'perfect'. She spent many long moments explaining technical things to Ben at different stages of his illness.
>>> He was treated with dignity and respect by all the staff at Box Hill. Plates of hot chips and Big M chocolate milk and access to the 'unoficial menu' were small joys that kept him going.
>>> So many friends who stood by him. We arrived at the church for Ben's funeral 2 hours early at about 12 midday and the church was buzzing with loads of Ben's friends who were preparing everything for the service.
>>> The funeral itself was a tribute to his life and faith and his manner of dying. The crowds of people were a comfort and encouragement.
>>> His trust in God. He firmly believed that God had his life under His control and was therefore uncomplaining and peaceful even as he grew sicker and the disease took over his body.
>>> The prayer of his heart was to be useful and for his life to have had a positive and powerful impact on others' lives and beliefs. It is an ongoing encouragement to hear and read of many lives challenged and changed for good.
>>> Wonderful times of both laughter and pain in the last six months. Moments that could only happen because of the increasing threat of the lymphoma.
>>> He watched a last video in ICU with Matt a few days before he died and a different one with Tim, Andy and Pete; all of them squashed up in front of a small TV monitor in Ben's small ICU cubicle.

This is a beginning but honestly, there are heaps more things to be thankful for. We don't grieve with the blackness of broken relationships or unresolved issues between us. Our grief is painful and wistful but with no regrets. For these things we are mega thankful :-)

The horizon: bushfires around Melbourne

Last night I took some photos of the northeast horizon from Doncaster. The best photo is on the ABC website here. Others can be seen here. I could tie the photos in with Ben... or I could just say this blog post is off the topic! For those readers not in Melbourne, yesterday was 46.4 Celsius and we are experiencing some of the worst bushfires in history. Tragically, many people have died and hundreds have lost homes. (If you wish to use one of these photos please contact me first.)

Getting over it?

A friend who we haven't seen for many years writes:

Chris and Lindy,

I find that I am still thinking about Ben and reflecting on your loss. My girls have received an increased number of hugs over the past weeks - hot weather permitting. I found that checking the blog every now and then I was enriched by the love and compassion expressed by so many people. Reading Tim's comment that it felt surreal and Lindy's struggle to imagine how time can heal I had a thought I would like to share with you.

My grandmother lost her first husband to appendicitis when she was only 25. She had two small boys and was pregnant with a little girl who died soon after she was born. My grandmother remarried a few years later (to my grandfather) and had 3 more children. She played golf, tennis, croquet & lawn bowls, was an early feminist, loved the opera & ballet and was a wicked solo player. She had an enormous zest for life, and a large circle of friends (most of whom were 20 years younger than she was). When I was in my 20's and she was in her late 90's I would visit her most weekends, in her last years she started reminiscing more and would talk about the wonderful times she had. One day she was talking about how she met her first husband at 16, how her parents didn't approve and she had to sneak out to see him (difficult when you are 15 miles apart) and then how difficult it was managing the farm after he died. Thinking how full her life had been I tactlessly remarked that she had "obviously gotten over him", but she replied "oh no my dear, I've never gotten over him". I could hear the grief in her voice and I realised that even after 70 years her love for him was strong and her memory of him had not faded.

So, never fear that you will lose your connection to Ben, he will be in your hearts always.

With love,
Sue.

Thanks Sue!

Today's mail

HGG

The ideas of Hans Georg Gadamer are not easy to understand. But it's a task I have set myself for my doctorate. I've already made use of him anonymously in the blog on historical consciousness (click to reread it). But this morning I read the following and it rang true as I think of the 'experience' of losing Ben. Gadamer says:

"Real experience is that whereby man becomes aware of his finiteness. In it are discovered the limits of the power and the self knowledge of his planning reason. The idea that everything can be reversed, that there is always time for everything and that everything somehow returns, proves to be illusory. To acknowledge [this]...is to have the insight that all the expectation and planning of finite beings is finite and limited."

It's so easy to live as if life is full of endless possibilities and as if our planning and reason will find solutions to all problems. Life does have wonderful  times and possibilities. But if we don't also learn how finite and fragile our lives are then we are bound to be disappointed. It seems to me that experiences like Ben's death can teach us these things so that we are more careful about what we value and about how we will spend the time that is given to us on this earth. 1 Peter 1:24-25 comes to mind.

Sorry for the sermon!
Chris

A hole in the ground

I caught the Royal Parade tram to uni this morning. The crane is up now, towering over the hole in the ground. The hole that Ben watched them dig on his way to and fro as he studied. He knew the excavators by name and had a favorite. This is the hole that he marveled at as he considered being part of its future: a world class neuroscience facility on the cutting edge of knowledge.
(Thanks to Stu for the photo taken for Ben when he was in hospital so he could keep up with progress. Stu and Ben used to chat by the hole.)

Life goes on

Life goes on. People move on. Life moves people on.

We too move on. Pete and Matt go back to school tomorrow. It's the start of a
new year with different teachers, different classes and for Pete the
beginning of Year 11 and VCE. Tim starts Medicine (yippeee) tomorrow.

And Ben is not here and won't ever be part of these significant changes.

A new surge of grief hits as we come to terms with 'the future' (tomorrow)
as a place where Ben has never been and will never be. Relentlessly and
unforgivingly time and the machine called life leave him further and further
behind. While this is 'time heals' for many, for us 'time' probably means
more like years rather than weeks. We don't want to move on and lose the
remaining and tenuous threads of contact with him.

We still give thanks though. Thanks for the gentle death he had. Thanks for
the suffering he was spared. Thanks for his full and fantastic life. The
list could go on. If you want a fuller list let me know and I will post one.

Hope 2009 is good for you.

Lindy

A Transition - a grandfather's perspective

The loss associated with Ben's passing is still acute, but I find my mind is going through a period of transition, from where grief was a burden, to a place where I am viewing his life as an inspiration.

I would never have imagined that a grandson could become a role model for a grandfather, but the courage shown by Ben is causing that process to evolve. Not just the courage he displayed during those last awful months, but the vitality and the way in which he dealt with the challenges of his life. For me of advancing years, the strength of character displayed by a grandson is a source of inspiration for those challenges that might lie ahead.

Memories of Ben's energy were with me this week as I viewed the wreckage from a severe storm. A garden strewn with trees and branches, fences down under fallen trees means much hard work ahead. My thoughts went to Ben who would have seen the exercise as a challenge, and I imagined that I heard him say, "just get on with it Gumpa!"

As time has elapsed since his passing I am beginning to see Ben in the image of Jimminy Cricket, not just on my shoulder but on the shoulders of family and the many seeking strength in adversity. That image brings me a sense of comfort as his courage and energetic personality will continue to be with me, whereas if I allow my grief to be a burden, then I risk setting him in history.

The moral of this story is that,"you are never to old to learn", and that grandsons can become role models for grandfathers.

Ralph, ( aka.Gumpa).

The Autopsy Report

"Autopsy results? Gosh, what do you want to read those for? Won't it be just like reliving those last couple of months?"

Well in one way, yes. The pain of the finality hits as the truth of Ben’s disease screams out at us from the autopsy. On the other hand we can be at peace, knowing that our death-bed decision to turn off Ben's medication and let him move on was the correct one. The report reads: "Following discussion with the family, treatment was withdrawn on 8/12 due to poor prognosis and lack of response and the patient passed away."

Saturday 6th: Ben's day out in his bed where he woke up in the sun and the breeze. "This is perfect" he said.

Sunday 7th: A shower in the morning but Ben's body was deteriorating so the doctors recommended putting him into a coma on a respirator again. He agreed.

Monday 8th: At 3am Chris went to the hospital as Ben wasn't doing well. About 9am the doctors told us that his condition was worsening and it looked like we might have to let him go. "I've got some pretty sick patients in here but Ben is by far the worst. I'm so sorry, this is such a shame. We can make some small adjustments but there is very little we can do."

By lunchtime the respirator was up to 100% oxygen but Ben's blood oxygen levels were still dropping. His temperature was high and he had ice packed around him. His body was only holding on due to the respirator, the oxygen, the blood pressure drugs, and the constant infusions of other drugs and blood products. "Numerous systems are in failure. He will soon start to develop small clots in his limbs, which will lead to necrosis in his hands and feet. His digestive system isn't processing any food. Despite glucose infusions his glucose levels are dangerously low." Earlier they had dropped to zero where the brain cannot function for much more than a minute without damage.

We consulted with various doctors and made the decision. Then we waited for Matt to arrive from school and said our goodbyes. The oxygen level was turned down to normal (21%) and the blood pressure drugs were withdrawn.

It was a terrible time watching his vital signs slip downhill so immediately. In less than fifteen minutes his heart stopped.

In a covering letter, Ben's specialist said he had no doubt that the rapidly progressing lymphoma was the cause of his death. The specialist said that from all the clinical signs and the findings of the post-mortem we could be confident that Ben could not have recovered due to the underlying lymphoma.

For those who are interested, we’ve copied a few details:

Cardiovascular system: nothing remarkable and the heart was a normal weight. Combined kidney weight was 500g, normal is 230-440. Left lung was 1109g (325-480 is normal) and right lung was 1168g (360-570 is normal). Liver weighed 3000g (normal is 1500-1800.)

The conclusion of the report refers to "a 23 year old male with NK/T cell lymphoma who died with neutropenic sepsis [an overwhelming infection that in Ben's case involved multiple organ failure, along with a low level of neutrophils - a type of white blood cell that fights infection] following a lack of response to chemotherapy. Lymphoma was found extensively in the bone marrow, lymph nodes and liver. The cause of death is diffuse alveolar damage in the setting of disseminated lymphoma."

Lindy

500 miles

Driving away from another place where you used to be. Another reminder
of your absence in a familiar place where you once felt at home. And
the people ask how we are going. I say: Fine. As expected. How can we
be?

We carry on without you, every day another step away-one more
day away from the you we knew.

Your music plays as I drive. "I would walk 500 miles" takes me back to
Tucumán, home schooling, jury-rigged physics experiments and "I hate
maths" (but you won that one) and cats on your desk as you studied and
"500 miles" blaring from your speakers.

I would walk 500 miles and I would walk 500 more just to see your smile again.