Your midline shift, our lifetime shift

Your world, my world, our world,
Shaken beyond, into another realm,
Twisted, mutilated, beyond recognition.
Isolated from humanity, contained in shock.
Reluctantly your grip loosens, as you begin your sleep.

We see the man, so strong, so you.
External appearance, full of deception.
We crave to turn back time, we bargain,
Some pray for life, some pray for death.
A chemically induced sleep.

Your sleep, the deepest coma provides
Your siesta from reality, from the foreign life awaiting.
Your body wasting, brain bleeding, cascading;
We give you permission to let go.
And yet you continue to sleep.

My love, my world,
Your body, your soul.
Unwillingly handed you over to strangers.
I am powerless, raw, emotionally raped.
As you continue to sleep.

The lives of your loved ones on hold,
Gathered into the foreign room,
Hurled into the capsule of denial, seeking protection,
Disbelief, numbness floods; engulfing, shielding.
And yet you sleep.

We wash, we massage, we gently whisper,
We fill the air with music, aromatherapy,
Surround your room with pictures.
Love and positivity we infuse,
Attempts at protection as you continue to sleep.

Pressure rises, burr holes drilled,
Skull removed, clots suctioned,
Cerebral dissection, no time for reflection.
Shock keeps me calm, clinical, removed.
Multiple medications, so you continue to sleep.

The weeping, the grieving,
The anger, the horror, the adrenaline,
The peaks, the troughs,
The destruction of what we thought we knew.
And yet you sleep.

We are stripped of power,
Disrobed, the decision to fulfil your wishes no longer ours,
Left naked, choice removed.
Maintaining your dignity becomes unreachable –
I unwittingly fail you, as you continue to sleep.

Suctioning lungs, thick creamy mucus,
Fever, heart rate, BP outrageously high,
Sepsis flows through your veins,
Faecal content as vomit spills.
Yellowed by jaundice, I puzzle how you continue to sleep.

Lives shattered, tears spill,
Tempers fly, sorrow fills,
Children grow, time flows,
All marked by the click of the respirator.
As you continue to sleep.

The reality of your prognosis,
They continue stubbornly to deny.
The wish for miracles unleashes my anger –
Surreal that some can avoid the certainty.
I pray – you continue to sleep.

I fear the future,
I seek and cherish the past.
In numbness, I wade through the present,
I weep for lost opportunity, words unspoken.
As you sleep, do you dream?

My love, do you feel the fear?
I wonder about the scars inflicted upon the psyche,
Physical, emotional trauma, remoulding who you were.
Through ‘life saving’ treatment forced upon you,
You fight for life, as you continue to sleep.

My life is full of fear, the future unfathomable,
Your well-being my focus, my obsession.
My life on hold, an unconditional pledge,
Until/when/if the rhythm of your new world steadies.
Do nightmares reign, while you are sleeping?

Undeniable change awaits all who say they “love you”.
The majority will walk away others will run,
A few new friendships cemented, through passion and struggle.
Your midline shift becomes our lifetime shift.
I will never truly sleep while you are sleeping. Read more!

A great December day...

Well, 2009 was another full-on year for Alison and Kev, and one of the consequences has been that it has been hard to keep up with updating Kev's blog. Kev is in hospital in Perth just now, as he had suspected hydrocephalus, but other diagnoses have been made, and Alison will fill everyone in on that soon. In the meantime, here's a piece she wrote mid December about a great day that Kevin had.

'Kevin remains incredibly sleepy, he slept in his recliner from 2 am to 10 am then I transferred him back to bed. Needing to ensure he has no pressure areas and assisting him with food and fluids. Everything is an effort.The doctor’s letter came today confirming the enlarged ventricles and therefore the hydrocephalus; no wonder he feels so bad, to the stage that I am even having to ensure he is turned regularly.

Kev finally got up around 1.30 pm and was in and out to the car. He is wetting himself again, and that in itself tells me things are not good. I did manage to shower him, with lots of resistance, but it was great to get him cleaned up and his hair washed; Paula cut it the other night with her clippers (she is such a wonderful support/companion for Kev and me!!).

Anyhow, this sleepiness had a short interlude in the form of a drive with Tali and then he went back to bed, feeling exhausted.

He got up on his own accord at 6.30 pm and sat on the couch with me and ate his dinner, then was back out to the car. It is difficult for him to walk as much now as he is weaker and has been doing lots of crawling and using the wheelchair when needed. We went to the Dome at his request and he indicated that he wanted a drink and a snack. He was unable to clearly express if he wanted a hot or cold drink, but he really enjoyed some apple pie and a coffee.

I asked him if he would like to visit John, and he was okay about this. As soon as we got there he opened the car door and went into the front lounge – John had the music pumped right up, with Pink Floyd wailing in the air in the driveway and down the street!!

I thought this would be too much stimulation for Kev and that the noise would blow him away, but in he went and John asked him if he would like to watch Pink Floyd on the his new big TV. Well, to my surprise Kev went and sat on the recliner. John turned the music down and Kev eventually indicated for John to turn it back up!! Kev gave us the thumbs up several times to indicate how much he was enjoying himself and he stayed for an hour and a half.

My point is that the brain is so amazing, as is Kev's stamina. He is feeling like crap most the time, but he can put in the hard yards and push himself to get some enjoyment from life.

For me it was lovely to see an almost 'normal' situation with Kev relaxing and really taking in the music.

However, what touched my heart the most was that when we left, Kev embraced John in a long hug and got out the words “Love you Bro”.'
Read more!