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of us falls into a sleep it would be okay. To keep conversation in line with what our hearts and not heads are thinking. To listen to my favourite classical music albums/pieces, whether in the background or other times, as the focus.

To look out on nature (the Alps hopefully) or a picturesque view and just hold one another or listen to the music quietly. To just lie down at times holding hands, breathing.

To go for a walk in silence breathing in the clear air. To drink hot tea at a fireplace and just ponder whilst staring into the flames. To talk of how we will hold each other until we meet again.

From: Sandy Coffey

Sent: Wednesday, 8 July 2009 10:55 AM

Can you tell me what it feels like to finally have some control over your life?

I know you don’t want to think about it, but if you don’t get the “green light”, what will you do?

From: Craig Schonegevel

Sent: Wednesday, 8 July 2009 5:47 PM

If I don’t get the “green light” I will make a plea to Mr Minelli. Even if it means that I will have to fly over to Switzerland to have a meeting with him. I will just talk from the heart to him, not a planned speech, just from the heart and ask him to listen with the heart. If this does not work I will have to find a doctor who has a heart for my suffering and wishes to help me privately.

He must act out of free will, it will be a great risk to his career and future, but all I will be able to say from my heart to him is that my soul will be eternally grateful as I hug him with thanks. I will sob in my heart with thanks.

For the first time in my entire life I now can be in the driver’s seat. That brings peace, comfort, certainty, rest and bliss. The “green light” has not yet appeared and that brings uncertainty but once it has shone, I will follow it to this state of inconceivable bliss.

From: Craig Schonegevel

Sent: Sunday, 12 July 2009 6:48 PM

Sandy

Just to let you know…

Today I took down more beautifully framed pictures of my past coping mechanism (swimming) from my wall. I will be buying two poster-size blank cardboards tomorrow and be writing a mantra I have made up to help me cope to get to

Switzerland. My dad walked into my room while I was doing it and seemed angry with me. (I think this just makes the situation more real to him and he battles.) I battle in my own way too and have to do this to cope.

He (my dad) then said I was going to damage the frames by how I was lying them down. (I think he is honestly just battling and not angry with me.) The swimming posters were beautifully framed at Keith Johns. I will be donating them to a charity shop tomorrow and put the personal mantra up. I will use a big permanent marking pen.

This waiting is starting to really get to me and I can only hope I can cope if this waiting must go on any longer.

From: Sandy Coffey

Sent: Wednesday, 15 July 2009 5:20 AM

You spoke about having a girlfriend – can you tell me about your disease and how it affects your hopes for a beautiful relationship with a significant other?

Have you ever felt beautiful? If so, please tell me about that.

Have you ever felt at peace? If so, can you tell me about that?

This question may be difficult: You spoke about being teased and bullied and rejected as a school child. Please can you tell me about that?

Can you describe to me your relationship with your dad?

From: Craig Schonegevel

Sent: Wednesday, 15 July 2009 12:40 PM

I have always (up to a point) believed that love, realistic love, would help mend a heart that has been battered by this disease. That it would shelter me from the cruel world at times of turmoil in my heart, would love me for my heart, a heart that I don’t believe many are able to see. I now realise that maybe I am lucky (if I can have an assisted suicide) that I have experienced love with my mom and being understood.

Craig at 10 months with Patsy

Neville’s favourite photograph of Craig

At 3 months with Neville

Age 5 with Nana

Age 5 at Blanco

Age 4

6 years old

8 years old

Craig with cousins Jason and Clayton

Craig in 1997

A clearly visible fibroma on Craig’s upper arm

© Sandy Coffey

Scars on Craig’s head and café au lait marks

© Sandy Coffey

Scarring clearly visible on Craig’s head

© Sandy Coffey

Scars on Craig’s stomach – the result of 6 operations

© Sandy Coffey

Craig with Sandy Coffey

© Sandy Coffey

Craig and George Irvine

© Sandy Coffey

Sarah Mjebeza and Craig

© Sandy Coffey

Patsy’s favourite photograph of Craig

Craig with Hogan

© Sandy Coffey

© Sandy Coffey

St George’s Hospital, Port Elizabeth, 2008

© Sandy Coffey

© Sandy Coffey

Final family portraits

© Sandy Coffey

Craig and Patsy’s afternoon nap

© Sandy Coffey

A gift for Patsy

© Sandy Coffey

Neville, Patsy and George Irvine on the pier where they scattered Craig’s ashes

© Sandy Coffey

From: Craig Schonegevel

Sent: Thursday, 16 July 2009 7:28 PM

I knew I was different, felt different when I got back from having brain surgery and I needed a nanny with me at school break time to look after me while I was recovering. She was a lovely

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