The Last Right by Marianne Thamm

Author:Marianne Thamm [Thamm, Marianne]
Language: eng
Format: epub
Publisher: Jacana Media
Published: 2013-03-14T22:00:00+00:00

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From: Sandy Coffey

Sent: Monday, 29 June 2009 8:33 PM

Can you describe a “perfect” day if you could have it?

And then describe your day now?

From: Craig Schonegevel

Sent: Tuesday, 30 June 2009 10:39 AM

A perfect day for me?

Sometimes we catch or experience a glimpse of true happiness and fulfilment. The thing is I wish that these moments could be bottled and we could live in that feeling or experience constantly. This is not reality though, and each and every one of us must make the best of what we have at our disposal or what we can do to contribute.

I experience moments of true happiness very differently now to before. When I lie down on my bed and I am free from emotional and physical pain with my mom beside me, for that short while I feel totally at peace and this is what I believe the place that I will be going to will feel like constantly.

So, my perfect day would require this feeling constantly, feeling total love, acceptance, peace, being pain free, being anxiety free and not having to live in the box that NF1 has put my mind and body into where I am limited to a fraction of the person I once was physically and emotionally.

A perfect day would also entail people being understanding and respectful of the difficulties I face and allowing me to cope in the way that is best for me, not what they believe is best for me.

My day now?

Having taken the decision I have has brought me a peace that I have never known. Sometimes I get very anxious though; I wish that things would move faster. I get anxious that I may not get the “green light”, although a large part of me knows that I will.

If I don’t, I have to go for arm surgery, which will have a six-month recovery period. My true self (my spirit/heart) will have a much longer recovery period though. The recovery period is for the rest of my existence on earth, that is the extent to which the constant invasive surgery affects my being.

In a perfect day I could eat normal foods as well as not be concerned about it potentially causing an obstruction in my colon, which ultimately gets me under the knife again.

In a perfect day, I would not have to subject my family to the torment of this disease, because ultimately my mom and dad are carrying the burden as well. A perfect day would entail my heart being held by loving hands that “get” me completely.

A perfect day for me would be lying on the bed at Dignitas and know that peace, to know I was loved by those in my life who matter to me.

On that day I would like to know that I did matter, that I did make a difference. On that day I would like those special few to know that for the first time in my life I have found something that I can do that cannot be taken away from me by Neurofibromatosis.

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