I offer instead this from Peggy Rosenthal’s blog at Image (http://imagejournal.org/page/blog/chatting-with-debbie-blue):

“Living with illness that stabs at my psyche as much as at my flesh, I’ve been clinging these days to the words of Jean Vanier, founder of L’Arche communities for people with developmental disabilities, as quoted by Stanley Hauerwas in The Christian Century (12/8/08). Woundedness is ‘inherent in the human condition,’ says Vanier, and ‘what we have to do is walk with it instead of fleeing from it. We cannot accept it until we discover that we are loved by God just as we are, and that the Holy Spirit, in a mysterious way, is living at the center of the wound.’”

Also, I wonder if you have read “Autobiography of a Face” by Lucy Grealy. I will not be surprised if you have, and I would be interested to read what you think of it. I don’t think she had a conscious mystical way like you, but it is a beautiful book.

And thank you for your recent link to my blog. Knowing that you are reading it gives me a little courage boost, as I have a lot of trepidation about posting my more openly theological writing.

It is indeed amazing to discover that you have been coping with an illness such as this. Your spirit and creative energy are the things that come through when one visits your blog, and the times I’ve been here, I have not picked up on the slightest self-indulgence.

My heart goes out to you for your suffering, but your beauty is far larger than the changes to your physical self–as the above comments from people who may know you far better than I, attest.

The world is cruel, has always been so. It’s unfair that often, those who most need our support and affirmation don’t get it– either because we don’t choose to give it, or because their infirmities are guarded or hidden from us.

I give you my love, the love of one full person to another (in spite of our wounds) for your undiminished spirit. You have great courage to make this disclosure on your blog, even to us relative strangers.

If there were anything I could say to take away some of your pain and anxiety, I would say it. But I don’t know of that thing. SO I will just say “BRAVO.” Bravo to you for being you: a courageous and creative soul.

Hugs ((((((((((((((( ))))))))))))))

But the power in this is our willing submission to our isness, being who we are. I know that I have failed, on a grand scale, and I have said to the cosmos, “I, failure.”

Someone said something like “I thought life was about preparing how to live, now I see that it’s about preparing how to die.” At first I thought, that’s pessimistic, but I’ve come to agree with it. Because death is not simply about loss, but rather its opposite, about coming to life. The deaths you are going through – to your dreams, hopes, all this egocide, must be excruciating.

I think Paul is wonderful here, “Not that I might live but that Christ might live in me.” Reality is a kind of inversion of our western materialism.

Sybil, from Cape Town, my heart is with you. Please come and visit us – I believe you know my fellow traveller and painter Andrew (fakeexpressionoftheunknown).

I’d like to share a piece of prose with I wrote 2 years back: http://soundandsilence.wordpress.com/2007/02/07/you-told-me-your-name/

than you for being such an inspiration and for opening doors for others that might feel the same way. all my respect and love to you.

I hope that what I am about to say comes out in the way I intend. Please know that I am speaking the truth. When I first saw you, I was shocked by your transformation. James, who had never met you before, was however not aware that there was anything different about you, outside of the range of the normal. Yes, scleroderma has dramatically changed your appearance, but no, you are not a ‘freak.’ Your hands of course don’t look ‘normal’, but the important thing about hands is what they can do, not how they look, and yours can do amazing things.

I know that all of this is very easy for me to say from where I sit now, but I do know a bit about it: when I was a teenager I was extremely skinny and had scoliosis, so I looked freakish. People stared at me and I was afraid to leave the house. My aunt told me that it embarrassed her to go outside with me. Someone in the subway once said that he didn’t know what I was, and his friend said that he just knew I wasn’t human. Naturally these things completely mortified me and I have never forgotten them. I found that if I imagined myself completely naked and exposed , it gave me more confidence, oddly, so that is what I did to cope. I think that you look within the bounds of normal, and that is something to be grateful for.

Please know that I love you and admire you.

There isn’t much I can add except that my heart goes out to you and it is always wonderful to meet somebody prepared to be themselves in such a world as this. That’s real beauty.