Tuesday, November 2, 2010

Meet the participants: ErosGrunk Simoni - survivor

On day two of our countdown we meet ErosGrunk Simoni who was diagnosed with a type of brain tumor mainly seen in children – a cerebellar medulloblastoma - in 1993.

Eros was 28 at the time. He had surgery at a famous institution in California followed by a full course of whole brain and spine radiation therapy. He eventually returned to work as an attorney and considered the event to be behind him.

Whole brain radiation is no longer performed routinely as it often results in cognitive and executive function deficits later on. ‘That was not known in 1993 when I had my treatment and I suppose that I was not expected to live long enough to see these effects. In hindsight, I can see that I began having symptoms earlier, but it was not until 2007 that I left work on disability. During that earlier period, I just thought I was “losing it”.

‘I’m now reluctantly at the forefront of our understanding of the brain, on the wrong side of the lab bench, and only too aware that we have little understanding of the executive dysfunctions that I exhibit and far less knowledge on what to do about them. My goal is to push the envelope forward for myself and others who will benefit from further research.

‘I am a member of the SL Cancer Survivors Group, and I am very grateful for it--more than I can convey in words. I must have searched in SL for “cancer” and I was fortunate to come across Poppy Zabelin who runs the support groups on the American Cancer Society island. This group is my anchor and I look forward to participating and sharing each and every week. I am so very grateful for this SL support community and for how robust it is. When I went to the Mayo Clinic in Rochester, Minnesota in 2008 it was this group more than anyone (other than my case manager) who helped me get there and were anxious to hear from me on my return. And I am extraordinarily grateful for the experience I have in this group of truly being listened to, accepted, and helped both practically and emotionally.’

Eros has been in Second Life since 2007. ‘I attended the very first virtual Passover Seder with new friends from all over the world who, like myself, sought community. USA Today later reported that Seder as well as the SL Palm Sunday celebration. I am still connected with the Jewish Life on SL. I have friends on SL whom I have known since I began here. And I am still making more.’

When he learned that he had been chosen as a participant for Makeover Magic he says ‘I was flattered and at first a bit concerned that I might be the only Y-chromosome in the bunch. Thankfully that is not so. As the process has unfolded, and working with my mentors, I feel more and more the importance of this event – to walk proudly, bravely presenting oneself to others as a survivor of cancer and to celebrate with our compassionate caregivers and our gracious mentors. It is a public celebration of a growing community of those of us who walk forward despite what we are asked to bear, and of those who allow us to lean on them and help us continue.’

In real life, Eros now lives in Southern California and volunteers with a couple of non-profit entities while he works on his health issues. He is interested in science and medicine and innovation.

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