Discussion Topic: Risk and Reward

[Bill_T]

As Kurson outlines it in Chapter Five, Mike and Jennifer had to examine all of the risks involved in the surgery. One risk in gaining vision was that it could disappear at any time.

If you’d been blind for life, would it be better to have vision, say, for a year and then lose it, or to never have had it at all? And do you think reading this book has made you think differently about that question?

[Librarian]

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Bill_T wrote:
As Kurson outlines it in Chapter Five, Mike and Jennifer had to examine all of the risks involved in the surgery. One risk in gaining vision was that it could disappear at any time.

If you’d been blind for life, would it be better to have vision, say, for a year and then lose it, or to never have had it at all? And do you think reading this book has made you think differently about that question?

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That's a hard one to answer. Mike had three years of vision before he lost it. I was surprised that POSSIBLE SPOILER--he had trouble processing sight when he regained it, that three years is still too young to fully orient the brain to a world of visual processing. So if a person doesn't remember vision or has never had it, he or she may not miss it. To gain sight and go through the loss all over again could be wrenching emotionally.
Librarian

[vivico1]

sorry, tried to delete this post, wrong place and it wont delete.
Message Edited by vivico1 on 07-06-2007 08:29 PM

Message Edited by vivico1 on 07-06-2007 08:33 PM

[Justine]

I have not begun to read the book yet, but I can still contribute to this , I think. I have used a wheelchair for all of my life due to having Cerebral Palsy from birth ( which is not the same as paralysis) And If I could, say, walk for a time unaided, I think I would do it. It would be easier for me to choose, though, if I knew I had a set amount of time that would expire. I am assuming that Jennifer and Mike were given all sorts of possible negatives. You see, I don't think I could go through with some walking experiment not knowing if i was going to be able to walk for maybe one hour or one year or five years, but that may be because I couldn't stand adding that much uncertainty to my life. But also then ANY time walking unaided would be a gift and more than I had had before. And at least I wouldn't be spending a great deal of energy wondering " what if" I had chosen to walk. I also think , though , that re-adjusting to life using a wheelchair after having been able to walk would be twice as difficult, though it would have been my CHOICE to submit myself to the re-adjustment difficulties in the first place, which is a lot different from becoming a wheelchair user due to some accident or unforseen circumstance.

I hope I haven't contradicted myself. I also hope that I have made enough sense to add to this discussion

[vivico1]

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Bill_T wrote:
As Kurson outlines it in Chapter Five, Mike and Jennifer had to examine all of the risks involved in the surgery. One risk in gaining vision was that it could disappear at any time.

If you’d been blind for life, would it be better to have vision, say, for a year and then lose it, or to never have had it at all? And do you think reading this book has made you think differently about that question?

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Man, I dont know. If I had always been blind and then was told it may only last a year, I may say no. How could I miss what I never had, but then I might miss it terribly if I had it for just awhile. The closest I can come to thinking about that is, I have arthritis in my legs that hurts all the time. I have since my early 20s. At 29 I was in the hospital for something else and they put me on a theraputic dose of some med to see if it would help, most tear up your stomach so much you cant take them. In just two days I was walking around without my cane and singing up a storm, it was great! In 6 days, I thought my stomach was going to burn out of my belly and I couldn't even sit up. So we had to stop the med immediately. The pain came back and I am sure it wasnt any worse than before BUT, it felt 5 times worse. You see, in those 9 years I had gotten used to a certain amount of pain all the time so to a certain extent, it didnt seem to hurt as bad as it did earlier on. Now, after having NO pain for just one week, I felt the pain like when it felt the worse, because now I remembered what it felt like to have NO pain. I was crying when the doctor came in the next morning. He asked what was wrong. I said, I wished we hadnt used the meds, it made me remember what it felt like to have no pain and now it hurts so much more and it will take time to forget that feeling of no pain again. I will never forget that feeling. I really wanted to try the med but I had no idea what I would feel if it only worked for a little while and i had to go back to how it was before. I spend more time now grateful for what I do have with as little medication as I can handle not using. I would definately have to think about it. I know that desire to try would be there but I would really have to think. I dont know what I would do.

[RobertKurson]

Hi Justine,

I think you've raised a very important point about human nature. People, for the most part, do not desire change in their lives - even if that change might be for the better. I've heard many people ask Mike May if he thinks they should attempt vision restoration surgery. He always gives the same answer: If you enjoy change, if you embrace change, that's the key factor. If not, you must really think hard about going forward, because one thing that's near certain is that your life will change. That's one thing that made this story so fascinating for me - the idea that something might seem absolutely wonderful on the surface, and yet might not be so wonderful when one considers how deeply it might change one's life.

[Wrighty]

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RobertKurson wrote:
Hi Justine,

I think you've raised a very important point about human nature. People, for the most part, do not desire change in their lives - even if that change might be for the better. I've heard many people ask Mike May if he thinks they should attempt vision restoration surgery. He always gives the same answer: If you enjoy change, if you embrace change, that's the key factor. If not, you must really think hard about going forward, because one thing that's near certain is that your life will change. That's one thing that made this story so fascinating for me - the idea that something might seem absolutely wonderful on the surface, and yet might not be so wonderful when one considers how deeply it might change one's life.

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I think that's almost impossible to answer unless you're in the situation, well for me anyway. There are so many factors to consider but Mike does have a good answer. You would have to be able to accept change because your whole life would be restructured.

[blhammond]

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Bill_T wrote:
As Kurson outlines it in Chapter Five, Mike and Jennifer had to examine all of the risks involved in the surgery. One risk in gaining vision was that it could disappear at any time.

If you’d been blind for life, would it be better to have vision, say, for a year and then lose it, or to never have had it at all? And do you think reading this book has made you think differently about that question?

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I am a speech therapist and so have participated in discussions about the hearing vs deaf cultures. People who qualify clinically for cochlear implants to give them hearing must face the same potential for being ostracized from the deaf community of which they feel inherently a part as May faced with the blind community. I was so glad that May discussed this with his blind friend, Bashin, before embarking on his surgery. It seems that no matter what medicine or money or anything has to offer us as individuals, we must never kid ourselves into thinking we stand to gain more than what we have in the communities that love and support us. I am not saying May made the wrong decision or that people with cochlear implants make the wrong decisions for themselves, but I applaud Kurston's inclusion of the issues of culture and community as vital to happiness.

[ilucas]

I would suspect that those considering a cochlear implant have more to lose in terms of community than did Mike. Mike spent more time in a sighted world than he did among other blind people. Although I do not have any extensive contact with deaf communities, they appear to be more exclusive than does any other group of people with physical disabilities. I suspect that has everything to do with limitations of language. Language definitely shapes our world view, our sense of belonging and identity. ASL is not spoken by many in the hearing world and spoken languages are not readily accessible to the deaf community. Mike did not have this problem. He was never part of a exclusive community shaped by a common language. Although he might not have felt welcome by his visually impaired friends after surgery, he already had an extended social network, including his nuclear family and professional colleagues, that he was immersed in.

[RobertKurson]

These are all excellent points. And they raise the issue, I think, of what love and inclusion and community really mean. Are they unconditional? One would like to think so. And yet, in so many instances, it turns out that this might not be true. Friends and family and community often desert their own - for intermarriage, for leaving the faith, for pursuing one's passion, even for choosing to embrace a new sense. In a certain way, it can be argued that those abandoned by their friends and community for such offenses have a bit of a leg up on the rest of us in that they have an even better sense of who their true friends and community really are.