I’d like you to read what is below this section which is an explanation of how this group came to be, and why I am here doing what I’m doing. I’ve had some questions about it lately, so I thought I’d take the time to tell you and get your feedback about it. If it’s too hard to follow this long post with your visual impairment, here’s a webpage with the same information–>https://mymacularjournal.com/disclaimer/why-me.
I am asking for =honest= feedback on these questions so that you can help me better help you:
- Am I discouraging conversations by posting so much or referring to past posts in the group and website pages?
- Have you felt personally criticized when I’ve played devil’s advocate to what you’ve posted? Wikipedia defines devil’s advocate “…describes someone who, given a certain point of view, takes a position he or she does not necessarily agree with (or simply an alternative position from the accepted norm), for the sake of debate or to explore the thought further.” That’s exactly what I try to do.
- In an attempt to GIVE hope, am I taking it away by sometimes taking this stance?
Here’s the deal: I will answer any direct questions you have for me (use my full name so I see it), but I will NOT respond. This is your time to talk and my tie to listen. What I want are constructive suggestions as to how to better moderate the group. Also, as much as I appreciate people saying nice things to me, I’m not fishing for compliments. Really. ::grin::
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How the group started in May 2016.
Someone recently asked me why I created the group, why I’ve been doing this (being administrator) for so long. No, I do NOT have AMD, but I have several other eye problems. My friend of 40 years Sue had a rapid decline in her vision from advanced dry AMD (geographic atrophy) in January 2016. As she started down the path of getting help for herself, she wanted to share her experiences, so she asked me to start a blog for her. I did. She wrote (she still writes), I edited her pages (I still edit) and put in links to information she referred to. I started to do additional research and created pages and posts on specific topics.
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WHY did I create this group?
I created this group because it was so difficult to have conversations on the website. I KNEW people wanted to talk & share stories of their journeys. I started this group as an extension of the website. I did this on my own with Sue’s blessings knowing that she did not have the time to participate or interest in social media.
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WHAT is the objective of the project?
Sue and I are of one mind in regard to the many false and misleading statements and ineffective or harmful products that are promoted. We agree that both in her pages/our website and in this group:
“Our objective is to make sure that any information shared is as accurate as possible and not misleading.” That’s in the description of this group.
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WHY do I spend so much time on this?
The short answer is it has become my passion. That’s what drives me.
I sympathize and empathize with those who have any of these horrible retinal diseases. My Dad had geographic atrophy at a time when I knew nothing and was 700 miles away. I felt helpless, especially since he was my mom’s only caregiver (his choice). I also believe that the beta-carotene in the AREDS (AREDS2 was not available in his lifetime) he was taking led to his lung cancer. After he died in 2012, I found extra beta-carotene he must have taken. He’d smoked all his adult life until he quit in his 50s. Of course, I have no evidence to back this up and I never will. Just a very heavy feeling in my heart.
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WHAT do =I= think I have to offer you?
At age 65, I look back and see that the things that I’ve done can benefit others. I’ve made many mistakes that I hope I’ve learned from. I have a background in psychology, computers, and teaching. I hope the psychology gives me insight and compassion, I hope the computer skills help me do searches and keep the group & website going, and I hope the teaching helps me to provide opportunities to educate members and stimulate conversations.
Plus, I have the time. I’m retired. I recently started working, but it’s a job where I have a lot of flexibility. I’ve not had much work-work in the last week, so I’ve had more time than usual. Perhaps I’ve spent too much of that time here, but I see this as a job albeit unpaid.
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WHY do I ask so many questions and post so much?
Both Sue and I have a background in research and the ‘scientific method.’ We have each gone down ‘rabbit holes’ looking for answers to the many questions we have had about AMD. I’ve gone down other rabbit holes looking for help for my own health issues. Looking back, I have found very few things outside of conventional medicine that helps me. That does not mean they aren’t there. Maybe I’ve given up?
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The bottom line
I want to help you do your own research no do it for you, so I regularly post articles and pages from our website where we have a TON of information from this 2-1/2 year journey. Recently, I’ve been encouraging you to search our group’s post because we have SO much information and have had so many great conversations. I can’t think of a topic in macular degeneration that hasn’t been discussed. The teacher in me also posts what I hope are ‘conversation starters.’ For example, I posted an article about nutrition, and we have what I think is a great conversation going on about that.
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So again I ask:
- Am I discouraging conversations by posting so much?
- Have you felt personally criticized when I’ve played devil’s advocate to what you’ve posted?
- In an attempt to GIVE hope, am I taking it away by asking questions such as “how do you know this is what is working” and suggesting other ways to think of it?
Here’s the deal: I will answer any direct questions you have for me (use my full name so I see it), but I will NOT respond. What I want are constructive suggestions as to how to better moderate the group. Also, as much as I appreciate people saying nice things to me, I’m not fishing for compliments. Let’s concentrate on the issues, please.
My Macular Degeneration Journal 