Questions...we have questions! Please see Page 1 Q&A Additional questions will be added as they are presented.

I thought that we lived in a democracy so I can’t understand why you won’t let me post anything I want.  It says on our site that this group is for all parts of our lives, not just our SOM, so why do you think that it’s your right to censor what I want to post?  Whatever happened to freedom of speech? Depending on where you live in the world, you may or may not live in a democracy.  In this world, the one where our support group for persons with superior oblique myokymia-SOM lives, it’s more of a theocracy, which Merriam-Webster’s online dictionary says is the “government of a state by immediate divine guidance, or by officials who are regarded as divinely guided�?  How cool is that.  What it means for our site is that the management team are divine.  Yup, divine.  Not only because our managers are cute and wonderful and loving and nurturing and supportive of everything that that is needed to maintain our site so that it can continue to be all of those things, but also because, while they are supportive of our site, they are also the last word on what is acceptable within the group.   Yeah, that’s a little harsh, but it is true, nevertheless.  So, does that mean that you have to self-censor what you write or images that you post on our site?  Yes.  Yes, it does.  Does it mean that you have to be happy about it?  Well, since we’re all claiming to be here for the same reasons, then your happiness should be based on doing what is best for our support group.   If you do your part to make sure that our site is safe from being deleted by MSN for having inappropriate and/or unacceptable writing or images, all of us can continue to enjoy the benefits of what is the absolutely the first, the best, the only, one of a kind, resource for persons with SOM.  In the whole, wide world.

I can’t post anything on the site.  What am I supposed to do now? The most common reason for not being able to post is that a member is not signed in to the site.  Instructions on how to sign in can be found HERE. Another reason for not being able to post is that MSN is always working on their servers, keeping Groups up and functioning, and that can mean that a particular Group or page on a Group is temporarily unavailable.  If re-checking to make sure that you are properly signed-in, and a bit a patience for MSN’s problems, still has not resolved your posting problems, you are welcome to write to our managers at the e-mail address that was used to contact you when you applied to join our support group.  If you no longer have access to that address, you can find that e-mail address on our Document page titled Contact your managers

If this is a support group and we are all here to help one another, why am I told to not disclose personal information in this group?  No matter how careful you are on the Internet, the sad truth is that you really cannot ever know who is at the other end of your computer.  Internet safety information is HERE. These days, the need to be self-protective is ever more important.  Every day we hear about people who have had their personal information compromised because they were a little too free and trusting about sharing information with people that they believe they have come to know well, but are, honestly, virtual strangers. Many of our members have “known�?each other for many years, having met more than eight years ago, at our first website.  Some of us have had the pleasure of corresponding, talking on the telephone and even meeting in person.  Those first, tentative contacts were a little scary for us.  Those meetings were facilitated with a little trepidation, adequate preparation and much care.  As managers of this group, we are responsible for everything that happens here. We would prefer to leave that to the discretion of our members, but that has not been as successful as we would have liked.  Unfortunately, in order to keep our site as safe as possible, we will have to keep reminding ourselves what is necessary to maintain that safety. In order for persons with SOM to find us, our site has to be completely visible on the Internet.  This means that whatever is posted on this site is viewable by anyone who just happens to be noodling around on the Net.  Not all of those people are engaged in activities that are in your best interest.  Only you can make sure that your personal information remains personal, by not posting it anywhere on the Internet, and that includes our site.  You know about the possible dangers of Internet use, so please use that information to protect yourself.

Why should I have to hide my e-mail address? While it is not a requirement that our members hide their e-mail address, there are many good reasons why we recommend that you do so. You can find an article about this issue HERE. However, even though you don’t have to hide your e-mail address, we have to wonder why you don’t want to do it.  There are no good reasons to keep it visible.  Hiding your e-mail address doesn’t cost you anything more than a few minutes of your time, and it helps to keep your membership safe and, much more importantly, it helps to keep our support group safe.  We have lost a couple of previous sites.  The first was lost due to the neglect of the manager of that site.  The second was also lost to neglect of a sort because the site was hacked and rendered useless for our members.  That site, and domain name, remains lost to us because that manager never reclaimed it from the hackers.  We are doing everything possible to keep this site alive and healthy.  If we seem a bit militant about it, well, our previous losses of sites and contact with other SOMers are sufficient reason to be so cautious. If you choose to allow your e-mail address to be visible to our membership, that is your personal choice, and you are responsible for anything posted using your membership.  Should your account be compromised by someone else, who uses it to post unacceptable material, it breaks our hearts, but we cannot allow you to remain a member of our group.

Why do I have to have a diagnosis of SOM before you will let me join?  I would think that having as many members as possible would make the group a much better and interesting place to be.  More members means more activity and possible help to everyone. We are a support group for persons with superior oblique myokymia.  We are established and functioning as a resource for persons with SOM, exclusively.  We are not a support group for persons who do not have superior oblique myokymia.  We are not a support group for persons with other medical or emotional issues.  While we are happy to have this support group be available for every part of our member’s lives, we are not a social group for other people. We are sorry that there are not groups for everyone who has a life issue that needs help and support, but it is inappropriate for us to try to help people with issues other than superior oblique myokymia.

How often do I have to post to remain a member? We do not have any posting requirements. You can post as often or as seldom as you like. While I think that it is polite and reasonable to expect that a member would, at the very, very least, respond to their welcome message, even that is not required.  Members are welcome to post or not post, as they desire.  Even if all that you do is to come here to read our informational pages, use our links or read what others have been gracious enough to share with our group, that is totally fine with us.  We have members who joined six years ago, and have never posted a single thing, not even when we welcomed them to our group.  Those members are welcome to stay, and be silent, for as long as they like.  We will never unjoin them from our support group.  That said, I will share that it puzzles me that someone would go to the trouble of joining us and then never participate in our group.  If all that someone wants to do is to read what is available on our site, there really isn't any additional benefit to them if they actually join.  However, I think that, sometimes, people are a bit reluctant to post, especially if they are relatively newcomers to using the Internet.  Just one of life's little mysteries, I guess.

How do I stop another member from sending me e-mails? Well, there are two ways to do that.  You can ask her/him to stop sending them.  Even better is to make sure that your e-mail address is hidden on our site.  If someone can’t find you, they can’t bother you.

Can I post a joke? You can post jokes on our general message board, or you can post them on our Comedy board.  Please remember that our site is to remain suitable for anyone of any age to view, and any postings, including jokes, must be kept suitable for a site like ours.  In case that is unclear, all postings, jokes or otherwise, must be clean.  Squeaky clean.  No exceptions.  No pleading ignorance.  No appeals.  No kidding.  Hah!

Can I post about something other than my SOM? Of course you can.  This support group is for every part of your life, not just your twitchy eye.  Members have posted about their pets, jobs, families, hobbies and much more.  Please keep in mind that this site is available for viewing by anyone who stumbles across our group.  Posting identifiable information could compromise your personal safety.

Would you write to another member and ask a question for me? Would you give me another member’s e-mail address so that I can ask him/her a question? Would you contact another member and give them my e-mail address so that I can talk to her/him? These three queries have a common thread, which is that members want to communicate off-board.  Frankly, if you can’t ask, directly on the message board, we have to wonder why not.  It makes one wonder what needs to be hidden, and makes other members feel left out.  If you need that kind of privacy, perhaps it would be best if you found it somewhere else.  Does that seem a bit harsh?  The reason is that we rarely, if ever, know who is really at the other end of our computer.

It bears repeating that we have struggled to keep this group together, and to maintain a viable support group site for over eight years.  Two previous sites are lost to us, and we are doing everything that we can to prevent the loss of this support group site. If our methods, suggestions and requirements seem excessively stringent to you, please try to imagine what it would be like if you came to this site to post or read or just find a little peace and support, and you found that it was gone.  Poof.  Disappeared.  Lost forever.  That is what has happened to us old-timers...two, terrible times. We understand that you have a life apart from this site, and in addition to your SOM life, because that is true for all of us.  We do not require that you post on a regular basis.  You are never asked to 'check in' in order to remain a member.  We don't require intimate information from you, and should anyone representing themselves as management of this site ask that you provide such information, refuse to do so.  What we do ask, via all of our site/group requirements, is that you be honest about your SOM, and just practice safety on the Internet. If you ever have any questions or concerns, please feel free to post them on our General Message Board; or if you feel the need for more privacy, use our e-mail address to contact us. Don't be shy about asking anything.  Our rare, orphan disorder needs all the interest and investigation and information gathering possible.  Please be generous about all the mis-spellings and gramatical errors on this site.  We may be SOMers, but we're still humans!