I'm not naming names, but . . .

[Guest guest]

Recently several offensive and hurtful posts appeared at this site (and went out to members in their email).I am already receiving aggrieved and outraged personal email about the mean-spiritedness and small-mindedness betrayed by the authors of these posts.If you are one of the very rare graduates of flatback revision surgery who has had no further problems and has returned to a fully functional life, you are tremendously blessed, and we rejoice for you.But if you feel that gives you license to discount and demean participants in the media campaign who continue to suffer unspeakably with legitimate and serious spinal problems, you are sorely mistaken. There is a Native American saying: "Don't criticize a man until you have walked for tenmiles in his mocassins."I might add, ". . . . or until you have spent a day in her wheel chair." That's right: more than one of our members are confined to wheel chairs. One of our members went in for a corrective flatback revision surgery several years ago and emerged from the surgery paralyzed from the waist down. Other members, as you may have read in the posts, have had long and grueling struggles with the most agonizing uncontrolled pain, as well as with the accompanying clinical depression that too often leads to serious thoughts of suicide. It shocks and apalls me as moderator of this group that some members regard other members as, what was the language, "a bunch of whiney women"? Perhaps not in their precise choice of language or form of expression, but certainly in spirit, these negative and critical posts are the moral equivalent of flaming, which is strictly forbidden in this group. No further posts of this type will be tolerated, and, should such a post come in, I will seriously consider ending the poster's membership privileges for good. If you are all better as a result of your revision surgery, and you believe that everyone else should miraculously be as lucky as you are, I question why you would have any interest in this group. Please consider unsubscribing if your intent here is to act as a sort of voyeur and practitioner of Schadenfreude (a German word for taking pleasure in the misery of others) -- if you are participating so as to gloat at how wonderfully you yourself are doing while implying that those facing greater pain and difficulty are to be regarded as wimps, whiners, or crybabies. I personally can not fathom how anyone so lucky -- so amazingly fortunate -- would choose self-congratulion and carping criticism over empathy and compassion. Did anyone ever tell you that our major hope for humanity these days is mutual acceptance and loving-kindness? Are you aware that untold numbers of people as fortunate as you are (and and many far less fortunate) are finding it worthwhile to keep a Gratitude Journal, to practice random acts of kindness, to engage in prayer and meditation, to serve as beacons of light admidst the darkness of war and killing, of suffering and pollution and devastating earthquakes and all the other disasters and tragedies which seem to beset our ailing planet these days? Have you ever heard the expression, "If you're not part of the solution, you're part of the problem??Most shocking of all to me is that any member of this group would seek to undermine a legitimate group effort to reach the general public and educate them about flatback syndrome. Flatback syndrome is still being caused by spinal surgery today. Flatback syndrome, according to the SRS, is certain to cripple virtually all of the one million people who underwent scoliosis surgery with nonsegmental instrumentation. Many doctors have never heard of flatback syndrome. Many patients are still being dismissed or misdiagnosed. Until eight or nine years ago, the whole subject was shrouded in secrecy, discussed only in hushed tones or behind closed doors.Do you seek to see those doors snap shut again? Do you hope large numbers of adults with scoliosis instrumentation can continue to be kept from the truth and the facts, to go on living in ignorance and pain -- that their doctors can be kept from facing reality, so that such patients will continue to be mocked or banished or, worse yet, subjected to still more deforming spinal surgery? Why, in your great good fortune, would you worry about what you imagine some producer at the Dr. Oz show might be thinking about our letters -- letters from people of formidable courage and endurance, living lives of agonizing pain with an amazing spirit of hope and perseverance? Why would you have no worry whatsoever about the many additional lives being radically disrupted by flatback syndrome, amidst an atmosphere of widespread ignorance concerning this generally devastating condition?As for any post from someone who may have escaped flatback syndrome entirely: I have always had an informal policy of allowing people without flatback syndrome to joint the group, assuming they had some vital personal interest in the subject -- for instance, a concern that, because of lumbar instrumentation and other key factors, they or their family members might eventually be vulnerable to flatback. For a member without flatback to misuse such membership -- to write posts dumping on other members who do have serious flatback conditions and to undermine a group initiatives like the media campaign -- is inappropriate, unacceptable, and frankly extremely shocking to your fellow forum members. I repeat that this type of poison-pen letter will not be tolerated. As for Princes Eugenie, a young woman said to have been treated for scoliosis (not for flatback syndrome), she has for some reason engendered all kinds of commentary and admiration in this group. I have been patient with various suggestions that Princess Eugenie be approached to become a poster child for our media campaign. Those who favor this notion should by all means start their own group and launch their own campaign to draw attention to scoliosis in young people. No doubt there is much to be done in this area. This is not a scoliosis group, however; this is a group devoted to flatback syndrome -- the first group, in fact, and one that was started just ten years ago, when there was virtually NO information available on flatback, when a small group of us in our thirties, forties, and fifties -- longtime graduates of the Harrington rod surgeries and body casts and all the rest of it -- were rapidly becoming useless, pain-ridden hunchbacks and had no clue where to go for help or hope. Through this group, we helped ourselves. Back then, as now, there was no dearth of groups on the Internet devoted to scoliosis. If you wish to further publicize scoliosis and the allegedly happy outcomes of scoliosis surgery for people like yourselves and Princess Eugenie, I urge you to start yet another scoliosis group or join one of the existing ones, and to lobby for adopting Princess Eugenie as your group mascot or icon. (I repeat: This is not a scoliosis group. This is a group devoted to flatback syndrome.) And please, let's all pray that the Princess remains free of any flatback deformity as she grows older -- particularly since Harrington rods are apparently still being used to correct scoliosis in the UK, while flatback revision surgery is essentially nonexistent there and is hence unavailable even to royalty.