by nonjwspouse 19 Replies latest jw experiences
Ingimar,
I'm happy to hear your husband has slowed down for your sake as well.Husbands like that are great aren't they? But I understand the very real dread and stress put upon you when even thinking ahead and wondering where is mind is.
Maybe I need to begin a site just for NBM or nonjwspouses, or some name like that. We do have some unique problems sonetimes. There as so many out there too! Both never been one, and ex jws.
Thank you for your story and i hope you are goign to be ok.
non jwspouse.
Yes a great idea for the site for non jw spouses. I would be the first to join. I find that it is usually the wife that is the JW.
Have you ever attended the hall with your husband? I have not but my husband was asking me to but has quit that too. I told him that I would but that I would have my own answers to their questions and tgat I would ask some of my own questions. He said that would not be acceptable and that a bible study woukd be where I would ask questions. I said that was not acceptable to me and if I had an opinion or a question that I would say so as there is no way that the watchtower has all the correct answers. I asked what kind of religion doesn't allow you to do your own research to answer the questions. He insists that he can do his own research and that he researched for two years before he was baptized. I said that research should be ongoing and it is much easier to research everything today with the internet. He knows that I am constantly researching everything such as my blood disorder and that I like to be informed. This is also why I reaearched the JWs. I told him that to be truly informed that I needed to search through a lot of sites to gain accurate knowledge and my conclusion is they are a cult. I will not walk on eggshells in my own house, afraid that I might offend him.
Another thing that I do is try to show how the JWs play with words and love bomb him. I tell him that he is not their brother as they are not his family that they use the word to make him feel loved like he is part of a family and not an organization. I also complimented his nephews and said they were so wordly. He looked at me strange and I said that they have travelled so much and experienced so many cultures which has made them so open minded (wordly). He thought worldy was a negative word. I also told him that I could not be an apostate as I have never left a religion but if they wanted to think of me as one that was okay with me and I would wear the title proudly. These are just a few examples and I am always looking at ways to show that the JWs live in their own little bubble. Needless to say, he no longer wants me to go with him to the hall.
This miraculous, unexplained escape from death was discovered to have occured
during this time of complete detachment from studies etc.
What would you feel explained this escape?
If..
Your Husband Got Better when he Stopped Drinking.. Then don`t Drink..
WBT$.. WBT$..
............................ 
...OUTLAW
Nonjwspouse, I can understand your desire for anonymity, but do you really feel that giving us the barest possible description of your husband's situation would reveal your identity to all the world?
Did he have flames coming out of his ears? Was a family of bears found to be living in his thorax? Was he farting assteroids?
Maybe what your husband experienced wasn't such a big deal and you prefer to give it a little hint of mystery. Hmmm?
Something really super-terrific happened to me once too, but I'm not going to tell you what it was.
As Outlaw's post shows, there's plenty of other POSSIBLE post-hoc rationalization for why God might've saved his life, but it's silliness to conjecture cause and effect when the cause is an untestable unproven hypothesis: that's just not how science works.
adamah, it was not only this Dr but also one at the mayo Clinic, in fact, a team of Drs there, all with the same conclusion. It is medically unexplained as to why he survived without a stroke. These cases are basically disgnosed at autopsy, usually when only one artery is involved. But for both, with signifigant tears, is so remarkable. His is now a case study there. His was found with a specific test to have occured, and not produced a stroke, and healed again in a period of several months.
Well, "all with the same conclusion" means you need to broaden the search for opinions and find someone who IS willing to investigate the answer, and not leave it as "God Dun It!". Perhaps a more-careful vascular study of his brain would reveal the presence of collateral circulation such that he was able to survive a leak? Maybe he clots quickly? Who knows? That's kind of the POINT: an explanation needs to be found.
Just realize there's a LONG WAY between "we don't know why he survived without a stroke" and "God Dun It!". I'd be VERY WORRIED about a team of doctors who are content to NOT find a plausible answer.
There is no known cause for this to happen spontainiously, ( no trauma cause) though they have guesses. We will do what they advise but they have no guarentee, or much to help aside from a baby asprin a day and no chiropractic manipulation etc... it won't happen again. I know of a few things to look for, but most of the time it is asymptomatic or with non remarkable symptoms. I know I will keep my eye out and demand, with a tantrum in needed, proper testing if something suspecious in the rhelm of what I now know, happens and a ER Dr seems unconcerned. If this is caught before a stroke occurs then chances are very good for survival. The key is getting him help when needed, and recognising when that might be.
So it sounds like he experienced an internal carotid artery dissection (possibly bilateral), or some other cerebral vascular accident in the circulatory system of his neck, which spontaneously resolved.
My problem is that although it's extremely rare for it to happen and survive (as evidenced by the ER doc saying this was the first case he's encountered), it's not IMPOSSIBLE. If we say 999 out of 1,000 patients die, it means 1 survives, so it's NOT UNHEARD of.
And suppose your husband IS the first case to survive the specific conditions they encountered?
Great: he beat the odds, and some medical researcher should try to figure out WHY he survived and publish the case. See, these are the kinds of situations where medicine ADVANCES in knowledge, as it's an opportunity to examine WHY your husband beats the odds and then to "share the secret of his miracle" with other future patients in order to some day be able to save THEIR lives. THAT'S how science and medicine works: people today benefit from the lessons learned on patients treated in the past.
But to say, "you shouldn't be alive now" doesn't do anything helpful, but only allows the doctor to get some kind of power trip by playing as if he's an agent of God/Death. It means he's got to get off his butt and figure out WHY, rather than throwing up his hands and saying, "oh, well, must've been God who dun it". That's NOT an answer that anyone who considers themselves a man of science would settle for.
Now what my husband will feel about all of this is what I am concerned about. What he will attribute it to. I am not concerned the drs call him lucky to be alive, and to remark never having seen a surviver with this occurng, in all his years of practice. Those are truthful statements. I am concerned about my husbands frame of mind. What it might cause HIM to believe and act on.
Well, that's kinda my point. Your husband HAS to rely on his doctors, but if they're not willing to investigate, I'd ask WHY they're not willing to do the hard work.
I get a bit offended when I hear of physicians who are theists who play the "God Dun It!" card in their patient consults, since here's a trade secret: if providers get a whiff of believer in the bed, they'll use it as a time-saving excuse to blow-off the patients, knowing that it plays to the patient's sense of narcissism of being loved by a God who cares to intervene on their behalf: it seems to make patients happy (and saves the doctor a few minutes on a patient consult, BTW). I consider that more than a tad intellectually dishonest and deceitful to drag religious beliefs into the clinical examination room to play up to patients.
It means the provider MAY NOT really be committed to SOLVING and ADVANCING medical knowledge, but seemingly are content to "leave it in God's hands".
Adam
Adam, You hit the nail on the ehead. I have no idea if he is the first ever to have survived this. In fact the drs doidn't really know the cause beforehand in younger stroke paitents, until the the the advent of the MRA contrast is making it much more available. If detected and treated and sucessfully with blood thinners, anticlotting and survival with treatment is quite good. Though the recurrance rate is still around 10% so we will be alert to sympyoms and careful with no neck jerkng actions. ( I didn't mean to say no known cauae for spontantious causes, there are speculative caues, but nothing solid)
The drs never once said "god done it" they said they have no scientific or medical answer as to why he didn't stroke out. His is an exceptional case so his case is now studied by the team of specialty neurologists at Mayo, and he may be called upon for follow ups.
The local Dr was simpley stunned and had never seen a survival of this hapening in a sinifigant manner even in a unilateral case.
The signifigant bilateral internal tears were so stunning to the Mayo dr that she was shaken. She too had never seen this in a living person.
It is unknown why or how he survived without a massve stroke. We are now guessing, providing info as we can try to remember it after those many months.
The spinal tap and all the varous blood tests, ct scans /contrast, ekg, MRI/ contrast ...he had in those crucial months were also unremarkable. ( he needed the MRA contrast)
Nathan,, yes I have the paranoia due to wanting to protect my marriage. I walk a fine line right now.I could care less about shunning myself except it would crush my husband as his JW family is so close, and possibly push him right back in deeply.
My big concern is how he might view this and what it might mean in his previous desire to be bsptiesed.
Hi nonjwspouse,
Adam, You hit the nail on the ehead. I have no idea if he is the first ever to have survived this.
If we're talking about 'idiopathic spontaneous bilateral carotid artery dissection', then no, he's not the first to experience it and/or survive it (about 20% of all cases are bilateral). A perfunctory review of Medscape shows that it's not THAT fatal, and dissections are not always associated with strokes (which ARE survivable, esp if caught in time, where the old saying is that 'time lost is brain lost'). Sure, it sounds like he dodged a MAJOR bullet, and there's alot of testing that needs to be done to find the cause (eg ruling out connective tissue disorders like Ehler Dahlos, etc), but if he's on bloodthinners and aware of the need to go to the ER ASAP if he notes ANY changes in symptoms, then he's on the right track.
In fact the drs doidn't really know the cause beforehand in younger stroke paitents, until the the the advent of the MRA contrast is making it much more available. If detected and treated and sucessfully with blood thinners, anticlotting and survival with treatment is quite good. Though the recurrance rate is still around 10% so we will be alert to sympyoms and careful with no neck jerkng actions. ( I didn't mean to say no known cauae for spontantious causes, there are speculative caues, but nothing solid)
Sometimes we HAVE to chalk it up to "idiopathic" (unknown cause), since the lab tests ordered and biopsies taken sometimes come back as 'negative' when they shouldn't (sometimes it's because of a 'false negative', where the biopsy just didn't catch a diseased section of the vessel which would reveal the true cause). In many cases, though, it's not important to ascertain WHY, unless having the proper diagnosis effects the management of the condition. That's part of the problem of being a non-omniscient being: sometimes we DON'T have all the answers.
The drs never once said "god done it" they said they have no scientific or medical answer as to why he didn't stroke out. His is an exceptional case so his case is now studied by the team of specialty neurologists at Mayo, and he may be called upon for follow ups.
Well that's good, but the fact is that not having the answer doesn't mean that an answer isn't out there, eg many patients DO have collateral circulation where the carotids can be completely occluded (blocked) and the patient still manages to get blood to the brain by alternative means (eg Circle of Willis, via vertebral circulation). People do have different anatomy when it comes to brain circulation, since anatomical variations exist amongst patients.
I still suspect they're playing to his "believer" ego a bit, since not all bilateral dissection patients MUST stroke out, and not all strokes ARE "massive" (supra-clinical), i.e. there may be SOME damage he experienced as a result of clots thrown off from the presence of the tears, but it's just that the damage from ischemia is below the level of being clinically noticeable/detectable. Don't get me wrong: I'm not down-playing his luck here (in fact the opposite: he very easily could be dead, or worse, with persistent neurological defects, or in a coma, AKA persistent vegetative state). Just saying that it's not a "miracle", since many similar cases are reported in the medical literature (unless there's something particularly unique in his case that I'm not aware of, which is highly-likely).
Keep us updated on what they find, and how he's doing!
Adam
"A wicked and adulteress generation , always looking for a sign" ...or something like that.
smiddy
First, Ingimar, sorry i didn't respond directly in this post to you. But then when reading over your post again what came to my mind is " Are you me?"
Honestly muchof my personality is like yours. Much if the conversation happening between my husband and I are the same issues. I focus on informaiton, not to lomit it or to be told where to look for it and where not to. ( He tries to say I am telling him what to do, and how to research, but I am constantly turning those tables in my responses)
I never went to a meeting, but attended the memorial 3x for the sake of his Mother to show off her grandchild. ( I thought) But once his intentions were made clear to me three years ago I will not set foot there again. I know far too much after doing the real research to ever accept a study. The last time I was there I was offered one, and she was rather insistant, but I said absolutly not, and that was BEFORE I know what I know now.
Adamah, thanks again for your super knowlageable posts for me. I have requested the mayo to research possible smooth fibromuscular dysplasia. ( not sure if there is any different treatment for that but who knows right?) His mother has the string of pearl type, whch I found out by myself is an unexplained risk factor for what happend to him. Also, no circle of willis or other alternative brain blood pathways. I wish he DID have a circle of willis, it would be a measure of protection for him.
I found out thetwo ERs he went to were both highly negligant in several areas, and I am filing a formal complaint. Plus a complaint about the radiologist and neurologist here that did not catch the active condition on the first MRI he had 16 days after the onset of the hedaches. Which also resulted in an unessesary spinal tap and( resulting extreme pain and then patch needed) The pain my poor husband faced was horrific. The Mayo has in writing that it was visabile and diagnoseable in the first MRI. If he had a stroke, he would probalbly have died because he was not being treated with strong anticoagulants until the dissection healed. Once diagnosed and on treatment during the event, the prognoses is very good. He had headaches for six weeks, each time he had that severe pain, the mayo Dr told us the tear was increasing. Each time it was possibly deadly. It makes me cry to remember those horrible days of multiple headaches and him remaining in bed for days and days in pain....and to know now the massive risk he was in.... Something inside me told me to request a blood pressure lowering drug for him from the GP ( no dr ever considered it...calling it "white coat syndrome" HA!! Thankfully our GP is generous over the phone with requests after explaining the reason why. ) But I knew his readings were never high until the weeks before the headaches and during them. He has had severe pain before without an increase in pressure. All of the symptoms he complained of pointed to the dissection but no medical professional even recorded all of them. Even after we would repeat them over and over. Not even a doppler on his neck was peformed. Such a simple thing that may or may not have detected it, but it might have.
We will be getting a medical alert necklace to warn of high stroke risk, past diagnosis, and which hospital to be taken to if he passed out, etc. He is headaches are gone now, but his anxiety level is now very high. Every single dr he has seen since the diagnosis has had that same stunned reaction. It is unnerving and I am sure contributing to his anxiety.
No KH meetings yet, but the tide is turning. I can feel it. It is a matter of short time before he returns. It could go either way. Whch is what scares me. We are having some written "talks", letters back and forth, prompted by him blaming me last week ( his fear of my reaction 'controlling ' him) for him not attending his brothers first talk since studying again. The letter was mainly on the matter of communication in our marriage, but he latched on to the one referance about what he was quoting the former couples therapist saying ( My husband twisted it completely, but I didn't say so) that I was trying to convert him to my religion or we would be divorced. That is the only thing he is addressing in a two page letter. His pattern is to do this, get deeper into it , get upset about it, then refuse to discuss anything else. Wash rinse repeat.
Trying hard not to get upset, not to talk around our child, not to inturrupt him getting on a better sleep schedule by using that time to talk. I will continue the writing, but not exclusive to actually talking. He is avoiding, majorly. His psycologist affirmed yesterday what I have been asking of him for months. He needs individual talk therapy right away.
Data-Dog I can only hope he will think this way, but then, that would require critical thinking of the matter now woudn't it? His critical thinking shuts down on anything WT related.
Smiddy, I like that Bible quote and even printed it out at one point.
