Well, my friend got back from visiting her childhood friend in Northern California, she had since been moved into a facility but not the intensive care kind, ironic that her mother was at that time in the hospital due to stroke. Ruthie had a great visit with her friend though, I was amazed at the level of mental capacity Robin still retained, as relayed through Ruthie. She got back in town just in time to see the Manhattan Beach fireworks show at the pier with us so I got the full update. They had a great visit, reliving Girl Scout days and all that. Robin was very very ready to go, I won't belabor with the difficulties she had in her waning days, too painful to repeat, suffice it to say she welcomed and embraced the end and had no reservations, an extremely intelligent, charismatic and loving spirit trapped in a bodily prison. She lasted another five days and passed on last Friday. CCSVI was just not in the cards for her, her resignation to her fate had long before been settled upon and I'm not so sure her 99.9% paralytic condition would have alleviated with treatment anyways. Irrelevant at this point.
The irony is, the sister of my friend, has a friend, I think 40 something, who was dx'd MS about 2 years ago, and it's taken ahold of her quite rapidly. I recall talking extensively with her on the phone some time back and relaying my experience and a quick overview and what CCSVI was, and believe it or not, what it wasn't. I try to sprinkle one "however" for every positive thing to balance it out, it is hard to encapsulate CCSVI in a phone call. And of course one of Marie's books.
Oh, digressing back to the irony thing, and remember I'm kinda relaying this stuff third hand, but I get the sense she is in (somewhat?) of a denial as to the rapidity of her progression, what I mean is others see changes and recognize them before you do, the decay of mental/cognitive functions, memory loss, physical limitations, just like I don't notice my kids growing, but others sure do after not seeing them for a few months, and (here's where I try to step lightly), if I were her, and knew about this, and had this happening to me, and if it made some sense, I would want to at least be scanned, see what's going on, but that's me, and I'm Cureious. She is in a very wealthy family, some national restaraunt chain owners or something, and has unlimited resources, hence the irony, as so many would, and many have, dropped their life savings in pursuit of an answer here, should insurance not be an option.
But that's me with my opinion, and that's all it is, but it's not my place to tell anyone what I think they should do or should not do, and being a friend, in my book, means giving the other person the option of saying NO, and the other person accepts it on face value and leaves it alone. My buddy Don said long ago, "People give you advice because they want you to follow it".
So true, generally speaking.
It's not easy sometimes, and I don't mean that to say we have all the answers, or CCSVI treatment is a sure thing, or is applicable to all MS patients, but in the end, the very best we can do, is simply put the information on the table and point in directions to resources, and hope for the best, but at the same time, I think most of us understand, when you are in the grips of the disease mentally, it sometimes colors your thinking, depression and all that. Then there's the other thought I have, and this is a general commentary not directed towards this lady specifically, but one very very important question that we must ask ourselves, and answer ourselves, to ourselves alone, and that is, "do you want to be healed?". Might sound silly I know, as *obviously* there is nobody but charlatans offering that here, but at the same time, when one has been locked into a certain mindset of dysfunction=norm for so long, it just becomes second nature to be "an MS'er", with MS, and all it's concomitant dysfunction and drag on our flight through life..
At some point, we come to grips, hit that "acceptance" part of the grief stage, and move on with life, adapting, adjusting, and become accustomed to, and (as much as possible), comfortable in our own skin. As faculties decrease, we adapt/adjust as we are able and willing to do, I'm amazed sometimes at how some are able to continue thriving despite their limitations.
Then along comes this CCSVI stuff, and it's possibilities for regaining lost ground, or improvements, and I say possible, not probable, and now I must only speak to my own experience, but that adapting/adjusting goes the other way too! I am fully aware this is not everyone's experience, and for some CCSVI has been a nightmare of epic proportions, and for some just blah, nothing, but for those of us who've regained something lost, there comes this other part that says, "okay so what do I do now?".
I was so used to being sick, I didn't know how to act normal, heck who knows what normal is anyways, all I know is, a significant chunk of life was wrested away, and it's 2004 all over again, but this time going the opposite direction. This MS thing, so engrained in my identity, and now it's just a notation on the paper in the chart in my neuro's office. Now what? I dunno. I forgot how to just live and not always be considering that "okay this is remission, hurry up and do stuff before anything happens", if I can remember where I was in the first place. This is healing, but it is also a time of upheaval, out with the old, in with the new. It's daunting. There are responsibilities, same as before, just that now there are, gasp, "expectations", the new Mark without limitations, excuses, real or imagined. Is anyone ready for that? Do you WANT that? Or is resignation and acceptance so comfortable now, that you cannot imagine living without it? It is a major shift to go from just surviving and making it, to making future plans stretching out into years, and that is assuming a LOT, that MS is not going to factor in at some point. Maybe that's the scary part, assuming this is going to be the new norm, with nothing to reference or gauge whether that IS the reality.
Just waxing philosophic here, maybe some food for thought, things to take into consideration, as there are going to be many that say, "this is just not for me, I'm comfortable where I am, no thanks", and that is perfectly O*K*A*Y. It reminds me of the controversy around cochlear implants, some deaf people are just okay being deaf and using sign language and don't WANT implants, even if it meant the restoration of some hearing...
There is going to be a certain segment of the MS population that is not going to go for this, even if it holds a certain store of hope and promise, and yes, I realize there are a certain amount of presumptions built into this as to CCSVI>MS etiology and all that. Guess I'm just curious why someone wouldn't want to be tested is all, even if it goes no further than that... Puzzled is the word that came to mind....
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap