Thursday, October 07, 2010
Tuesday, May 11, 2010
But I'm just fwee
That would be 'three', if you count from the time I got out of Rehab. Sometimes I feel (and act, according to Chris) three (or, she says, seven on a good day)...
Saturday, December 05, 2009
Three years and counting
Another year, and things have not significantly changed. My vision is still doubled, my balance is still iffy, and my memory is still spotty. I work at remembering everyone and everything, but without total success. I remain unemployable, but work at something (usually my writing, but always my blog) every day. Chris still loves me (and I still owe her my very life), and we have two delightful cats and a beautiful home, so life ain't so bad...
Saturday, November 29, 2008
Two years, tonight
It's been a very confusing, interesting, frustrating, wonderful, terrible two years. Two years ago, 29 November 2006, late in the evening, the landmine went off in my head, and nothing's been the same since.
Some things, like my relationship with Christine, are as good, if not even better, than it was.
My employability is about zero, but I find things do to, and some of them even make me money.
My friends, mostly, have continued to support me.
Life, all in all, ain't bad, and it sure as hell beats the alternative.
Keep a watch here (or at Rico's Rants) for future events.
Some things, like my relationship with Christine, are as good, if not even better, than it was.
My employability is about zero, but I find things do to, and some of them even make me money.
My friends, mostly, have continued to support me.
Life, all in all, ain't bad, and it sure as hell beats the alternative.
Keep a watch here (or at Rico's Rants) for future events.
Monday, November 24, 2008
Two years, soon enough
I continue to fall into the gap between sadness over what I've lost and amazement at what I have.
The best thing, of course, continues to be my lucky association with Christine; not only the founder of this blog, but my savior (literally and figuratively). Without her, no Mark, no blog, nada. I am truly blessed.
I just returned from a whirlwind tour of the Northeast with my father (who, like Chris, had to do all the driving), visiting relatives (his and mine). They were, in chronological order:
The best thing, of course, continues to be my lucky association with Christine; not only the founder of this blog, but my savior (literally and figuratively). Without her, no Mark, no blog, nada. I am truly blessed.
I just returned from a whirlwind tour of the Northeast with my father (who, like Chris, had to do all the driving), visiting relatives (his and mine). They were, in chronological order:
Richard and MaryEllen Wilson (he's my cousin on my mother's side) in Cincinnati, Ohio (we flew into Columbus and Dickie, as he's known in the family, drove us down and back).It is good to have such wonderful relatives, direct or indirect; they are all incredibly nice and kind people.
Carol Jones Tama and Larry Tama (she's my father's cousin) in Blossburg, Pennsylvania.
Larry and Sue Frey (he's my cousin and my father's nephew via his sister) in Hastings-on-Hudson, New York.
Mimi Palmer (she's my father's relation) at Schooley's Mountain, New Jersey.
Dorothy Jones (she's the second wife of Morton, my father's uncle, and step-mom to Skip Jones) in lower New Jersey; we had dinner with her and Skip and Yung-hui Jones (he's my father's cousin; she's his wife from his time in Korea).
Saturday, October 18, 2008
Better yet, if still slowly
It's mid-October, and things inch along. Christine continues to take care of me in all ways, thank goodness, and I continue to improve, if by tiny increments. We have two cats now, both foundlings, and they provide daily merriment and comfort. I was never a cat person, always having had dogs, but I'm becoming one thanks to them. We're still awaiting more input before this goes off to become (hopefully) a book. I shall report progress as it happens. Thank you for your support.
Monday, August 11, 2008
Better, if slowly
Chris posted this back in May:
"He also has problems concentrating and gets easily flustered. If you keep up with his blogs, he sounds like the "same old Mark", but he writes early in the morning when he's most clear... I'm sure that for someone as smart as Mark is, living in his confused and foggy world is very difficult. It also depresses him when people don't understand that he can't deal with issues, converse and respond like he used to... Mark is trying to learn to live his life the best he can. He has good and bad days, like the rest of us. On top of it all, he has to contend with isolation and loneliness too."
It's August now, a year since I got off the drugs, but things haven't changed all that much, alas. I still have problems concentrating, but I still sound good, so everyone thinks I'm fine. I don't get to see my friends as much as I'd like (they've got lives, too), so I still contend with isolation and loneliness. Fortunately, Chris hasn't given up on me (thus far, anyway; day's not over yet), and I'm still being cared for better than I deserve. We're still awaiting input from one of my docs and the head of the Angioma Alliance to put all this into a book (which I now owe to a lot of people), but we'll get there eventually.
It's been a long strange trip, and it's still strange. But now that I'm going to live, I will have to figure out what I'm going to be when I grow up...
"He also has problems concentrating and gets easily flustered. If you keep up with his blogs, he sounds like the "same old Mark", but he writes early in the morning when he's most clear... I'm sure that for someone as smart as Mark is, living in his confused and foggy world is very difficult. It also depresses him when people don't understand that he can't deal with issues, converse and respond like he used to... Mark is trying to learn to live his life the best he can. He has good and bad days, like the rest of us. On top of it all, he has to contend with isolation and loneliness too."
It's August now, a year since I got off the drugs, but things haven't changed all that much, alas. I still have problems concentrating, but I still sound good, so everyone thinks I'm fine. I don't get to see my friends as much as I'd like (they've got lives, too), so I still contend with isolation and loneliness. Fortunately, Chris hasn't given up on me (thus far, anyway; day's not over yet), and I'm still being cared for better than I deserve. We're still awaiting input from one of my docs and the head of the Angioma Alliance to put all this into a book (which I now owe to a lot of people), but we'll get there eventually.
It's been a long strange trip, and it's still strange. But now that I'm going to live, I will have to figure out what I'm going to be when I grow up...
Wednesday, May 14, 2008
Even Congress noticed
Seems there's been a move to increase education about my condition (always a good thing).
My ladyfriend, always vigilant, found this:
110th CONGRESS
2d Session
H. RES. 1193
Expressing the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.
IN THE HOUSE OF REPRESENTATIVES
May 13, 2008
Mr. UDALL of New Mexico submitted the following resolution; which was referred to the Committee on Energy and Commerce
RESOLUTION
Expressing the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.
Whereas cerebral cavernous malformation (CCM), or cavernous angioma, is a devastating blood vessel disease that has enormous consequences for those affected and their families;
Whereas cavernous angiomas are malformations in the brain that cannot be detected easily except through very specific medical imaging scans;
Whereas those with a cavernous angioma should not take blood thinners or aspirin, but are rarely aware that they have the disease;
Whereas in the general population 1 in approximately 200 people has a cavernous angioma and about 1/3 of these affected people become symptomatic at some point in their lives;
Whereas there is a hereditary form of the illness, caused by a mutation or deletion on any one of 3 genes that is characterized by multiple cavernous malformations;
Whereas each child born to parents with the hereditary form of the illness has a 50 percent chance of having cerebral cavernous malformation;
Whereas a specific genetic mutation of cerebral cavernous malformation called the common Hispanic mutation has been identified, has been traced to the original Spanish settlers of the 1590s, and has now spread down and across at least 17 generations of families;
Whereas the State of New Mexico has the highest population density of this illness in the country, but Hispanic families and those of all other ethnicities throughout the Nation are at risk;
Whereas a person with cavernous malformations may go undiagnosed until sudden death, seizure, or stroke;
Whereas there is a shortage of physicians who are familiar with the illness;
Whereas this shortage makes it difficult for affected individuals to receive timely diagnosis and appropriate care;
Whereas the shortage of physicians who are familiar with the illness has a disproportionate impact on thousands of Hispanics across the Nation; and
Whereas cerebral cavernous malformation has been understudied by the National Institutes of Health and others: Now, therefore, be it
Resolved, That it is the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.
My ladyfriend, always vigilant, found this:
110th CONGRESS
2d Session
H. RES. 1193
Expressing the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.
IN THE HOUSE OF REPRESENTATIVES
May 13, 2008
Mr. UDALL of New Mexico submitted the following resolution; which was referred to the Committee on Energy and Commerce
RESOLUTION
Expressing the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.
Whereas cerebral cavernous malformation (CCM), or cavernous angioma, is a devastating blood vessel disease that has enormous consequences for those affected and their families;
Whereas cavernous angiomas are malformations in the brain that cannot be detected easily except through very specific medical imaging scans;
Whereas those with a cavernous angioma should not take blood thinners or aspirin, but are rarely aware that they have the disease;
Whereas in the general population 1 in approximately 200 people has a cavernous angioma and about 1/3 of these affected people become symptomatic at some point in their lives;
Whereas there is a hereditary form of the illness, caused by a mutation or deletion on any one of 3 genes that is characterized by multiple cavernous malformations;
Whereas each child born to parents with the hereditary form of the illness has a 50 percent chance of having cerebral cavernous malformation;
Whereas a specific genetic mutation of cerebral cavernous malformation called the common Hispanic mutation has been identified, has been traced to the original Spanish settlers of the 1590s, and has now spread down and across at least 17 generations of families;
Whereas the State of New Mexico has the highest population density of this illness in the country, but Hispanic families and those of all other ethnicities throughout the Nation are at risk;
Whereas a person with cavernous malformations may go undiagnosed until sudden death, seizure, or stroke;
Whereas there is a shortage of physicians who are familiar with the illness;
Whereas this shortage makes it difficult for affected individuals to receive timely diagnosis and appropriate care;
Whereas the shortage of physicians who are familiar with the illness has a disproportionate impact on thousands of Hispanics across the Nation; and
Whereas cerebral cavernous malformation has been understudied by the National Institutes of Health and others: Now, therefore, be it
Resolved, That it is the sense of the House of Representatives that there is a critical need to increase research, awareness, and education about cerebral cavernous malformations.
Sunday, March 09, 2008
How it is now


In light of some recent phone conversations and emails between Mark and his friends, I think it's time I post an update.
It's been one year and three days since Mark came home from the rehab hospital. For those of you who've kept in touch via phone and email, you have probably noticed Mark's most glaring deficit, short term memory loss. You may have gotten phone calls, back to back a few minutes apart. It's not that he forgot to tell you something, but in those few minutes, he's forgotten he's called you at all. You may also have received the same email more than once. These things seem to happen to anyone who's had a head/brain injury, even something one may think is not serious, like a concussion. Believe me, no brain injury is minor. Even though Mark's brain injury was not caused by trauma (i.e. traumatic brain injury) it is none the less classified as a brain injury. Although his short term memory is getting better, it will never come back 100%. He will ask about someone he thinks we haven't seen in a while, although we were together for dinner the previous night. He also has a problem with time. Events from yesterday, last week or last month are all merged. It's worse when he's tired. One of his other deficits is disorientation. He gets easily confused especially when he's not in familiar surroundings (home). He says it's like being drunk, all the time. He's a smart guy and he covers up pretty well, but if you're around him long enough you'll notice his confusion.
He also has problems concentrating and gets easily flustered. If you keep up with his blogs, he sounds like the "same old Mark", but he writes early in the morning when he's most clear.
I sometimes find him asleep in front of his computer, watching tv, and almost always in the car. He still has wakefulness issues (from the original brain injury).
Mark has gone through additional hard times too. A bout with suicidal thoughts in the spring (we had to make sure his guns were out of the house) took him into therapy, a prescription for an anti-psychotic drug, and an antidepressant. It was recommended that he attend a 40 hour per week out patient program for suicide prevention but it was determined that he couldn't keep up with group therapy because of his cognitive problems. The alternative was to continue with outpatient rehab, additional appointments with a neuropsychologist and a psychiatrist, and be under 24 hour supervision at home.
When Mark was weaned off of all these drugs in late August, he went through a manic phase, sleeping only a couple hours a night and he was very difficult to deal with for a couple of months. That was a really rough time for both of us.
His vision will probably never get better and he'll probably never drive again. This also causes balance issues which make it almost impossible to cross streets (his reaction time is also a problem) and there are few sidewalks around here. He's totally house bound unless someone is available to pick him up and drive him places. Now that I'm working full time (since mid December) he likes to get out at night, just when I'm looking forward to some downtime.
Mark did get his prism glasses a couple of weeks ago and we were very disappointed to see that they didn't make his vision much better. The doctor told him that if he holds his head at just the right angle (we're still trying to find that angle) a small amount of vision in the center of his field of vision will line up. The the rest will still be doubled, half at an angle, at that. And when it doesn't line up, it makes his vision worse than without them. We had been holding out so much hope for them to restore his vision and are now facing the fact that nothing will work. I think we believed that his double vision would be alleviated with the glasses. No one ever told us how little difference they would make.
Mark has also been seeing an acupuncturist for a couple of months to no avail. His next alternative will be a black contact lens - which, if he can get used to it, will be an alternative to his patch.
I'm sure that for someone as smart as Mark is, living in his confused and foggy world is very difficult. It also depresses him when people don't understand that he can't deal with issues, converse and respond like he used to.
Mark is trying to learn to live his life the best he can. He has good and bad days, like the rest of us. On top of it all, he has to contend with isolation and loneliness too.
As some of you know, we adopted a cat named Flora last September and we recently found a four month old male kitten who we've named Bud. Mark enjoys their company immensely. It's made a big difference in his life. He sends me text messages at work of their antics.
The one thing we're holding out hope for is that he will never have another bleed, although the neurosurgeons have said it's not a matter of if, but when. Luckily we've been told that his chances for another bleed go down with time.
Chris
Friday, October 05, 2007
Update
Well, it's October now.
My prospective publisher rejected my novel. (Moron. He'll regret that later.)
I'm pitching my cowboy video to a producer, in the hopes that someone will want to make it for real. (Oh, yeah, and pay handsomely for the privilege.)
I do some website work for friends and lovers.
Life at home continues to have its ups and downs, but Christine continues to take excellent care of me. I cannot adequately express my appreciation for all she has, and continues to have, done.
My friends, of course, are a wonderful support for me in these odd times. I thank you all.
My new cat; Flora, is extremely cute, and she continues to amuse and delight us. My thanks to Meg and Ivan for that gift. (And here I wasn't even a cat person, though I am now; this one, anyway.)
Continued visits, of course, are welcomed; I'll be here, when I'm not at Fighting Back (Wednesday and Friday afternoons only).
See you.
My prospective publisher rejected my novel. (Moron. He'll regret that later.)
I'm pitching my cowboy video to a producer, in the hopes that someone will want to make it for real. (Oh, yeah, and pay handsomely for the privilege.)
I do some website work for friends and lovers.
Life at home continues to have its ups and downs, but Christine continues to take excellent care of me. I cannot adequately express my appreciation for all she has, and continues to have, done.
My friends, of course, are a wonderful support for me in these odd times. I thank you all.
My new cat; Flora, is extremely cute, and she continues to amuse and delight us. My thanks to Meg and Ivan for that gift. (And here I wasn't even a cat person, though I am now; this one, anyway.)
Continued visits, of course, are welcomed; I'll be here, when I'm not at Fighting Back (Wednesday and Friday afternoons only).
See you.
Wednesday, July 25, 2007
At the end, at the beginning
I finally finished reading all the blog entries and comments up to today.
I cannot thank Chris enough for creating it in the first place.
Nor can I adequately thank all those who dropped in to check on me and wrote their comments.
Now that I'm back to what passes for normal (barring a few deficits we hope will get better), I'm now faced with the ugly realization that, since I'm not going to die just now, I have to figure out what to do with the rest of my life. (The purported last words of the Buddha were "Strive on with diligence." Can't think of a better slogan to live one's life by.)
So, expect some more writing (especially if that publisher ever decides to buy my novel), maybe some video, and as much general hell-raising as I can get up to.
Visitors, electronic or physical, always welcome.
Know that I love you all.
I cannot thank Chris enough for creating it in the first place.
Nor can I adequately thank all those who dropped in to check on me and wrote their comments.
Now that I'm back to what passes for normal (barring a few deficits we hope will get better), I'm now faced with the ugly realization that, since I'm not going to die just now, I have to figure out what to do with the rest of my life. (The purported last words of the Buddha were "Strive on with diligence." Can't think of a better slogan to live one's life by.)
So, expect some more writing (especially if that publisher ever decides to buy my novel), maybe some video, and as much general hell-raising as I can get up to.
Visitors, electronic or physical, always welcome.
Know that I love you all.
Tuesday, July 24, 2007
How you know who your friends are
To all who read or wrote or both:
Words cannot express my gratitude to my lady love, Chris, for putting all this blog stuff together.
I know it's been a great relief to many to read what's going on with me.
I'm reading it today (24 July) for the first time, and choking up.
Thanks to all my friends for caring so much.
Words cannot express my gratitude to my lady love, Chris, for putting all this blog stuff together.
I know it's been a great relief to many to read what's going on with me.
I'm reading it today (24 July) for the first time, and choking up.
Thanks to all my friends for caring so much.
Saturday, June 30, 2007
Coming back, if slowly
We're still languishing in Florida, enjoying the sun (mostly) and eating well. We also do some serious movie watching, courtesy of Blockbuster, and reading (on the beach and at home) from the local library. My brain is still making the long march back from angioma hell, and I worry sometimes that I won't make it all the way, but mostly my head seems to work the way it's supposed to. Chris, of course, continues to be an incredible support to me, encouraging me even when things seems bleak, and I can't tell you (or her, apparently) how much I owe her. (Though years from now, if I'm lucky, she might believe me.) Life continues to be interesting, though. And beats the hell out of being dead. I'm still awaiting a decision by the publisher about my novel (called "Skeleton Cay", soon to be a major motion picture coming to a screen near you; buy the book when you see it), so if you hear any distant screaming, that'll be me announcing he decided to buy the book. Stay tuned. Life will continue to be interesting.
Friday, June 15, 2007
Back from the dead
I graduated from Rehab today.
That makes tomorrow the famous "first day of the rest of my life".
Having nearly lost it, I intend to experience the remainder as intensely as possible.
Stay tuned; it will get interesting.
That makes tomorrow the famous "first day of the rest of my life".
Having nearly lost it, I intend to experience the remainder as intensely as possible.
Stay tuned; it will get interesting.
Thursday, May 31, 2007
Help Your Favorite Charity While You Shop
Check this out: http://www.igive.com/html/tellafriend.cfm
If you shop through this website, a part of your purchase will go to a charity of your choice.
If you shop through this website, a part of your purchase will go to a charity of your choice.
Tuesday, May 29, 2007
Thursday, May 24, 2007
Test Results
Mark has been very busy these days, but doesn't seem to get around to the blog. So I'll up date it.
Mark had an EEG and an MRI on Monday the 14th. His EEG was normal and he is being weaned off his anti-seizure meds. He actually stayed up after 11pm the other night. This should help him with his excessive sleepiness. Many times he'll ask if he has dreamed something or if it actually happened. So far, all the things he has asked about have been real events. He feels like he's in a dream state. Hopefully this will help.
There was still too much blood (from the original bleed) in is brain to actually see the Cavernous Angioma with the MRI, but the blood is slowly being re-absorbed and the brain swelling is still going down. Until they can actually see the malformation, his diagnosis can't be confirmed. But the good news is that there has been no new bleeding and they haven't seen any more malformations (some individuals have hundreds).
Mark received the good news that he will probably be graduating from rehab by mid June. He's very excited by this.
Mark has been re-reading his most recent unfinished novel and hopes to begin working on it again soon.
I have begun doing some volunteer work for the Angioma Alliance, working on updating a mailing list of doctors all over the US. I would like to be able to donate the printing and postage for this mailing, so if anyone would like to help me out by making (even a very small one) a donation to the Angioma Alliance, please let them know it's for their upcoming mailing. http://www.angiomaalliance.org/donate.html
Chris
Mark had an EEG and an MRI on Monday the 14th. His EEG was normal and he is being weaned off his anti-seizure meds. He actually stayed up after 11pm the other night. This should help him with his excessive sleepiness. Many times he'll ask if he has dreamed something or if it actually happened. So far, all the things he has asked about have been real events. He feels like he's in a dream state. Hopefully this will help.
There was still too much blood (from the original bleed) in is brain to actually see the Cavernous Angioma with the MRI, but the blood is slowly being re-absorbed and the brain swelling is still going down. Until they can actually see the malformation, his diagnosis can't be confirmed. But the good news is that there has been no new bleeding and they haven't seen any more malformations (some individuals have hundreds).
Mark received the good news that he will probably be graduating from rehab by mid June. He's very excited by this.
Mark has been re-reading his most recent unfinished novel and hopes to begin working on it again soon.
I have begun doing some volunteer work for the Angioma Alliance, working on updating a mailing list of doctors all over the US. I would like to be able to donate the printing and postage for this mailing, so if anyone would like to help me out by making (even a very small one) a donation to the Angioma Alliance, please let them know it's for their upcoming mailing. http://www.angiomaalliance.org/donate.html
Chris
Thursday, May 10, 2007
Why she deserves diamonds
My ladyfriend, Christine, has taken care of me, or at least watched over the care of me, since I went down with my angioma last fall. She has done so, in spite of my attempts to either die or come out braindead, with a cheerful attitude and a smile.
I cannot tell you, or her, how much I owe her for all her hard work.
Let's just say that the biggest diamond I can ever afford is barely sufficient compensation for what she's gone through.
I would spend the money on anything else she wanted, but that seems to be her lust object in this world, so I'm happy to acquire one when I can afford it.
Know that I will take the best care of her that I can, no matter what it takes.
She's a very special woman, and I'm extremely lucky to have her in my life.
I cannot tell you, or her, how much I owe her for all her hard work.
Let's just say that the biggest diamond I can ever afford is barely sufficient compensation for what she's gone through.
I would spend the money on anything else she wanted, but that seems to be her lust object in this world, so I'm happy to acquire one when I can afford it.
Know that I will take the best care of her that I can, no matter what it takes.
She's a very special woman, and I'm extremely lucky to have her in my life.
Figuring it out
I've finally reacquired Blogger and enough awareness to get access to the accounts, so I can now post to this blog again. More later.
He's back...
Okay, you weasels, it's really me and I'm going to write it like it is, so hang on.
This has been one of the least-fun experiences of my life, and I wouldn't wish it on more than one or two of my worst enemies.
Christine, my dearly beloved, is to be continually acknowledged as the sole reason I've made it this far, and this well.
It is to be remembered that, at the beginning of all this, I was basically dead.
Not really dead, as Billy Crystal said in The Princess Bride, but mostly dead.
Through the kindnesses of the docs and nurses at the hospital, however, I made it out mostly alive.
Now the nurses at Day Rehab have ahold of me, and aren't letting go.
They abuse me on Tuesdays, Thursdays, and Fridays, and have made of me whatever I have thus far.
Hey, I kid... They are the most hardworking, underpaid, sweet bunch of women, who have given their all to make me better.
And I'm mostly better, which is better than I could have been, surely.
My mind is working, mostly, and my body is pretty much working (I can't talk about certain delicate issues in this blog, per Christine; email me if you need details), and I'm getting back to what passes for normal.
Christine, as noted earlier, has taken incredible care of me throughout, and whatever I am today I owe to her. Along with some serious diamonds, as I understand it...
I grow tired, alas, so I'm going to cut this first post short. More anon.
If you want to see more of Seymour, you need to leave some comments, however. I can blather on for awhile about what's going on in my life, but I'll do better if I hear from some of you.
Later.
This has been one of the least-fun experiences of my life, and I wouldn't wish it on more than one or two of my worst enemies.
Christine, my dearly beloved, is to be continually acknowledged as the sole reason I've made it this far, and this well.
It is to be remembered that, at the beginning of all this, I was basically dead.
Not really dead, as Billy Crystal said in The Princess Bride, but mostly dead.
Through the kindnesses of the docs and nurses at the hospital, however, I made it out mostly alive.
Now the nurses at Day Rehab have ahold of me, and aren't letting go.
They abuse me on Tuesdays, Thursdays, and Fridays, and have made of me whatever I have thus far.
Hey, I kid... They are the most hardworking, underpaid, sweet bunch of women, who have given their all to make me better.
And I'm mostly better, which is better than I could have been, surely.
My mind is working, mostly, and my body is pretty much working (I can't talk about certain delicate issues in this blog, per Christine; email me if you need details), and I'm getting back to what passes for normal.
Christine, as noted earlier, has taken incredible care of me throughout, and whatever I am today I owe to her. Along with some serious diamonds, as I understand it...
I grow tired, alas, so I'm going to cut this first post short. More anon.
If you want to see more of Seymour, you need to leave some comments, however. I can blather on for awhile about what's going on in my life, but I'll do better if I hear from some of you.
Later.
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