All About The Alex Malarkey – ‘The Boy Who Came Back From Heaven’ – Controversy (Updated)
• Did Evangelicals Keep This Boy From Going To Heaven? (Daily Beast)
THE BOY WHO DIDN’T COME BACK FROM HEAVEN: INSIDE A BESTSELLER’S ‘DECEPTION’
FAMILY STANDS BY FATHER WHO CO-WROTE ‘HEAVEN VISIT’ BOOK WITH PARALYZED SON WHO CLAIMED HE SAW JESUS AFTER CAR WRECK — EVEN THOUGH THE BOY NOW ADMITS IT WAS MADE UP
Alex Malarkey…a timeline of truth
DID EVANGELICALS KEEP THIS BOY FROM GOING TO HEAVEN?
• NDE Articles on Pulse
All About The Alex Malarkey – ‘The Boy Who Came Back From Heaven’ – Controversy (Updated)Jan 25
Beth, Kevin, and Alex Malarkey
• Did Evangelicals Keep This Boy From Going To Heaven? (Daily Beast)
• The “Burpo-Malarkey Doctrine”…and dilemma (Nan Bush)
• The boy who didn’t come back from heaven: inside a bestseller’s ‘deception’ (The Guardian)
• Family stands by father who co-wrote ‘heaven visit’ book with paralyzed son who claimed he saw Jesus after car wreck – even though the boy now admits it was made up (Daily Mail)
• Book publishing shocker: That boy didn’t actually come back from heaven! (Los Angeles Times)
• ‘Boy Who Came Back From Heaven’ actually didn’t; books recalled (Washington Post)
• ‘The boy who came back from heaven’ Alex Malarkey says best-selling book is false (Christianity Today)
• Boy Who Claimed He Visited Heaven Reads Bible and Recants Story; LifeWay to Pull Book From Stores (The Christian Post)
• “The Boy Who Came Back From Heaven” Recants Story, Rebukes Christian Retailers (Pulpit & Pen)
Open Letter from Alex Malarkey
An Open Letter to Lifeway and Other Sellers, Buyers, and Marketers of Heaven Tourism, by the Boy Who Did Not Come Back From Heaven.
Please forgive the brevity, but because of my limitations I have to keep this short.
I did not die. I did not go to Heaven.
I said I went to heaven because I thought it would get me attention. When I made the claims that I did, I had never read the Bible. People have profited from lies, and continue to. They should read the Bible, which is enough. The Bible is the only source of truth. Anything written by man cannot be infallible.
It is only through repentance of your sins and a belief in Jesus as the Son of God, who died for your sins (even though he committed none of his own) so that you can be forgiven may you learn of Heaven outside of what is written in the Bible…not by reading a work of man. I want the whole world to know that the Bible is sufficient. Those who market these materials must be called to repent and hold the Bible as enough.
THE BOY WHO DIDN’T COME BACK FROM HEAVEN: INSIDE A BESTSELLER’S ‘DECEPTION’
By Michelle Dean
January 21, 2015
When he wrote a blogpost in 2012, complaining about the explosively popular genre of books about near-death experiences, the evangelical writer and editor Phil Johnson did not know what he was getting into. He was voicing a concern common in the evangelical community about what he called the “Burpo-Malarkey doctrine”. Johnson believed that Colton Burpo, whose story was told in the hugely popular Heaven is for Real, and Alex Malarkey, who had co-written The Boy Who Came Back From Heaven, drew false pictures of heaven in their books.
“No true evangelical ought to be tempted to give such tales any credence whatsoever, no matter how popular they become,” Johnson wrote.
In Bellefontaine, Ohio, Alex Malarkey’s mother, Beth, was reading. Beth and Alex had left a trail telling the truth all over the internet, even as The Boy Who Came Back From Heaven kept selling. But nobody else was listening to her or her son any more, so she called Johnson almost immediately.
“You’re right, this whole story is fabricated,” Johnson recalled Beth Malarkey telling him. “[But] because the book was a bestseller, no one in the evangelical publishing industry wanted to kill it.”
Johnson would spend the next two years trying to help Beth get out that message — that Alex’s story wasn’t real, that a child who had almost died in a car accident in 2004 had been pushed to expand upon a fairytale he’d told when he was six.
Following the accident, Alex spent two months in a coma and woke up paralysed. But his description of what happened in between offered a compelling tale of life after death, including visions of angels and meeting Jesus. The Boy Who Came Back from Heaven, published in 2010 with Alex and his father Kevin listed as co-authors, eventually became a bestseller — one billed as a description of “miracles, angels, and life beyond this world”.
But last week, following persistent rumours, Alex, now 16, revealed that the detail in the book was false. “I said I went to heaven because I thought it would get me attention,” he wrote on his own blog.
“I did not die. I did not go to heaven. When I made the claims, I had never read the Bible. People have profited from lies, and continue to. They should read the Bible, which is enough,” Alex wrote.
Jokes playing on his surname have been made far and wide, but Alex Malarkey is not James Frey for the evangelical set. He was not, and still is not, an adult. He is dependent on the care of others. Contesting this book would mean discrediting his own father as his co-author. It would also pit Alex against an evangelical publishing industry that has made huge profits off too-good-to-be-true memoirs that demand readers take them, quite literally, on faith.
At a time when publishing is under pressure from Amazon and e-books, near-death experience books are reliable, even phenomenon-level business: the story of Burpo — which includes visions of Jesus on a horse and his miscarried baby sister during an emergency appendectomy — has reportedly sold more than 10m books, and The Boy Who Came Back From Heaven moved over 1m copies before its publisher pulled the book from shelves on Friday.
The publisher, Tyndale House , said in a statement it was “saddened to learn” that its co-author “is now saying that he made up the story of dying and going to heaven.” Since the scandal broke, the Malarkeys have not spoken publicly. According to family members, Kevin Malarkey seems to be standing by the book. The agent who sold Alex’s story to Tyndale House — who reassured them by telling them how the book money could help, his mother wrote on her blog — has also remained silent.
But a closer look at family correspondence and social media postings in the years in between reveals how a push for sales can obscure the truth when it’s easier not to listen. Since at least 2011, Alex and Beth Malarkey have been telling people, on her blog, that the memoir had substantial inaccuracies. Emails obtained by the Guardian from Phil Johnson make clear they have been telling the publisher directly since at least 2012.
When pressed to acknowledge the prior correspondence, Tyndale House admitted in a statement that: “For the past couple of years we have known that Beth Malarkey … was unhappy with the book, and believed it contained inaccuracies.”
“It is because of this new information that we are taking the book out of print,” the publisher clarified in a follow-up statement on Tuesday. “At no time did the co-authors communicate to Tyndale that the core story of the book — Alex’s self-described supernatural experience — was untrue.”
But Beth Malarkey’s complaints are all over the internet. You can find her comments cascading on the religious blogosphere, and on her Facebook wall. Usually she leaves them on pieces critical of The Boy Who Came Back From Heaven. She was adamant that the book misrepresented Alex’s involvement. And theirs is not the only near-death story that has raised skeptical eyebrows — even among evangelicals.
“Alex Malarkey not only has to deal with a devastating injury, but now has to disentangle himself from this far-reaching deception,” John MacArthur, an evangelical pastor who has long criticized Christian publishers, wrote in an email. “All these supposed trips to heaven are hoaxes, and they prey on people in the most vulnerable way, because they treat death in a superficial, deceptive fashion.”
The making of a bestseller: the father, the money and the agent
A book deal wasn’t anyone’s first thought after a car accident left Alex paralyzed below the neck in November 2004. In fact, he spent the first two months after the accident in a coma. His parents were churchgoers, and the community rallied around them. In a 2009 article in their local paper , Beth Malarkey said the family had the support of more than 40 local pastors while they kept a vigil at the hospital.
“The consistent message we heard was: ‘Your son will be healed,’” she was quoted as saying. “We believed that hope was there; with God there is no impossibility.”
That is the environment in which Alex woke up: high on emotion, high on faith-based messages. As described in the now-discredited book, his stories about heaven recite certain familiar elements of religious myth. For example, Alex said he saw angels that were “big and muscular”, with “wings on their backs from their waists to their shoulders”. He also said he saw the devil, beheld white tunnels of light, had an out-of-body experience, and spoke to Jesus.
At first, his parents seem to have been dubious. They mentioned the stories in posts to a now-defunct site they’d set up to document Alex’s recovery. But no one, then, seems to have thought Alex’s stories were worthy of a book.
For five years, the Malarkeys were not looking for a wider audience. “I felt no urge, really, to share the story,” Kevin Malarkey actually told the Coast to Coast AM radio show in 2011. “I think, for one, we were busy with our own lives. I mean, my wife — she doesn’t like when I say it — kind of became a full-time nurse at that point.”
But then, in January 2009, Alex attracted media attention when he became the youngest person ever to have a “diaphragm pacing system” installed. Christopher Reeve, who played Superman, famously had one , after his injury in a horse-riding accident. Alex’s was installed by the same surgeon.
On her blog , Beth Malarkey that her husband was seduced by the press there and then. Kevin has openly said that an Associated Press reporter covering the surgery told him to write the book. “I kid you not,” Kevin said in that 2011 radio interview. “My response was: ‘About what?’”
Within four months, Kevin Malarkey had brought an agent named Matt Jacobson to the house to meet his son. Beth wrote on her blog that she was against the idea of any meeting, because she felt Alex was too ill. (The health of a quadriplegic can be very delicate, and Alex was in and out of the hospital with various ailments throughout 2010 and 2011.) Beth was overruled. And she also has bad memories of the encounter:
“I remember the man talking to Alex and to me, but not by myself. He never really asked me what I thought, but instead told me what monies could possibly be made from not only doing a book, but a series of books and possibly a movie. He reassured me how much that money could help with Alex’s needs. What stuck out was money!”
Jacobson, the agent, did not respond to multiple requests for comment for this article. In the book’s acknowledgements, Kevin Malarkey writes: “Thank you, Matt Jacobson, for — what haven’t you done? — praying, writing, editing, and serving us as our agent and, most importantly, as our friend.”
‘From Alex’: a deal, a video shoot and a contract
Kevin Malarkey got his book deal by late 2009. The publisher would be Tyndale House, a major Christian publishing company with annual revenues of about $175m. Tyndale publishes a popular version of the Bible (the New Living Translation, with some 26m sold) and the Left Behind series (about 63m copies). And like every Christian publisher, Tyndale was aware of the public appetite for been-to-heaven-and-back stories. Popular accounts of near-death experiences have been commercial bestsellers since at least 1975, as Robert Gottlieb pointed out in a recent article for the New York Review of Books.
But Beth Malarkey recounts on her blog that Tyndale House employees came to the Bellefontaine home for visits and interviewed Alex repeatedly as the book was prepared. Promotional spots were filmed inside the Malarkey home.
At that time, Alex was still repeating the stories he had told about his spiritual experiences. But Beth writes that it was obvious to her that the focus of the Tyndale House employees’ questions made Alex uncomfortable. They kept asking about heaven and angels, and he was growing unhappy about having to talk about them.
Even a Tyndale House executive seemed to acknowledge this, in an April 2012 email to Beth about the film crew obtained by the Guardian: “I wasn’t there, but was told by my colleagues that Alex didn’t want to be interviewed on video. I wasn’t aware that Alex didn’t want anything in the book about heaven and angels.”
Beth adds that when consulted on the cover and title of the book, Alex was strongly against the ones that were eventually chosen. The Boy Who Came Back From Heaven was nonetheless published — with Alex’s name on the cover — in July 2010. Some parts of the book are presented so as to suggest that they are in Alex’s voice. They are titled “from Alex”. But all parties seem to agree that Alex did not write them, and he never signed a contract with Tyndale and on the copyright register. While Alex is listed as a co-author of the book, Kevin Malarkey is listed as the only claimant of the copyright. On the form, Alex’s father indicated he had acquired his sole copyright “by written agreement”.
The copyright, as it turns out, was lucrative. The Boy Who Came Back From Heaven spent much of 2011 on the New York Times bestseller list. Kevin Malarkey built a speaking career on it, traveling and giving interviews — alone. He could not be reached for comment for this article.
‘Giving Alex a voice’: emails, inaccuracies and the meeting that never happened
The dam began to break in August 2011. Early that month, Alex logged on to Facebook and went on to the fan page for the book. (He can access the internet himself, with a computer he controls with his mouth.) There, he left a cryptic comment under his own name: “1 of the most deceptive books ever.”
Fans began to reply angrily, questioning whether this could possibly be the real Alex. Whoever controlled the fan page deleted the comment.
Beth Malarkey later posted a copy of the Facebook comment thread to her blog . From there on out, she began to write — on evangelical blogs and in private emails to the publisher, obtained by the Guardian — about how her “child is being exploited and that is truth”.
Tyndale House maintains that it only learned of Alex’s retraction recently. But as early as April 2012, Beth was in touch with the publisher, complaining of what she called the book’s inaccuracies. Her emails are long and complicated, quoting passages from the book and then explaining what is wrong with them.
“I know it is not all that I know to be ‘off’ but it is at least some,” she writes in the first such email, dated 22 April 2012. Almost all of the inaccuracies, she say, relate back to a single theme: that this is not Alex’s story, but Kevin’s, and that it is inaccurate. (Kevin and Beth Malarkey are still legally married, but do not speak to each other, and have not for some time.)
Jan Long Harris, a publisher with Tyndale House, was Beth Malarkey’s primary correspondent. She offered to correct inaccuracies in consultation with Kevin, “since our contract is with him”. According to the emails newly obtained by the Guardian, Harris acknowledged that Beth had presented larger issued with the book, writing: “I realize that your concern about what you feel are inaccuracies is not the only issue you have with the book, but it is the issue that could be most easily addressed.”
Beth replied: “Revisions are not what will restore what has been stolen from my son, who continues to suffer.” She asked if Tyndale House could break its contract with Kevin Malarkey.
Harris, evidently exasperated, replied:
“Even if we could make a case for breaking our contract, the book could (and probably would) be back in print with another publisher within a few weeks. So I don’t think that would achieve your goal.
“Also, I’m sure you can understand that we can’t break a contract with an author just because someone else — even if the someone else is the author’s spouse — makes accusations about him. We have to give the author, in this case Kevin, a chance to respond.
“As far as giving Alex a voice, we would be glad to talk with Alex and hear what he has to say about the book. I offer again to come to your home to talk with you, Kevin and Alex, for the purpose of giving all three of you a voice. I know you are concerned that there might be repercussions after such a meeting, but would they be worse than the current situation? At the very least, I think a phone call with you and Kevin is essential.”
When the Guardian contacted Tyndale House for comment about the email correspondence, the publisher wrote back with a more detailed statement: “On more than one occasion we asked for a meeting with Kevin, Beth, Alex and their agent to discuss and correct any inaccuracies,” the publisher said, “but Beth would not agree to such a meeting.”
In its Tuesday statement to the Guardian, Tyndale House clarified:
“After originally agreeing to a meeting, Mrs Malarkey sent us an email on May 22 2012, saying that out of concern for her son she no longer wished to meet. When we learned of Alex’s recent public statement, we responded by taking the book out of print.”
According to Phil Johnson, who keeps in regular touch with Beth and provided her emails with Tyndale House to the Guardian, the reason Beth did not agree to a meeting was that the situation seemed adversarial to her.
“The thread that runs through all their correspondence with Beth is that they wanted to corner her before they would be willing to investigate her concerns,” he wrote to the Guardian. “They kept pressing her to agree to a meeting where she and Alex would have to face Kevin and a phalanx of editors who were determined to press ahead with the project, no matter what objections Alex and she might have.”
Beth Malarkey simply kept complaining on the internet. Tyndale House kept publishing a book with a quadriplegic boy’s name on the cover, even though it knew he had substantial objections to the book. And for years, nothing changed. Until Alex posted that open letter.
‘I still remember’: the anger of the duped and the persistence of believers
On Friday, as the headlines and Malarkey puns were still flying, Johnson spoke to Beth Malarkey on the phone, gauging her mood. (She has declined all press interview requests , citing childcare obligations.) Her feelings, he told the Guardian, are mixed.
“She’s glad on one level that the truth is finally out there,” he said. “I also think she’s scared, a little bit cautious about what is yet to come. She doesn’t have any source of income. Her life is not easy.”
There will be consequences for the Malarkeys. They cannot continue as they have. The evangelical publishers once so eager to pick up her son’s story are bound to stay away now. This disgusts people like MacArthur, the pastor and critic of the niche publishers, who commented: “The word exploitation is very appropriate. The children are exploited. The Christian public is exploited. The buyers are exploited.”
And any other way for the Malarkeys to make money seems to be foreclosed. The second book Kevin Malarkey published with Matt Jacobson, entitled A Beautiful Defeat: Find True Freedom and Purpose in Total Surrender to God, did not sell quite as well. It lacked the emotional pull of the near-death hook. Already, it has garnered one angry anonymous Amazon review : “So basically the same guy who lied about the accounts in his first book, The Boy Who Came Back from Heaven (notice he doesn’t even mention the title in the About the Author — strange, huh?) has written another one,” the reviewer writes. “He shouldn’t be allowed to author any more books unless it’s about telling the truth and apologizing to the public for the first dupe.”
If such anger seems out of proportion, the anger of the duped often is. There is something profoundly enraging about having a story you truly believe, as many truly believe such near-death narratives, exposed as false. Colton Burpo, the subject of Heaven Is For Real, seems desperate himself to avoid the blowback. Since Alex Malarkey’s letter broke, Burpo’s been making the rounds of television shows proclaiming that he still believes he saw heaven. “I still remember my experience my heaven,” he insisted to Christian outlets .
Phil Johnson explains the continuing faith in these stories by reference to scripture: “The Bible says people like fables.”
FAMILY STANDS BY FATHER WHO CO-WROTE ‘HEAVEN VISIT’ BOOK WITH PARALYZED SON WHO CLAIMED HE SAW JESUS AFTER CAR WRECK — EVEN THOUGH THE BOY NOW ADMITS IT WAS MADE UP
By Lydia Warren and Steve Hopkins
January 16, 2015
A father who co-wrote a book with his son about how the boy visited heaven after a car wreck was telling the truth, his family has said — even though the youngster has now denied the tale.
Alex Malarkey, now 16, was in a coma for two months and left paralyzed after the wreck in 2004, but when he awoke, he claimed an angel had lifted him up to heaven where he met Jesus and Satan.
With his father, Kevin Malarkey, he wrote best-selling book “The Boy Who Came Back From Heaven” in 2010 — but this week, Alex claimed the whole story was a lie.
But Kevin’s family said that is not the [truth].
‘Kevin has always told the truth,’ his mother Joan told DailyMail.com on Friday. ‘He told the truth and he did the right thing. He’s not sure why Alex is saying these things now.’
Kevin Malarkey, who is recently divorced from Alex’s mother Beth, has not publicly commented on Alex’s claims, but Joan Malarkey said ‘he has a lot of support’ from relatives and friends. He published a second book last summer, ‘A Beautiful Defeat’.
The reaction comes after Alex claimed his story was nothing more than fiction.
In an open letter addressed to “Sellers, buyers and marketers” on Pulpit and Pen, Alex wrote: “I did not die. I did not go to heaven.”
“I said I went to heaven because I thought it would get me attention,” he wrote.
“When I made the claims that I did, I had never read the Bible. People have profited from lies, and continue to.”
Adding that only the Bible describes what heaven is like, he said that people “should read the Bible, which is enough. The Bible is the only source of truth. Anything written by man cannot be infallible.”
Alex is still severely disabled and is cared for by his mother at home in Ohio. They live together in Huntsville with his three siblings. Kevin Malarkey lives in Columbus, Ohio.
Beth Malarkey has said that Alex does not receive any money from the novel, which made the New York Times Bestsellers List in 2010.
Long before Alex made his statement, Beth Malarkey had claimed on her blog that the book was made up and that when she approached the publishers, they did nothing.
“There are many who are scamming and using the Word of God to do it,” she wrote last April.
“It is both puzzling and painful to watch the book The Boy who Came Back from Heaven to not only continue to sell, but to continue, for the most part, to not be questioned.”
She even claimed that when Alex told a pastor that the book was made up, the man told him the publication was “blessing” to people and to stay quiet.
She added: “The ones making money from the book are NOT the ones staying up through the night, struggling for their breath, or were they the ones at six years old, waking up unable to move or breathe and in a strange place after last remember seeing a car coming right at the car he was riding in”.
Many Christian publishers are now announcing that they will stop selling the book.
One of the book’s stockists, The Lifeway Christian Bookstore, told Pulpit and Pen that it plans to remove the book from its shelves and send back its current stock.
In a statement, its director of communications, Martin King, said:
“LifeWay was informed this week that Alex Malarkey has retracted his testimony about visiting heaven as told in the book ‘The Boy Who Came Back from Heaven.”
“Therefore, we are returning to the publisher the few copies we have in our Stores.”
The book is one of three “real-life” tales of paradise on sale at Christian book stores — 90 Minutes in Heaven and Heaven is for Real are the others.
The Malarkeys’ book has been a popular read in Christian book stores and had a 4.3 rating on Amazon. It became part of a popular genre of books known as “heavenly tourism”.
Another young boy’s tale of going to heaven, Colton Burpo from Nebraska has recently been made into the movie Heaven is For Real.
The publishers description on the book reads:
“In 2004, Kevin Malarkey and his six-year-old son, Alex, suffered an horrific car accident. The impact from the crash paralyzed Alex — and medically speaking, it was unlikely that he could survive. ‘I think Alex has gone to be with Jesus,’ a friend told the stricken dad.
“But two months later, Alex awoke from a coma with an incredible story to share. Of events at the accident scene and in the hospital while he was unconscious. Of the angels that took him through the gates of heaven itself. Of the unearthly music that sounded just ‘terrible’ to a six-year-old. And, most amazing of all . . . Of meeting and talking to Jesus.
“‘The Boy Who Came Back from Heaven’ is the true story of an ordinary boy’s most extraordinary journey. As you see heaven and earth through Alex’s eyes, you’ll come away with new insights on miracles, life beyond this world, and the power of a father’s love.”
Alex Malarkey…a timeline of truth
By Beth Malarkey (the mother of Alex)
Monday, September 2, 2013
I like to journal for a variety of reasons. I have multiple journals for various subjects. One thing journaling does is help me to keep track of details. I did not do baby books for my kids, but instead kept journals on each one. Ryan’s is the sketchiest because he was born so close to the car accident. I can look back at the journals to keep facts straight, help me to remember the details of special events, see how far we have come, see how crazy it was, what God brought me/us through, etc. From the journals, I have done from time to time, timelines. Sometimes when I have put together timelines, I have seen patterns that have helped me to better understand something. I am going to do a timeline from January 2009 until present. The concentration will be from 2009-2010 when my son Alex was so bad physically. I have been asked many questions about Alex and his health. I have seen many things written about my son many of which are either blatantly wrong or greatly exaggerated. No one has endured the physical struggles that Alex has but him himself. NO ONE! I am with him ALL the time and yet have no idea what it feels like to be in his position and I remind him that he does not know the view from mine. We each have journeys full of struggles and triumphs. I cannot speak for Alex about what he has gone through, but I can talk about what I have gone through and watched him go through by being beside him. No words, though, could do the journey justice. Some things, no matter how hard I would try to explain, are ones that you could only grasp if you witnessed it for yourself.
Many have read a book about Alex and then stated that they could not believe what he went through making it look like the struggles were in the past tense. As you read the following timeline, I think you will first see that Alex’s struggles are not in the past tense. I think you will also see that being fully aware of what is going on around you and having those whom you think you can trust, betray you, is a position that few of us could fathom let alone try to deal with as a young child. I know I have often caught myself trying to think back what it felt like to be 10-15 years old and how I might deal with some of what Alex has had to deal with, but then I stop for there is no way that I could imagine. Alex’s struggles after the aftermath of the accident were not only minimized in the book, but spun in a way to capitalize on them. At times throughout the years of 2009-2010/11, whenever Alex tried to express a struggle (or I did) individuals would just discount his feelings and instead tell him he was blessed and go on to talk about a “book” which was in fact, one aspect of his struggles. He would be so bothered, that, as Alex kept returning to the hospital; stress would be examined as a possible cause of the physical issue that Alex was dealing with.
Ok…I will start with January 2009…Alex had surgery to implant a diaphragm pacer which is basically another form of mechanical ventilation but a much better, natural, and healthier form. I had been in contact with the group at University Hospitals Cleveland which included Dr. Raymond Onders and Mary Jo Elmo (whom I talked to the most) for about three years leading up to the minimally invasive/outpatient surgery. The surgery was a huge success and it seemed like we were going to be heading for an exciting year. Some individuals in our lives, sadly, were not focused on Alex and how he was doing, but more on the fact that the news of the historical surgery was everywhere on the internet and news. Those individuals were caught up in the attention and possible fame that was coming from what Alex just went through. It was AP (associated press). Alex was the youngest person implanted and it was big news. To me, I was a bit overwhelmed. I was used to Alex’s ventilator tubes. I could change them out if they broke. With his diaphragm pacer, if a wire broke, I could not fix that…yikes!! Well, Alex recovered and we left the hospital to go to a hotel. We would spend an extra day in Cleveland due to a huge snowstorm.
By the end of January, Alex was pacing without his ventilator really well. Woohoo…he was going to be vent free!!! Not so quick. On February 2, 2009, Alex started to struggle with his heart rate and oxygen levels. His heart rate would all of a sudden plummet. His oxygen level would dip as well. On this day, his heart rate would plummet to 39 as I got him into bed (so it could have actually dropped lower). What was going on??? I was in contact with Dr. Onders often for it seemed that somehow whatever Alex was dealing with might be related to the surgery he had just had. (It is so easy to look back and see things that you missed while you were in them). For the next few days Alex would struggle and not be able to get out of bed. Finally, on February 7, 2009, Dr. Onders suggested (after trying to help me stabilize Alex over the phone) that I take Alex to the hospital just to get an x-ray of his lungs. I took Alex to the hospital and began what would end up being a nightmare of a situation. We arrived at the hospital about 9:30 P.M. Alex would spend the next eight hours in the e.r. with no food/water/or entertainment and on a hard gurney. I kept moving him as much as I could so as to avoid a sore. The medical staff started to give Alex some heavy-hitter I.V. antibiotics while refusing to call Dr. Onders despite my numerous attempts to try to get them to do so. The doctors would end up admitting Alex for an infection (with no proof of one), and they would not let him eat or drink. They were also trying to say that Alex was aspirating though he has successfully been eating and drinking for the three years prior to this visit. Basically, they were shooting at whatever they could and then trying to prove what they were shooting at. It would end up being a 16 day nightmare of a stay. I watched Alex go through torture. I ended up writing a 4 page letter to the department that listens to concerns (Quality assurance department). I will just say that we no longer go to that hospital and have papers to say that if somehow Alex ended up there, he would be sent on. My purpose in writing the letter was to try to prevent another individual from having to go through what dear Alex did. I will say, though, that it was the support staff that were responsible for helping to save Alex…yes, save, him. The medical staff had been giving Alex medicine that he had an armband on that stated he was intolerant to. The response of the intolerance was respiratory distress which he had been greatly going through. It was a brave nurse and respiratory therapist that spoke up and became the voice that would be listened to. No medical professional should try to prove what they want to believe to be true when all evidence is pointing against their thoughts and in fact, heading that patient into a dangerous situation. In 16 days, Alex had lost his voice, had ringing in his ears, threw up, was told he might never eat again by mouth, and no infection was ever found! It was by the advice of a pharmacist that I have the lab results for Alex pulled. It was those lab results that combined with the courage of the support staff that Alex survived. Later, Dr. Onders, Mary Jo, and I would determine that Alex’s lungs had dried out from pacing too quickly. I will save the full explanation of what that means for another time.
Alex and I got home and he started to recover but still needed to have oxygen put through his ventilator (he normally did not require that). My other three were still so young. I had never been away from them for that length of time before. I got just a teeny tiny taste of what some of our brave soldiers must experience. I say teeny tiny….
Alex did get better but was not able to pace like he was before that episode. I still was in communication with Dr. Onders who was curious himself why Alex was not able to transition to full-time pacing. In May of 2009, Alex seemed sick. I had to use a good bit of oxygen through his ventilator to help him feel comfortable breathing. Alex was started on an antibiotic to try to prevent another hospital visit.
On May 21, 2009, against again my request to not have someone come due to Alex’s health, an agent for my husband and the book that he was working on (at least I think he had started it but I am still not sure to this day) came to our house. I remember the man talking to Alex and to me but not by myself. He never really asked me what I thought but instead told me what monies could possibly be made from not only doing a book, but a series of books and possibly a movie. He reassured me how much that money could help with Alex’s needs. What stuck out was money! Not concern for Alex’s well-being as evidenced by Alex being on oxygen and the person trying to push me to take Alex into Columbus for a meeting the next day, and the individual staying at our house until 1:00 A.M… Obviously the individual had no idea, or maybe concern for Alex’s health, but was more concerned about missing out on a sale. Sounds harsh but sometimes reality can be harsh. That person would end up not having much communication with either Alex or I over the next year except to leave a few voicemail messages for me on my cell phone wanting to offer that if I were interested in doing a book, to call him back. I did not receive the messages until I got back from the hospital with Alex after his back surgery (that is coming up later in this post) and writing a book was not something that I was either remotely interested in, could think about, or would consider. I have four kids to care first and most importantly of all. I can still Google this individual on the internet and find places where he claims to be an agent for Alex not just my husband. It states that he is Alex’s agent in the book itself! Again, if there are any legal contracts with my son’s name on it, I, nor Alex, have seen them.
Dr. Onders decided to bring Alex into the PICU (pediatric intensive care) at Rainbow Babies and Children in Cleveland. With Alex in Cleveland where the diaphragm pacing team was, he could be evaluated and the “real” issue could be figured out or attempted to be figured out. It was on that that I was able to see how differently eyes trained in the same profession can see things and how radically different they could approach handling them. It was on that stay that we met Dr. Karen Lidsky, who has become a primary doctor for Alex, and decided that Cleveland was going to be where Alex would go for the majority of his medical needs. Alex would spend about five days in the hospital that time and have a little procedure done during the stay to help open up his airway a little more.
As 2009 moved along, Alex started to grow. As he grew, and his muscles did not give his spine the support it required to stay straight, his spine started to dramatically curve. Dr. Onders had recommended that Alex go to see Dr. George Thompson who is an orthopedic surgeon in Cleveland and who specializes in spinal fusion surgery. In October of 2009, Alex saw Dr. Thompson. It was on that visit that we found out that Alex’s spine had gone from a degree curve of 50 in February to a degree curve of 89…almost 90 degrees! His spine had collapsed. Alex had to have surgery. We were both devastated. We wanted to so badly go to Kennedy Krieger in Baltimore. Alex has never been able to do any official “rehab” and at K.K.I. they focus on recovery through activity-based therapy. That trip would have to wait and is still waiting. Alex and I grieved. Ok, so surgery is what was needed. Over the next two months leading up to his surgery, Alex could not eat, could not sleep, had trouble sitting up, and started hallucinating. When I look back, I can now see how he had been doing all of the things mentioned throughout the 2009 year, but it definitely got worse near the end of the year. By time his surgery date rolled around, Alex was begging to get it done. He was miserable.
On 11-9-09 a group from a publishing company came to our house despite my attempts to stop it. It was never discussed with either I or Alex that the story line would be something other than about the car accident and his survival. I knew, and Alex knew that details were gathered, but that had been done before and stories had been written that did a fantastic job of pointing to God (not near-death experiences or supernatural beings) while also allowing room for the severity of the struggle that Alex was enduring and had endured. The stories that had been done also made sure to point out that ALL members of the family were affected. SO a story in and of itself was what we thought was being done by one individual’s viewpoint. What it would turn out to be, is something radically different.
SO the people came, Alex could barely sit up, and some of them tried to question him about things he did not want to discuss. It was to the point where I finally took him into a room and told him that he did not have to say anything that he did not want to. I took him back to where the others were and made it clear that adults had no right to ask Alex about things that he did not want to talk about just because they were adults (I guess I did show meager attempts to be strong). When titles were mentioned and pictures shown, Alex very clearly and strongly expressed his opinions against certain ones. He was told that he did not have final say. The title and picture that were used were never discussed again with Alex, but were chosen knowing that he had expressed strongly against them and gave reasons for his opinions. I will say that there was one dear individual out of that gathering that has become a great friend to Alex and advocate for him and one that has given me a tremendous amount of support and encouragement. Again, the fact that Alex’s name would be on the cover and a story told as if it was his first-person point of view was not made clear or known to either Alex or I.
12-02-09 Alex underwent a spinal fusion surgery. His body was so fragile as he entered into surgery. Because he had been unable to eat much, his weight had gotten down to a gaunt 55 pounds. He had a grayish cast to him. I have since the surgery told him that I wish I had known about the nutrition shakes that he currently drinks for breakfast and I could have got him to drink those. Alex told me that he would not have been able to tolerate them. So Alex entered into the surgery. The fusion started at his c2 vertebrae and goes all the way down to his pelvis. The curve that was at nearly 90 degrees was greatly straightened. The surgery went really well (although later I would find out that Alex’s blood pressure had been very difficult to maintain throughout the surgery). What no one expected was that Alex’s body would respond in such a dramatic way as it did. He and I would end up spending the next 21 days in PICU at Rainbow Babies and Children. That time is so difficult to reflect upon, and equally difficult to put into words to fully portray how challenging it was. Most individuals can expect to spend 3-5 days in the hospital after their back surgery just to put things into perspective. Some of the things that Alex would need/experience were….he would need to have two pints of blood, potassium, could not tolerate even intravenous nutrition which resulted in skin breakdown and a sore on his tailbone(he had never had a sore before that), his blood pressure would sky rocket and then plummet, he did not know who I was, could not sleep for three days straight, his nerves went into hyper drive which resulted in him biting through his lip and us having to strap his lip outward to prevent further trauma or possible infection, he went totally unresponsive after a dose of Tylenol with Codeine (scared everyone there) and they thought he had developed a brain bleed or had a stroke (did I mention it was really late at night too when it happened), he dumped (peed out) any fluids they tried to give him until brilliant Dr. Lidsky (who HATES TO EVER GIVE UP) figured out that you have to give Alex liquids through his belly the more natural way then his veins (artificially his body just sort of rejects the extra fluid as a regulation effect)… Alex would be known as the “worst” kid medically speaking in the PICU on many of those 21 days. Alex and I had a few visitors….my sister, my dear friend Wendy and her mom, a pastor and his son came once two weeks in but then we never saw them again, and a friend who brought some decorations to make the room a bit festive for Christmas. It was a tough time, a learning time, and an eye-opening time.
I have been asked about quotes in a book by me. I answered that I neither verbally nor in writing gave approval for any quotes. In fact I instead verbally gave my desire to not have any quotes by me put in any book. There was a time that I was sitting in PICU and told over the phone that some words from a webpage that no longer exists (prayforalex.com) that were written by me were going to be placed in the book. I was sitting in PICU with Alex! I told the person that they could not do that, to which they said they could and that that site was public. GRRR….the best I could do was to tell the person that they had better get every word correct. I have documentation of what is written in the book and that post from the webpage. The two do not match up :( It saddened me more to learn that that interaction that was twisted is part of a Bible study…what? I certainly have witnessed some shocking things!
One little side note on Alex not knowing me… One day, about the second day after his surgery, Alex looked at me and looked very confused. I asked him if he knew who I was. He said no. I started to cry to which he said, “I do not know who you are, but you can stop crying. It is going to be ok.” I lost it!
The night before Christmas Eve, December 23, 2009, Alex and I came home. In less than a year, I had been away from my other three kids for more than I had ever imagined I would ever be. Man! I remember many times just lying on the couch bed in the hospital room and crying. My dear Alex was going through so much and at the same time, I had three other young kids over three hours away. Again, what individuals like those that battle for our freedom go through!! God bless them!!!
Alex slowly, very slowly, started to seem to regain a bit of strength. He was not able to get up because the sore still was healing, he could not access the computer because he was not strong enough to use his mouth mouse, and he certainly could not go anywhere. BUT…he was home!!!! Then his power chair shorted out which meant he could not be up in his chair for more than an hour at a time even if the sore healed. A person who is paralyzed like Alex needs their position change at least every hour, some more, some less. In a power chair, if the power does not work, there is no way to change the angle of the seat; therefore, the pressure cannot be shifted.
At the end of February 2010, Alex seemed to be getting sick. At the beginning of March of 2010, a film crew showed up at our house to film, what I thought was going to be a documentary on Alex. I had seen some documentaries before that were done by the filming company. (I know…how did I not put two and two together…hindsight is easy right!) I had requested that the company not come due to Alex’s health, but my request was ignored. The crew came in filming without praying with us first. I frankly found that to be strange and shocking. My request for prayer before filming would at least get honored on the next day. The crew would come to our house over the next several days, and as they did, Alex became more upset. They tried to get him to talk about things that he did not want to talk about. They tried to get me to talk about things that were not mine to discuss. I did not get it but I sure do now. Remember, we did not know the storyline, although, we sure were getting lightning bolt clues. I found out that people were being interviewed that had not been involved in our lives until a year previous to this “film.” and certainly could not speak about the time surrounding the accident. What about some of the dear people who were there? What about my dear friend and her husband who had taken my two middle kids for the first three days and loved on them in such a Godly way? What about the ones who brought us food, clothing, prayer, sat with Alex so we could travel to our house (including during snow storms and Christmas Eve), held my newborn until I needed to nurse him including the first night after the accident…ALL night (we did not sleep)? Why they were not involved? There was so much that was off! The advice given to me was to speak truth. In the documentary, Alex looks very uncomfortable. His eyes are down. Where is the Alex smile??? There is much I could say about that week but I will stop at what I have just said. It was again…eye-opening! I wish I would have never done that film, but I know that I did try to stop it, and it is because of what I witnessed in the process of the filming, that I started seeing how twisted truth can become, and how individuals would knowingly support that twisting. That is not to say that ALL that were involved knew what was happening…I did not…but others did!
Within two weeks after the filming, Alex would end up in the hospital. His heart rate had been plummeting. The doctor was going to fly Alex to Cleveland, but the weather was bad so we went Medflight ground crew (portable ICU on wheels). Alex would spend ten days in the hospital. They put him on another medicine in an attempt to control his blood pressure and heart rate. One difference here is that the doctor told me if I opposed, she would not do it. I wanted to so badly to work with her. She was trying so hard to do something. We had to work as a team. Alex came home on a new medicine. He was now on two for blood pressure. He has never had to take blood pressure medicine before. We were heading into April at this point, Alex turned 12, and he was not doing well at all. He could not sit up, (actually he had to lie flat) could not eat solid foods, could not stand anything to touch his head, and if he did try to eat, his stomach would start to hurt which would send his body into a reaction of dropping heart rate and blood pressure. UGH!!!! Stress was considered as a possible cause but Alex did not want to share his feelings.
At the end of May of 2010, Dr. Lidsky decided to bring Alex in check for one more possible cause. They wanted to do a scan to see if something had happened to the base of his skull, which would then tug on his brain stem, which would then cause dramatic autonomic reactions. She was trying so hard. It was on that visit that she had to pull me aside and give me the difficult talk. She, and her colleagues, truly believed, from all the evidence that they had to go on, that Alex was declining and going to pass away. She wanted me to promise me to not perform heroics on Alex when, not if, he coded in the middle of the night (she had learned how I would do everything I could for my kids. Talk about a testing of your faith! I had to trust God to handle this one. I did not believe Alex was going to pass. I was not speaking out life (I am not God), I just trusted him and what I knew He could do.
Alex was only in the hospital a few days. When we came home, an old friend brought a new set of medical eyes to our house. This doctor had studied Alex’s original post-accident MRI’s to examine his injuries. He did not believe Alex was declining. He believed instead, like me, that the new medicine was causing the issues. He was willing to go through, what might be a tough weaning process to get Alex off of the new medicines. I ran out of the one medicine, and since it was not a central nervous system medicine, I could just not get the script refilled and could therefore, just stop giving Alex that one. It worked with no reactions. He still needed to come off the second medicine which was a central nervous system one and a powerful one.
On July 7, 2010, just six days after a book came out with Alex’s name on the cover, Alex went into respiratory distress while at home. His body was having a toxic reaction to the medicine. How I knew that was because of what I had seen while he was in the other hospital in February of 2009 (see how that can work). I knew Alex was poisoned. I knew that if I took him to the hospital, they would just think he was going to pass. Their hands would be tied for it might be too risky to stop the med all together. I called the doctor that had come to our house and filled him in as to what was happening. He told me to not give Alex the next dose of the medicine. Alex was so uncomfortable. He did not feel like he was getting air even if I added oxygen to his ventilator breaths. I had to use his ambu bag (breathing bag) to give him extra breaths and basically overinflate his lungs a bit. It gave him moments but just moments of relief. I could only leave his side long enough to go very quickly to the bathroom…..very quickly. I sat next to him giving him “boost” breaths ALL day and into the night. Finally, at 3:30 A.M., the medicine must have worn off enough that his body quieted down and he was able to get comfortable and go to sleep. The next day, I held the medicine. The doctor instructed me to give Alex a 1/2 dose every other day until he longer showed a reaction to it. It took almost a week, but finally, Alex was off of both medicines. It was crazy. Each time, for the first few times, when I gave even that half dose, Alex would have a little reaction. It made me more aware of those that do not have the strength to speak up or courage to. In this case, unlike the one at the previous hospital, the doctors were basing their actions on evidence that they had….lots of evidence. They were doing what they thought they could in a very difficult to figure out situation.
Up until that week of the toxic reaction, Alex had been only getting nutrition via nutrition shakes because solid food made his stomach hurt which then made his bp and hr drop. Well, after he got off of the medicine, the doctor had me give Alex a nutrition supplement. (I learned a lot through that time the difficult way). Suddenly, Alex could eat! He could go up at a higher angle on his tilt table. He was getting better! Physically Alex was finally recovering. Emotionally, he was very upset at the whole book which was now out, with the title that it had, with the story line that it had, with his name on it which he had not been told about (nor I),…how could we stop what had already gotten to this point. Do we try to stop it, or do we try to finish getting Alex back to a healthy point? I think that answers itself right?
Alex’s was still not able to access the computer, but we had started to try to get insurance to pay for an eye gaze computer which Alex could more easily use. The virtual school paid for his old chair to get fixed enough that he could get up in it. At the beginning of the year, we had put in for a new chair for Alex. He can get a new one every five years and it had been five years. The reason than that insurance could not pay for his old chair to get fixed when it shorted was that if they fixed the old chair’s electrical components, they would then say that Alex did not need a new chair. Ugh! SO we had to find a way to pay for his old chair to get fixed. The virtual school funded the repair and Alex started to get up out of bed again. He had endured so much that summer. It was beautiful summer weather wise and the only time he got to go outside were the times when I strapped him to his tilt table and somehow managed to wheel him on his table, while pulling his ventilator, outside. I still wish I would have filmed it to show what you can do when you want to and when it is for someone you love, especially a child. Can you imagine being 12 and not being able to go outside in beautiful weather? Or not being able to go anywhere or not be able to get out of bed? And that is if nothing else was going on.
Things were going better until September. One day at the end of September, some old friends had just visited when Alex started to have major trouble breathing. I worked and worked on him and could just not get comfortable or stable. I made the call and we were on a ride on a helicopter to Cleveland. Alex had a very deep and large mucus plug. How could I have not been able to get that thing out of his lungs? I had gotten so much out before. They assured me that mucus plugs can be that difficult to get out sometimes. The good news was, Alex was ok, and we got to go home 24 hours later. Within a month, Alex started to struggle again. It was at night and all four of the kids were asleep. I tried so hard to get Alex stable. I worked on him through the night. Their dad was out of town speaking on the book that he had written, Alex and I had just left a month ago, and I just could not look at them sleeping and bear the thought of waking them up just to tell them that Alex and I had to go to the hospital again. I called my dear friend Wendy’s mom whom my kids affectionately call, Grandma Terri. She came as soon as she could. She reached down to my Aaron who was sleeping on the floor. When I saw the sweet smile that came over his face when he looked up and saw that it was that was waking him up, I knew it would be ok. Terri assured me that she would take good care of them and for me to just do whatever I needed to do with Alex. I went ahead and called the doctor to set in motion the flight to Cleveland while Terri gathered my other three under her caring wings. It is so nice to have people like Terri in your life isn’t it? What a blessing. My dear mom passed on in 2001. She would be doting on these kids if she were still here and able but God has placed someone else here to love on my kids in that way. Actually, my kids are blessed to have a few dear hearts like that in their lives.
Alex and I flew off again to Cleveland. It was a good thing that we did. He had caught a nasty virus that was attacking his lungs to the point that his home ventilator would not give him the support that he needed. He had to go on the big, nasty, hospital vent. He did not like it, but he trusts Dr. Lidsky and when she got in his face (in a good way) and assured him that she would make sure he was comfortable and needed to use the bigger vent to do so, he let her. Again, what a blessing it is to have a doctor who cares so much for your child .
Alex would spend five days in the hospital.
Ok, so October past and we got into the month of December. I was beginning to count days that Alex was home and count it a victory. Alex’s new chair was going to be brought out until…yep…we had to go to the hospital again! UGH!!! It was only a few days before Christmas. Alex was sick yet again. What in the world was going on??? The helicopter flight nurse held Alex’s head up so he could see some lights. She was so sweet. Do you know how loud it is on the helicopter? The medical team at the hospital did their usual evaluating of Alex by taking cultures to see if he had any bugs while starting him on a baseline antibiotic. They always try to keep Alex in the PICU since his system is so complicated, but the house was full, and since I was right with Alex, they sent us to a regular pulmonary floor. The team was thinking that Alex would get to go home for Christmas until he started to struggle. I started to try to clear his airway (yes, I still do his care at the hospital) and all of a sudden a bunch of really nasty junk came up. Ok, we were not going to get to go home for Christmas. Alex was devastated as was I. Dr. Lidsky went out of her way to try to cheer him up. I remember that I was feeling sad as I was lying on the hospital couch bed trying to rest and then I heard a helicopter flying in. Hospitals can help bring reality into perspective. I realized that we were still going to celebrate the birth of Jesus, we were not the only ones there, and I started to pray for whoever may be on that flight and the family involved. If you have never experienced a trauma, first, be thankful, and second, it is so difficult to explain the deep hurt that you can feel for others who go through one after you. You know how it feels.
Christmas day came and the other kids came for a short visit with their dad. It was so great to see them, but so difficult to watch them leave. My Ryan still talks about how he cried because of how sad he was to leave. The separating throughout the years has been some of the toughest parts of this journey. I cannot even talk about some of the times and I can talk about a lot!
Rainbow Babies and Children took great care not only Alex, but my kids received gifts as well when they came to visit. The gifts were just a part. Dr. Lidsky and her colleagues give so much to the kiddos that they care for. My Alex is a recipient of their tender, giving, devoted hearts.
Alex and I got home two days after Christmas. I now had two more machines to use on Alex to try to prevent another hospital visit. One machine, I use daily, and the other is one that I use for more emergency like situations. It is that machine, the I.P.V. machine that most hospitals do not even have, but this mom feels they should! Just saying….I have seen what it can do!!!
So we had new machines, a medicine that I could keep on hand for emergencies, and we were set.
What a tough period 2009/2010 was. I had a child experiencing not just extreme physical issues, but at the same time, there was material being presented in the public as true, about him, involved a lot of money going to someone or some people, and involved individuals that had positions that should be ones that a child could trust, yet those individuals were instead exploiting that child. How do you wrap your head let alone your heart around that? My cries to God were plenty and loud! Why? How? Please help me to understand. There was so much that I just did not get. Since that time, I have learned much. I have personally grown. I have admitted to being dead wrong in places, absolutely right in others, and everything in between. I learned how deeply one could be betrayed, the truth about cold hearts, how God’s word is the ONLY place to find absolute truth and how man will use God’s word to get what they want. I have learned to cling to God’s word and to Him.
From December 2009 – December 2010, Alex was in the hospital six times. One time we drove him to the hospital from the hotel (for his back surgery), three times he was transported by helicopter, one by the mobile ICU, and one by regular ambulance. From October 2009 – March 2011, except for the trip to the hotel to the hospital, Alex and I were house bound other than the trips to and from the hospital. For a good part of that time, Alex was bed bound. In March of 2011, I was finally able to gather my four children and just take a simple van ride. It was not far, it was not long, but we were out, about, and together! WOOHOOO!!!
Alex would remain out of the hospital until he went unresponsive in August of 2011. It was after he had put a post up on a fan page calling the book with his name on it deceptive. There is much that I could say about that trip to the hospital and the stop and the E.R. on the way, but I right here I will keep it simple. I know that while Alex was in the hospital, his post was deleted and he was blocked from further commenting on that page. (The post is on my blog. I copied it from Alex’s Facebook page where the post still shows up) I have seen numerous individuals though addressing what they believe to be him on that page. I have even seen responses to the questions that are written to what they believe to be Alex. Why do I read that page? It is my son!
On the pastor and his son that came to visit the hospital after Alex’s back surgery… They never came again and did not come to minister to Alex or I when we were unable to leave the house. They are from the church that claim to be my family’s church. They were not involved in our lives around the time of the car accident or the immediate years after it. Alex nor I have been to their building since fall of 2009, and are not in communication with them. My husband does still go there and takes two of our children. I know that a person from there handled promotions of the book even though there was clear communication that Alex and I were opposed to it and why. I do know that Alex begged the pastor to tell his congregation that the book was wrong and to stop it. Alex placed that request while he was lying on a gurney in E.R.. The pastor did not even acknowledge Alex’s words.
Since August of 2011, Alex had one quick trip to the hospital in January of 2012. He has been well physically. He works very hard each and every day. I am his only caregiver and aide at school. Our friend Wendy has been around Alex since March of 2005. She usually comes to work with Alex twice a week. Wendy really knows Alex. She has ridden this rough journey with us.
Why did I write this post? There is much more to say, much that has to be addressed, and as I learn more and grow stronger, I will do whatever I can to stop the exploitation of my son and the twisting of God’s truth.
DID EVANGELICALS KEEP THIS BOY FROM GOING TO HEAVEN?
By Patricia Pearson
The Daily Beast
January 25, 2015
The language Alex Malarkey used to describe his trip to heaven sounded suspect, but when he took it all back, he truly sounded like a tool of Evangelicals.
When my daughter was five, we were strolling alongside a Ukrainian Orthodox church in our neighborhood when we spied an icon of Christ that was leaning on an exterior wall, about to be carted off for restoration work, perhaps. It was one of the bloodier renditions of a crucified Jesus I’ve seen, featuring gothic amounts of wounding.
“Mum!” my daughter cried in concerned alarm, “What happened to that guy?”
My husband and I chuckled for days.
Children, of course, are wide open for creative collaboration on answering all manner of questions, and we really could have gone down Dr. Seuss’s Mulberry Street with Clara, instead of suggesting, wryly, that “it’s kind of a long story.” So, it doesn’t surprise me that a once-six-year-old boy named Alex Malarkey, now 13 or so and freshly, humiliatingly in the news, would have riffed back and forth with his coaxing father about Heaven.
He may well have had some core perceptual Near Death Experience (NDE) after his calamitous childhood car accident, such as going out of body, or moving toward brilliant light. But by the time the father-son collaboration was completed, there was a book’s worth of Christian eventfulness in the tale, including virtually all the Christmas crèche characters and a devil “with no flesh on his body, only some moldy stuff.”
Alex was in perfectly ordinary imaginative company for his peer group at the time; the problem lay with the grown-ups. And it still does. When Malarkey recanted the story behind his father’s bestselling book, The Boy Who Came Back from Heaven, last week, he did so under what sounds to me like the stern duress of church doctrine:
“When I made the claims that I did,” he wrote in an open letter, “I had never read the Bible. People have profited from lies, and continue to. They should read the Bible, which is enough. The Bible is the only source of truth. Anything written by man cannot be infallible.” Cannot what? That’s a complex phrase for a young teen. I ran it by my 14-year-old son just now and he was all, ‘WTF does unfallible mean?’ Fair to assume that it’s coming from certain church Elders?
Malarkey continues: “It is only through repentance of your sins and a belief in Jesus as the Son of God, who died for your sins (even though he committed none of his own) so that you can be forgiven, may you learn of Heaven outside of what is written in the Bible.”
Okay, well here we have, in a pretty tidy summary, the reason why Evangelical Christians have tended to be suspicious of the rich, mysterious experiences that people describe in NDEs. Heaven either cannot be (according to materialists) — or it cannot be depicted by outliers beyond the ken of biblical authority according to those with biblical authority.
I don’t know where the great Christian mystics fit into this calculus. Maybe the likes of Teresa of Avila and St. John of the Cross were describing their shattering encounters with God’s divine majesty as taking place in a park, not Heaven. They had visions, merely, which kept them safely outside verboten territorial bounds. They didn’t die and go anywhere. God visited them, somewhere. In the woods, or at dinner.
Ironically, both the Christian literalists and the scientific materialists are more preoccupied with this idea of physical transit from life to death in NDEs than are the average folk who suddenly have such radically transcendent experiences. It turns out that the core features of what we call the Near Death Experience can occur in a variety of settings.
A heightened sense of reality, profound feelings of peace, and immersion in a sentient (loving, wise) light is the common experiential thread across different scenarios. Research published in 2014 at the University of Liege in Belgium (PDF) compared coma patients reporting NDEs with people who report the same experience during meditation, while fainting, after drug or alcohol consumption, or in the midst of frightening but non-life threatening situations (ducking an explosive device that doesn’t wind up detonating, for instance).
More than 75 percent of this latter group reported key NDE features, including encountering the “brilliant light.” Here, for example, is a description of entering the light given to me by retired physician Yvonne Kason, who survived, without serious injury, a small plane’s crash landing on ice: “I was like a drop of water which had now merged into the sea of light. I still existed, it was still me, but I was in this incredible ocean of light and love. The strongest aspect for me was the love. Perfect love. It’s impossible to describe.” The quality of ineffability — being unable to adequately convey the depth and intensity of the experience, its unsayable nature — is common.
What is not common is Christian iconography featuring devils with moldy skin, or any kind of doctrine of exclusivity, wherein belief in Jesus provides some sort of access key to paradise.
I don’t know if that spells relief for the Evangelicals hugging their Bibles and demanding a halt to all the impertinent “heaven tourism.” But, it would certainly come as no surprise to Buddhist meditators, Jewish mystics, indigenous shamans, and Hindu yogis, for whom cosmic consciousness is accessible right here on earth.
The University of Liege research by the Coma Science Group is actually pretty important. What they are quietly chipping away at is the dying brain theory as an explanatory frame for transcendent human experience. They are not offering an alternative explanation, they are simply pointing out that NDEs do not, in fact, have much to do with a physiology of cell death. This view is shared, increasingly, by others in the NDE research community, who see transcendent experiences as occurring along a continuum. Whether you’ve flat-lined or not is irrelevant.
Who knows what, if anything, happened to young Alex Malarkey seven years ago. His tale and its recanting need have little impact on the persisting mystery of our collective experience.
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• Pulse on NDEs
• How Near-Death Experiences Are Changing The World
• The Formula for Creating Heaven on Earth
• The Light & The Life Review (v4.4)
• The Essence of Near-Death Experiences (In 8.5 Minutes)
• Powerful, Life-Changing Near-Death Experience Quotes
• When Loved Ones & Friends Pass From This World To The Next
• NDE Stories
• NHNE’s Collection of NDE Testimonials – Archive One
• NHNE’s Collection of NDE Testimonials – Archive Two
• NDEs Featured on NHNE’s Main NDE Network
• Historical Near-Death Experiences
• Celebrity Near-Death Experiences
• NDEs & Hell
• NDEs NOT Caused by Malfunctioning Brains
• NDE Take-Aways
• The Mustard Seed Venture – NewHeaveNewEarth Community Center
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