Brett and Gayle, June 30, 2014
[Prepared for media release. July 16, 2014]
Brett Walls moved all of the fingers on his right hand and lifted his right forearm about eight inches. The date was July 9, 2014 and this movement was the latest miracle in a story filled with tragedy, heartbreak, love, courage, sacrifice, anger, despair and greed.
This emotional tableau is being painted in Cincinnati and features the journey of a family that is facing challenges that no family should ever face, and is seeing a spectrum of human and divine actions and responses that roil emotions and boggle minds.
It began on February 27, when restaurateur Brett Walls, 51, collapsed in his suburban Cincinnati home, crying out to his wife Gayle that something was wrong. Indeed, it was. He had suffered two aneurisms in his brain stem and 3 strokes of the very worst kind and location, leaving him motionless. Brett was near death. He was unable to move at all, except for vertical movement of his eyes, and unable to breathe without a respirator. His mental faculties were intact, but nothing else worked. He could hear and understand everything, but he couldn’t communicate. He had feeling in all of his extremities—but his brain had lost the ability to send messages to the rest of his body, so he could not move.
Worse, neurologists had a grim diagnosis and a hopeless prognosis. Brett was left in a rare condition called Locked-In Syndrome, which in laymen’s terms means ‘what you see is what you get.’ Doctors said there was no prospect for improvement. They had stabilized his condition–saved his life–but held out no hope for anything further.
And they presented Brett and his family with the most difficult choice of their lives. Do you want to live like this? If they removed the breathing tube, he would not survive. Would anyone question Brett’s decision to end such a limited life?
But on March 9, Brett chose life. With no prospect of improvement, he wanted to live. To fight the odds. The neurosurgeon had been very clear about the dim prospects, but he also said Brett was equally clear about his wishes to proceed a day at a time
The battle was underway, not just against such devastating medical odds, but—as it turned out—so much more, including an ongoing battle against people purportedly part of the business of sustaining health and well-being—insurance companies. Specifically, United Healthcare.
As the weeks go by, news is consistently bi-polar: Brett’s unexpected progress, really nothing short of miraculous; and maddening refusal by United Healthcare to be a part of the therapy that will be necessary to keep Brett progressing. UHC’s “manual” rightly shows that victims of Locked In Syndrome do not get better. Ninety percent die within four months, and those who live, do not improve—therapy or no therapy. Almost without exception. Brett Walls’ file was stamped HOPELESS and UHC was content to pocket his years of premiums. They understood the diagnosis and remained determined to ignore the progress reports that were consistent and shocking.
Day after day, there is a steady stream of small, but remarkable reports of improvement in Brett’s condition:
- Small movement in left foot
- Neck getting stronger
- Respirator removed; Brett breathing on his own
- Eating popsicles, apple sauce
- Beginning to form words. Can say ‘mom,’ ‘hi,’ and ‘bye’ (first word, Mom, spoken on Mother’s Day)
- Slight back and forth movement in head – to communicate NO (nearly all victims of LIS can move their eyeballs; Brett has used this from day one, looking up to communicate YES).
- Moving his fingers and lifting his forearms.
Not one of these improvements was expected by the medical team!
If you walked into Brett’s room today with no background, you’d see a tall, lanky man with a blank—even sad—expression, unmoving in his bed or stabilized in a reclining wheelchair. He doesn’t look like the personification of miraculous progress. But make no mistake, he is that. But there is so much more progress needed to bring back a quality of life that his movement beyond Locked-In shows is possible.
But in the midst of this painstaking but remarkable recovery, which shows the impact of physical therapy and the need for and efficacy of significant therapy, the massive national insurance provider, United Healthcare, has decided to do what it can to keep Brett locked-in! If you’ve read the John Grisham novel Rainmaker, or seen the movie, you’ll recognize the storyline here. Except this real-life victim of insurance company greed and evil practices is not dying. There is great hope, but not without the support of continuous therapy.
Today, Brett and his family continue to need substantial help. This includes the following:
1. Pressure, including media coverage, on United Healthcare to provide the assistance it is chartered to provide.
2. Ongoing financial support for medical care and family sustenance. There is a fund set up at http://www.gofundme.com/brettwalls
3. Volunteers to help the Walls family in many ways
4. Prayers of the faithful for continued healing.