Nursing Book Club

Locked In

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Locked-in syndrome (LIS), caused by a brain stem infarct, is a terrifying neurological disorder that leaves the sufferer aware and able to feel, but unable to do much more than blink. The disorder is fortunately very rare, but is difficult to treat and not completely curable.

I can’t imagine a much more horrifying fate, but two recent autobiographical accounts by people who have experienced LIS and come through on the other side demonstrate that there is hope for sufferers.

Too Young for a Stroke?

Allison O’Reilly, the author of Out of the Darkness, is a Virginia woman who suffered LIS following a stroke in 2010. While we often associate stroke with older adults, O’Reilly was only 49, a childless corporate marketing executive with an apparent Type A personality.

She spent about four months in the hospital (one in which I used to work) and, remarkably, was able to walk out under her own power with the help of a walker. Thanks to intensive therapy, she was eventually able to return to many of her pre-stroke activities and is even able to drive again, although in a recent blog post, she said she is still working on regaining her balance.

She frames her story with background information and statistics about stroke. For example, I learned from this book that 700,000 Americans suffer a stroke each year and that the incidence of stroke in Americans under the age of 55 has increased significantly in recent years: It’s up 84 percent among whites, 54 percent among African-Americans.

O’Reilly presents a variety of websites and other resources for stroke sufferers. She says her goals for this book and her ongoing volunteer and outreach efforts are to help other stroke survivors and their families and offer “a non-clinical voice to the medical industry about the needs and diseases of younger people experiencing strokes.”

Permanently Disabled

Sandra Nette, the author of Blink, has had a longer and more difficult road. In September 2007, Nette, a 41-year-old woman from Edmonton, Canada, suffered a stroke and developed LIS following a chiropractic neck adjustment. She spent a year in the hospital and a rehab facility, but was left permanently tetraplegic.

Nette’s devoted husband David eventually had to leave his job in order to care for her 16 to 18 hours each day. A year later, they were deeply in debt, having had to rebuild their home to install an elevator and spend $72,000 Canadian on a custom disability van that they were later forced to sell. (I can only imagine how much more costly her treatment and rehabilitation would have been in the U.S.) She has since recovered some movement, but still requires constant care and had to go through a considerable struggle just to learn to dress herself again.

Some of this book discusses the Nettes’ belief that her stroke and LIS were caused by the chiropractic neck manipulation, which they allege is fundamentally unsafe. In 2008, the couple not only sued the chiropractor, but also named the Alberta Ministry of Health and the Alberta College and Association of Chiropractors as co-defendants in an attempted class action lawsuit. (Canadian courts rejected the class action in 2009 and the Nettes settled out of court with the chiropractor in 2012 for an undisclosed sum.)

Blink focuses more on what it’s like for someone newly and abruptly disabled upon leaving the hospital. The book is full of personal anecdotes like Nette’s loving husband accidentally running over her foot with a wheelchair, dropping her trying to carry her up a flight of stairs and then losing his temper while trying to find a cab prepared to take wheelchair patients. He has redeemed himself by helping Nette into the ladies’ room and even trying his hand at hairdressing and applying makeup (without much success).

There’s a special place in heaven for husbands like this and the Nettes’ story is a reminder of what “in sickness and in health” can really mean.

What Nurses Should Know

I think that writing these books must have been cathartic for both authors, giving them the ability to look back at how far they’ve come. Both books are also a testament to the importance of a strong support system — which for both authors centered on a committed and loving husband — in coping with serious illness.

These books are also a reminder to us as nurses to be aware of the signs of stroke (including headaches, arm pain and blurry vision), even in patients who might seem “too young.” We know that clot-busters need to be used within three hours for best results, so recognizing the symptoms and acting quickly can make all the difference. (O’Reilly received clot-busters while Nette did not, perhaps because of her young age.)

It’s also helpful for nurses to understand the nature of LIS and what it means for patients — it’s not a coma and sufferers are not in a vegetative state. (I found myself writing a care plan in my head as I read these books.)

Both authors acknowledge their dark days, but manage to be inspirational without becoming too sweetly positive. These books might sound grim, but they have much to offer readers.

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