When 28 year old Jacob Haendel was rushed to an emergency room in Massachusetts four years ago, the doctors thought he was having a stroke but brain scans showed something very different. Instead, his brain scans showed that his “brain seemed to be unplugging itself from the rest of his body”. One doctor described it as “The wires weren’t sending signals from place to place.”
The doctors were unsure what was going on until Jacob revealed that he had been doing drugs, mostly opioids, until he turned to street heroin. The medical team thought he might have ingested a toxin which led to their diagnosis of a very rare condition called: Toxic Acute Progressive Leukoencephalopathy. Only a few dozen people had ever been diagnosed with this.
Six months later, Jacob deteriorated to what the doctors thought was a “vegetative state” and completely unaware of himself or his surroundings. He was sent to an extended care facility on a ventilator to breathe and a feeding tube. Eventually, he was put in hospice and by Christmas, his family told that he probably would die in a couple of days. Jacob’s father whispered to him that it was “ok to let go”.
But Jacob didn’t die and slowly his brain started to sputter back to life.
The first sign was a small twitch in his wrist. Some thought this meant nothing but his family thought otherwise.
A few weeks later, everyone was stunned when Jacob started moving his tongue and his eyes, “almost imperceptibly at first, but enough to use a letterboard to spell out a message he’d been desperately trying to send for almost a year. His message was “I can hear you.“ (Emphasis added)
As Jacob began communicating, the doctors realized that he had not been unconscious but rather awake the whole time. Jacob remembered nurses calling him “brain dead” and that visits slowed over time.
In a July 25, 2021 CBS Sunday Morning tv segment, Jacob told CBS correspondent Lee Cowan that “I couldn’t express anything to anyone. No one knew what was going on in my head, and I just wanted someone to know, like, that I was in there.”
He also said that he talked to himself a lot and felt pain. Jacob also revealed that “he would do math problems in his head just to help keep himself from the guilt that his drug use has caused all of this.”
Jacob’s mother had died of breast cancer and Jacob said he started using drugs to cope.
Jacob’s road to rehabilitation has been long and still ongoing. However, Jacob has “come back with such a profound understanding of what a second chance really means. “I am an improved Jake,” he said. “And I’m a happier Jake. I don’t want to give up.”
Although Jacob still has limitations of speech and movement, he now was a website and writes updates.
WHAT WE CAN LEARN FROM JACOB’S STORY
Over my years in mostly critical care nursing, I spoke to all my patients patients-regardless of a diagnosis of coma, “vegetative state”, etc.-as if they were totally awake and explained everything I was doing as well as the time and date, visitors who came, etc.
I also closely watched for any sign of voluntary movement or reaction. Like Jacob, even almost imperceptible movement could be a sign of awareness and I encouraged my patients to repeat the movement.
I was often teased and asked if I spoke to my refrigerator too but the teasing stopped when some of these patients started to respond or even recovered. Some of them later related what they heard and/or felt when they were assumed to be unaware. My point was that speaking empathetically to all our patients was a matter of respect that could even help them get better.
Hopefully, Jacob’s story will be an encouragement for all healthcare providers as well as people with severe brain injuries and their families.
But Jacob has another big message for every one of us in our daily lives: simplicity.
In Jacob’s own words:
“My life was never a walk in the park, but I never truly appreciated how important the simplicities of life are until I began my journey to recovery. My reasoning for this word is multi-focal just like my case. The only word that can accurately describe my case is “complex” and I am un-ironically striving for just the opposite; simple. After surviving and overcoming locked in syndrome, all I want are the simplicities in life; things like talking, connecting with friends and family, enjoying solid foods, breathing on my own, going outside instead of being locked in a hospital, being able to feed myself and even taking a walk in the park. All of these simple things I took for granted are now goals I am working towards being able to enjoy again”
Especially at a time of such discord in our society now, we all need to remember and celebrate the so-called “little things” that make us grateful for our own precious lives.