This beautiful story found on CNN is a profound statement on the importance of our presence in the lives of those who are dependent. Rom Houben was misdiagnosed as being in a vegetative state for 23 years and was apparently conscious the whole time.
"In an interview with the UK's ITV news Monday, Rom communicated by typing on a special keyboard attached to his wheelchair, and aided by his carer.
He said: "At some moments it was terribly lonely but I knew my family was believing in me."
"I simply want to enjoy life," he added. "I notice a big difference now I'm back in contact with the world."
The key thing that any caregiver needs to understand when working with a person who is not able to communicate or is very limited in their ability to communicate is that your presence is powerful. It means more than the many tasks that you may be able to do for him or her. This man was sustained for 23 years by the loving presence of his family and caregivers. It will be a struggle; we may feel like we are not having an impact. Often our impact may go unknown to us but to those we care for it has tremendous impact.
Rom Houben's brain was discovered as being fully functional after a state of the art brain scan was performed. The technological and clinical side of the story is interesting.
"A study carried out last year on 103 patients by Laureys and his colleagues at Liege's Coma Science Group found that 41 percent of patients in a Minimally Conscious State (MCS) were misdiagnosed as being in the much more serious Vegetative State (VS).
Dr. Daniel Hanley, professor of neurology at Johns Hopkins Medicine, in Maryland, told CNN that VS is a coma-like state in which patients have a sleep and wake cycle, and can show reflex chewing, swallowing and blinking, but don't respond to language or stimulation.
Patients in MCS occasionally show they are aware of their environment, for example moving to face a doctor when asked, but only infrequently."
Naturally, one recognizes the ethical importance of this issue. Proper diagnosis can have a profound impact on end-of-life decisions. The article speaks of patients with Locked-In Syndrome and those who are paralyzed, such as Rob Houben. Misdiagnosis is more prominent in these cases because their reflexive movement is minimized.
Some folks are questioning the veracity of the report on his communication. However, I think the story speaks to the powerful importance of the family and caregivers' presence. Thank God for the love of Rom Houben's family.
See the CNN site for the full story and a video story.