After flying more than 14 hours to come back to San Francisco a trip to Europe with an additional 6 hours of delay in the Frankfurt airport, I knew that the jet lag once I arrived home would catch up to haunt me with a vengeance. It was only a matter of time.
I managed to sleep 4 hours on the plane, and then a terrible 6 hour stint the night I landed. The next morning, when my alarm went off, I felt bright and refreshed… but I still knew that the wave of jet lag would hit me like a crowbar – sudden, unsuspected, forceful – later that afternoon.
What do you do in your workday when you only have a matter of hours to be highly productive? All of the most difficult things should be done in the morning, when you still have energy. And so that is what I did: the difficult conversations, projects and problems were for the morning.
The wave of jet lag finally did come. Around 4 pm, I started to feel my mind shift. It was as if a part of my being were slipping away. I felt light – still completely aware that this is just the effects of jet lag – and was able to embrace the feeling since I knew that a long night’s sleep would be the cure.
Imagine being aware that you were at the beginning of a journey that would take away your cognitive abilities – similar to being struck with jet lag – but worse. In the beginning, it would only be the ability to write or speak. Perhaps you are trying to think of that name — what was that name, of your high school best friend? Why can’t you remember details of your life, like where you got married, or the name of the neighbor’s husband, or… And then it gets worse: you can’t read or write. You fall frequently because you can’t coordinate complex movements. You can’t recognize family or friends. You eventually forget how to walk, swallow and breathe.
This is the typical progression of someone with Alzheimer’s Disease.
This disease affects an estimated 5.2 million Americans (5 millions being adults over 65) in the United States in 2013, is 6th leading cause of death. Yet it’s a disease that we can relate to, and one that affects many of our parents or grandparents.
Dr. David Hilfiker, a retired physician, is 68 years old and has been diagnosed with Alzheimer’s Disease. Instead of sitting back and letting the disease take over, Hilfiker blogs about the progression of the disease from the point of view of a patient, with a perspective he didn’t have the majority of his career as a doctor. He’s assisted by a computer and friend who serves as the editor of the blog.
The exciting thing is that Hilfiker is not alone, and that other patients are putting out their stories into the world.
What could blogging do for the support of other stigmatized diseases and lesser known maladies? To start, increased awareness, support and empathy for the individuals suffering these diseases. Being able to go into the mind of someone who is afflicted by a debilitating illness that is not visible from the outside seems like a true gift. I hope that blogging becomes more regularly prescribed in Alzheimer’s Disease treatment, as well as within other areas of healthcare.
A few other resources where self expression, art or literature is used as part of the healing process:
- I Remember Better When I Paint is a documentary narrated by Olivia de Havilland, and “the first international documentary about the positive impact of art and other creative therapies on people with Alzheimer’s and how these approaches can change the way we look at the disease.” Follow them at @IRememberBetterWhen
- Cal Humanities brings the humanities into VA hospitals by training “staff and scholar-facilitators, and provid[ing] literature and ongoing technical assistance” with their Literature & Medicine program.