WE TRAVEL TO AND SHALL BE LOST IN ALWAYS
a thesis by William Miller
This project is different from anything I’ve done before. It’s much more personal and intimate. In fact, it goes deep into my chromosomes and the cells of my brain. Eight years ago, when I was 40 years old I found out that I had Huntington’s disease. We Travel To And Shall Be Lost In Always uses video, installation and photography to highlight my personal experiences with this fatal neurodegenerative disease as well as draw relationships between my own failing memory and the crisis of the deterioration of digital files, media and storage known as “bit rot.”
Huntington’s disease (HD) is an inherited neurodegenerative disease that causes the progressive breakdown of nerve cells in the brain. The early physical symptoms include loss of balance, reduced dexterity, involuntary jerking or writhing (called chorea), slurred speech and difficulty swallowing. Victims are often given to bouts of unpredictable and even violent behavior. HD is typically diagnosed between the ages of 35 and 45, proceeding inexorably to death in 10 to 20 years. There is no cure and no treatment to slow or halt the progression. It’s been called the cruelest disease known to man.
Due to my short-term memory loss and cognitive fogginess, I’ve become reliant on smart devices to help remind me of appointments, keep track of the days, to retain my thoughts and ideas. These mnemonic devices have become an extension of my memory but study after study shows that the machines we’ve surround ourselves with to enhance our memory are actually damaging it. Certainly, with them we have more access to facts, figures and our personal memory archive of notes, images and correspondences but without them we’re becoming more forgetful. Furthermore, much of the technology we use are flawed, vulnerable to corruption and subject to obsolescence.
While my thesis is built around a suite of videos, which I describe below, it also includes the photographic series JPG Portrait (2017, Archival Pigment Print. Starting as conventional studio portraits of myself, I use Photoshop to resize and compress the digital file thereby erasing a great deal of information from the files. Rebuilt using 3D tools, these images emulate the tendency of human memory to deteriorate but then rebuild itself, sometimes inaccurately.
In the video Unlucky (2016, Video, 3:45 minutes) an audio track features a lone voice telling a first-person story about going to the hospital and receiving a diagnosis for Huntington’s disease. As the story progresses it becomes clear that mistakes, miscues and flubs have been kept in the audio, highlighting the fact that the reading is a performance. But is it from memory, an account, or read from a script? The video’s visuals show a 3-D scan of my head. It seems to be turning intermittently by an unseen force.
In the video Sullen Entropy (2016, Video, 6:11 minutes) I appropriated text from a closed group Facebook page for victims of Huntington’s disease their families and caregivers. They share their intensely personal and occasionally harrowing stories about living with HD. I then print the posts, with their sloppy spelling, poor grammar and other marks of emotional and physical haste, I scan the prints and put the files through a photogrammetric process that causes the text to decay and distort and break apart. I piece several of the posts together to form a loose narrative in which I’m trying to convey something more than the account of their individual experiences. This piece is projected on a wall or screen, highlighting its ephemerality.
The video Hexenzsene (2017, Video, 1:19 minutes) is shown on a vertical screen. It opens on a table devoid of objects or people. Soon a violet ball floats down, in slow motion, from the top of the screen. It hits the table hard with a distorted crash and slowly bounces up to the top of the screen. The ball bounces in extreme slow motion several more times until it moves inexplicably toward the precipice of the table edge and comes crashing down out of sight but still within earshot.
The video, Self Test (2016, Video, 2:38 minutes), features me in a studio environment doing a standard neurological exam that is given by doctors to assess motor and sensory responses, especially reflexes, to determine whether the nervous system is impaired. People with HD are frequently giving themselves these kinds of tests, looking nervously for ticks or hand shaking associated with early stages of Huntington’s. For them, the consequence of finding flaws in these neurological self tests are profound and life changing.
The video Frames and Focus (2017, Video, 1:53 minutes) pens of a shot of my face in a studio environment. A child’s hands emerge from the bottom of the screen and start to push my cheeks together. A low, slowed down voice can be heard encouraging the action. The child, who is my son, slaps, squeezes and smushes my face, sometimes enthusiastically, sometimes reluctantly, while I try to keep my eyes straight ahead.
Lastly, my thesis includes a sculptural installation, Untitled (In Lieu) (2017, artificial flowers, electric turntable, foam core), using fake plastic flowers often used to memorialize gravesites. Flowers are a powerful symbol of birth and death, of celebration and mourning, of commemoration and memory. During my own trips to cemeteries, I noticed fresh graves typically have freshly cut flowers whereas older graves tended to have artificial flowers— grief and mourning over time is replaced by commemoration and memory. Collected and sorted by color, the plastic petals are placed them on a rotating surface in the graduated color wheel. The spinning color wheel looks similar to an Apple computer’s expression of thinking when it gets hung up in operations. The “spinning wheel of death” is the computer’s signal that it is struggling to remember.