Eight years ago viral encephalitis attacked my mother’s brain.
The virus erased the past decade from her mind and left her short-term memory severely compromised; she remembers moments for only minutes after they occur. Today, at age 55, her life is largely dictated by a daily journal deemed “the book”, she receives therapy in a hyperbaric chamber and lives a life where she is acutely aware of a once more complete existence.
In the United states, statistics assert that 300 people per year are diagnosed with encephalitis. Of those 300 cases 70% are fatal. My mother was incredibly fortunate to survive, but her life will never again be what she once knew. With a full-time caretaker, a house filled with post-it notes and a vague recollection of her former life, it is an existence that few can relate to or understand.
Here, my mother, Diana, peers out of a hyperbaric chamber during one of her daily, hour long treatment sessions. While HBOT is primarily used for burn victims and decompression sickness there has been an increasing number of uses studied in the past several years -- including the treatment of encephalitis.
It is unclear whether Diana's marginal improvement over the past eight years is due to HBOT or the passage of time.
3 To 5 Years
After waking from 18 days in a coma, and faced with a lengthy, uncertain path to recovery Diana clutched to only one sentence heard from the doctors-- that she might recover in three to five years.
For five years this refrain served as a buoy at the roughest of times and a constant beacon of light. With each passing year, and each new journal, it was the first and only sentence carried over and written in the front cover of the new book.
Only when we reached, and passed, the five year mark did Diana realize that what the doctor had uttered was, at best, an optimistic guess. The repercussions of this realization were crushing and continue to affect my mother's optimism and hope that she will one day regain her "self."
Here we see both this note as well a glimpse into Diana's attempt to keep her life organized through constant note taking.
My mother, Diana, remains capable of being in the moment but her memory fades as the minutes pass. Here she gazes at herself in the bedroom mirrors and asks an oft heard rhetorical question, "why did this happen to me?”
Once an avid "beader" and jewelry-maker it took Diana four and a half years after initially becoming sick to step back into her beading room. Since making the decision to again pursue this craft she has found creative ways to manage and cope with her condition.
A photo of my parents taken during Christmastime in 2009, only two months after she became ill, has sat in the same place for the past eight years. The image serves as a reminder of what was a happy evening as well as a stark demarcation in time.
Post-it notes are but one method Diana uses to cope with her lack of memory; they serve as practical reminders as well as sources of daily encouragement.
To date, Diana has seven complete, daily journals, one for each year since she became sick. Now known by her family and those that know her well as simply "the book", this tool is used to chronicle everything from the time that she wakes up and what is eaten for lunch to mini grocery lists and the random thoughts that flow through her head. It is a tether to the fleeting hours of each day. Each night, with the day lost within the caverns of her memory, Diana sits down, often with a member of the family, to read through the day. This serves to prompt fractions of memories to surface as well as to verify how the hours were spent -- this is an ongoing struggle for someone who has reached a point of recovery where there is an awareness of a once better life.
A photo of myself and my mother taken shortly after she became ill sits on a side table atop a pile of reminder notes and a measuring cup whose permanent marker label aims to prevent the cat from being overfed.
Daily life for Diana
For the past seven years Diana has had a caretaker, Jan, that spends time with her Monday through Friday of each week. Accustomed to working, my mother now tries to stay busy with other activities; among her favorite ways to pass the day is at the local YMCA taking water aerobic and yoga classes.
The yoga and water aerobics classes that my mother takes each week at the local YMCA have become consistent highlights in her life. Initially resistant to the idea of participating in yoga these classes have now become periods of time where she is, at least for the moment, at peace.
Diana and Jan participate in water aerobics together and have made friends with the group of women that come from the surrounding area for exercise and a sense of community.
My mother, once a social and outgoing person, has lost much of her confidence as a result of her impaired memory. It has become rare to observe her experiencing unadulterated happiness, allowing her inhibitions to fall away.
Daily life for Diana
Diana Staab, age 55
At the time my mother became sick, in October 2009, my parents were separated. My father lived in a different house and my mother, fiercely independent, her children young adults, was pursuing a divorce.
When she awoke from a coma, having spent 18 days unconscious, her memory wiped clean, she had forgotten her strong dislike of my father.
When it became apparent that my mother would not be able to work, drive or care for herself my father, David, moved back in and has been her tireless advocate and caretaker ever since.
Though my parents are still technically married, the weight of the situation has and continues to be an incredible strain on the relationship as well as each of their own, personal well-being.
Diana and her friend, Sally, tell stories during a small get together for Diana's 51st birthday.
Most people would agree with the notion that emotional experiences, whether good or bad, tend to be more memorable then those that are not. For my mother, and others who have impaired memories, this term is known as "emotional memory." When something affects diana -- whether exceptionally positive or negative -- the experience, and the memory of it, is more deeply embedded within the brain. It is thus a memory that is retrievable where other day to day occurrences are seemingly forever lost. In my mother's situation this has manifested itself in long-standing grudges for perceived wrong-doings (something she did not do prior to her illness) as well as in the constant re-telling of a stories that brought her great, momentary happiness. The one thing that brings Diana consistent, unmatched joy, and that has steadily been linked to retrieved memories, is the company of children and babies. It is a joke within our family that she has "baby radar" and is somehow able to seek out, and oftentimes end up holding, babies when we are with friends or at a get together. Here she spends a few moments with our neighbor and her little girl; someday, as she often reminds me and my siblings, she hopes for grandchildren.
The virus and its lasting effects have forever changed every aspect of my mother's life and in many weeks there are more bad days than good.
With the passage of time Diana has managed to find coping mechanisms and adjust to a new life routine that has given what were once simple tasks a new sense of meaning and accomplishment.
My father, age 57
Damage to Diana's brain compounded with episodes of frustration and anger often lead to emotional outbursts that inevitably involve much of the family.
Though anger and frustration are the most outward emotions expressed, each episode ultimately ends in confessions of profound sadness.
"I miss being me; I miss my old life."
Through the years and the many ups and the downs, it has always been music and what we call "porch sitting" that has helped to push everything else to the side and bring our family together.
I was fortunate to have a childhood where the atmosphere was often one of song and campfires with my father and mother as anchors -- he playing an array of instruments and she singing.
Though I no longer live at home and so much else has changed there is a light that shines in Diana's eyes and a spark in her that comes alive again when we all are together, on the porch, the instruments are out and, even if for just a few moments, we are "us" again.