eight years ago viral encephalitis attacked my mother’s brain.
it 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. with that said, 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.
hyperbaric oxygen therapy, or HBOT, is a specialized medical treatment that delivers 100% pure oxygen to a patient through increased atmospheric pressure within an enclosed chamber. when the pressure is greater than normal, the body is able to absorb more oxygen into blood cells and other bodily fluids. the increased oxygen absorption enhances the body’s ability to aid in its own healing.
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.
given her dismal prognosis my father latched on to this treatment and became the first person in pennsylvania history to successfully have a hyperbaric chamber covered with a state medical waiver.
it is unclear whether diana's marginal improvement is due to HBOT or the passage of time.
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 would recover in 3 to 5 years.
for 5 years this refrain has 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 5 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 verifiable through note taking.
to date, diana has five complete, daily journals, one for each year since she became sick. now known by most as simply "the book", this tool is used by her 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, she 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 cup that aims to prevent the cat from being overfed.
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 she became sick to step into her beading room again.
since making the decision to again pursue this craft she has found creative ways to manage and cope with her condition.
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.
at the time my mother became sick, in october of 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.
there was never a moment of hesitation or question as to what would happen 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, support system, caretaker and confidante ever since.
my parents are still married though the relationship is no longer romantic. however, the deep love and commitment, especially in his selfless dedication, is clear.
here, caught in a quiet moment following a family dinner, I can't help but wonder if he has any regret.
diana and her caretaker 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 is rare to observe her experiencing unadulterated happiness, allowing her inhibitions to fall away.
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 a light that shines in diana's eyes and a spark in her that comes alive again when we all are together, on the front porch, the instruments are out and, even if for just a few moments, we are "us" again.
as a result of the damage her brain sustained, diana's emotional landscape has extreme highs and lows. childlike at times and quick to anger the next minute she often seems to be encapsulated by the very moment in which she is present; the effects of her illness affect the rest of us in a way that is more nuanced and betrays our comprehensive knowledge of the situation.
my father, who has been diana's primary caregiver for much of the past eight years knows well the burden of time and its ability to wear one down.
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." as such, 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 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 story about a baby bunny being brought to our porch steps, unharmed, by the cat (this occurred nearly 3 years ago and is still told often ... as though she had never shared it before). 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 goes to the end of our yard to talk to the neighbor and spend a few moments with the little girl. someday, as she tells me and my siblings often, 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.