My entire adult life to-date, when I approached a new life stage that I was unsure of, I would find books to advise and guide me through it. Often, I sought out multiple perspectives on the matter that allowed me to find my way. Books on marriage, pregnancy, breastfeeding, parenting, and autism still scatter throughout our bookshelves. So naturally, as I contemplate my own death in terms of my ALS diagnosis, I have been looking for books on how to die. How do I make the most of whatever time I have left while simultaneously coping with the grief and fear that accompany this process? How do I find spiritual peace in coming to terms with my end? How do I manage my time, now that it has become so definitively finite? Sometimes so many days and weeks pass in mundane every-day-life activities and I begin to feel terribly anxious that I am just wasting time that I cannot afford to waste. Yet, it is simply not possible to fill all my days with extraordinary experiences. The questions go on and on, and I felt certain there must be guide books out there- books on how to die. Unlike marriage or motherhood, death is a certainty for absolutely every single one of us. So surely, I thought, there must be many books on this subject. But I couldn’t find a single one. Not one.
There are related books– books for those we leave behind- on how to cope with a loved one dying. There are memoirs by those who are diagnosed with terminal illnesses. There are books on chronic illness, and books on making medical decisions when faced with a terminal diagnosis. But I could not find any books specifically on how to die in the non-medical sense.
At first I thought it was because no one has died and come back to write a how-to guide for us. But then I realized that made no sense. Most pregnancy books are written by doctors not mothers, most parenting books are written by psychologists or other “experts” not parents, and so on. The reason professionals tend to write these books is because they have seen hundreds of people go through whatever it is they are writing about, whereas those of us who have been through it ourselves only really have our one particular experience to draw from. So why hasn’t a doctor or therapist or social worker who has watched hundreds of patients go through their deaths written a book to help guide those of us newly on this final journey?
While it’s in the form of a memoir, I did find a book that I thought would offer me some insight, called The Bright Hour by Nina Riggs. I think it’s particularly relevant since she was also a mother of young children when she received her terminal diagnosis. I’m going to start with that and see if it is helpful for me. But I find it strange and rather culturally telling that there are not really books out there on how to die.