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.
I use a wheelchair part-time right now. Which basically means if we are going to be somewhere where I have to stay on my feet for more than 10 minutes I use the wheelchair. I sometimes feel embarrassed knowing people have seen me walk, but have also seen me in my wheelchair. I wonder if they think I’m a fraud or something. Part of the reason I use the wheelchair is because I don’t have the stamina or muscle strength to walk for very long. But another big part of the reason is falls.
For a lot of people with ALS (hereafter I’ll use the acronym PALS), falls are the first symptom of this disease. The majority of PALS are limb-onset, and of those, it is more common to start in the legs/feet. I am bulbar onset, meaning it started in my speech/swallow region. When I was first diagnosed my legs were totally fine to walk and run. As the disease has progressed it has slowly been making it’s way down to my legs. Over the past few months I’ve started having falls. The problem with falls for PALS is that we have weakness in many parts of our body and that often means that we are unable to maneuver ourselves mid-fall. It’s more of a rag-doll fall, zero control. This is so hard to describe to someone who hasn’t experienced it. Suffice to say, you have no idea how skilled you are at falling until that skill is removed.
I had a fall the other afternoon. My head smacked against something and opened a small wound that bled like crazy and scared my husband! Luckily, despite all the blood, it did not need stitches so I am recovering in the comfort of my own home. Falling is dangerous for PALS, and it’s a big reason to start using the wheelchair, or another mobility aide if one is deemed more appropriate. Not only are falls dangerous in terms of potential for acute injury, but, for reasons not entirely clear, falls seem to speed up disease progression in PALS. And that is the absolute worst thing for us.
So the next time you see someone in and out of a wheelchair keep in mind there are many people with all different disabilities who legitimately need a wheelchair but can also sometimes walk.
A few weeks ago I wrote a post that I titled Everything is Not Okay. I wrote about my deep fears and anxieties about what is happening to me, and about death. I wrote about my kids and how this affects them. I wrote about the day-to-day struggles. I wrote about choking and laryngospasm episodes where I feel like I’m suffocating to death. Those moments of thinking “I’m really going to die right here at the dinner table in front of my children,” and the trauma that leaves on my psyche afterward. I got a lot off my chest, which was good, but I couldn’t bring myself to publish the post. It sits in my draft pile and it will maybe get deleted, or maybe just sit there unpublished like a private diary entry.
So no, everything is not ok. Even though when asked I always say “we’re ok,” “we’re fine.” In general I’m objectively not okay. I have a degenerative terminal disease. So no, everything is not okay. BUT. But.. But in this moment, I am okay. Okay enough to be here writing to all of you. Okay enough to share some things, and keep others to myself. Okay enough to smile at the birds outside my window.
My experience with the unpublished post made me realize I need to share more. Not everything- I want to keep my darkest most vulnerable stuff to myself. But I think if I explained some of the things I experience on a regular basis it would both inform others and help me feel less isolated. So stay tuned. I’m going to dedicate the next several posts to these topics.