Minus the “(Part 1)”, the above is the title of yet another Arthur W. Frank book that has profoundly changed how I think about my health and my body. I first read The Wounded Storyteller: Body, Illness, and Ethics in 2010, when I was incredibly ill and still 6 months away from the first surgery; I wrote about that book here. It concerned how we as sick people operate as storytellers:

“Chronic illness in particular challenges us to ask if it it possible to be successfully ill. A good story is the measure of an ill person’s success” and “Quest stories meet suffering head on, they accept illness and seek to use it. Something is to be gained through the experience.”

In At the Will of the Body: Reflections on Illness, Frank details his own health challenges (heart attack, cancer) and examines the journey from “person” to “patient,” and what it feels like to be part of a “remission society” (you are better, but you will never be BETTER). I copied down fives pages of quotes and my interpretations, having many “Oh My God” moments consisting of discovery, clarity, confusion, and reflection. As I read more and more of these medical sociology narratives and “pathographies,” I feel so passionately driven to use what I have learned in them and in my own illness experiences to improve the theoretical foundations of nursing as a profession, to improve how healthcare is delivered on an emotional level. And I haven’t even started nursing school! But I am already thinking about advanced nursing degrees that would take me into the research realm…. I’d like to jot down some of the book quotes here and my thoughts about them, if anything for the research and writing of my own I hope to one day produce.

“Illness is something to recover from if you can, but recovery is worth only as much as what you learn about the life you are regaining.”

Especially when the disease is chronic, and even if it goes into remission, the emotional goal should be “renewal” more than “recovery.” I will never be “better,” not in the sense of having good health so that can no longer be the goal. But that’s okay! It wasn’t always but it is now. I want to investigate how I got to that place because even though it was my journey, I can’t for the life of me write down the steps in any concrete way or give advice to others on also getting there. But I’d like to try to find and identify those steps if possible…

“For all you lose, you have the opportunity to gain: closer relationships, more poignant appreciations, clarified values. You are entitled to mourn what you can no longer be, but do not let this mourning obscure your sense of what you can become. You are embarking on a dangerous opportunity. Do not curse your fate; count your possibilities.”

This reminded me of one of my worst hospitalizations, pre-surgeries when I was doubled-over from pain, diarrhea and vomiting at home, unable to walk from a plummeting blood pressure, and ending up in the ER and then ICU. I was so emotionally broken that the only words I wrote the entire time in the hospital were: “Can a spirit be chipped away at? If so, mine is. Goal is one day to be able to pick up pieces and either put them back together or make something new with them.” It was a bit naive to ever think I could put the pieces of my body OR mind “back together” but I do believe that I have since made something new with them, that I no longer mourn what I can’t be but rather I try to count those possibilities. It took a LONG time to arrive at that, but I’m curious as to if I could have arrived there sooner. Again, are there steps that one can take to arrive there? Is it different for everyone? How can those working in healthcare help with this process? How can I, either as a nurse or writer or teacher?

“When the body breaks down, so does the life. Even when medicine can fix the body, that doesn’t always put the life back together again.”

I think the above sentences work with “life” but replace it in both places with “mind.” Usually one is discharged from the hospital because the body is fixed enough, but the mind, the spirit, or whatever you want to call it? It’s often far from any state resembling “fixed.” Who in the hospital is there to help you with that, without the risk of adding yet another diagnosis of anxiety or depression to your medical record? I was always fearful of that, losing even more rights because maybe I’d be deemed crazy or suicidal. I also knew I’d be given anti-depressant or -anxiety meds and I didn’t want that quick “fix” either.

Frank is exceptionally skilled at analyzing the literal and implied meanings of basic words, especially words that may be used interchangeably but, semantically, are not the same. Frank talks of “disease” as referring to “the body” whereas “illness” refers to “my body.” “Disease” is a more objective term, something that you are not quite part of whereas “illness talk tells of the fear and frustration of being inside a body that is breaking down.” Sometimes I talk about my “disease” and sometimes my “illness,” but I never paid attention to why I chose one word over the other–was it randomly or subconsciously driven? Now that I’m aware of the difference, I can’t really objectively analyze the usage in my own conversation or inner thoughts, but it’s worth thinking about and worth researching in the future.

“One person’s anger or grief may differ so much from another’s that calling them by a common name only obscures what is actually going on for each. The word–anger, grief, or whatever–conceals more than it reveals. The popularity of such a theory is not surprising. Persons using such words think they can understand without having to become involved….”

Frank takes issue with how the familiar grief stages of Kubler-Ross accomplish the same obscuring. When someone is angry about an illness or diagnosis, anger becomes “just a stage” and there is no attempt to go any further in terms of understanding what that anger is about. While it can be helpful to know that what you are going through is “normal,” it is not at all helpful to then have your feelings dismissed because they have been properly assigned to a stage and that’s that.

“It is no small thing to have your body rearranged, first by disease and then by surgical and chemical interventions intended to cure that disease. Critical illness takes its travelers to the margins of human experience. One step further and someone so ill would not return. I want that journey to be recognized.”

This touches on what I want to see change in the hospital and doctor office settings. Frank says that while he does not expect “emotion or intimacy” from doctors and nurses, he does expect this “recognition,” but he’s unsure what form it should take. I feel the same way. I don’t know who it is in the hospital setting that should recognize the magnitude of what patients are dealing with. It’s definitely not the surgeons, who must maintain emotional distance when you think about what they do on a daily basis. Sometimes it can be a nurse who truly talks to you like a human being, but nearly everyone in the hospital setting is so pressed for time, so much is required of them already. I think there needs to be an adult version of the Child Life Specialist, someone who is there to help you navigate, prepare, cope, and express. (Does a psychologist/psychiatrist do that?! I wouldn’t know…).

One of the most eye-opening and thought-provoking topics of the book (and therefore one of the most painfully mind-blowing) is mourning or grieving.

“Mourning slows down the treatment of the ill and reminds others of their own mortality. Society pressures us to return to the healthy mainstream, minimizing and forgetting our losses. I want to emphasize mourning as affirmation. To adjust too rapidly is to treat the loss as simply an incident from which one can bounce back. Only through that mourning can we find a life on the other side of loss. The losses you go through are real, and no one should take these away from you. They are a part of your experience, and you are entitled to them. Illness can teach that every part of life is worth experiencing, even the losses. To grieve well is to value what you have lost.”

When someone dies, it is understood that there is a grieving process, a time of mourning, but when you are experiencing loss within your own body, there are also feelings of grief and sadness that accompany that loss. And yet, there is a sense that you are not supposed to grieve or mourn or get through these losses in that slow, gradual way as with death. Frank sees those parallels and wishes the medical community did too. So do I. I’ve written about this before: I hated when people would tell me “don’t cry” when I was in the hospital. Don’t cry?? I had to cry, whether out of physical or emotional pain or both. Not wanting to hear those words from visitors or medical staff, I would attempt (often successfully) to “wait” to cry. When I knew I was done with tests and vitals and visitors for the night, and I could walk (which was not always the case!), I unplugged myself from the wall, walked into the bathroom, closed the door, and cried. I needed to have that, I felt entitled to being sad, and I definitely did not need to feel like I was somehow wrong in needing that.

And yet, at the same time, I so badly wanted to be (and often succeeded at being?) the positive, upbeat patient. The patient who didn’t usually cry in the face of bad news and bad procedures. When I read the following, I had my biggest “Oh My God” moment:

“Society praises ill persons with words such as courageous, optimistic, and cheerful. Family and friends speak approvingly of the patient who jokes or just smiles, making them, the visitors, feel good. Everyone around the ill person becomes committed to the idea that recovery is the only outcome worth thinking about. But how much work does the ill person have to do to make others feel good…the work the ill person does to keep up an appearance. The appearance most praised is ‘I’d hardly have known she was sick.’ When the ill person can no longer conceal the effects of illness, she is expected to convince others that being ill isn’t that bad. Much of the time it takes hard work to hold this appearance in place. I have never heard an ill person praised for how well she expressed fear or grief or was openly sad. On the contrary, ill persons feel a need to apologize if they show any emotions other than laughter. Sustained ‘negative’ emotions are out of place. If a patient shows too much sadness, he must be depressed, and ‘depression’ is a treatable medical disease.”

I felt chilled to the bone reading these words because my immediate thought was: I am guilty of that. I did it wrong, I did it all wrong. I was that cheerful patient, who kept up that appearance, who decorated my room like it was a child’s birthday party, who did crafts in bed. But then at the end of the day, like I said before, I had to shut myself up in the bathroom and cry. I was somewhat aware that I was sort of putting on a show, but it seemed preferable to the alternative. I didn’t want to cry all day. I had spent many days of my life with colitis doing just that. It felt like “enough” to have those ten minutes of private tears a day, and I also thought I was “getting through” it all by displaying the parts of my life that I love, the creative work I do, attempting to have that same energy. I needed to remember that I was still that person too.

A few months ago, I was driving to a park near my hospital, and even though I was doing well and not thinking about my health or disease, when the hospital came into sight, I totally lost it. Out of nowhere! Like goosebumps all over and bawling. I had driven past my hospital so many times, had even been there recently for more health problems, and though it usually conjured up memories or feelings, I never “lost it” like that. It was then too that I feared that “I did it wrong.” The process of grieving or mourning, I mean, or lack thereof. Had I even begun to “grieve”? Some occasional crying out of nowhere seems innocuous enough, but it’s the subconscious aspect of it–where did that come from? What else is down there below the surface? My biggest fear after having been through all of this is not additional health problems (got those now too!) or dying from any of it, but rather, it’s becoming totally paralyzed from past, undealt-with feelings. Or in other words, severe depression that would force me into bed never to emerge. That is why the spontaneous crying spells terrify me and why I want to try to “deal with” the effects of what I’ve been through now, in some kind of rational, manageable way. (Is that possible?)

“The other side of sustaining a ‘positive’ image is denying that illness can end in death. Medical staff argue that patients who need to deny dying should be allowed to do so. For them a patient who denies is one who is cheerful, makes few demands, and asks fewer questions. Denial may not be what they (the patients) need, but it is what they perceive those around them wanting or needing.”

Frank seems to think that this denial is mostly “for others,” to keep up those appearances for the sake of others, that we are trying to be cheerful because this is what everyone around the patient wants. This is where I might disagree. I think I “denied” first and foremost for myself, and secondarily for others. I don’t think I could have mentally gotten through half of it if I hadn’t made my room a party. I knew where I was. I knew that every time I crossed that threshold into the hospital that I was about to experience more hell on earth. There is no amount of decoration or crafts or balloons or flowers that could have made any of it physically easier or less painful. There IS no denial of the physical experiences because you are too IN them. And me wanting to keep up this appearance, this image of Alicia that everyone knows, that was just me clinging to those parts of my life as much as possible. And yet, I did it so that everyone could walk away thinking that I was positive and unaffected and “dealing well” with it all. So that I wasn’t causing further stress on everyone. (Catholic guilt?) Is it possible to separate what you are doing for yourself, and what you are doing so that others have a particular perception of you that you desire them to have? Are these one in the same? I still can’t imagine doing it any differently…

Frank does ask worthwhile questions that I cannot answer and that I’m afraid to think about:

“What are you compromising of your own expression of illness in order to present those around you with the cheerful appearance they want? What do you fear will happen if you act otherwise?”

I don’t know, I don’t know…