Mirrors & End of Life
The Experience of Viewing Self in the Mirror for Terminally Ill Women
“Let us tell them – maybe then the staff would come to a greater understanding of how we are feeling, of what’s important to us. You really have to understand to help people.”
A Terminally Ill Woman
Experiences are everyday lived moments. The experience of pain, of lying in a hospital bed, of being misunderstood, being incontinent and having one’s diaper changed, of dying, being fed because you cannot hold a spoon, being on a ventilator, of the moments before going into surgery – these are everyday lived experiences. Understanding the meanings individuals give to their experiences is an essential component in preserving and enhancing quality of life.
In order to shed greater understandings on this concept, allow me to share one simple experience – the experience of seven terminally ill women viewing self in the mirror. In the 1960’s my great – grandmother asked for and looked into her hand held mirror from her hospital bed for several moments, just hours before slipping into a final coma.
In the 1970’s, a small fragile woman in her late nineties, whom I will name Miss Peace, lived in the nursing home I worked in as a nurse’s aide. To me – she was the ugliest woman I had ever seen in my life. She weighed about 70 pounds. Every limb of her body was contorted as was her face due to the incredible pain she suffered. Miss Peace would say “child – open my dresser drawer and take out the looking glass” (there were mirrors in the patient’s bathrooms, but most residents were bed bound ….I was fascinated to actually see a resident look into a mirror). Miss Peace would spend several minutes gazing at herself as I held her mirror in place for her.
When I started nursing school, our first task was to give each other a bed bath. When the instructor showed me the hospital table with the mirror inside I assumed nursing was brilliant in her consideration of the smallest details of a person’s life. she meant it should be used. I always offered my patients a mirror and I even kept a small mirror in my pocket for those patients too sick to sit up.
In the 1990’s I learned that in over 300 lists of equipment needed to do a bed bath or keep at a patient’s bedside, the mirror was not listed. There were no research studies useful to nursing on mirrors. Discussions with fellow nurses revealed surprising results. On a burn unit, a young nurse gasped and said “Oh my God, we have a young man in that room over there who has burns from his neck to his toes…he has been here 3 weeks and has never seen his face. All he has seen is what is left of his legs, his arms, and his body. His face is perfect”. A deathing nurse whispered to me that the 16 year old girl who had a tumor the size of a football that extended out of her mouth, obscured her nostrils, and rested on her upper chest almost obstructing her tracheotomy would “ask everyday for her Mom to bring her the mirror”. Sadly, another nurse said “that is perfectly disgusting. No one who is sick and suffering wants to look into a mirror”.
Paul Ricoeur’s hermeneutics and philosophy of the will (phenomenology) provided a conceptual framework and methodology to guide me to a greater understanding of the meaning of the experience of looking in the mirror. In phenomenology, one seeks to understand the entire horizon of a typical human experience. The underlying structure of the experience is uncovered, regardless of who has the experience or the different circumstances surrounding the experience. The concept of ‘uncovering’ or ‘understanding’ all human experience by all human beings is simply beyond comprehension. With seemingly endless determination, phenomenologists seek to understand human experience one small experience at a time.
Hermeneutics is a method or technique used where the individual stories or variations of an experience are bracketed or suspended. The goal is to seek the underlying experience. When that basic experience is uncovered, it is so fundamental that all who have had a variation of the experience have an ‘ah hah…of course that is it’ moment. My challenge was to interview, listen, tape record and analyze the words of seven terminally ill women and uncover their fundamental experience of mirror-ing.
Prerequisites
There are two prerequisites to looking in a mirror. There needs to a mirror accessible and one must be capable of looking into a mirror.
“I realized I didn’t have a pocket mirror that I always carry in my purse. I nearly went crazy that I couldn’t look when I was in the emergency room.”
“That is one thing in a place like this, there is a mirror over the sink and that’s it”.
“In the hospital they do have a mirror in the bedside tables. Why didn’t they get bedside tables like that for us?”
“When I was in the hospital I didn’t have a mirror except that little one I had brought with me, in that little compact of mine where the make-up was.”
“From home, I brought a hand mirror that is older than I am”.
One must also be capable of looking into a mirror.
“For people who are too weak to get to a mirror you would have to bring the mirror to them.”
“The nurse did not give me enough time. She gave me a look and flashed me away again.”
“They did have a mirror hung over the washstand….we just had to walk down the hall to get to it.”
“…if there is a mirror there I bet you’ll look into it, of course it being you can lift your head.”
Decision: I Decide
There is a web of motivating reasons to decide to look or not to look in a mirror. Motives do not ‘cause’ one to look into a mirror, rather one uses motives to justify one’s decision. The desire or ‘wanting to look’ in the mirror forms a spectrum or range from habitual glimpses to contemplative or willful decisions.
“I don’t think I could go by a mirror without looking in, looking at it”.
“When I washed my face and hands in the bathroom I couldn’t help but see myself …in the mirror”.
“(I had to look). I was hoping things would look better”.
“I nearly went crazy that I couldn’t look.”
“I wouldn’t mind if somewhere they had a (full length) mirror…I don’t really know what I look like from the knees down.”
“I wonder: Does my hair need a cutting this Thursday? Is my lipstick anywhere near to the color it should be? Is my catheter bag showing from underneath my pants?”
Resisting or ‘not wanting’ to view self in the mirror:
“You just can’t give up. I know that. You just make yourself look. At times you have to give in and say to your good Lord, I gotta look. Well it’s hard to do but you have to.”
“I don’t think there are any religions in that are opposed to looking in the mirror, do you? I’m thinking of your looks, you shouldn’t dwell on your appearance too much”.
Assessment: I See
‘Seeing’ as assessment is different from seeing with one’s eyes. Rather seeing as assessment is more like “ah, I see what you what you have been trying to tell me”. One retains past mirrored glimpses of self and from those recollections anticipates what one will ‘see’. Anticipation of what may be viewed may be so compelling that one wants to look into a mirror.
“I looked in the mirror to see what I really look like. I thought that not eating and with the amount of time I’d been in there that I’d be looking terrible.”
“She (the nurse) looked so grim about it. When she would go, I’d take another look. You’d think, am I looking worse or am I so repulsive?”
On the other end of the range, one is confident and trusting that there will be no surprises lying in the mirror.
“It was really nothing to fuss about. I knew what I looked like….I was quite sick.”
“If I had been outside I knew just how wild my hair might be. It is a glance and I am satisfied.
The dialectical counterpart of anticipation is evaluation. A value judgment about what is seen in the mirror is made. With habitual glances into the mirror where there are no changes noted there may be a simple neutrality – “You just look”. When evaluation is accompanied by emotion there may be distanciation or objectification of the self. Speaking of self in the second person or using prepositions such as ‘it’, ‘this’, and ‘that’ are indicative of evaluating oneself as an object.
“It (mastectomy site) was a terrible mess.”
“It (face) was horrible.”
“It (face) just seemed to be better then at times it was really bad.”
“ …is that old hag really me?”
“Who’s that fat person looking back at me?”
One may evaluate the image and appropriate the image in the mirror as one’s self. The preposition ‘I’ is indicative of appropriation.
“I was burned badly.”
“I was black all over.”
“I have a horrible looking face.”
Self – Knowledge: I Know
One’s knowledge about the image in the mirror has an explanation connected to it.
“I knew that it was going to be bruised. I bruised so easily then.”
“I had radiation. I had 25 treatments. You get burned so bad.”
“When you are sick you do look pretty haggard….my cancer is terminal.”
The lens through which one views all experience, one’s way of being-in-the-world ‘colors’ one’s knowledge of self.
Being-in-the world gratefully permeated some entire interviews. Examples include:
“I still had a face. I wasn’t squashed flat or anything.”
“I’ve got what I’ve got and that’s what you’ve got to be happy with.”
Being-in-the-world – anxiously.
“No matter which way you look at it, it’s never good. There is nothing to be good about it. Why should it be? It has been a struggle.”
“Oh God, why have you done this to me?”
Being-for-self
“I want people to love me for what I am, for what I am after I am all made up.”
Being-for-others
“I was in a place where there was so many people, but because I could see myself it sort of helped me keep my identity.”
Being –less-than-a-full-self
“There was hair and that coming out of my eyelids….I was scared and I wish they told me I had it.”
Consent: I Consent
Though this experience of mirror-in we have found the foundational cornerstones of ‘I decide’; “I see” and “I understand”. Consent is the ‘so what’ of the experience of mirror-in. Consent mediated a dialectic: on one pole lie denial and despair, and at the other pole are continued living, hope and possibilities.
Denial and Despair
“I felt like running out and screaming. That’s what I felt like doing when I first came home and saw myself.”
“I look in the mirror the first thing I think is why did I ever go for this
ultrasound? I didn’t care how much this aneurism was growing. I didn’t want to know.”
“I think, good Lord, now maybe I am dying.”
Continued living and possibilities
“Maybe I’ll get a wig.”
“I have hopes yet.”
“Sometimes you think of your own funeral when you look in the mirror. You wonder how they’ll fix you up so nice and all.”
The description of mirror-in for these seven terminally ill women provides nurses with a new horizon of possibility of caring for terminally ill female patients. The way in which nurses ‘care’ based on this understanding demands further research of potential practical measures. Survey studies of existing mirrors in health care facilities are needed. There are hundreds of mirror studies possible but that is not the main point.
More to the point, there is hope and possibility nurses will have a heightened sensitivity to the experience of mirror-ing. There exists possibility that the understanding of mirror-ing opens intuitive insights into other experiences. Understanding a person’s experience does not necessarily require a ‘fix it’ approach or direct nursing intervention. Accepting an individual’s way of experiencing conveys a message: I understand and accept what this experience means for you, and your way of being-in-the –world. We may actually being to frequently hear these words, “the nurse really understood me, and she understood what I was going through”.
The framework uncovered in the experience of mirror-ing of self decision, self assessment, self knowledge and consent may be foundational for other human experiences. As nursing researchers work to painstakingly uncover everyday lived experiences, let us shares these messages with our nursing students and experienced nurses.
Discussion and Edited Exerts from Thesis: Mirroring – The Lived Experience of Viewing Self for Terminally Ill Women by Wyona M. Freysteinson 1994