For those unfamiliar, “Spoonie” is a tangible metaphor for those ailments which may not be ‘visible’ but which absolutely impact/define life. The idea was first introduced by a woman who has Lupus, and she used a quantity of spoons to represent energy throughout the day.
To a friend who did not have Lupus, getting up, picking out an outfit, taking a shower, getting dressed, doing hair and make up, eating breakfast and heading to work might just be one spoons worth of energy titled “starting the day.”
For a person with Lupus or motor-coordination differences, depression/anxiety/apathy, or any number of other challenges, just getting out of bed might ‘cost’ an entire spoon. With 11 left to get through the entire rest of the day.
Last night I realized that the story is pretty easy to imagine, but incomplete. Not all of my spoons are equivalent. Some situations I have superpower spoons that get me through: I cope with medical procedures and manage my emotions and energy very well. I do not cope with uncertainty or self-doubt well, and those spoons can disappear into a a very sad fog.
Last night, I was disappointed in myself for being tired, and remembered times when the kids were little that I could pull from a well of will power to get through. Then it struck me: when the kids were little, I was *younger*, and a lot had not happened yet that contributes to my collection of available spoon cache now.
I forgave myself for being tired. I forgave myself for wishing I had a different set of spoons/circumstances. It’s okay that sometimes I am in a sad fog about that: It is sad, and it is foggy.
I was reminded, too, that I have skills in readjustment. So, right here, right now: I surrender to the illusion of control. My spoons are mine. My body, my life, my feelings are mine.
There had been a steady decline. The first time we met, he was sitting in a chair with a walker nearby. Then the chair was a wheelchair. Next, sitting up in bed. Now, he lies back even with his eyes closed.
He said, “I wonder where the deer have gone.”
“Deer?”
“Yes.” He explained, “I used to see deer from my window here.”
As of this moment, I do not know if that was our last conversation. Maybe we will talk more this week about one thing or another. I have quiet in the not-knowing, and that is enough.
The notion of agreement implies plurality: there is an inherent “more than just me” to the word because, on my own, my perspective of the world is my default setting for what is real. I don’t have to agree with myself, it is my baseline of relating to the world. However, in any interaction with someone else, there are points where we have very similar perspectives and also those where we diverge. This is not the same as having a different opinion (I think vanilla ice cream = awesome, and for you maybe raspberry sorbet = awesome), but as a more fundamental sense of what is occurring. In spending significant time with persons who are in hospice care, I have reflected a lot on what it means to be in a shared space across more than one experience of reality.
All of the people I meet in the course of volunteering have one or both of the following characteristics:
altered sensory perception such as pronounced hearing loss, vision impairment, motor changes that impact how easily/often they move, changed proprioceptive awareness (processing their body in space), and/or
diagnoses of dementia (often exacerbated by the challenges with sensory perception and routines of life in a facility).
These cannot be separated from one another. Each informs the other.
An incomplete list of factors which can influence each of our experience of reality.
Example: Once while visiting a Friend, I noticed she had received mail. I opened the envelope and handed it to her. She responded, “I need my focusers.” I found her reading glasses and she accurately read the letter out loud, commenting with comprehension on things her friend had written but stopped mid-sentence when it reached the edge of the card. I turned it over for her and she continued reading. My reality and hers included knowledge of reading glasses, literacy, and social conventions in written correspondence. We both spoke in complete, grammatically intact sentences. Her reality included a creative word use and did not recall that the back of the card finished the sentence. Neither of those are a problem for me because my reality has opportunities to be flexible as a benefit of being a volunteer.
Animation my son made for me which transforms an image of a pair of glasses into separate, abstract spheres.
The “Story of the Focusers” has represented a type of the interactions I regularly have. There are multiple points of agreement in a shared reality; what differences there are need not stress my version.
I have another Friend who has an insatiable drive to move, primarily to stand and walk, which is in dire contradiction to how unstable she is on her feet. I thought I had figured out a resolution by walking alongside her wheelchair, pushing it with my right hand while holding under her left hand with my left hand. She spoke in phrases that I would sometimes repeat (“your mother’s garden?”), but it didn’t seem to matter so much that there was a back-and-forth between us. When I sang, “Take me out to the ball game” she interrupted in the middle to say, “I like that.” It was a nice visit.
The next week, she’d had an extremely serious fall resulting in significant swelling and bruising on her face and hands. She was talking very quietly primarily to herself (in a way consistent with other visits), but occasionally turning her head as though she were directing what she said to someone not present to me. Even with one eye completely swollen shut, she kept reaching beyond the balance of her chair and leaning to shift around me sitting in front of her. I was amazed at her persistence and creativity. It was clear that she knew I was there insofar as I was an obstacle to her primary goal of getting up and that she was determined to solve that problem. In almost every other observable way, we held completely separate spheres of experience.
Last week, she was considerably healed from her injuries. There was a gardening magazine in front of her at the table and sometimes she turned the pages (left to right), and even directly responded to things I said. I posed, “Did your mother’s garden have flowers?” She looked at me and said, “No.” So I asked if it was vegetables, like carrots and tomatoes, and she nodded and repeated, “carrots and tomatoes”. Does that mean that there were more points of agreement in a reality we shared together? Perhaps. It honestly does not matter. I look forward to visiting with her next week, and we’ll take it from there.
When our twins were born, my mom came to stay with us to help. That’s when my spouse and I knew with certainty that something unusual was happening with her thinking — her memory, sense of the world, and problem solving were all unmistakably strange.
We couldn’t seem to get her to stop drinking my husband’s coffee, even though he prepared his entirely differently (black, no cream or sugar) and he bought them both different colored mugs with labels written on them (“Grandma” and “Daddy”). She made 3 packets of Kool-aid all at once, using a large bowl for one because we didn’t own that many pitchers. Her explanation was, “I didn’t know what flavor you wanted.” There were other, non-beverage examples, but the point is essentially: I didn’t understand her thinking, and I didn’t know how to relate to it meaningfully.
As years went by, talking with her consistently featured many repetitions of stories, some of which were definitely not true. As the twins got older, I worried they would be confused by these patterns and that the other adults were not reacting. I reached out to a friend who worked at an elder facility. He encouraged me to use the word “dementia” and to be matter-of-fact with the kids: she did not remember she was asking the same questions again or repeating stories, and there was no point to calling that out because she would not remember that either.
At the time my mom passed away, she still knew my Dad, loved talking with him about their favorite stories (which he also never tired of), and they were a good team together. He gradually managed almost all of the tasks of living, including helping her shower and dress. These days I spend time with folks who have dementia to a much more significant degree than she ever did, and I am in a different space of understanding than I was then.
The view from my front yard (L) of fractal trees covered with ice on a cloudy day. The view from my back yard (R) of icy trees illuminated by sunshine. Both have an evocative complexity and many more layers than can be reconciled.
About two weeks ago, I went to visit one of the folks I volunteer with and she was in a truly lovely, sweet mood. She was holding a baby doll, a little larger than a newborn, cuddled to her shoulder. She tucked her head to it and cooed, patted its back. She was so happy to be taking care of this baby, giving snuggles and comfort. I sat next to her and we talked in a sense. There were lucid/attached to shared reality moments within our exchanges but mostly I sat near her and enjoyed her company.
Talking with my non-binary teen about it later, they immediately cued into the energy of the moment as being the only important part. They helped me find the image of a grown-up figure holding a child-sized figure (at the top of this page) and we talked about how strange it is that much of clipart for elderly women feature someone grey-haired with a bun. There are photographs of seniors holding baby dolls online — I have since learned this is a known therapeutic activity — but my teen and I were concerned that those photographed may not have been able to truly give consent.
On Friday, I had a first meeting with someone new. She was chatty with a nervous energy in her hands, twisting her clothes. I handed her a set of fidgets and that gave us something shared to do, to look at, to turn over, to sort (with no rule, no right/wrong). She speaks in tumbled words and phrases and I respond according to tone: ‘Oh, I see’ works with both enthusiasm and empathy.
Brightly colored fidgets ‘sorted’ into a box and its lid.
At the end of my visit I said, “I am so glad I got to spend time with you.” She looked up and said, “thank you.” Telling this to my teen son later, I said there was no way for me to know if that was just a random alignment of what she said with the moment or if the social cues are so practiced as to remain intact/attached. He said, “yeah, that makes sense but it doesn’t matter. It was real.”
I wanted to share these stories from my mom to these other people’s moms in part to revisit the experience of not understanding what was happening, and how to relate to it. I am glad now to spend time talking about these relationships, finding the energy of the moment and being real together.
For want of a functioning kidney, my immune system is suppressed. In the absence of an intact immune system, I am prone to infections. Having more than one infection in a short amount of time (or the same infection persists beyond an initial treatment), and more than one antibiotic is used, my gut biome developed Clostridium difficile Toxin B gene, and Stl c-diff Toxin A&B — commonly known as “c-diff.”
I’ve heard this diagnosis applied in my general vicinity before (in 2009 and 2018), so it didn’t ricochet off my mind as unimaginable. That phenomenon does happen sometimes — having no prior knowledge of something makes it harder to reconcile — just not this time. What was new was every single medical person I spoke to asked if I’d had it before.
I’m pretty sure that’s code for: “If this happens once, it is more likely to happen again.“
And: “If you have been through this symptom profile, you know what is happening.“
Recognizing and deciphering unusual language and codes is part of the experience of illness, not unique to chronic or life-impacting ones. Who remembers the first time they fully connected all of the terms and slang of throwing up with the act and result of vomiting? That labeling probably is not recognized — but it all becomes part of the experience known and understood in the mind-body.
What would I do differently? None of it. The functioning kidney, suppressed immune system, treating adverse conditions as they come (even with risks) = steps on the path adjacent to being with my loved ones. I added this experience to the medical history I keep in my purse. I made other revisions, too.
A table of my relationship to pain/worry on a 0 to 10 scale which defines increments of intensity (where 0 = None, and 10 = Untenable), fear (ranges from “I am not afraid” to “This is horrifying”), quality of life (as “No impact or rare” [on QOL] to “Defines” [QOL]), and My Lived Experiences with examples of personal discomfort and/or duress.
These already take into account my familiarity (I’m not as afraid or limited by physical and emotional pains I have experience with), plus I have a strong history of navigating medical systems ranging from the various jargons/codes to expectations typical in a variety of situations. These have given me some sense of how to gauge changes in my suffering over time — what may alleviate or aggravate, cycles, paying attention to trends over 24 hours, etc.
It’s not yet clear how prominently c-diff will feature in my life…it could resolve without further incident, it could happen again, it could be that I never return to the normal I knew before this diagnosis (or so I’ve been told). So I added this to my purse reference:
Line drawing approximation of how I relate to medical events impact on my overall health and likely trend to death. Adapted from Being Mortal (2014) by Dr. Atul Gawande.
This is the path I’m on (I think). I try to keep it as close as I can to the people I love, and I know that I am on my own journey which will have an end. I’m taking high potency probiotics to rebuild my digestive biome, I’m drinking viscous orange psyllium fiber supplement, I’ve changed my diet to be gentler on my system (no dairy, no fats, no raw fruits/veggies), and I’m awaiting a CT scan to check on my colon (although my liver also seems to be stressed). I’ll do all The Things that keep my path as close as I can to the people I love for as long as the time I have. It’s my answer to the question posed by Arthur Frank in Wounded Storyteller: “If I become ill again, or when I do, how will I find ways to avoid feeling that my life is diminished by illness and eventually dying?” That’s all part of our family history together, so it’s familiar and those steps are clear. In knowing that, I am less afraid of the parts that are uncertain. In any case, I am deeply grateful to be here now.
Also, “we take each day as it comes,” has become something of a mantra in our house during these times of SARS-Co-V2. Hopefully, we’re all learning together.
How I hope reflecting on the processes of my own life helps me to engage with others.
When I came into the facility, I saw an elderly man exposed from the behind using the raised feet of recliner chairs (that had occupants) to make his way across the room. There weren’t staff around which was unusual at this place and time of day. I went up to him and put my left arm across his shoulder and my right arm under his. I said, “Where are you headed?” He said, “bathroom.” About then a person in scrubs came up as well and snagged a community wheelchair. When my companion sat down into the seat, he got a look on his face that I suspected was the realization that his pajamas had fallen — his bare skin against the vinyl seat — but there wasn’t time to register that indignity because another one was coming if we didn’t get to the bathroom quickly enough. We did though.
As soon as he was set and the door closed, I looked up to see a woman advancing with her walker and waving in the manner attempting to get attention. I don’t know where that person in scrubs had gone. I approached and she said, “A woman has come into my room, laid on my bed and now she’s asleep. Can you help?” I said, “I can try.” She replied, “I can’t hear very well.” As I entered her room she called after me, “Please be gentle with her. I know she is tender-hearted.“
It was a nice space, sweetly decorated and inviting in style. The ‘intruder’ was sitting up just as I walked over and pulled a small blanket across a chair in the corner.
She said, “I put this here for you. Do you like it?” I said, “I do. Let’s sit together.”
She said, “here?” I responded, “Let’s find a couch. Do you like baseball?”
She said, “yes.” I sang, “Take me out to the ballgame. Take me out to the crowd…” I put my left arm around her back and my right hand under hers. She smiled and sang with me. At the nearest couch, we sat down. I sang whatever songs I could think of for a little while.
The thing is: I know all of these people some.
The man had been one of my friends in volunteering with Hospice, given a ‘live discharge’ because he was doing so well. He and his family had felt like there was a little too much hovering. That level of support may have been why he had improved though.
I had met the woman with her walker on a previous visit, new to the facility and a little shy about hanging out in the community rooms so she did not know many of her neighbors names. She truly cannot hear well so introductions may not have gone very far.
The second woman I have had interactions with previously; she had been unsettled by the strangeness of a lotus painting, but enjoyed meadow daisies. Watching her on this day, it felt like there had been a decline since I’d spoken with her last. Going into others’ rooms certainly could not be allowed (for a variety of reasons), and I felt a steeper fall in her experience of life may be forthcoming.
The first woman brought an afghan blanket and I put on my voice amplifier so that she could hear me more easily. She said I was so kind. I did not feel kind.
I felt that this is how it is sometimes. Sometimes we make it to the bathroom humanity intact and with help, other times we don’t. Sometimes we find one another in ways small and profound. Sometimes there are smiles and songs, sometimes sad.
Posted on November 3rd, 2021 by someone I do not know but whose story held significance.
This morning, my teens were making themselves breakfast before school and I overheard them discussing an unusual-to-them fruit.
“I thought they were grapes, but they look more like HUGE blueberries.”
“Hmm…interesting taste. But I don’t know what they are.”
On inspection of their plates after they’d left for the day, I recognized the mystery. They are Concord grapes.
When I was young, my parents made an attempt at an apple orchard on a property we always referred to as The Farm. It had previously been owned by my dad’s parents so he had memories housed there going back to when he’d been young. Weekends and summers of my childhood and early teens we would go and tend to the trees.
We would pull up on Friday evenings and my Dad would start the propane heater. I have a memory of a bird’s nest being settled under the cap, that he knew how to slowly open it and work around the nest to not disturb the eggs. I can almost hear him chuckling at how the chatter of the birds sounded trying to persuade him to move along.
I now know this is a common enough nest spot for an internet search engine to have multiple photos, and this one pretty well matches what I have remembered.
There were vines of Concord grapes near the shed along a fence which also sheltered nearby asparagus. I don’t recall any other fruits or vegetables there — it wasn’t like a garden — although those seem like odd neighbors to me now. My mom and I would pick the grapes.
These are larger than the ones I recall.
In my mind, I can see her wearing a sun hat. Her hair is long down her back, and she looks through the leaves for the dark globes. The ones we didn’t eat (spitting out the seeds), we passed forward to her mother, who made jelly.
My folks eventually sold The Farm before I had met my now-spouse, so he’d never been. Although I have talked about this place and time with them, I think my teens have a difficult time imagining it. It is all so far removed from Life as they know it.
Today, these grapes are a gift of memory and storytelling — an opportunity to be with my parents and even my grandparents a bit. For my kids, it will add a dimension of flavor to their understanding of these people and the times we shared.
One part discovery for them, one part time travel with me.
Over time my experiences have been shifting from young children in schools to elderly in hospice care. It remains as true as it ever was that I am very much learning how to listen, what to say and why. A conversation happened recently though that I thought I would write out in the hopes that it may nurture creative solutions with others.
I was visiting a woman whose diagnosis I do not know (it doesn’t really matter). When I arrived, she was asleep and since she is very hard of hearing, I anticipated that she would rest soundly. Instead of trying to talk with her, I sat down to write her a note. This was the first time she was wearing her hearing aids when I came by and maybe because of that or maybe it was just coincidence, but she woke up.
Her facial expression was confused and worried. She said, ‘I don’t have any money.” Before I could respond, she said more in a rush — much of it a jumble of sounds rather than distinct words. In the mix, I understood, “so sad,” and “but my leg is tangled.”
This is what I said in response:
My goal is to say my name every time because it is not relevant whether or not it is remembered.
I held up my i.d. badge (which also has my photo), and pointed to my name while I said it. Then I showed her a card on which I had written, “I am so glad to visit with you.” That’s something I have expressed (spoken and with this card) every time I have come.
Next I wrote, “Your leg is tangled?” I pointed at each word and read it to her twice. I showed her a card that said, “Do you have pain?” She nodded and gestured to her right leg under a blanket. The blanket was not twisted though, and nothing about her leg or foot appeared out of the ordinary (no discoloration, no swelling).
So I wrote, “Would you like your bed more up or more down?” She said yes, talked me through how to use the gizmo, and reported that it was better. I sat back down.
She said, “I’m sorry.“
I wrote and spoke, “I would like to ease your mind.“
She said, “Oh, thank you.”
Everything about her relaxed — her face, her posture, how she held her blanket. She lay back, and was asleep again before I wrote anything else. I sat with her awhile longer in case she roused again, but her breathing was regular and calm.
In turning it over in my mind, I feel like the conversation unfolded with statements and questions that were responsive to her even without understanding. That made them helpful to me also.
Still learning, how to listen, what to say, and why.
It’s a trick question on multiple levels: The list sentence format suggests that these are three distinct entities, and then parallel structure puts them all at odds from “something real”. What if they aren’t mutually exclusive?
What if they are all, each and overlapping, real?
I needed an entry framework for thinking about this, so I pulled together how the Mayo Clinic described the experience of Panic Attack, Complicated Grief, and Anxiety Disorders (General). Even at a glance, it was clear that Panic Attack and Anxiety Disorders have comparable lists. Complicated Grief has longer descriptions, and more of them. Next, I used color coding to cross reference — I used a red heading with Panic Attack, and any signs or symptoms that also appears with Complicated Grief (headed in blue) I made the text purple. Similarly, anything orange overlaps with Anxiety (headed in yellow). Those related signs or symptoms shared between Complicated Grief (blue) and Anxiety (yellow), I had the text written as green.
A contrast across “Panic Attack, Complicated Grief, Anxiety Disorders (General)” developed by signs & symptoms listed from the Mayo Clinic website on 12 February 2021.
As a next step, I wanted to differentiate out subjective interpretations of experience, and bring awareness to “objective” elements (which are underlined). For my purpose I identified those as “observable and/or measurable by established and often standardized means.” For example, it surprised me some that the heart rate was not qualified. My own experiences with panic attacks and anxiety has found that sometimes I sense my heart is beating too fast or irregularly, but when checked on my cuff or during times I wore a harness monitor, there was nothing outside of the ordinary for a woman my age.
My distinctions are definitely arguable. “Numbness” has more than one meaning, one of which is an altered sensation of physical touch which can be measured with reliable, validated means ranging from minimally invasive sensitivity/awareness with a tongue depressor or Q-tip to more involved needle + electroshock measurements. I’m not certain that this is the meaning intended by how it is listed above. I think the more likely meaning refers to absence or dulling of emotional feeling, and that is a significantly more personalized impression.
For a moment, I’m going to set aside how few objective symptoms are indicated under Complicated Grief, and that that is not what I originally set out to compare in this thought experiment (“Grief Ambush” was not listed at the Mayo Clinic website at the time of this writing). If a patient is a person like me with a long and diverse history of not-normal-for-a woman-my-age challenges + corresponding variety of patient portals, there is a calculation on my own of trying to figure out (a) what is happening, (b) how serious is it, and (c) who do I reach out to?
X-ray of my left wrist taken in the Fall of 2019
There are really only two reasons I would choose to go to an emergency room or outpatient clinic: 1) I know exactly what is going on, or 2) I am ready to die and do not want to do so at my home. When I am concerned I have a urinary tract infection (UTI) or question if I have broken a bone, an ER or outpatient clinic is fine. These kinds of problems are readily assessed and determined with clear paths of response. For other circumstances, it has consistently been my experience that we are a not a good fit for one another: they almost never have seen someone like me = a frustration and (liability) anxiety for them, and I end up with my belief that I am super weird beyond common medical practice confirmed again*.
*This statement contains many cognitive distortions which are not helpful. I see them and am staying with them for now.
Heart rate, sweating, and trembling — overlapping between panic attacks and anxiety, or a problem with my hypertension (high blood pressure), OR maybe I exercised in a way that was unfamiliar to my ‘underconditioned’ body. Altered breathing is often a cause for alarm among some because I have a history of congestive heart failure. I’ve learned to understand additional elements such as whether I can lay completely flat comfortably (or feel like I am suffocating/gasping for air), and/or if I can continue holding a conversation while on a walk on an uneven surface. Aside: Knowing these are indicators of elevated concern with my heart history, if I experience them, I have to manage my emotional reaction so that I do not make the situation worse/more complicated. Upset stomach such as loss of appetite, nausea, or gastrointestinal (GI) distress? Could be a result of panic, anxiety — also grief, even though it is not mentioned — but I have been taking magnesium supplements for ten years now which carry known adverse effects of stomach problems, the potassium supplements sometimes come with abrupt heartburn, many of my other meds taste terrible (altering my interest and reception of other tastes), my gall bladder was removed in January of 2020 which impacts how I relate to food both in the moment and after, plus I am still available for all of the ‘regular’ ailments which turn the tummy such as a virus or food poisoning.
I confess: determining (a) what is REALLY happening, and (b) how serious is it REALLY, is complicated. I do not always know (c) who do I reach out to to figure it out, and that experience of not knowing has its own dimensions.
There’s that word again: complicated. At the top it was associated with grief, and I want to bring those two together and then bridge to the thing I was really aiming for (grief ambush). Complicated grief as a medical entity is associated with a timeline; accordingly, six months of a sustained presentation of the signs and symptoms listed will likely qualify. I am not in a position to say whether that’s a really long time to be living a life characterized by intense sorrow, pain and rumination or if that’s around when the majority of people begin to feel differently on average. There would likely of been a change in season, and time has a way of blurring edges.
Grief ambush though. There’s something acutely distinct about the overwhelm of memories, emotions, sensations, and thoughts that collapse from an unanticipated push of a lingering domino I didn’t know what still out there.
Screenshot of my phone upon opening an “album” called “UNKNOWN…” The first Track 01 turned out to be the song “Bridge Over Troubled Waters”
Simon and Garfunkel’s “Bridge Over Troubled Waters” was not just a song. It was the first song at my Dad’s funeral service, and quite possibly one of the songs at my Mom’s. I don’t remember that one as clearly (blurring of the edges). Why it was on my phone, in an album called “Unknown”, as a Track called 01, which was one of three Track 01’s is a mystery to me.
Cognitively, my mind went blank. Like an old-style t.v. that has been turned off: a burst, static, and quiet.
Physically, I no longer had a clear sensation of my body other than my hand holding the phone. I was a little dizzy as though my head were a helium balloon floating somewhere else. There was a heaviness in my upper chest.
And, I was not afraid. All of this was momentary. It had a familiarity. As the day wound away from this moment, I was physically depleted: low energy and appetite. Intellectually, I craved familiar and non-challenging content — I ended up re-watching a cooking show I’ve seen easily 5 times already.
It wasn’t until much later when I tried to problem solve how this song came to be on my phone in this way that I realized I held sorrow, too. It’s a beautiful song, and a sad memory. Now both of those each and overlapping, are real. Neither is “real” in a way that is objectively recognized with shared understanding and measurement.
That was when I realized it was the Loss Domino that tumbled into my thinking. That set a course for distinguishing panic, grief, and anxiety isn’t necessarily about whether they feel any different from one another. It’s about what thoughts they collide into, how I relate the then it bridges into my now, and who is in that moment with me.
Since 2009, across a wide range of personal and professional circumstances, I have spent a significant amount of time thinking and feeling about dying. It is important to clarify that I say this anchored in the personal belief that having these thoughts is entirely different than wanting or moving intentionally in the direction of death. I would extend that even fantasizing about dying may be a lot more about fatigue and craving liberation from suffering. Recognizing these distinctions and supporting a person and his/her loved ones to navigate these kinds of thoughts and feelings is ~not~ the domain of a speech-language pathologist. I do believe that being able to ~communicate~ thoughts and feelings about dying, thereby reaching/accessing those with the expertise to process that information appropriately, is.
That can be tricky on it’s own. Persons who need to hear this information include (but is not limited to):
– loved ones and caregivers,
– physicians and health care providers who need to enact medical directives for what constitutes a person’s wishes about what happens to her or his life,
– legal counsel to prepare appropriate documentation in support of decisions,
– persons with expertise navigating complex mental/emotional landscapes (such as social workers, psychologists, and end-of-life doulas).
– spiritual and/or faith-based counsel.
For persons who rely on means other than speech, all of this can be overwhelmingly challenging and emotional. It may require going through someone that the person would otherwise not wish to be present for those conversations, or relying on someone else’s interpretation and commitment to follow through, or using a ‘voice’ which bears little resemblance to the personality and tone the person would consider their own. It may be tedious and error-prone in spelling things out, literally, letter by letter. For all of these reasons, a speech-language pathologist invested in palliative care and end-of-life conversations can have a critical role.
This is a combination of resources that have informed my own world view about these matters, but I do not mean to imply that I have the best or only view; and I absolutely believe that choosing to engage in the life of a person who is actively dying should be done very mindfully.
I experienced the movie Stranger Than Fiction as having profound messages about life and death, with both tender and entertaining points. The scene between Will Ferrel and Dustin Hoffman talking about coming to terms with death is incredibly beautiful.
Maurice Sendak talked openly about his thought process leading into his death. My favorite is the illustrated Fresh Air talk, and the last interview he ever gave touches on being present as well as reflective.
There have been a number of TED talks that review death and dying.
The Transformative Power of Crisis by Dr. Robert Alter and Jane Alter discusses a variety of topics that impact a person’s life, including death.
The documentary Rivers and Tides, and learning about Andy Goldsworthy’s work generally, for-sure changed my life in all matters of how I regard time and experience. This clip cuts off at an unfortunate point (right before he says something deeply poetic), but still illustrates a connectivity that I believe in.
For now, I will close — I imagine this collection will continue to evolve and grow though.
