Sometimes ideas are difficult to wrap our minds around — that we may have never seen someone complete a task in a particular way, so it seems unusual or difficult to try. Or, a person may have never thought about an activity they already do in an additional context.
Example: everyone I know communicates using a wide range of methods:
sounds with mouthparts (commonly speaking, but other noises as well),
facial expressions,
body movements and gestures,
visual and text media (such as sharing photos, exchanging text messages, emojis and emotional reactions, writing notes, etc.), and
references to things outside of themselves (a cardboard roll indicating there’s no more toilet paper, a family calendar or coordinating app, a glance at an empty glass to alert a waiter that more drink is wanted, and so on).
Screenshot of text exchange with one of my teens which illustrates ‘sounds,’ words, images and punctuation incorporated to convey messages.
One of my teens types out noises they might make incorporated into their messages — that’s tricky for me since they also have used acronyms to save time and keystrokes. Fortunately, I can use the emotional reaction (represented by a question mark) to convey that I am confused.
My point is: using a wide variety of approaches is not new. It’s part of how everyone communicates all of the time.
All of this also applies when it comes to someone who has dementia (changes to their thinking), or aphasia (changes to language), or does not hear perhaps as well as they once did; and even in situations that are a combination of factors.
My own experience with elder populations is that whether a listener has dementia, aphasia, or no hearing aids: yelling seems to be the most typical go-to strategy. I’m not sure why that is exactly, but it may be that’s what has been seen (with elder populations) and so that’s what gets re-tried.
It may be hard to imagine incorporating other communication methods though if you’ve never seen it before. This isn’t a perfect example, it’s just one illustration of how it might look:
I am wearing a personal amplifier with the speaker set near my friend to support hearing in a noisy environment. Holding up an item (a wreath decorated with sewing notions), allows for shared viewing and reference. A set of dry erase cards allows for quick hand-written notes or to provide options.
I have written previously on the set of dry erase “flash” cards I have in supporting exchanges. They are easy to hold in my hand and are on a ring so I can flip to a blank card readily in a conversation (without pausing to erase) or refer back to something if needed. It’s also a way for me to gauge messages that are repeated often enough to warrant making a permanent card in the set. I have used letter stickers and typed messages that I affixed with clear packing tape.
A phone’s camera can also be a ready and fast way to share information or provide a visual cue. Taking a photo of the nightstand allowed my friend to tell me what she wanted off of it:
A collection of lotion and hygiene items, personal effects, and snacks that were on a nightstand out of reach and angle of view of an individual can be photographed to present an impromptu “menu” of options.
Recently I had a different opportunity to use a standard app on my phone — opening a new Notes page and typing with the largest font in bold allowed a high-contrast, backlit text support which proved more functional than my hand-written ones for an individual who has significant vision impairment.
Again, using a wide variety of approaches is not new. It’s part of how everyone communicates all of the time.My point is: to try providing examples of different ways we all already communicate in the additional context of with elder populations.
For a surprisingly long time I shared information or asked questions about my prescription management as though other people in my life also kept track of 18 different medications — not including over-the-counter (OTC) pain killers, supplements, and vitamins. It was something of a realization that I take w-a-y more pills per month (~40 x 30 = 1,200), than my spouse does collectively in a year.
When I realized that, I started trying to keep those conversations to my physicians and their teams. I bring two versions of summary tables I update with any prescription change: alphabetically by generic name which includes notes on why I am taking each, and an outline of how I take my medications across the day.
I originally tried this method because I was working with a sleep specialist and wanted to see if any of the meds I take are associated with daytime sleepiness. Then, because I already had it, I shared it with both of my nephrologists (transplant and local) and they felt like this was helpful to get a snapshot of my regimen.
Given this perspective of my day, I was described as having a “heavy pill load;” which kind of amused me insofar as I have had no fewer than 26 pills per day for over 10 years now. While this particular snapshot has more than that, at some point, what’s the difference? The gap from 26 to 40 just feels insignificant when there’s already five routine times to take meds per day. I may be able to whittle that down again, but it’s unlikely to ever return to a quantity that would be consistent with “healthy” people.
My definition of “healthy” or “normal” people are those who do not do these kinds of tasks as part of their day, or even as part of their conversations with their physician.
The thing is: there is cost and risks to not having conversations with people other than physicians and their teams.
On August 26, 2021, I went into an Outpatient Lab Facility to complete my routine bloodwork and urinalysis. As a kidney transplant recipient, that has been part of my monthly monitoring for the last decade — with the caveat that in the early days post-transplant it was every few days, and presently with the pandemic, it is sometimes more like every 6 weeks. That’s around 120 times so far and does not reflect the number of times I complete bloodwork or urine samples for other reasons; most commonly, with a suppressed immune system, I am susceptible to urinary tract and bladder infections. Are those different or two names for the same thing? It feels like I should know that, but I don’t. Also, I have a jumpy pelvic floor. With endometriosis, appendectomy, a twin pregnancy with C-section, peritoneal dialysis, and kidney transplant all in the same region surgically, I carry myself with unusual core muscle allocation. That is, I don’t always use the muscles I should and this puts stress on the muscles that are compensating that can result in spasms and cramps that feel very much like the urgency associated with a urinary tract infection (UTI).
There is no joy in learning what I really really thought was a UTI isn’t because it means:
I cannot trust my interpretation of what my body signals relay (I cannot trust myself),
I am doing it to myself: I am the reason I am in pain, and
it will be that much harder the next time I do have a UTI/bladder infection for me to recognize it.
I worked with my Occupational Therapist for pelvic floor pain relief to develop this process, which was doubly appropriate since part of the challenge was in the fine motor skills (using my hands).
The summary version of my Clean Catch Protocol is:
After I wash my hands, I tear each of three towelette packets along three of their outside edges and fold them open to try to maintain the ‘sanitary’ environment of the sealed packet.
I unfold the towelettes a little bit — only in this way are they actually usable for me.
I wipe myself down there (I’m not being coy, I actually cannot see the area I am working with), from front-to-back with each towelette separately ‘right, left, center’ and without ever letting myself ‘close’ because that would violate the whole point of cleaning. In the photo series, I used my laptop hinge to sort of illustrate this concept.
(Not pictured, even metaphorically): Pee ‘some’ into the toilet and then move a collection cup into the ‘stream’ to capture at least 30ccs.
If you’ve never peed on your own hand, it is evident that you and I live very different lives. I do not intend to be gross or crude. The thing is, part of the deal with chronic illness is accepting a level of discourse you may have never imagined for yourself. Part of coping with that, for me, is a sense of [gallows] humor. I have been greeted hundreds of times with the question, “Can you urinate for us?” If that’s not funny, it’s surreal and absurd…bordering on nightmarish.
And, as many times as I have done this, I do not understand why this is the procedure for owners of vaginas. My personal experience is that no matter how careful I am there is a HIGH probability that the sample will be considered “contaminated.” I do not know what the quantitative count of how many times that has been told to me over the years, but the emotional toll is HIGH. Is there a comparable experience quite like being told, regularly, that your every effort to be ‘clean’ with your private parts was still too dirty? The advertisers of feminine hygiene products bank on that shame.
I would also extend that this is extremely difficult to talk about. It IS gross/general or crude/rough, in part, because no one talks about it. What do persons who have more challenged motor control than I do, do with this at all? Add it all up, most importantly: How does this ever get improved upon?
I don’t just mean make it so that it isn’t awkward or embarrassing — although I would argue those are valid goals on their own — a “contaminated” result is all that it tells. There is no other additional information learned. Some of those not-a-UTIs could not be verified based on the follow-up sample; that does not mean it wasn’t a UTI. The next step in the decision-making hierarchy in that event is if I have symptoms. My aforementioned history with this pattern is a conflict of interest and credibility. Also, if this information is important, it is important to increase its success rate in providing usable results. I cannot do that on my own.
This isn’t a journal entry about my awesome specialized experience in medication management or completing Clean Catch Urine Specimens. It’s a journal entry about sharing the awkward, crude, gross, surreal, absurd, and even nightmarish with the goal that it even they can be improved upon.
What becomes normalized THEN is: Someone else will hopefully not have as complicated a time. Plus, eventually, someone else will figure out how to make things even better.
“One day you will tell your story of how you’ve overcome what you are going through now, and it will be part of someone else’s survival guide.”
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.
While I was signing in at the front door of the personal care facility, a woman came up to me with a determined stride. She stood in the doorway and said, “What are you doing here?” I do not know if she recognized me from other times I have come (twice per week in the last two months), but it is doubtful. I am familiar with her though because she is often in the community t.v. room — not typically looking quite this uncertain.
I responded, “There are folks here that I visit.” She replied, “Can you visit me?” So I said, “Sure.”
When I stepped inside the building she asked, wide-eyed, “Can you take me home?”
In June (2021), I had the fortune of attending an Adult Children of Aging Parents (ACAP) online seminar with Dr. Edward Shaw where he presented on Managing behaviors of Alzheimer’s and other age-related dementias. Between that discussion and having read his book, I had a starting idea of how to respond to the vulnerable question of this woman.
I suggested we sit down together to talk. I showed her my name tag; she read it three times and complimented my picture. I asked her name, but she struggled with that (possibly more difficult because mine was still visible to her). She gave me consent to hold her hand and I explained that I came to sit and keep company with people. Then I took out two watercolor paintings I hoped would interest and distract-calm her.
A watercolor painting of a bright pink water lily or lotus flower.
In an abrupt shift in tone, she immediately and rapidly said, “I don’t know what that is. I don’t know what that is.” She shook her head, “I don’t know.” I responded, “It is a water lily or lotus.” Her facial expression scrunched up. “Lotus. I don’t know what a lotus is.” I said, “That’s all right. I have another.”
The second painting was sort of a field of flowers.
Watercolor painting of white, red, blue and purple flowers.
I said, “I was trying to learn how to paint daisies.” She said, calmly, “Oh, daisies.” I said she could hold onto the painting while she watched the t.v. program.
When I went to the room of my assigned visit, the t.v. was also on — appearing to be a Christmas program of some sort. She immediately smiled and turned to face me. As I sat down, I made small talk about the afghan crocheted blanket on her chair and the empty bird feeder by her window. The water lily was still at the top of my bag and I brought it out to show her.
“Ooh! I like that! I like the pink. I like that.” She touched the painted petals.
I went through my collection of things and found every image I had which included spots of bright pink — an outdated calendar image of a ladybug beneath another flower, a photograph of Christo and Jeane-Claude’s pink islands, a sunset landscape. Using a dry erase board with written options, we exchanged thoughts on how bright colors make us feel and other peaceful ideas (ocean waves, mountain snow, trees, birds). She had previously selected an Ansel Adams black and white mountain landscape beside her bed, and when I asked if she would like to swap it for the water lily she immediately agreed.
“Yes! That’s good. I like the pink. I like that.”
Next week I will bring bird seed so maybe we can watch birds at her window.
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.
Before my dad was officially diagnosed with ALS, the working theory for his abrupt weight loss was digestive: in short, he wasn’t eating enough calories. This explanation was elevated in the assessment process because one of the words he used to describe how he felt was “nauseous.” It wasn’t until I was with him over several meal attempts that I realized we needed to examine that word more closely.
To me, nauseous meant an unsettled feeling in the stomach and a pronounced urgency to throw up; I associated it with a franticness of wanting to find some where to vomit, not on myself. But my dad wasn’t doing that — he would say he was nauseous and then lie down. I believed him that his body was giving him cues and that he was acting on those with personal expertise, and I wondered if there might be other words that better matched his experience. While he rested, I did a search on synonyms.
Screenshot of a Google search for “nausea synonyms” identified: sickness, biliousness, queasiness, vomiting, retching, gagging, travel-sickness, seasickness, carsickness, airsickness, motion sickness. These were said to be “From Oxford Languages”
The two that jumped out at me were biliousness and queasiness; ironically, since these were both in a paler font. Others were associated with specific circumstances (various kinds of travel or motion sickness), which also gave us the idea of making comparisons between how he felt at that time in references to past situations of being unwell.
When we changed the conversation to add specificity to his wording and detailed comparison and lack of similarity from other circumstances, it started to change the direction of our thinking. Unfortunately, it took a little longer for his familiar medical team. They weren’t ready to rule out digestive concerns, and it took my dad’s sense of himself + his understanding of his rate of change to compel a different team into re-examining the available evidence. I also believe that another factor was the urgency expressed by my cousin to the ER doctor in the hall, making it profanely clear that her background as a nurse and knowing my dad was a clanging alarm bell that she intended to have heard.
I believe that the words we use matter. What I don’t know is whichwords most accurately convey information which can be translated when it is needed most. Sometimes words chosen can light the path to a solution, and sometimes it is a misdirect that increases pain and suffering.
Regina Fink, RN, PhD, AOCN has studied pain assessment, and has compiled the WILDA approach:
Words to describe pain
Intensity (0 to 10)
Location
Duration
Aggravating and Alleviating
Dr. Fink provides a detailed and helpful analysis of each component of the in the 2000 Baylor University Medical Center Proceedings titled, Pain assessment: the cornerstone to optimal pain management. It is well worth reading and I highly recommend it. I have strong opinions about the use of intensity ranges as the sole quantifier of pain/concern which I have gone into detail about elsewhere. For my purpose presently, I am focusing on the first section she discussed relative to words to describe pain — she goes on to explain how these lend insight in ways that are associated with nerves, muscles, and organs:
Word bank of terms to describe physical pain which includes descriptions of neuropathic discomfort, somatic, and visceral. Each category have different ways they locate and behave in the body — such as specific to one spot or across a general area.
In terms of health literacy, I feel like these are the seeds of a glossary we should be talking about, at a minimum, when relaying our experiences of pain to medical teams. These also are critical to be teaching our kids relationships with their sensations so that they are able to interact with confidence and autonomy. A shared vocabulary is critical for a culture of informed consent.
In talking with a dear friend about the WILDA approach, she asked two incredibly important questions:
What about non-physical pain? The WILDA vocabulary do not apply well to mental, emotional, social or spiritual/existential pain. We agree that it is misguided to conceptualize these as exclusive or can be distinguished from one another.
How do we move beyond a comparison of pain against NO-pain? If zero discomfort is the standard of ‘normal,’ both she and I are immediately out of the conversation because that does not happen for either of us.
I don’t have an answer to these questions even just for myself, but I do know that I benefit from conversations about it and that sometimes having a starting place to bounce off of helps advance the cause.
A book that has been helpful as a parent is Maria Lamia, PhD’s Understanding MYSELF: A kid’s guide to intense emotions and strong feelings (2011).
Dr. Lamia’s review gives broad descriptions of emotional landscapes and provides key words that may be associated with these. Each chapter includes information in straightforward language, first-person kid quotes, a short survey of self-evaluation, resources for building resilience, and some research-based science. There’s part of me that experiences my pained and suffering Self aschildlike…that I do best in understanding, relating and creating spaces for healing when I can hold myself gently in that mindset.
I reviewed Dr. Lamia’s vocabulary for the areas of Feeling Self-Conscious (which includes embarrassment, guilt, shame, and pride), Feeling Threatened (as with anxiety, fear, and disgust), and Feeling Gloomy (loneliness, sadness, and grief).
Note: I kept the terms for Pride in the table, but I tend to associate that as a positive and I am not sure how that would correspond to medical/mental health teams at least in the same way as the other feelings and emotions.
A table of vocabulary grouped by Mary C. Lamia (2011) categories in columns of Feeling Self-Conscious, Feeling Threatened, and Feeling Gloomy. The second row includes additional words from my own experience with feelings, social implications, and thought energy flows I associate with each column.
With my kids, I can just turn to the main chapter grouping and have them review the words — typically, they find that there are a few that ‘jump out at them’ almost as if they were written in a special font at that moment. Now that they are teens, we can talk more about the nature of their thinking — are thoughts like ping-pong balls, bouncing out of control? How about circling around or spiraling outward from a central, negative idea? Maybe just stuck and unmoving?
I say this is something I do with my kids, which it is, but it is as much a process I am trying to learn myself as it is something I hope to impart as a parent.
Two photos of the same tree. On the left, it appears round and full. On the right, it is evident that the trunk and crown are actually U-shaped with an enormous gap in the leaves for where it has been pruned back for power lines.
So that’s where I am with this, fully aware that this is not a whole picture.
I do not yet have vocabulary for really any social or spiritual/existential pain — although I suspect there is some overlap within aching loss and/or feelings of being outside of a higher order of belonging.
I also know that there are cultural differences in the experience of word meaning particularly as it relates to co-constructed understanding as with exchanges of information. As one example, being white may have had an influence on my cousin’s use of profanity as being heard as emphatic and passionate rather than with implicit biases of being unsophisticated, threatening, or disrespectful. Conversations among speakers of the same primary language undoubtedly go more smoothly than when there is a translation involved — particularly when some languages may not share common meaning in expression or tone. The very real risk is informed consent may not be achieved, and in medical-health situations that rapidly becomes dangerous.
I want to do better: I want to learn more. I want this to be just a beginning.
I originally posted this on social media 5 May 2011, which was just before my kidney transplant surgery. I was on outpatient hemodialysis three times a week, and I knew my life was on the threshold of unimaginable changes. I’m still reflecting on what I know now compared to then, so this is just giving acknowledgement to that time.
“There’s no question that I’m in a bit of a headspace about how to process/navigate it all, and I’m not altogether comfortable with the role of my ego in all of this. I will say though, I have enjoyed this process/experience infinitely more than judging myself on whether or not I had accomplished enough any particular day (go figure), and have truly valued this consideration of what is truly important to me. There will always be laundry, or books about how to parent, or something I haven’t done yet for my husband/children/job/family/dear friends, etc., etc., etc. But really, most of that is just the superficial distractions on top of the real work of living.
To Be
1. Breathe. I am here, now. I am alive, now. I only have moments to live (specifically, this moment).
2. Nurture an open heart. I believe this is my best/only hope for being free.
3. Make deliberate choices which support my values. I feel like I’ve come upon a 3-part rule which seems to me to be perfectly true: (1) Decide to do that which will cause the least stress/pain later, (2) When in doubt, if only because it is the easiest remember: tell the truth, (3) Make the choice which is most consistent with what I want my best self to be. I have yet to find a situation where these don’t apply.
4. Pay attention. Combined with #1 or #2, I feel well aligned with a “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” (Ferris Bueller, 1986). Ironically though, combined with #3 this is probably one of my strongest coping strategies. Despite how it may appear, I do not consider myself to be an especially “optimistic” person. I make very deliberate choices about what I’m going to pay attention to (how incredibly awesome and amazing the majority of my life is), and what I feel is less important in the grand scheme of my values.
5. Speak, listen, and be with silence. Not necessarily in that order.
6. Practice 1- 5 often. None of these are achievable without cultivating them on purpose. They may be simple, but they are not easy.
At some point it occurred to me that, as part of being a fan of balance, yin and yang, something/nothing, Shakespeare, I also have a solid list of what I think Life ISN’T about.
Not To Be
1. Life is not a chicken. I don’t choose which parts I like and which parts I leave at the bottom of the bucket. It’s all life. Whether you want to take a, “no waves, just ocean” view or a Paul’s letter to Corinthians, Chapter 12:12-27 (if you happen to take a religious stance), or a “Nothing human is alien to me” (Terence) approach. My life may, at times, seem grossly unnatural, or marked by pain or despair, or any number of descriptions that are not appealing or pleasant. But denying or railing against what clearly is seems to me to be a waste of what time and energy I do have. Applying this outwardly, I find that this belief joins with “nurture an open heart” and how I hope to receive other people’s experiences without judgment whenever possible. It is not for me to say what is “right” of/for others, there is no benefit in doing so, and it ultimately pains me to be divided from others by those who would cultivate fear or hatred of difference.
2. Life is not a scoreboard. I should do things because they reflect deliberate choices aligned with my values, and that is its own reward.
3. Life is for living, not lists. No matter how I try to craft the perfect summary of what I believe, or compose a sincere, ‘Everything I need to know I learned on Facebook,” poster, it would be better for me to log off and get back to the real work of living. A segment of a Warren Miller documentary profiling paraplegic extreme skiers, one had written “Die Living” on his sit ski and I can’t help but feel that he’s right. Oh, Life: What an ocean of experience!
My earliest memories of being “not-well/whole” were both in 1982, when I was 8 years old. We were traveling in Mexico and at that time, water was problematic for persons not from the area. I remember clearly seeing the red tomato soup and orange soda before vomiting all over the restaurant table. I don’t have a visual memory of what happened next; only the sound of one of my parents chiding me for not going into the bathroom to throw-up, and the other parent chiding them that I probably would have if I’d known what was coming. Lesson: Whenever possible, be discreet with sick: others don’t want to see that. This was confirmed many times over the years by peers, educators, and faculty at every in-school vomit I ever witnessed.
Later that year, I took an abrupt fall on roller skates and ‘caught’ myself poorly with my left hand. There was a bracelet of bruise and I couldn’t move my hand, but it wasn’t swollen or at unusual angles. My parents and I went to the nearest Emergency Room, and I knew that they weren’t happy about the option because it did not have a reputation for quality of care. It was just the nearest one. Lesson: a person in pain may resort to the available response, not necessarily one they like or want.
I don’t remember anyone talking to me. I was wheeled into the x-ray room without my parents, and the technician kept positioning my broken wrist in ways that made me cry out. In retrospect, as an adult, I know he was doing that to get images of the breakage, but I think the only thing he said was, “stop screaming.” Lesson: Whenever possible, be discreet with pain: others shouldn’t have to deal with that. This was confirmed many times over the years by peers and family as soon as I joined the club of menstruators.
Thinking about it now, I didn’t have a pediatric dentist — I have no reason to believe that was a thing when I was a child. I saw one of parent’s dentists, who I have no recollection of ever saying anything to me other than to tell me I needed to brush more and floss. Lesson: Experts knowwhen you aren’t following the rules of care, and will call you out if you lie.
I have vague memories of appointments with some kind of vision specialist for awhile. I have no idea, none whatsoever, what the goals were — watching rapidly presented photos of dominoes and told to call out the numbers, use a mirror to draw myself…I remember crying a lot. The man got upset with me for getting upset, but if there was a lesson in there somewhere I missed it entirely.
In grad school I saw someone for chronic migraines — my primary care physician, a headache specialist (is that a thing? I developed elaborate rating scales to note + characterize my daily pains and what, if any, patterns might be detected for catching when a headache was going to turn into a migraine so that medications that worked best in the first hour would be effective at all. Lesson: More data doesn’t necessarily lead to better answers and sometimes the answer medications offer isn’t much of one.
After grad school, I worked as a speech-language pathologist in a school district. Being a part of hundreds of meetings and forests of paperwork, I was the “expert” that was supposed to explain things — clear communication was my job. With all those kids, parents, educators, and other special area people, I developed and refined a sense of how to filter information, translate jargon, take notes, and ask probing questions. That inadvertently served me well when I became catastrophically ill. I’ve already written about my medical diary and questions, so my main point now is that I came into a process of learning how to navigate my body and interactions with others when unwell became explicit, intentional, and collaborative.
I wasn’t just showing up with my body of evidence for someone else to tell me what had happened, was happening, might happen next. My being chronically ill pretty well exactly paired with my parenting, and over time I began thinking more and more about explicitly, on-purpose teaching my kids along with their other parent and medical teams they encountered.
we talked about them over dinners, read excerpts together, referenced these ideas when current events featured health or medicine, and practiced increasing self-advocacy with respect to their own medical-emotional health.
Sometimes it was an overlap between my health and this goal. As in, it was during the time when a new blood pressure medication was making my vision blurry that I realized I shouldn’t be the one reading over the counter medication labels for them: as teens, it was appropriate that we should transition to supporting their decision-making in listening to their body and taking steps, knowing about dosages and timing schedules.
The only thing I might add to Figure 4, Model 13 from my personal experience is
a loop — that this is a repeating cycle, not finished in the way “conclusion” often implies, and
some vehicle for storytelling: sharing lessons learned with others, hearing and learning with theirs.
For me, the sharing component is similar to “Balancing between hope and despair”: it is a filter or prism that influences all of the other aspects of preparative waiting. The figure in the hall, the patient, in so many respects may be alone. However, there are resources to be found within their framework of preparative waiting:
to have heard about the seeking and giving of information in medical-emotional health experiences of others (e.g., this is what happened with me),
to know what kinds of clues there might be and perspectives of interpreting (that is, how I saw, heard, felt, came to understandings, etc., along the way),
community references around cultures, spiritual and philosophical practices in handling the existential threat within “why is this happening to me” and “what does it mean?”
and giving and receiving among one another meaningful support and tools for establishing spaces of calm within the inherent chaos and uncertainty whether or not respite is sought. Rest from thinking, wondering, imagining, dreading, worrying, grieving; recuperation from all the moving around that comes with being acted upon (even in the service of diagnosis).
Towards that end, I find myself at this end: it is time I rest my mind from this.
At the time of my first experience with catastrophic health failure, there was a popular t.v. show which featured a gifted but cantankerous diagnostician who got all the most problematic medical crises AND completely solved them within the hour-long drama. The show’s focus was on the physician and his process, and it was seductive to celebrate a genius-healer (comically gruff none-the-less). I imagined that if I were truly sick, I would accept the expertise of anyone to be well, no matter how rude (cruel) they were to get to that happy end.
When I became the problematic medical crisis, part of the unraveling was the absence of heroes and heroics. As the many hours became many years, I came to an altogether different understanding about what I wanted of a physician and medical team, what my role was, the drama trauma tedium of the process, and if it ever ends. It’s pretty clearly that would not be an entertaining show.
The back of my right hand has a visible path of bluish veins, and, following those lines, a constellation of small whitish scars from where intravenous (I-V) lines have been established.
Medically speaking, if there is some choice to be made, choose to be boring. Being interesting or a ‘learning experience’ for someone else isn’t awful, but it’s not ideal; and being a challenge to a medical team is downright crummy. I am not of the opinion that I can separate my sense of my self (my identity, my value, my presence) from my body (which necessarily means my illnesses). My body is the vessel by which all of the rest of it exists in the world. It’s one thing to explain this to other people, it’s a whole different conversation with medical teams — often specialized to really only recognize a part of me. I don’t want to be difficult.
On Twitter, I saw a compelling contrast of statements. Unfortunately (1) I cannot find the original post that I saw this, but (2) it is common enough that it should also be familiar to medical teams:
From the physician: “Your online search does not compare to my medical degree + years of practice.”
From the patient: “Your medical degree and years of being you does not compare to my years of living as this Body Self + particular concern which drove me to research it
I have a strong professional background in data collection: I have spent significant time studying not just how to do it but also how to teach it to others in clinical practice as a speech-language pathologist. In short, I know the value of being able to look at a set of information and interpret it easily. However, when applied to myself, I was told I was a “type-A personality, which is more likely to experience anxiety, perfectionism and control issues.” If I enter a conversation about how/why I charted things the way I did, I run the risk of validating that off-the-cuff assessment and overstaying my allotted time in the physician’s schedule. So I made a different choice: I don’t want to be difficult.
Aside from when I am characterized with a personality profile directly during a medical interview, am I noted as responsible, thorough, informed, educated — a self-advocate and collaborator of my own health? Is there a working theory that I am medication- or solution-seeking for situations which have none; that is, when there is no cure which completely solves the problem in a tidy way? It all runs through my head (and more) when I am trying to navigate from the inside of my body self.
It is as familiar as the back of my hand.
I find having intravenous (I-V) needles in the top of my hand intensely uncomfortable. There isn’t much flesh there and when I am dehydrated, which commonly happens before any procedure with a no eat or drink restriction prep, it is harder and more painful. When push comes to shove, it doesn’t much matter though: because I don’t want to be difficult.
End blip.
Note: among the biases I face according to my age, gender, and particular health profile, I am simultaneously aware that there are different and huge forces that threaten “difficult” over other persons on the basis of their age, gender, race, faith and cultural background, and health statuses. I do not know what the answer is, but I am ready to listen+learn so that I can do my part in making this better.
I do not remember childhood feelings of shame or unworthiness in a global sense. Within specific circumstances, sure: but as a kid I felt loved and I believed it. Sometime in middle and high school things became less hinged between my parents and I, but not in a desperate or flailing or failing way.
So let’s say the beginning turn was the intersection at becoming a parent Chronic Patient.
I wish the signs were as easy to see.
There were other things that happened simultaneously — that was when some of us recognized my mom’s problem solving and memory skills were inarguably abnormal. Plus I had to adjust my expectations for myself relative to my job; coming off of maternity leave and being a working mom with a stay-at-home working partner as primary parent to our twins. While clearly these have significance, they happened outside of my body. Newly being a parent + Chronic Patient both came from within.
What I remember about the first night of congestive heart failure was more nagging worry. The cough wasn’t going away, and I couldn’t quite settle. I didn’t know then what I know now, so I wasn’t afraidof it, I just didn’t understand.And then I didn’t understand all the fuss at the emergency room, or how the babies would be fed once nursing was not available to me (or what to do about all the milk that just kept coming), or when I could get back to my family, or what the terminology meant (not ‘failure’ like your heart failed, but it failed to keep up with the level of fluid overload…), or how sick was I: is it really safe for me to go home? What does it mean that I am the youngest person by twenty years in the cardiologist waiting room? And so on.
I do not recall dwelling on the questions, just that I had them and they also dissipated. There was always so much to be done, it’s not like there was a ton of time to think. Routines got carved out, we moved on.
What I do remember about not dying in 2009includes asides from the particular question of when/how/why shame developed.I remember feeling there was no dignity in catastrophic illness, and no need for it. I had no control over any bodily fluids, vomiting or diarrhea were irrevocable. Going to the bathroom lying down while on dialysis was the only option, so that’s what I did…apologizing and thanking the nurse who stayed with me and cleaned meafterwards.
There were a handful of magical thinking episodes, and among them was the dual notion that: I got to be alive to see that my spouse and kids would be okaywithoutme, and that my part going forward was to not to make it harder forthem. Those are the words of the mantra I told myself but I think the underlying meaning was:
I have no value to my spouse or kids, and
I am already a problem/difficulty, but TRY not to make it worse.
Except, I was always making it worse.
I was desperately afraid of bankrupting our family with my medical bills. That we would have no college funds for the kids, no retirement fund, we might lose our house. In my mind, the cost of my being alive was astronomical. I told myself, repeatedly, I would never live long enough to be worth what had been given on my behalf.
This was a water color painting I did of my backyard. It started out so different from this, a collage with strips of construction paper (while still being my backyard), that when I saw it come forward like this I actually gasped.
So maybe I am more sure when/where the shame started…but knowing it was me all along doesn’t quite feel like helping. My back yard, metaphorically and actually, isn’t moving.
I realize that I have memories of more Body-Self health stories along the way. Some scenarios that grew from thoughts that I presented to myself and did not question. Others were explicitly directed to me — chided for taking on too much fluid before dialysis, for example, was received as a brutal judgment against thirst. In addition, another setting evolved within my job and although it was outside of myself, I internalized the work I did there.
The first three years, I’m pretty sure I loved it. It was hard, but I thought I was good at it — and particularly skilled at some aspects of it. At the threshold of 2012, another unanticipated intersection: I wounded a critical place on my arm in a random, hapless accident and the funding for my position at work changed, shifts that gave me wholly different perspectives of myself.
I had been excited to go to that performance review — a chance for someone else to see what I had been dedicating myself to doing well. My wrist was unnaturally bulged and throbbing, so I kept it on my lap out of sight, under the table. The meeting began with an immediate pivot into the bureaucracies of University existence. I’d had no idea, did not know what he was talking about. “You’re completely outside of all metrics.” “All of this is essentially invisible as far as the University is concerned.” Are you telling me that I have not been describing what I do in ways the University recognizes, or are you saying what I have been doing is not my job? “I’m not sure.”
I didn’t ask this out loud, but my mind rattled with: How could I possibly have been working so hard and yet it was abjectly irrelevant? I have a feeling his response would have been, “I’m not sure.” In my mental timeline, the surgery to end my fistula was near around then, and the two incidents are pretty well merged in my mind.
Content warning: the next photo contains a wound.
Unbeknownst to me until I woke up after, the surgeon used glue instead of stitches in the procedure to ‘tie off’ my fistula and resolve the aneurysm that had developed when I bumped a doorknob. To me, the result looked as though I’d been attacked by a hatchet.
A lot of things happened between 2012 and 2017, which is when I decided I wasn’t a good fit for the position (I really wasn’t), and it wasn’t a healthy fit for me. There were so many conversations where, in so many ways, I did not know what was happening. Brain fog seemed to be constant. Dreams were consistently horrific. Incontinence, pelvic pain, and sudden loss of bowel control all sure seemed like they were related but endless appointments with specialists and increasingly bizarre tests never identified a thing. Work aspects I thought I did well were evaluated otherwise in blunt, unambiguous and minimizing terms. My mom died in February and by March I said that I did not think I should return to the position in the Fall.
I never quit the position: I was never offered a new contract for the next year. The bureaucracies re-surfaced and I wrote a letter. In all that time, not a single licensed person ever observed me and gave me feedback on my performance on half of what I’d understood my job title to be. I had no ‘exit interview’ — no one asked what I learned, or what I might’ve done differently. I infer that none of that was important enough to matter. I remember so much confusion and weeping.
I’d wanted so badly to be a recognizable wife and mother — to be trustworthy. I wanted my doctors to consider me a “good patient” and not just care for me but also care about me. I strove to be a contributing employee. I wanted my mentees to know I took the situation in deeply. I liked feeling that my experiences had purpose — that my first-person knowledge gave me insight, meaningful perspective. That my struggles and my victories were visible also to others, and mattered. But maybe neither were.
2021 marked the four-year anniversary of when my mom died, abruptly of an intracranial hemorrhage (February 2017). I had learned about dementia before then through a support group for adult children of aging parents, so our last year or two of interactions were much improved (even if often odd). My dad died of ALS something like two years and one month later (March 2019). All of that and the year afterwards was intense and surreal. Many times over we said out loud how glad we were I had not been working.
Now I am spending hours most weeks thinking about sleep/dreams, and trauma. Trying to unravel who it is I am today, and what all that means particularly as it relates to who I would like to be — separate from any “shoulds”. It feels like some of it is finding a path to resolution, but I’ve been pretty convinced that walk needed to include a reckoning with myself: hence this entry.
Winter of 2021, a group of three deer wandered through our back yard.
It’s still me. All along. I see that there’s more than shame back there, but I don’t know what, if anything, it all means. For now, I think that’s okay. I’m going to pause on these thoughts, and explore others.
