{"id":888,"date":"2020-07-31T20:17:52","date_gmt":"2020-07-31T20:17:52","guid":{"rendered":"http:\/\/ebling.library.wisc.edu\/corpus-callosum\/?p=888"},"modified":"2020-12-08T01:12:03","modified_gmt":"2020-12-08T01:12:03","slug":"time","status":"publish","type":"post","link":"https:\/\/ebling.library.wisc.edu\/corpus-callosum\/time\/","title":{"rendered":"Time"},"content":{"rendered":"

Kristen Kehl-Floberg, BFA, MSOT, OTR\/L<\/em>
\nSchool of Medicine and Public Health, Wisconsin Alzheimer’s Institute<\/em>
\n2019<\/em>
\nEssay with case study
\n<\/em><\/p>\n

 <\/p>\n

\u201cAll we have to decide is what to do with the time that is given to us.\u201d<\/em><\/p>\n

-J.R.R. Tolkien<\/em><\/p>\n

 <\/p>\n

A person\u2019s use of time is a code for meaning and ability.\u00a0 It isn\u2019t the full text of a person\u2019s choices and needs, but it cracks open the conversation.\u00a0 To an occupational therapist, time is a factor, a context, a resource, a metric, and a performance dimension.<\/p>\n

At my first visit with a person, I ask some variation of \u201chow do you spend your time?\u201d<\/p>\n

My interest is two-fold; I get info about their unique identity and life course so I know what my skilled intervention needs to support, and they get insight into how well their present reality matches their desire.\u00a0 People whose lives have proceeded at a steady clip until now (such as those with traumatic injuries, recently-diagnosed cancer or degenerative disease, a parent of a newborn or young child with a disability, or orthopedic surgeries) name complex things like working, family routines, social and community life, spare-time pursuits, and so on.\u00a0 The nature of their need for therapy is abrupt, so often they say that being well and healed means a complete return to living as they\u2019d just described.<\/p>\n

But for those of us who are chronically ill, time is enfolded in loss. \u00a0Incremental accumulation of imperceptibly small changes add up to perceptible disability, but often we miss that anything has changed when we\u2019re in the thick of it.\u00a0 We just bravely endure. \u00a0Chronic illness, including years of caregiving for a family member with it, can cause a rational person to simply ignore their well-being and sense of options.\u00a0 For these situations, I follow-up: \u201cHow would you like<\/u> to spend your time?\u00a0 Is there anything you used to do, or want to learn or try, that you can\u2019t do because of your symptoms?\u201d\u00a0 Asking about time use is a potent charge.\u00a0 Some people have lived for so long with so little choice that contemplating this question is painful.\u00a0 When using the question, I\u2019ve learned to genuflect to its profound implications.\u00a0 I want it to be productive, not terrifying.<\/p>\n

The codified realities hidden within time use are especially dramatic for people with addiction.\u00a0 Since the brain becomes dependent on the chemical(s) in question, subconscious valuations of how one spends one\u2019s time are always biased in favor of using.\u00a0 As addiction progresses, it shapes more and more of the places, routines, relationships, and certainly time expenditures that a person chooses.\u00a0 Patterns of daily life become glued in place by the sureness of access to the drug; disrupt either the access or the pattern, and a certain amount of chaos ensues.<\/p>\n

One approach in addiction treatment is to rebuild patterns of occupation around non-using.\u00a0 The Odyssey House Rehabilitation Center in New York City uses marathon training as a rehabilitation technique because it replaces using with another activity involving hours of daily practice, health monitoring, incremental progress toward a goal, and euphoria following hard work.\u00a0 It\u2019s a brilliant choice for those whose bodies are able to tolerate it; it reengineers daily routines around something health-promoting and dopamine-boosting.\u00a0 It uses occupation as the means (the therapeutic modality or activity) and the end (a healthy routine that doesn\u2019t involve using, buttressed with personal accomplishment and a new way to feel pleasure).<\/p>\n

L.L. (pseudonym)<\/p>\n

On the general medicine service of an urban hospital, I received a referral for a man in his early 50\u2019s admitted with a cluster of things that go wrong when you neglect to eat, drink, and void promptly.\u00a0 His history and physical note documented hypokalemia, hypoglycemia, an acute kidney injury, and altered mental status; toxicology results were positive for cocaine and heroin intoxication.\u00a0 He was documented as homeless, having told some staff he stayed with this sister, others that he lived with a roommate, and still others that he was \u201clooking for a place\u201d\u2026 all of which may have shared some percentage of the whole truth.\u00a0 He\u2019d been found in the street, soiled and unresponsive, with decreasing respiration and heart rates.\u00a0 He was intubated on the ride to the hospital, stayed in the ICU for a few days and treated with medications that eased his withdrawal symptoms.\u00a0 He had been at the hospital for nearly a week.\u00a0 His labs appeared to have nearly reached normal parameters, with the exception of blood glucose which kept reading too high, in the mid 200\u2019s.\u00a0 The MD\u2019s referral for OT and PT stated \u201cweakness\u201d and \u201cdecreased ADL independence.\u201d\u00a0 And I read the H&P once more, then read the H&P from his previous two admissions.\u00a0 Documentation on patients who come back often sometimes misses change over time, as staff begin to take only a cursory \u201cthis-guy-again\u201d attitude.<\/p>\n

When I entered, he was in the bed nearest the door in a dim double-occupancy room crowded with the other patient\u2019s visitors.\u00a0 His curtain was drawn around his bed, letting little light through.\u00a0 His brown complexion was ashen with anemia and dead skin, his finger nails long and cracked.\u00a0 He wasn\u2019t obviously weeping, but his eyes were wet as if floating in goo, held back by weary squints.\u00a0 He lay fidgeting and remote. \u00a0The IV pump beeped and his TV aired something about motorcycles to no one in particular.\u00a0 He had no visitors.\u00a0 He looked uncertain.<\/p>\n

After introductions and verifying I had the right person, I told him OT had been ordered \u201cto help you recover from this hospital stay and get back to living your life.\u201d\u00a0 He wheezed and chuckled.<\/p>\n

\u201cI don\u2019t think that\u2019s what you want.\u201d\u00a0 His consonants were soft for want of a few teeth, his voice thin.<\/p>\n

After a pause I clarified: \u201cWe want you to be well, and strong so you can live as you want to.\u201d<\/p>\n

What OT really does to achieve this is so elemental it can be invisible.\u00a0 Our interventions pursue breakdowns in every parameter of Doing.\u00a0 Like molecules of air, they move into the space between us and our works, deeds, friends, meals, outings, housework, hygiene, pleasure, success – and exchange within us, a give-and-take of our course through the day.\u00a0 Its difficult to describe; we can\u2019t even settle on an all-encompassing description, because there isn\u2019t an all-encompassing approach for all people.\u00a0 The goal is always a full life.\u00a0 Concrete examples risk over-simplification and losing a person\u2019s interest, but concrete is best for an introduction.\u00a0 This is first-date-level complexity.\u00a0 So I offer:<\/p>\n

\u201cYour doctors mentioned that you\u2019re having trouble caring for yourself, like eating regular meals and cleaning up, and that you\u2019re experiencing weakness in your muscles.\u201d\u00a0 (Notice I avoided the phrase \u201ctaking showers\u201d, because poor hygiene carries stigmas of incompetence and dereliction; similarly \u201cyou\u2019re weak\u201d colloquially describes willpower as well as muscle strength.)<\/p>\n

I go on, moving about the room to ready it for his movement: \u201cPT came in earlier to test your strength and stamina, and I\u2019ll look at that too.\u00a0 Mostly, I\u2019m here to see if your illness is making it harder for you to do your daily routines, and teach you new ways of doing things if you\u2019d like to try.\u00a0 Might mean setting up your space or planning your day a little differently, trying a new way to get dressed, learning short cuts, or setting up reminders for yourself.\u00a0 I\u2019ll work with PT, your doctors, and you, to recommend a good next step in your recovery.\u201d<\/p>\n

\u201cRehab?\u201d He asks.<\/p>\n

\u201cCould be rehab, certainly.\u201d I said, without thinking.\u00a0 Physical Rehab professionals tend to forget that \u201crehab\u201d has two meanings to certain people.<\/p>\n

To ground our visit in simplicity, I ask \u201cIs there anything you\u2019d like to do to get ready for the day?\u00a0 Did you have a chance to brush your teeth?\u201d\u00a0 Stupid question, asked in automatic inattention as I fussed with the bed settings.<\/p>\n

\u201cDon\u2019t have any,\u201d he grinned, \u201cbut I do have to pee.\u201d<\/p>\n

Tremulously, but without help, he sat at the edge of the bed, took a hospital-issue cane off the bedrail, and bent his head.\u00a0 He stood, swayed; I put a hand on his back, then countered his sway like a dance partner when I felt him lean too far.<\/p>\n

\u201cMight need a hand\u201d he said.\u00a0 \u201cDon\u2019t have my feet yet.\u201d\u00a0 I placed a gait belt around his chest.<\/p>\n

\u201cI\u2019m right here with you.\u00a0 I won\u2019t lift you with this, it just gives me something to hold if you start to lose your balance.<\/p>\n

\u201c\u2018M OK.\u201d he girded.\u00a0 He reached the open bathroom door but passed it, heading into the hallway.<\/p>\n

\u201cWhere are you going?\u201d<\/p>\n

\u201cToilet.\u201d<\/p>\n

\u201cToilet\u2019s not out there,\u201d I said. \u201cDo you wear glasses?\u00a0 I\u2019m sorry, I forgot to ask.\u201d<\/p>\n

\u201cNo\u201d he said, and halted, swayed again, and looked ahead, indecisive.\u00a0 I noted his confusion when facing the every-day issue of navigating a new environment, then prompted \u201cLook behind yourself.\u00a0 It\u2019s in your room.\u201d<\/p>\n

He shuffled, fumbled with his cane, turned around, and stumbled over his own feet into the bathroom.\u00a0 He found the toilet and sat on it facing backward, leaning an elbow on the plumbing.<\/p>\n

This was quite unique.\u00a0 I wondered why, and for how long, he\u2019d used this position.\u00a0 Is it more comfortable?\u00a0 Does he fall off?\u00a0 Is he having trouble interacting with objects in his environment properly, is this new, and has he been using other objects oddly?\u00a0 How does he straddle the stool with pants around his knees or ankles?\u00a0 As he wiped, he got his hands dirty; I helped him clean up, changed my gloves, then watched him lean on the plumbing, scoot backwards off the toilet seat, and stand up in segmented fashion.<\/p>\n

\u201cThat\u2019s how I do it.\u201d\u00a0 He smiled toothlessly, perhaps noticing curiosity in my expression.\u00a0 His satisfaction was endearing despite the fact that in real life (absent a helper) there would now be poop on his bottom, his hands, the toilet seat, and pretty soon his pants.<\/p>\n

\u201cVery creative!\u201d I affirm.\u00a0 \u201cI have just one question: what do you do with your pants?\u201d<\/p>\n

\u201cDon\u2019 know.\u201d\u00a0 He shrugged, \u201cHain\u2019t seen my pants since I came in here.\u201d<\/p>\n

Perhaps he\u2019d misunderstood my tense, or didn\u2019t hear well.\u00a0 I added, \u201cWhen you sit on the toilet like that\u2026 like it\u2019s a motorcycle?\u00a0 Do you take your pants all the way off first?\u201d<\/p>\n

He mumbled \u201cI don\u2019t need\u2026\u201d something-something, then moved to leave the bathroom.\u00a0 I reminded him he\u2019d gotten his hands dirty, and he stopped at the sink for a very cursory rinse.\u00a0 I helped him scrub with soap and changed my gloves again as he leaned on the sink.<\/p>\n

\u201cI\u2019m tired\u201d he said.<\/p>\n

\u201cI bet you\u2019re tired.\u00a0 Its been a long week.\u201d\u00a0 I realized I shouldn\u2019t have said that; it gave clues.\u00a0 Curious to see if he\u2019d pick up on them, I asked anyhow: \u201cDo you remember how long you\u2019ve been here?\u201d<\/p>\n

\u201cAbout three days.\u201d<\/p>\n

\u201cDo you remember why you came?\u201d<\/p>\n

\u201cCouldn\u2019t walk\u2026\u201d<\/p>\n

A pause.<\/p>\n

\u201cHave the doctors told you what they treated you for?\u201d\u00a0 I asked.<\/p>\n

\u201cNah\u201d he said.\u00a0 Then abruptly he tacked and quietly said: \u201cToo many drugs.\u201d<\/p>\n

\u201cYeah, that\u2019s my understanding.\u201d\u00a0 I said conversationally, trying not to betray a sudden sense that I had no idea what to do next.\u00a0 Addicts don\u2019t generally tell strangers they use too many drugs.\u00a0 Then again, they generally don\u2019t have strangers watch them poop.<\/p>\n

I decided to proceed with compassion.\u00a0 Tenderly, and with explicit disclosure of curiosity, I asked more questions as I steadied him back to his bed.\u00a0 I asked if he had trouble getting on and off the toilet, and whether he had help to clean himself up, shower, cook, dress, or drive.\u00a0 His replies were not always detailed, but always practical.\u00a0 His sister had been helping him but became frustrated and stopped.\u00a0 His awareness of need for assistance was incomplete, but he also had some insight into his limitations, such as insisting he never tried to drive because he felt he would pass out and get in a wreck.\u00a0 (Only when I asked did he admit he\u2019d lost his license years ago).\u00a0 As for those pants, he said he rarely dressed his lower body any more, or wore oversized sweat pants, because his only viable veins (that he could see) were in his legs.\u00a0 He had devised the backwards toilet approach while attempting to go through withdrawal at home.\u00a0 He could move from puking to defecating without turning, which avoided stimulation to the vestibular and visual integrating pathways that they couldn\u2019t reconcile, causing him to fall.<\/p>\n

\u201cYou\u2019re very creative.\u201d I said again.\u00a0 \u201cAnd, correct me if I misunderstood you, but it sounds like you\u2019d like to get sober?\u201d<\/p>\n

With crystalline earnestness and vulnerability, he said \u201cYes, I try.\u00a0 I try.\u201d<\/p>\n

A picture had emerged of how time feels for this man, of the course of his days and nights.\u00a0 Time was a thing to endure, a ransom paid before the brief absorption of it into the briefest euphoria\u2026 and now, a thing to run from, because if he sensed time it was because he was coming down, and that meant he needed to use again as soon as possible.\u00a0 It was not an asset.\u00a0 All his brain\u2019s resources, attention, intention, and action were plied toward satisfying addiction; so, then, was all this time.\u00a0 For his addicted brain, everything in his life was organized and executed to protect and maintain access to substances.<\/p>\n

But there before me, as well, was a person with a living soul.\u00a0 A person needing love, with a point of view, with values.\u00a0 What would occupy his days, if not this?\u00a0 Here in the hospital I can\u2019t deliver many opportunities for this process of discovery, but I can ask:<\/p>\n

\u201cSo, here\u2019s a question: What would you do with your time if you didn\u2019t feel you needed to use?\u201d<\/p>\n

The air left the room.\u00a0 He was suddenly still, looking at the wall, his wet eyes wetting more.\u00a0 It seemed as he sat motionless at the edge of the bed, he was at the edge of a chasm, yearning for something out of reach in mid-air.\u00a0 Finally he smiled and shook his head. \u201cI don\u2019t know.\u201d\u00a0 He shook his head again, as if in disbelief.\u00a0 After another moment of quiet, he said \u201cMa\u2019am, you just did me hard.\u201d\u00a0 He looked down at his yellow slipper socks, swaying unevenly, breathing unevenly, and fidgeting.\u00a0 Two drops fell on his gown.\u00a0 I reached a tissue from his table.\u00a0 I sat next to him in quiet.\u00a0 After a minute he said \u201cI can\u2019t talk no more about that right now.\u201d<\/p>\n

Although we proceeded for a few more minutes talking about his concerns with his balance and hygiene, getting Medicaid, and ADA transit options, it was clear my time with him had already ended.\u00a0 I suggested that, because his balance was such a challenge and he was having a hard time with spatial problem solving, a stay at a rehabilitation center for more therapy before going home was advisable (with the caveat that we\u2019d have to find one with a Medicaid bed available).\u00a0 He was agreeable, though lukewarm.\u00a0 A glimmer of interest came into his eyes when I mentioned he could go to the public library in the future for some programs and support, but even as he said \u201cI like to read\u2026\u201d it faded.\u00a0 Ever so gently I said \u201creading could be one thing to fill your time, and its free at the library.\u201d\u00a0 He nodded.\u00a0 But he wasn\u2019t really there with me.<\/p>\n

I\u2019d felt a rush from the confidence he\u2019d placed in me (and was in danger of seeing myself as totally critical to his recovery, of seeing him as needing me desperately), then a crash when I knew I\u2019d pushed too far.\u00a0 I got him settled in bed, then started entering some of my assessment on the room computer.\u00a0 After a few minutes I start my closing:<\/p>\n

\u201cWe talked about a lot today.\u00a0 What would you like to focus on, so I can plan ahead in case I see you again before you leave?\u00a0 I can also let the rehabilitation facility know.\u201d<\/p>\n

\u201cGo to the library\u201d he said without hesitation; \u201cNot fall.\u201d\u00a0 Then, \u201cGet clean.\u201d<\/p>\n

\u201cOk, that\u2019s quite a to-do list.\u00a0 How about we look at your balance some more, try different ways to get dressed and cleaned up that feel safer to you, and learn about some community options.\u00a0 Can I tell the social worker here you\u2019d like to be referred to an addiction specialist?\u201d<\/p>\n

A dark cloud gathered.\u00a0 His expression fought with itself.\u00a0 He looked nervous.<\/p>\n

I continued \u201cI can just ask them to talk to you about your options.\u00a0 You can take or leave what ever you\u2019d like.\u00a0 Its really just a starting point.\u201d\u00a0 A pause.\u00a0 \u201cIn the mean time, lets you and I work on the other parts of the plan.\u201d<\/p>\n

\u201cOK\u201d he sighed.\u00a0 I thanked him for working with me, asked if he needed anything, placed his phone and call light at his hand, unmuted the TV, and wiped off my equipment.\u00a0 I left him gazing at the wall, listening to his neighbor\u2019s visitors, and not watching his TV.<\/p>\n

Back at the nurse\u2019s station I called the resident on his team and told him L. had expressed interest in pursuing rehab for substance dependence.\u00a0 \u201cOh, wow,\u201d he said. \u201cUmm, OK.\u00a0 I\u2019ll talk to social work.\u00a0 How did that come up?\u00a0 I mean, he\u2019s a little stand-offish with us.\u201d<\/p>\n

I told him my observations of toilet hygiene and dressing, and that this led to him revealing he\u2019d tried to get clean on his own.<\/p>\n

\u201cI know about that, yeah\u201d said the resident, \u201cbut he never wants to talk about rehab.\u201d<\/p>\n

\u201cI just\u2026 asked him how he wants to spend his time.\u201d I said.\u00a0 \u201cHe was distant afterwards, but still insightful.\u00a0 It sort of went from there.\u00a0 I mean, it seems like he\u2019s open to the idea but still struggling with it, so, you know, maybe don\u2019t run in thinking he\u2019s super excited about it.\u00a0 But he did say he wants to get clean, and agreed to go to a SNF for rehab for his balance and cognition.\u201d<\/p>\n

I didn\u2019t work for a few days after that, and when I did, he\u2019d been discharged.\u00a0 As I rounded on the service that morning I asked the social worker if he\u2019d found any options for L.L.<\/p>\n

\u201cI didn\u2019t.\u201d he said. \u201cThere\u2019s not really anything for him, with no insurance.\u00a0 All the addiction specialists and D&A rehab centers are private pay.\u201d<\/p>\n

\u201cWere you able to get Medicaid started for him?\u00a0 That might at least cover some transportation, like to a peer support group.\u201d<\/p>\n

\u201cHe declined.\u00a0 He said he didn\u2019t want it if it wouldn\u2019t cover treatment.\u201d<\/p>\n

\u201cHmm, ok.\u00a0 Well, we recommended SNF for balance and cognitive impairments, did he at least get there?\u201d<\/p>\n

\u201cNo, he declined.\u00a0 They won\u2019t take him without insurance anyhow.\u00a0 We gave him a cab voucher, he said he was going to his sister\u2019s house.\u201d<\/p>\n

\u201cHow did he get into the cab??\u201d I gaped, incredulous.\u00a0 \u201cDid he get a cane from PT at least?\u201d<\/p>\n

He was pressed for time and didn\u2019t have answers, as he too had been off the day before.<\/p>\n

I felt like we\u2019d lost him.\u00a0 He\u2019d gotten past the mountainous barrier of withdrawal and readiness to seek help, only to be shut out by systematic chasms between mental health crises and treatments.\u00a0 Here was a man willing (albeit delicately) to build a whole new life, a whole new use of his remaining precious time, from the dust of his last OD.\u00a0 And here was a system that was somehow content to spend a week\u2019s worth of hospital resources (unreimbursed because he didn\u2019t carry insurance) to get him \u201cmedically stable\u201d, then show him the door without any thought for whether we\u2019d treated his disease.\u00a0 All the dots were there, and we couldn\u2019t connect them.<\/p>\n

I don’t know what happened to L. after that, and I never got a chance to ask him more.\u00a0 What ever he was doing with his time now, it wasn’t coming to the hospital.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Kristen Kehl-Floberg, BFA, MSOT, OTR\/L School of Medicine and Public Health, Wisconsin Alzheimer’s Institute 2019 Essay with case study   \u201cAll we have to decide is what to do with the time that is given to us.\u201d -J.R.R. Tolkien   A person\u2019s use of time is a code for meaning and ability.\u00a0 It isn\u2019t the… <\/p>\n

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