Disconnect (a very short play about suspicious country folk)

I had a referral from a Viking doctor to see a 94 year-old Holden lady for a swallowing assessment. I called. Her son answered (he's in his 70's?). It went something like this:

Me: I have a referral to do a swallowing assessment with Mildred. Are you a relative?

Son: Yeah. I’m her son.

Me: The doctor asked me to do this assessment.

Son: Yeah?

Me: Is your mom there?

Son: Yeah.

Me: Can I speak to her?


[pause, I listened to him breathe in and out three times]

Son: MOM! PHONE!

Mildred: (old lady voice in the background) I’m on the toilet. I'm taking a craaaaaap!

[another pause, more breathing]

Me: So, can she come to the health unit for an appointment?

Son: It’s OK. She doesn’t need an appointment.  CLICK.

[dial tone]

-----

Supported communication

Supported communication is a method of helping a person with aphasia better understand what they here and have a chance at expressing what they want. (Aphasia is a loss of ability to understand and/or express oneself because of damage to the language centers of the the brain.)

One way we can support someone with aphasia is by writing keywords for them to read as they listen to us talk. Sometimes if you can see what you hear (the important bits anyway) you can understand better. I've experienced this watching French movies with French subtitles. I can't understand by listening alone, but if I can read and listen, my comprehension soars.

I was explaining this to Barb the other day. Her husband, 51, had a doozy of a stroke last month and now has trouble with talking and listening. He'll ramble on endlessly in a somewhat non-nonsensical way without knowing what he is saying does not make sense. He can't hear himself so he can't fix it.

As an interesting aside, this man has damage to the part of brain that coordinates  body movement (cerebellum). Only he has no motor difficulties. His hands, arms, legs all work fine. I'm starting to appreciate how much the cerebellum does to help us coordinate our thinking and language through sub-conscious self-monitoring.

The example I used to explain supported communication to Barb was telling someone about how their CAT had to go to the VET because it was SICK. Writing those keywords can help them focus on what you are saying. Then I went on with a spontaneous story about how the cat was too sick to save without expensive treatment and had to be put to sleep. I'm not sure why that story came at that time.

15 minutes later, Barb came to my office to tell me she was freaking out because her husband's dog got sick two days before and had to go to the vet. Just like my fictional cat, the dog (Trinity) was too sick to be kept alive without suffering so she was put to sleep.

Barb and I paused for a moment wondering how I came up with that story at that time and then she told me how she was so afraid to tell her husband, poor man stuck in the hospital recovering from a stroke, that his dog had died without him. She didn't know how he would react and was caught between wanting to spare him the news and thinking that he would want to know.

I went with her to tell her husband the bad news. I was supporting her communication with my presence I suppose. He had no trouble understanding everything she said, speaking volumes about the hidden layers of communication that we share without words. She told him the sad news, he responded calmly and ended up soothing her because the telling upset her so much. And it was all accomplished with touch, eye contact, and the look of a saint on his face.

There's so much more than just words when we allow ourselves to connect to each other, when we see through the illusion of isolation. Even through the distance of time and space as in a novel, words are just the surface of something much deeper.

"we are so, so much more than this physical body and mind, so much more than the limited perceptions of our senses, that we are something much greater than the separate isolated, vulnerable being that we deem ourselves to be." - Rev. Alicia, Field of Merit Blog. 

-----

The language of the body

What a voice can do (bonus Canada Day content)

Every so often a client will come to me with voice problems: dysphonia (aphonia means no voice). In grad school, I learned the anatomy and physiology of voice. There are some fascinating muscles, bones, and cartilage that allow us to have a voice. Put your hands on your neck and swallow. Do you feel something hard and smooth moving up and then down. That is the thyroid cartilage. It is a cup with the bottom missing. Some liken it to a shield. Inside this cup, across the middle of it, are two intricate flaps of muscles called the vocal folds. They are attached to the front of the cup and then to little swiveling cartilage-bones at the back. When they are relaxed they are an open V. Air flows through them to and from your lungs with ease. When they tighten, they come together (make a peace sign with your fingers and then close them up) and when air passes, they vibrate and make your voice.

This whole apparatus is called the larynx. It floats in a sling of muscles. At the bottom it attaches to your windpipe and at the top it attaches to a little horseshoe bone called the hyoid bone. This bone then attaches with muscles under your chin.

Swallow again. Feel your larynx move up and down. It also moves forward a bit. Say "ahhhh." Feel it vibrate. When things work well, there is an amazing coordination of events going on. Read the last sentence out loud. Notice how the voice is mostly on, but turns off for the /st/ in last, the /s/ sounds in sentence, and so on. It's all automatic. Not a conscious thought in sight. The accuracy of the timing is as fine as a string quartet. Add the complexity of language processing and it's as multi-layered as an orchestra.

Yesterday I saw a young woman with aphonia. It started with a bad cough in January and now she has blisters and callouses on her vocal folds because she's been coughing so violently for so long. When she coughs, she bends her head back and her whole body contracts and then after a long pause, explodes upwards. She's broken her ribs from the violence of it. She also clears her throat constantly and she loves to talk. She has no voice left so she needs to whisper very loudly. This is called a stage whisper and it really hurts the vocal folds. So does habitual throat clearing.

Once we sorted out all the physical stuff, I asked her about her stress.

I'm getting married in 5 weeks, she said, but I'm not really stressed.

I pause. I am skeptical about her claim of being stress-free, but I can't tell her how she feels (or should feel). This is exactly where my S-LP training falls short. What do we learn about counseling? Can I talk about how we lose touch with our body as we age so that we no longer recognize its language? Her body--her voice--is clearly telling her that she is stressed pretty much to the max (she can only sleep 4-6 hours a night), but she doesn't understand what it's saying. It's as if her physical body is a separate thing, like a car, and it needs to be fixed so she can get on with her life.

In the end I gave her some things to think about:
- voice rest: stop talking for 2-4 weeks, let those physical wounds heal
- find something else to do when you want to clear your throat, like swallowing forcefully or sipping water
- when you must speak, use the quietest whisper you can, get close so people can hear
- eat well and move (yoga would be great)
- read up on stress management (maybe she will make the connection and say "this IS me.")

When we meet next time, I'm going to ask her what she thinks she should do. We all need to learn that we have more power over our health than we think. But to do this we need to understand the language of our bodies.

-----

God loves a drunk

William lived through the horror of residential school. He was stolen from his family and culture at the age of 6, he was beat for his language, his best friend was killed after a priest shoved him down a flight of stairs, he never got any presents at Christmas, and he was starved just because. His stroke took out much of his right hemisphere (especially the frontal lobe) so he has little motivation to work on rehab. He's willing to talk about his past, but mostly he just wants to go home where he can sit and wait for his end. He'll be sent to long term care next week. A circular, sad bookend to his life.

Frank never fit in. He finished school, but he didn't learn to read. He never married and he moved through progressively lower paying jobs until he was homeless and jobless. He's delivered your mail, driven your bus, built your fence, filled up your car with gas, and mowed your lawn. His family have control of his government money so he doesn't spend it all on booze. He had his stroke on the left side of his brain, so he has trouble walking, talking, and doing anything with is right hand. He managed to tell me the hardest thing about his stroke was going through the DTs.

Then there's Paul. I don't know much about him except he's been referred to as the town drunk. "I don't know how he survived all these years." "He's just a bum." "I seen him around for the longest time. Isn't he dead yet?" He did have a stroke, but that's the least of his troubles. There is a tumour growing along the back of his throat. I first saw it last autumn when we were doing an x-ray of his swallow; a gentle bump starting at the voice box level and moving up to where the soft palate meets the nasal passages. Now it's threatening to close everything off. He'll get a tube in his stomach first and it won't be long before he needs another in his trachea. He doesn't drink any more. Can't. Weighs 80 lbs.

These men range from 58 to 62, but their creased faces and ruined bodies look like they've lived to a ripe age of 80. They almost seem glad to be done with it all. Gentle conversation partners, they are grateful for the smallest kindness. Somebody finally cares about them. Food, cleaning, shaving, dressing, pain, it's all looked after. It ain't real love, but after a lifetime being excluded and scorned maybe it's close enough.

---


Watch Richard Thompson - God Loves A Drunk in Music | View More Free Videos Online at Veoh.com

-----

The second arrow

Ripples in the pond, Spring 2002

When Jane talks, an unruly gang of muscles on the right side of her lips pulls and twists her mouth into a quirky grimace. She says she can’t swallow anymore. The swallowing I attribute to the various medications she takes (her pills cause dry mouth, dry mouth causes swallowing trouble), but the spasms have no identifiable source and only happen when she talks. She spent a good chunk of her assessment in tears describing all the tests she's done and all the doctors she's seen.

Charlie doesn’t want to eat. During our assessment, he took some food only because I asked him. He smelled it, tasted it with the tip of his tongue, and finally took the tiniest of tiny bites. Once the food was in his mouth, he swallowed with good timing and there was no tell-tale gurgle of residue in his throat. He said food hardly goes down and it always feels stuck. He’s dropped from 180 lbs. to a little over 90 in the past year.

Both of these clients have been through every diagnostic exam available. CTs MRIs ECTs neurological assessments, the works. As far as our medical technology and knowledge can determine, nothing is wrong. Physically.

Charlie won’t talk about it. He looks, talks, and acts depressed, but he refuses any kind of psych consult. He may just die. Jane can’t stop talking. She is young and physically strong. She loves to talk and is desperate to be better. She says she would even try electro-shock therapy if anyone would offer it to her.

What do I do with clients like this? I listen. I accept. I try to be a witness to their pain. I would like to talk about the second arrow story, but they are looking for medical answers not spiritual parables. They want me (and everyone else in the medical profession) to fix them as if the suffering they are going through comes strictly from some mysterious outside force (disease is most often perceived as an invader from outside our body's borders and not an example of us hurting ourselves) .

The second arrow story:

A hunter is stalking a beautiful stag with his best friend. They are taking parallel paths through a dense patch of forest and can no longer see each other. The hunter steps past a 100 year old spruce and sees 10-pointer directly ahead of him. His stag is munching grass at the edge of a meadow. Sunlight strikes it with a golden, misty haze and the wind is moving toward the hunter. Perfect. He raises his bow with glacial slowness, draws, and CRACK! A burning pain sears the hunter's shoulder and his cry of surprise sends the stag leaping away in an ever-ready bounce.

The pain is intense. The hunter looks over his shoulder and sees a yellow-shafted arrow sticking out. He tries to run from it. Instinctively. But the arrow shaft catches on the branches and twists sharply. He wrenches and rolls to the ground. The pain is like a piercing alarm that vibrates all the way to his toes. He knows what has happened now. He’s been shot and there is an arrow in his shoulder. To lie still would be wise, but the pain clouds his thinking. He reaches over and tries to pull the arrow from his flesh, but the corner of the arrowhead catches on a bone and will not retreat. His friend is there now with concern on his face, but the hunter is blind to him, focused only on the arrow. Then he is angry because he knows it was his friend who let the arrow fly. He rages. His friend recoils and decides it’s best to go for help so he turns to leave. The hunter, still affected by his mid-brain emotions to survive reaches for his bow, the buck’s arrow rests beside it. He finds the strength to sit up and draw on his friend who digs through his backpack for a cell phone. The hunter is insane with pain and fear. His friend stands to face him, looking at the phone's reception icon. Under the control of his primitive self, the hunter impales his attacker with his arrow. His friend drops instantly as the diamond sharp arrow passes though his chest and lacerates his heart. He dies as his blood soaks into the earth, eyes peering up into the cloudy sky. The second arrow.

The hunter drops to his hands and knees. He breathes. His panting calms and drops to a normal rate and his mind clears and the pain recedes a little. He thinks about what he has done. He has just killed his best friend. The hunter is still alive and he has committed murder. This thought fills him with dread. He could lose everything. His house, his car, his business, his new Diavel parked in the garage. What will his wife think? His business partners? His children? A blackness fills his vision and he feels like he is falling. The third arrow.

He opens his eyes. I will tell the police that it was self-defense, he says. My friend and I were arguing about the money he owed me (this is not a lie) and he tried to kill me and make it look like an accident and he thinks about that woman who accidentally killed her fist-talking husband with a hunting rifle and they couldn’t prove her guilt and she didn’t go to jail. The fourth arrow.

The hunter lived the rest of his life shooting arrows into himself until he resembled poor St. Sebastian; his body a wild target filled with wounds and infection. But St. Sebastian was saved in the end. His arrows were removed and his wounds were healed. This too may have happened to the hunter in the minutes before he died from the massive stroke that blocked the blood to his brain and allowed his heart cease its grieving. Perhaps he saw the true cause of his suffering.

-----

Insight and strength

It's like this, March 2011

Mary had a stroke in January. I met her in February when she was still quite sick and now we're working together in the rehab hospital. She will never be the way she was before.

There are three main cerebral arteries on each side of our brains, creatively named anterior, middle, and posterior. Mary had blockage in the anterior and middle and this starved much of the left side of her brain of oxygen. We can't really tell where the clots came from, but likely her heart, which isn't working well, sent the blood boogers up to do the damage.

The left side of the brain is where most of us have our communication centers. Our ideas and memories combine in the front: "I want to say something." Another area, further back, contains the structural rules of our language: words and grammar. Once the message is assembled, it is sent to the motor areas that control our speaking muscles. The message is programmed (maybe like computer programming) and is sent out to the muscles which are monitored by another area to make sure everything is coordinated. At the same time another part of our brain listens to what we are saying, making sure it all makes sense. Somehow this all works together, at lightning speed, and we talk to each other (or read and write).

That's how the bits and pieces work, but what is it like to have a aphasia (loss of language due to brain injury)? I always ask my clients and most of them can express something of what it's like. The words may not be so good, but you can see in their eyes, their tone of speech, and their gestures what it's really like.

Mary describes it this way:

"Like this." She holds up her index finger and thumb and makes me look at the space between them.

"Like that," she says, "gone. GONE!"

I know what she's talking about. She's referring to the connection we share when we communicate (talk, read, write). This connection is language and without it we are mostly cut off. It may only be an inch, but it might as well be a mile. Rehabilitation helps, as does time, but very often that gap is never fully repaired.

Stroke prevention is a complex story, much like life, but here's a keen fact: 80-90% of all strokes are preventable. That is, if we have the insight to see the harm we are doing to ourselves and then the strength to change, we can avoid having a stroke. Learn more here.

-----

Your stuttering is a roadmap

The wear and tear of everyday life, May 2010

There's a concept in speech-language pathology that the way a person stutters is a map of all the tricks he (or she) has tried to avoid getting stuck in their speech. Imagine a child who suddenly finds that what he wants to say will not come out. He's stuck. So he pushes against the block and if the word comes out, then the "push" is reinforced as a way to get unstuck. A push can take many forms: part word repetitions, whole word reps, prolongations of sounds, eye blinks, adding new words, changing words, head bobs, ... you name it. All the things a person does to avoid getting stuck become the stutter that we all see. (I've been on both sides of the stuttering fence as a client and now as a clinician.)

I saw a new one recently. My client, when stuck, would inhale and try to push the word out, but the word didn't come so he inhaled again and again and again until he was so ready to burst that the word shot out like an orange in a tailpipe. His pitch was high, his volume was high, and I suspect his blood pressure was high. But the trick worked and the word came out.

This client also had a hoarse voice. At first I thought it was just a coincidence that he had two communication disorders and that I'd deal with the voice problem after working on the stuttering. The thing is, now that his stuttering is under control (8 weeks and he's gone from 15% syllables stuttered to less than 1%) his voice is no longer hoarse. I think his stutter was so severe that it was damaging his vocal folds. That's how hard he was trying to get past his blocks!

I love my job.


-----

Failing empires

Accepting what is, July 2010

Joy hates me. I can tell by the evil stink-eye she gives me when I walk by her and the other patients smoking under the NO SMOKING sign at the entrance of the hospital. She had a massive stroke on the left side of her brain and likely has some brain damage that decreases her ability to suppress noxious emotions. This is the little voice in our heads that keep us from telling the loudmouth repair man that he has an stupid haircut and his breath smells like regurgitated herring. The pickled kind.

It's also possible that she is scared out of her wits and anger is her fight or flight way of dealing with it. In any case, Joy has me struggling tonight. I decided to try the tough guy routine today and confront her anger with some Bruce Willis. She has a profound aphasia with some automatic speech and it seems like she understands me (she won't let me test her, but she responds appropriately to most of what I say to her). Her reaction to my clinical schtick was to tell me to f**k off (swearing is often the only thing that works well with aphasia) and then she rolled her wheelchair towards me in a threatening manner. I stared her down and was glad that I chose her paralyzed side to sit on so she couldn't reach out and smack me. I told her how awesome her speech was when she told me to f**k off and maybe we could do some therapy to help her say more things ... nicer things. She backed off with the wheelchair, but she didn't fall for my cheap praise. I won the pissing contest, but I lost any chance for us to find a way to work together.

She asked me to leave with a sweeping gesture towards the door. I told her I wasn't going to because she was in MY hospital and I had a job to do. If she was at home then she could tell me leave. I made a point of staying in her room and looking at her photo album as if I was enjoying a pleasant visit with an unwell aunt. I was really telling her I didn't care about her and her wishes. I was treating her like a prisoner and not a patient. I was telling her I was there to help with my words, but my actions were those of a bully telling her she has not only lost her speech, language, arm, and leg, but she has also lost the right to be respected as a person. She doesn't want therapy -- even if she needs it terribly -- and I can't bully her into working with me. What am I going to do? Show her pictures of food and withhold her cigarettes until she points to them on command?

Dominance is not the way to effective therapy. Collaboration is. I should have to let her come to me and if she didn't ... well, it wasn't meant to happen.

As a professional health-care giver we want to help our clients. ALL of them must be cured. And if someone doesn't want our help, then we often believe we have to find a way to cajole, trick, or ... bully them into doing what we want them to do. The myth is that there is a therapy trick to make every client comply with our wishes.

After ten years of practice I think I finally understand (and accept) that I'm not going to help them all and it's not because I'm lacking skill or special goodness. I can only do what I can do. That doesn't mean I won't keep sharpening my clinical skills and making a sincere effort, I just won't push past the place where pushing won't help. "Never say never" is a cliché for failing empires.

-----

A life without corners

Corners behind, none ahead, March 2010

Wilbur was checked in to the rehab hospital this week. His home was a trailer on the Johnson's land. Working as a farm hand, he passed most of his days out from under a roof. Mr. Johnson said Wilbur was semi-retarded and that we weren't likely to get much out of him.

"Yer a little retarded, ain't you Wilbur?" Mr. Johnson chuckles in a friendly enough way.

"Yeah, I guess."

"Maybe a lot!" Mr. Johnson slaps his dirty jeans and laughs at his old joke. Wilbur looks at his paralyzed right arm. The hand is like an empty baseball mitt with fresh dog shit fingers.

"My hand is like mush," he says to no one in particular.

The nurse, uncomfortable with the r-word, moves ahead to her last question. "What church do you go to Wilbur?" Her voice is kind, but still has a tinge of fear because Wilbur is a scary man to look at. He's well over 6 feet tall and must weigh a good 300 lbs. That mushy hand must have helped the other one wrestle yearling steers before his brain stroked and stopped sending signals to the muscles. His head is like a caveman boulder. Its base is a red and poorly shaved tree-trunk topped with a silver-stubbled jawbone is as thick as a Clydesdale horse shoe and probably as strong. His eyes are small and lost behind murky, greased-up glasses. They're the old-fashioned kind of glasses that people wear when someone else buys them and doesn't want to spend a lot of money. It's hard to tell what Wilbur is looking at. He never looks up. Above his eyes are wild caterpillar eyebrows and oddly, a tiny dome of bald head, pale and white from living under a cap. His head is a distorted dinosaur egg with a distinct point on the top. It leads one to speculate on a traumatic birth that starved his brain of oxygen, killed his mother, and left him an orphan in the care of the Johnson's.

"I belong to a round church," Wilbur finally says after an uncomfortable delay. "That way the devil can't catch me in a corner."

I can picture pre-stroke Wilbur walking through a dusky pasture with bottomless shadows and a blazing purple sunset sky. He takes long, steady strides and knows instinctively where to step to avoid gopher holes and cowpies. The pasture is his. He's like a lonely bull fenced off from his herd. Even though he's alone, he feels at home here, completely free at the center of a landscape that curves around him in a perfect circle and tells him that he belongs. He stays here until the sun is gone and then he returns to the distant light of his trailer to sleep until the sun rises again.

---

Upsetting the ladies (edit)

There was one more fellow to see. Ralph. I thought it might be good for my student to see a patient with a combination of dementia and delirium. The latter is medically-caused (like having a uninary tract infection) and can be reversed. The former is a one-way road to retrogenesis. (Retrogenesis describes how people with a dementing disease like Alzheimer's gradually lose skills in the reverse order the gained them as a child. It's like aging backwards except the body stays old.)

I'd been trying to check his swallowing, but he'd been too sick to do much of anything for the last month or so. The door was closed to his room. I knocked. Maybe there was some bathing going on. The physio answered and called me in. She was working with a fellow in bed one. Ralph was sitting in a geri-chair by the window. A rare glimpse of winter sunlight was shining on him like a far-away spotlight. The light was still anemic but it was warm enough for some nude sun-bathing. His hairy white body, still fairly strong, was sprawled out on the chair with nothing to hide.

My stout-hearted student didn't flinch. She followed me in like an seasoned colleague and introduced herself to Ralph. She shook his hand. Awesome.

I crouched down beside nekkid Ralph as my student moved back to watch.

"Ralph," I said, "why are you all nekkid?" (My young boys have given me a new appreciation of the pronunciation: nekkid.)

"I was rolling hose," he said. I looked over at my student and cocked an eyebrow. She allowed a half-smile.

"Rolling hose?" I looked back at him. He wasn't looking at me.

"Yeah. Rolling hose. Hot work that is. There was a fire at the mountain and Sally wanted to go for a picnic so I had to go find ..."

Ralph stopped and stared into space as if he was waiting for the rest of his story to appear. He looked over at me. "Who are you now?"

"Ralph, I'm the speech therapist. Are you getting enough to drink?"

"I'm a little dry," he replied, "can you get me my cup?"

I did and he swallowed it down with a gurgle and a cough. So it goes for Ralph. Aspiration pneumonia is almost expected with dementia. Patients forget how to swallow and accidentally inhale their food and drink into their lungs.

Just then, a nurse came in and my student and I watched while she gently wrestled and tricked Ralph into putting on his hospital gown. I chatted with my student about Ralph's history of small strokes (the likely cause of his dementia) and how he used to be a firefighter.

"We can't have you going around with your clothes off Ralph," she said, "You'll upset the ladies."

Ralph was still staring in the empty space that used to hold his memory, his connection to now. When we all left, he was already trying to wriggle an arm out of his gown.

-----

Norbert's toenails

I watched Norbert edge his way out of bed. I’m not so good at transfers, but I thought I could at least help by getting him up to the edge of his bed. My occupational therapist partner would be there in a few minutes to help move him from the bed to the wheelchair.

He flipped off the malnourished hospital blanket with the back of his wrist, but the sheet snagged on his feet and stuck there as the sour, sweet smell of morning gas-passing escaped from under the covers. Norbert was much too old to be embarrassed. Many delusions like pretending our farts don’t stink have to be abandoned when you check in to acute care.

Realizing that he wasn’t down far enough in the bed, the guard rail with the bed control buttons was in the way, he propped himself up on his elbows. It was like he was lifting a cement sidewalk block into the back of a pickup. Once he had the leverage, he shifted his rear down the bed. His diaper had a plastic cover, but it still didn't slide easily along the rug burn sheets.

After three one-inch bum slides, he was far enough down. He took hold of the sheet and tried to yank it off his feet. Still snagged, he yanked and yanked until he was finally able to free his trapped feet and hoist himself to vertical on the edge of the bed.

“My arms are just cotton-pickin’ useless these days,” he said.

I only nodded. My eyes were simultaneously compelled and revolted by his newly revealed feet. Each toe was capped with a half-inch nail. They were yellow, the colour of nicotine stains on the Marlborough man's fingers, and they curved to dangerous points like mini daggers. They looked like they could shred those bleached white sheets, never mind harmlessly hook them. Images of freak show wannabes like the Californian grandmother with seven-inch toenails who likes the attention she gets when she takes a stroll in Compton (what kind of shoes could she possibly wear?) or the Indian in Poona who’s left hand is disfigured by four-foot long nails that twist and curl as if they were blackened branches on an irradiated apple tree.

But this was just Norbert Walker. He wasn’t trying to be famous. He was just trying to get out of bed so that he could be wheeled down to radiology for a video x-ray of his disordered swallowing. He was deaf as an antique telephone, but he had the voice of an auctioneer or an evangelical radio preacher. Powerful, chesty, and driven by a melodic intonation.

I got a good look at his pale pink head fuzzy with post-comb hair as I yelled in his ear. “Can you get to the wheelchair?”

“Well, I can get in alright, you see. But gettin’ out might be a whole ‘nother story.”

Then before I could do anything to help, he slid off the edge of the bed and swiveled into the chair. It was more of a fall than a transfer and I immediately regretted not waiting for help to move him. Luckily the chair’s brakes were on and he landed squarely on the seat,

“Can you still wear shoes?” I asked, wanting to keep the process moving so that nothing bad would have time to happen.

“Yes. Yes. I do believe I can.” He gestured with gnarled fingers to his jaunty deck shoes, stashed under a nearby chair.

Later when I was charting, I mentioned to the ward nurse that his toenails were pretty long.

“I know,” she said. “Dr. Mohamed, the podiatrist, is coming in two weeks.”

She looked at me filling in my part of the conversation and responded before I my wheels had a chance to turn. “Nurses don’t do nails.”

A call bell sounded before I had a chance to raise my eyebrows.

-----

Sarah

I watched Sarah in the exercise hall of the rehab unit. Not much wrong with her since her stroke. Walks fine. Talks well. Hands worked well enough to bake 8 dozen buns one morning in the rehab kitchen. Those buns were awesome. Sweetened with honey. The recipe was in her head and the golden buns were removed from the oven by scent and sense -- no timers around. As I watched her practice her stair climbing in the exercise hall I wasn't sure if maybe I shouldn't be. She was wearing purple leotards and a white T-shirt, both stretching over a pillow of maternal chubbiness like one of the rolling hills that surrounds Eldorado. I thought, "how many times are you going to see one of them without all the black." I had to look, but I felt some shame.

I assessed her last week. She had an infarct on the right side of her brain. Not too big obviously, but with her history of mid-torso weight gain, headaches, depression, and anxiety, I wonder how long it will take before the "big one" comes.

(Infarct: A hunk of blood-goo that travels as far as it can in one of the blood vessels to the brain and then it stops. Too large to go any farther. It blocks the artery and the brain tissue fed by that artery dies from a lack of circulation. Once it's dead, it won't grow back.)

What a lovely lady. Sarah. Old enough to be my big sister. Raised so differently from me, yet so similar: a desire to teach, love of music as an expression of the soul, spiritual goals driving decisions, on a quest for that elusive quietness of inner peace,...

The nuts and bolts of her stroke: mild left side weakness, some trouble naming pictures, slightly slower response time to questions in conversation, and a decreased pitch-range. She just couldn't hit the high notes and spoke in low tones. Too low for what I took to be her modal voice (more jargon for the voice your body is designed to make -- it's interesting how many people don't use this voice).

When Sarah sits on the couch in the lounge, she tucks one of her legs under her like a crane. Or a teenager. She's fills her time in the hospital knitting yellow baby booties and ignoring the ubiquitous chattering televisions. Not ignoring really. They held no interest to her. Just like I don't pay attention to the ticking clock on the mantle. I'm not ignoring it, I just don't notice it.

I didn't know what to do with her. Well I did, except the ideal voice rehab program I could do would require me to be at the hospital to carry it out. And she's being discharged. So elaborate hierarchy's of therapy would have had no use. Instead, I told my assistant to sing with her. Maybe if she simply used her voice in a challenging, but familiar way, it would help.

A week passed. Yesterday, I watched Sarah singing for my assistant and I. Other staff drifted in and we ended up having a concert. One song was about a mother's endless love for her son. Another one that is only sung at weddings, gentle and respectful, and full of love. They were folk songs that reminded me of a-capella hill music from Virginia. She didn't sing any hymns.

Her voice was back to normal. Full and rich, someone who sings like she breathes. She sings to her children, her grandchildren. In the evening before bed. At work in the kindergarten. When she was younger and it was her job to help in the kitchen, I'm sure she was part of an informal kitchen choir. Such a lovely voice. Airy, confident heights mixed easily with her alto midrange. Natural and room-filling.

And happy. People are naturally depressed, fearful, and exhausted for weeks after surviving a stroke. She complained how her thoughts were slow and effortful. I told her this was normal and that she would very likely continue to improve. Be almost normal. I didn't talk about how she should watch her diet and get some exercise to prevent "the big one." That's the physician's job and I didn't want to spoil the simple joy she brought to my day.

She'll be gone by the time I return to work at this particular hospital next week. I should have said goodbye, but she was busy chatting with visitors in the lounge. I feel so fortunate to have had a glimpse into her world. Turns out, all I had to do was ask!

In Sarah's culture, the elders dream that their children should grow up just like them. They are happy just the way they are and the thought that their children should do better than them does not exist. That's what I call contentment. Peace.

Here is a 30 minute video about Hutterites. It was shot in the 60's. I have a feeling not much has changed.

-----

Lost for words

Detail of sculpture, June 2009


Detail from Grand Hotel, May 2009

Larry grew up about 15 miles south of Maidstone. There was an alkali lake nearby, bleached white crust over sticky mud. He wasn't too interested in school. Finally quit around grade 9 and got to work trucking, farming, and eventually opened up his own autobody shop.

Once, he was out hunting with a buddy. In camp one night his pal gave him a book to read. Something to do. Larry squinted at it and handed it back. He could never make nothing out of books. Never even thought about them. His friend said, "you need glasses, you idiot." Larry waved him off, but his friend persisted and eventually hauled Larry, he was in his late 30's, to the optometrist in Lloyd. A couple weeks later, Larry picked up his glasses and a cowboy book. The book he read was one of 35 in a series. That winter he read all 35 books. "I didn't know people could read," he said.

-----

Looking at a tree

Looking tall, May 2009


Looking wide, May 2009


Looking close, May 2009


Looking closer, May 2009


Self + tree, May 2009

Change moves at different speeds, but it always moves. This post is dedicated to Gunnar who has left and Inez who stays behind. Both proceed with heart.

-----

Limitless nice

I was headed for Gunnar's room. I had heard that Gunnar's doctor made him NPO on Friday and ordered feeding through an NG tube. Nobody likes an NG tube. A nurse has to shove it into your nose with a dollop of lubricant to ease the way. The head of the tube has to weave it's way past the bumps and creases of the sensitive mucous membrane in your nasal cavity and over the back of your velum. And then you have to swallow hard as you try not to gag and the tube makes it's way (hopefully) to the upper esophageal sphincter, which hopefully is opened by your swallowing. How many times can you swallow in a row? Once the tube enters your esophagus, maybe after a few tries, it must make its way with gentle force down to your stomach. If you have a lousy tube, there'll be kinks and even though the tube is all the way down into your stomach, it will have to be pulled back up (imagine a slow retch) and then reinserted. Any nurse who can do this first try deserves a huge box of chocolates.

I was surprised by the NG news and wanted to pop in to see how Gunnar was doing. Three days earlier, we had done a swallow assessment and Gunnar was doing fine with regular liquids and puree food. He has ALS, a disease of deterioration. Things can only get worse with this disease, but usually the changes come slowly, like a gradual accumulation of snow in November. Not like a unexpected blizzard in October.

Inez was standing in the hall outside Gunnar's door. She took me by the elbow and we stood by the rolling cabinet next to Mr. Henderson's room. It holds masks, gloves and the sweat-inducing yellow paper gowns that cover your clothes and keep you from taking bacteria out of a super-bug contaminated room. My glasses always fog up when I have to dress up, but I don't complain. I'm glad Gunnar doesn't have to deal with an antibiotic-resistant infection on top of everything else.

"I wanted to talk to you before you went in to see Gunnar," she said.

Inez looks tired. Her hair has a flat spot on the back and her natural eyebrows are growing back around her tattooed arches. The tattoo is a gold-brown colour that makes he powdered face look pale. She always smells like Bodyshop grapefruit soap.

"What's the deal with the tube?" I ask.

Inez told me about Gunnar's sudden turn for the worse, about how ill he was, about how she had to leave the room when they put the NG tube in because he was so miserable about it, how she's at the hospital from 9 to 9 because he needs her so much, about how Gunnar doesn't want visitors because he doesn't want them to see him like this (I thought, but didn't say that he was going to get worse and that now might be a good time for visitors), she told me how she likes to take 15 minutes to slip outside to drink a coke and breathe some fresh air, then she told me how she went to the doctor for her blood pressure and the doctor told her that Gunnar wasn't going to leave the hospital alive.

And we paused. She wiped her eyes with a kleenex she pulled from her watch band. I gave her a hug and used all my concentration to stay under control. She probably heard the truth in my voice.

I was about to say something about respite care, but Inez started talking first.

"I got a call yesterday," she said. "This old customer of the car dealer I worked at called me up out of the blue. I barely knew him. I was just a bookkeeper. Anyway, he calls me up and says 'Inez, I heard about your troubles and I just wanted to tell you that if you need anything, anything at all, you just need to call me.'"

All I can say is, "There sure are a lot of nice people out there."

"Yes. The worse things get, the more I notice all that's good," she says.

"It seems limitless," I say, looking at my new Clark's, feeling the cushion under my toes.

Inez gives my hand a squeeze and goes downstairs for a coke. I stand in the corridor for a moment wondering what I should do next.

-----

Smithson, the cowboy

Smithson's room, January 2009

Smithson had a stroke that affected his ability to understand what he hears, including his own speech. He also took a hit in the frontal lobes, which seems to have decreased his inhibitions (he'll say whatever he wants, no filter). His memory for new information is shot and he has no sensation in his right hand (feels like it's not there, but it is in a disconnected kind of way). And when he reads, the words swim in a swirl of indecipherable hieroglyphics. He used to read cowboy novels, but will have to settle for watching TV now.

We were goofing around this week, exchanging wise-acre banter, and generally having a good laugh. His speech was fine. Almost normal. I was also checking his yes/no comprehension and he was doing his best to disrupt the proceedings. He got 20 out of 20 on the subtest. I wrote down the score and qualified it with the word (SMART-ASS). He got a kick out of this. Smithson and I understand each other.

When we were done with the formal testing, I asked him what his earliest memory was. Like most people over 70, he responded by saying "school, I guess."

Smithson gives up easily in therapy and needs a great deal of coaxing to continue. Most times he surprises himself with the level of success he can achieve with a little push. I got to wondering about his self-esteem. It's something I always checked into and did my best to build in the children I worked with. Why not think about it with an old fart like Smithson?

I asked him. "Were you bullied as a child?"

"I dunno. I suppose. I remember crying in the pump house. We used to hide in there." (The memories came back instantly. I saw it in his eyes.)

"Some of the kids were mean?"

"Sure. Someone was always picking on me. School was hard. But, there was a big kid, Jack, I think. He was like my mentor. Protected me. When he was around."

He didn't talk for a few minutes. Just stared at endless, snow-covered hay fields outside his room window.

Finally, he got up, looking at his watch. "I gotta go for lunch. We done with all this horse shit?" He waved at the papers balanced on my lap.

"Yup, horse manure all done," I said.

"Good. I wonder what kind of crappy chow they have at the lunch wagon today."

"Oh, it's good crap today. Fried chicken, mashed potatoes, and some kind of vegetable."

"That does sound good. I like the gravy."

We were walking in the hall at this point.

"Smithson, you did pretty good on the tests today."

"I did, didn't I?"

"Yup. Sure did."

"Yup. Sure as hell did."

-----

Story obscured

I met Angie yesterday. She's had a hemorrhagic left side stroke that has taken away the right side of her body and her words. Her admission history was nearly blank because she was unable to tell anyone who she was. We have a name, but no story. She has no children nor a spouse to help us fill in the blanks. She is a person without a story. All that remains, for now, is her new story.

Chapter one: Learning how to eat. Angie could lift a spoon when it was placed in her hand, but had a heck of a time hitting her mouth. She tended to miss and bounce the spoon off her right cheek. So, I helped her, fed her a half-teaspoon at a time, and she managed to eat a half plate of puree meat, veggies, and mash potatoes in 45 minutes. When she had enough, she put up her palm and smiled a half-smile of thanks. I wiped off her chin and thought briefly of my young boys and how I used to feed them the same way. Some days, I was so impatient with them, I rushed them, pressed them to be independent, to hurry and grow up. Now they feed themselves and I kind of miss those messy-face meals.


Missing bits, July 2008


Mystery wall, July 2008


The sky seems familiar, July 2008


A light sign on the wall, July 2008

Photos: So starts another series of small town photos. This time the town where I live.

-----

Apraxia of smile

Apraxia: the inability to make purposeful movements.

Often revealed when client can make movements without thinking. For example, Lionel is unable to pick up a teaspoon when I ask him too vs. watching him do it automatically when I present him with a cup of tea, some sugar, and a teaspoon (i.e., not asking him to do it).


By asking, October 2008


By tickle, August 2007

[Top photo: my youngest's first school picture -- my dear wife and I had a good laugh about it last night]

-----

An old metaphor

Uphill pilot, October 2008


Life's fading flames, October 2008

I set off for work in the silent dark and as the sun rose in the east, I left the highway and put myself into the sky. I saw my car rolling down an endless hill, gaining speed and catching up with the sun. Then I went back to the pavement and I felt beneath me the slow rotation of our eternal earth. Such a grand motion. I don't know why I've never felt it before, like the hidden workings of a vast clock lost for the counting of the hours.

So I chased the sun, the rotating planet propelling me forward, and by the time I reached my destination, a three-ward rehabilitation hospital nestled in the middle of a rolling prairie, I had it. The sun was mine. All around me, flooding into the windows and filling the wards and rooms with warmth, a chattering, busy joy.

Soon the day slipped by and it was time for my trip home. West this time, watching the sun move away from me as I raced along the same planetary arc. As much as I desired it, I couldn't catch the sun. I wanted it to stay with me until I was safe at home, but before I was half-way, it collided with the horizon and ignited the autumn sky. Neon pink smoke, orange fire eating away the vanishing point, and magenta-purple clouds descending to douse the flames and leave me in the dark.

It was black for the last 40 kilometers home. Stars hidden behind an invisible veil of cloud. A void of light except for the 50 feet in front of my now feeble-seeming headlights, cutting a hopelessly valiant path into the dark, like one match in a darkened stadium.

This was the same dark I started with. Empty except for my thoughts. Like a wake of words, I let them drift behind me as I slid across the land.

And I thought about Bill.

I met his son earlier in the day, squinting in the sun, and learned that Bill has been like this, the quiet type, for most of his life. Not much of a talker and not too inclined to have much get up and go. And I understood. He's no longer chasing sunsets (if he never did). He's done. He's settled down where he is and he's waiting for dark. But people like me keep coming around with hissing lanterns, prodding him from his bed and telling him he shouldn't be so depressed. He still has a lot of life to live and he should be up and enjoying it.

But this isn't what he needs. Not now. He's trying to do what he needs to do, for him. And us helpful people won't let him. Can't let him.

There's an old joke about a man in a nursing home. He keeps leaning over and someone always stops in passing to sit him back up. He leans to the right and a nurse props him up with a pillow. "You're falling over dear." Then he tries the left and a recreation therapist points his crown to the sky and smiles a cheery smile.

This goes on for days. When his son comes to visit, he says, "how's it going Pops? Are you enjoying your new home?"

Old Melvin draws himself up and gathers a great breath. "No dammit. I need to fart, but every time I lean over to work it out, someone sits me up again. I wish, they'd just let me be."

-----

William's sapphire eyes

Benched?, April 2008

William has the eyes of a 20 year-old. Laurence Olivier handsome.

60 years ago, his front teeth were knocked out. A puck deflected off a goalie's wide blade and careened arrow straight for his teeth. It was like he knocked them out himself. That was the first story he told me.

His eyes are blue as a mountain lake fed by a receding glacier that reveals earth's eternal bones. Clearly, they see and see. They remember.

10 years ago, his wife died. "She used to make me do stuff whether I wanted to or not," he says, a few words at-a-time. Since she left, his daughter tells me, all he does is sit in his chair and watch TV, heavy oil down a clogged drain.

Then he had his stroke. He doesn't want to be here, alive that is, but his body resists. An oak tree with 86 rings and roots that reach to an underground artery of live-giving water doesn't give up easy. He still has a few stories to tell.

Wednesday, we were working on his dysarthric speech. My assistant had rustled up a page of social phrases. "Thank you very much. I'm happy to see you. Where is the washroom?" They were unusually banal when listed like that. By the time we got to the 15th phrase they crossed the line into funny. Bill read them fluently, voice stronger than before, and with good humour. They were so absurd he started to have fun. Smiling, chuckling, sapphire eyes illuminated from within by a growing blue flame.

Next week, I'm going to see if he has more stories to tell. I'll start by asking him about his wife.

-----