Lack of Insight

Sometimes, the brain doesn’t accurately analyze reality.

Take this scenario:

   

When this happens for clinical reasons, it’s called “lack of insight.” Patients whose field of vision has been cut in half don’t realize they’re ignoring their clinician sitting to their left. Patients with newly amputated legs try to get up to go to the restroom—and fall.  Patients whose swallow muscles are impaired insist that they can take five pills at a time—and end up coughing and spluttering as something goes down the wrong pipe to the lungs. Patients who can't balance to walk ten feet beg to go home without any help or medical equipment. They fail to recognize their confusion, dysphagia, aphasia, visual impairments….

In my own life, this is called “lack of insight.” I take on tasks far too difficult too handle. I walk into emotionally triggering situations without preparing myself, and I end up exploding. I strike up sensitive conversations, unaware that I’m saying insensitive things and causing a lot of hurt. I fail to recognize my hubris, my weaknesses, my biases and prejudices, my selfishness.

Can you relate?

How can we overcome our lack of insight?

Honestly, I’m not sure I ever will, not really. I imagine I’ll always have biases and prejudices, hubris and weaknesses, and of course selfishness.

But I’d like to be intentional about gaining insight. I try to read articles and books written by people of different perspectives, especially marginalized perspectives. For folks without books and articles to speak for them (I’m thinking of my patients and their families), I have to listen intentionally to their individual needs in the moment. I try to find out what they need me to say or not say, do or not do. And often I find out what I thought was helpful was actually not really so helpful at all—in fact, I’ve been hurtful.

I’m doing a lot of praying for humility these days.

What should I do when I gain some insight? When I realize I’ve been rude or hurtful, I’d like to own up to it and apologize. When I’ve made someone else’s story of suffering about me and my response to it, I’d like to stop and listen. When I’ve put myself on a pedestal, I’d like to step down.

I’m never going to get this exactly right. And my insight will never be perfect. But I can strive for what the Greek philosophers called arête—always seeking to better myself and knowing that I will never be perfect here on this Earth.

I'm sure I'll always suffer from lack of insight.  But every day I'll pray and try to do a little bit better.  

Sloppy Communication

 

Me:  “Swallow this.”  

Patient:  “Are the Stars playing today?”  (coughs and splutters)

Me:  “One thing at a time.  Swallow.”

Family member 1:  “Why is it so cold in here?  It’s probably because of that covid virus.”

Family member 2:  “Who’s got covid?”

Me:  “Nobody in this room has covid.” (turning to patient)  “Now swallow.”

Patient:  “I don’t have covid!  They did a test!”  (coughs and splutters)

Me:  “One thing at a time.  Swallow.”

Patient:  “You’re the one who brought up covid.”  (finally swallows)

Me:  “Good.  Now swallow again.”

Family member 2:  “Let’s watch the Stars game.”

Family member 1:  “Can’t you see he’s trying to focus on his swallow?”

Patient:  (with a gurgly voice) “Why do I have to swallow again?”

Me:  “Something seems to be going down the wrong pipe.”

Family member 2:  “I can’t hear the therapist.  What did she say?  Why does she want him to swallow again?  Is it because of covid?”

Me: (shouting) “SOMETHING IS TRYING TO GO DOWN THE WRONG PIPE.”

Family member 1:  (also shouting, simultaneous to me) "HE'S CHOKING."

Patient:  “No, I’d feel it.”

Me:  “SWALLOW.”

Patient:  “Let’s watch the Stars game.”

 

Working with patients and families with disabilities has taught me that communication is often messy.  No matter how perfectly I plan my session or how brilliantly I attempt to do patient/family education, something often goes awry.

I see it in my own life too.  Conversations with my family and friends—they’re not optimized; they’re not like the crisp dialogue written in movies and books.  In real life, people talk over each other.  We say what we don’t mean.  Or we say what we mean and are misunderstood.  We misunderstand others.  We apologize (or we don’t).  We get mad.  We interrupt each other.  We fail to listen.  We learn to listen better.  We change our minds and say something different.  We say things in such a roundabout way that nobody can understand what we’re getting at.  We use metaphors that don’t work.  Things get overwhelming.  Nothing goes according to plan.  We all get confused.  We have to work very hard to reach each other.  It’s sloppy.

And you know what?

That’s OK. 

In fact, I think it’s strangely beautiful.

Honor the Process

Each year, I ask the Lord to give me a word to bless the new year.  (Yeah, I'm cheezey like that.)  I was reflecting and meditating with a dear friend on New Year ’s Eve, hoping (as always) for a really positive word heralding achievements and abundance.  Alas, this year, I received a challenging phrase:  “honor the process.”

"Dude, that sounds like some sort of hippie dippie mantra" I thought.  "Are you serious?"

I’m pretty sure He’s serious.

I am not really into “honoring the process.”  I like my results to be fast and measurable.  I’m the kind of person who writes things like “brush teeth” and “finish to-do list” onto my to-do list, so I have something to cross off.  

This is going to be rough.

My patients and their families also express frustration when “the process” doesn’t seem to have a steady upward trend.  “I could to this yesterday!  Why can’t I do it today?”  “Why can’t she just learn this?”  “Why is this week worse than last week?”  I can definitely relate to this impatience, although my struggles are very different from their struggles.

A very wise person shared something with me, and I’m going to share it with you:

Progress does NOT look like this:

True progress looks like this: 

We have to get through the “bad” days to move forward. 

What does this look like?  Accepting when our progress looks like the clichéd one step forward, two steps back.  Allowing ourselves (and others) to mess up.  Practicing patience with ourselves, others, and God.  This is easier said than done, especially in a society that is obsessed with productivity and optimization.

This also means we should be kind to ourselves when we aren’t practicing patience.  Learning to “honor the process” is a process.  (oooh, meta)

I’m including a full page printout of the graphs above in the SLP tab.  SLPs and other therapists, I encourage you to give these to your patients.  The wise sage who taught me about what progress looks like gave me permission to put this printout on the website.

Our abilities are _______

I’m trying to figure out a good metaphor for our abilities.  Working in a rehab hospital reminds me daily that abilities are neither static nor intrinsic.  But what are our abilities, exactly?  Are they rights?  Obligations?  Gifts?  None of these metaphors seems to quite fit the experience of being a human with limited abilities.

It’s so tempting treat my abilities as rights.  I feel it’s my right to be able to process information quickly enough to drive a car, to run errands, read and follow a recipe, to process conversational language, to read and write, to work quickly and efficiently.  But then my monthly monster visits and I’m drowning in brain fog, barely able to understand simple sentences, unable to remember basic information or even balance for walking.  I never know how long it will last—sometimes hours, sometimes days.  For over a decade, every time I “misplace” my ability to think straight, I wail and cry like a child that’s lost their favorite toy.  It’s my right to think straight, I moan, pounding the ground with the heavy thud of weak uncoordinated tear-drenched fists.  It’s my right to be “smart.”

I’m lucky that this removal of my cognitive abilities is temporary and somewhat predictable.  As a therapist, I know many people whose cognitive abilities have been more severely damaged by stroke, brain injury, dementia….  If abilities are rights, then Someone upstairs isn’t playing fair.  And yet so many of my patients, family, and friends with disabilities find moments of extreme grace, even in their suffering.  This doesn’t make sense if they have been stripped of their rights.

No, our abilities aren’t rights.  Not in the cosmic sense, anyway.

Then come the nagging doubts.  If these abilities aren’t my right, maybe they’re my responsibility.  If I fail, I have to try harder—I’m supposed to be able to do these things.  I have to strive as hard as I can to optimize my abilities until I’m burnt out and exhausted.

This never works.

So are my abilities gifts?  Have I been given the gift of language, the gift of balance, the gift of whatever my IQ is, the gift of breathing?  But what about when these “gifts” are rescinded?  A true gift-giver doesn’t ask for the gift back.

Again, the guilt.  Maybe it’s my fault.  Maybe I’ve damaged the gift/ability through some sort of negligence.  Maybe I deserve to lose the ability.

Of course this is a preposterous and very harmful way of thinking.

Maybe I don’t understand the way gifts work.

Some gifts are long-lasting—a book, a ring, warm socks, a beautiful handwritten letter.  I can keep and cherish those gifts for years to come, their presence a constant reminder of the love of the giver. 

Other gifts are ephemeral—a box of chocolates, a ticket to a show, a kiss, a home-cooked meal.  Are these gifts less important or less valuable than longer lasting gifts?  Is the longevity of the gift the correct way to measure the love of the giver?  (If so, what does that say about long-lasting fruitcake?)

Every day we receive gifts.  Perhaps our abilities are more like ephemeral gifts.  We receive them anew each day, each moment.  The ability to breathe.  The ability to stand.  The ability to swallow.  The ability to speak, to read, to write, to do the things we love to do.  Gifts, all.  Given each day.  Never a guarantee.  Not rights, not obligations.  Gifts.

Some days we receive gifts we don’t want to accept.  The “gift” of not being able to stand.  The “gift” of not being able to think straight.  The “gift” of not being in our healthiest prime.  Should we reject these gifts?

Ann Voskamp, author of One Thousand Gifts, writes often about giving thanks for hard gifts and to find little gifts even in suffering.  I love this idea!  It complements beautifully the writings of St. Therese of Lisieux, who teaches us to embrace suffering.  Both authors take this idea a bit farther—we can offer our gifts to others, and to God—each gift in its own way.

So on days when I find it difficult to do the things I am accustomed to, I can choose to reject the gift like an unwanted fruitcake—or I can try to give thanks.

This is easier said than done.  And to be honest, I’m terrible at it.  But perhaps in time I will learn to receive all the gifts I’m given—even the hard ones—with grace and thanks.

This time of year is filled to the brim with gift-giving (much needed in 2020).  Let’s remember to be thankful for the gifts we receive each day—whether they are long-lasting or ephemeral. 

If our abilities are gifts, we receive them moment by moment, day by day—gifts to be cherished even if they burn bright and brief like birthday candles.  And I trust that the Giver of these gifts wants to surprise us with something spectacular each new day, each new moment.

How our insults betray our prejudices

Name-calling and shame-labeling are popular today.  From major media to comedians to kids on the playground, insults are tossed back and forth like dodgeballs. 

The insults we choose reveal who we disrespect.  I’m not talking about the targets of the insults but rather the descriptors used.  If we say “that’s so sexist,” we are disrespecting the practice of sexism.  Seems reasonable, as long as we don't use the word lightly. 

If we say “that’s so gay,” we disrespect gay folks.  Uh-oh.  Now we’re disrespecting a group of people—the LGBTQA+ crowd.  That isn’t OK because it dehumanizes gay/LGBTQA+ folks.  I don’t care what your views on LGBTQA+ issues are:  it is never OK to dehumanize a group of people.  Everyone has dignity and deserves respect.

You know what I still occasionally hear as an insult, usually uncontested?  The word “retarded” and its ilk.

On the radio, a prominent politician called their political rival a “low-IQ individual,” the sneer in his voice evident over the radio.

I heard a hospital employee refer to a coworker’s mistake as “retarded stuff”—in front of a patient with a newly acquired cognitive disability, a sensitive nature, and perfect hearing.

This is also not OK, folks.  Using “retarded” and related words as a catch-all derogatory term betrays our society’s lack of respect for individuals with intellectual/cognitive disabilities.  When we hear such language being used, we should educate others about how dehumanizing it is.  And we can provide a model for how to provide appropriate criticism.  The insulting words are just a symptom of a deeper problem.  The best way to stop using dehumanizing language is to change our hearts.

Having intellectual/cognitive disabilities does not make someone inferior.  It’s a clinical condition that isn’t even easy to diagnose.  Intelligence is multifaceted and occurs on a complicated sort of spectrum.  And it changes over time.  Having such a disability says nothing about a person’s moral character and is not a chosen condition.

One of my friends self-identifies as being “mentally retarded,” as this was the diagnosis she received in her childhood.  ("Retarded" used to be a common clinical term but has fallen out of use because of its use in insult.)  How do you think she feels when she hears someone say “that’s so retarded” or “you’re so retarded” in an insulting manner? 

Just as with sexual orientation, race, etc., we should not be using “retarded” as a derogatory term.

When we hear such words used inappropriately, we have an opportunity to speak out in a way that can inspire positive change.  If you hear someone using an insult that dehumanizes others, I encourage you to educate that person.  We don’t have to shame them because as Brené Brown, PhD, LMSW says, shame is not an effective tool for social justice.  We can politely tell them that the language they used is hurtful and ask them to stop using those words as insults.

One of the most effective ways for us to effect change in our culture is to model a way of speaking that doesn’t dehumanize others.

Insults that dehumanize people with intellectual/cognitive disabilities use clinical and semi-clinical terms like “retarded,” “special needs,” “resource,” “low-IQ,” “disabled,” etc.  We should refrain from using these terms outside of their clinical context, where they are not used as insults. 

But what about more subtle forms of insult like “slow,” “stupid,” “dumb,” “idiotic,” “imbecilic,” “foolish,” or “unwise”?  Some of these terms are more emotionally charged than others.  Some of them refer to a specific group, like “slow” as a substitute for “retarded” or referring to someone with slower processing time.  “Dumb” traditionally referred to someone who couldn’t speak, perhaps because of an expressive language disorder, but that meaning has been more or less replaced with the same meaning as “stupid” in the common parlance.  How careful should we be with terms like these?

The waters are muddied by this:  it’s important to judge the wisdom of our own (and sometimes others’) choices.  I tell my rehab and executive function patients all the time to evaluate their decisions carefully and learn from them.  An unwise decision with unwanted consequences should be labeled as such to avoid the same mistake in the future, and a wise decision should be labeled as such to encourage similar decisions in the future.

So when is it appropriate or inappropriate to use these non-clinical words?  I’m not trying to be the PC police here—I’m legitimately asking the question.  I’m not really sure where to draw the line.

Maybe instead of drawing a line, we should re-align our hearts.

Let’s stop treating perceived intelligence like moral superiority.  There are plenty of good people who make unwise choices and plenty of good people with low IQs and plenty of good people who are intellectually or cognitively disabled.  And it’s not a sin to be wrong, to make mistakes.  In our current culture, this is radical.

So let’s be radical.

When we stop treating perceived intelligence like moral superiority (and lack of it as moral inferiority), we stop dehumanizing people with intellectual/cognitive disabilities.  We won’t use intelligence words (clinical or not) to label a person in a derogatory way.  And when we criticize actions, we will use words that are NOT emotionally charged.  Yes, even when we’re angry.  Because being angry is not an excuse to dehumanize others.

If we re-align our hearts, we won’t have to think about it.  When you are angry, do you have to think about whether or not you use racial slurs to insult someone or something?  I hope not!  Do you have to think about whether or not you use the word “gay” to insult someone or something?  Again, I really hope not!  So let’s give our brothers and sisters with intellectual and cognitive disabilities the same respect we know we should afford to others.

Let’s value everyone’s dignity.  When we change our hearts, our tongues will follow.

Redefining Independence

I frequently tell this parable to my patients.  And honestly, I think I could stand to listen to it myself:

Bob was driving to work when his car stopped.  Bob valued independence above all else, so he decided to fix the problem himself.  He opened the hood of the car and tried to determine what had gone wrong.  It was hard to see through the thick smoke, but Bob kept rummaging through the parts of his car until he found an open flame.  Bob’s hands were badly burned and he fell backward in surprise, injuring himself further.  Bob had to go to the hospital.

Was Bob really independent in this story?  Of course not.  Injuring himself and putting others at risk was not true independence.

Paradoxically, to be independent in this circumstance, Bob would have called the fire department and eventually a mechanic.  To be truly independent, he would have relied on someone else’s help.

Our society seems to think “independence” means doing things on our own.  Anyone who can’t is seen as weak or inadequate.  This attitude is pervasive and has been around for generations—I can even hear it in my geriatric patients’ turns of phrase.  So often, my patients express to me that they feel they are “a burden” to their families for needing so much help.  And I myself fall prey to this lie as well. 

I’ve read enough mommy bloggers to know that a woman is supposed to be able to flip gluten-free pancakes in an immaculately kept kitchen while changing her baby’s diaper with one hand, keeping her toddler out of trouble with another, and helping her first grader with his math homework.  So when my menstrual symptoms affect my balance and I can’t even walk the dog, or I’m overwhelmed with house chores and work, or I need help processing my emotions, or I just can’t seem to do it all on my own, I feel inadequate.  I feel like I've lost my dignity, however briefly.

Maybe we all need to redefine “independence.”

True independence means taking charge of our own safety and using our resources.  Sometimes that means asking a friend or family member for help when we’re overwhelmed.  Sometimes it means making sure someone is with us when we get out of bed so we don’t fall.  Sometimes it means going to a support group or attending therapy.  Sometimes it just means using a walker or safety device.  True independence is different for everyone and changes over time.

I’d like to hear that again, because I’m prone to comparing myself to others.  In fact, I’m going to let Mneme, the Muse of Memory, repeat it for us so we can commit this to memory:

 

Thank you, Mneme.

Once upon a time, when I lived briefly in a barrio in the Caribbean, I encountered a family who seemed to really get it.  In this family, there were several family members with disabilities—some children, some adults.  All the family members helped each other out—nieces and aunties, mothers and daughters all worked together.  Now, that’s not to say there wasn’t suffering, and it’s not to say it wasn’t frustrating.  But as a team, they overcame many more obstacles than any of them could have overcome alone.

We can all learn from this family. 

Many of my patients’ families are similar to the family I just described.  They rely on each other.  I have so much to learn from their bravery, compassion, and healthy interdependence.  I hope to accept help with humility and to stop judging myself for relying on my support network.

I’ll leave you with a quote from the old Claymation Rudolph the Red Nosed Reindeer:  Let’s be independent together.

*

I’ve put a new handout in the SLP freebies section.  It’s a simple text-only motivational poster that’s good for SLPs, patients, and everyone else.  (It’s a little wordy, so probably best for higher level patients, especially those with lack of insight into deficits or who are feeling really discouraged.)  Click here to download the handout.  Feel free to modify however you want.  Please print and distribute freely.

Helping myself (and my patients) to grow: Treatment vs. Evaluation

I often set expectations for myself and fail to meet them:

~I want to wake up earlier.  But I continue to go to bed late.  

~I want to pray more.  But I fill my life with more and more distractions.

Of course I am not making changes if all I ever do is “check in” with myself, evaluating and re-evaluating without providing solutions.  

This reflection is *not* about self-optimization.  It’s about growth and self-acceptance.  It's difficult to grow as a person without lots of reminders, or a structured organized foundation for change.  If I “fail” to change, there is no need to shame myself—that’s just a sign that something isn’t working yet. 

As usual, I need to learn from my patients.

True Love: a Valentine's Day reflection

I have seen in the movies and read in books that true love is about finding joy in each other, about holding hands and giving roses and writing love letters.  I have heard in wedding speeches and sermons that true love is about staying faithful even when it isn’t fun. 

I believe that both of these are true.

And I have seen second-hand that true love is often about wiping dirty bottoms, and spoon-feeding, and encouragement to try one more time, to get up for another day.  True love is about staying faithful even when someone’s personality changes after a brain injury or during the onset of dementia.

This Valentine’s Day, I am reflecting about what I have learned about true love from spouses who take on the role of caregivers—and spouses who take on the role of patient.  Neither role is chosen, but when embraced, both teach us about true love.

What determines your worth?

Society has attempted to answer this question in a variety of ways, defining a person’s worth by wealth, social class, language, skin color, education, intelligence, strength, bravery, wisdom, kindness….

Although such attributes can describe a person’s experience, descriptions do not define worth.

You are much more than your attributes and your experiences.

"What do you do?" Shifting our small talk

In the United States, our small talk is very direct.  After asking someone’s name and maybe where they are from, the next question is usually, “What do you do?”

In a culture that defines a person’s worth by their productivity, it can feel very vulnerable to say you don't have a 9-5 job.  This subject can feel especially raw for people with newly acquired disabilities that precipitated a career change or an early retirement.  

Even for the traditionally employed, this question can be daunting.  Brené Brown, who researches the human condition, wrote about this in her book The Gifts of Imperfection:  “Most of us have complicated answers to this question.  For example, I’m a mom, partner, researcher, writer, storyteller, sister, friend, daughter, and teacher.  All of these things make up who I am, so I never know how to answer that question” (page 114).  While the roles I fill are different than hers, I can still think of a long list of words to describe myself, most of which aren’t career related.

No matter our state of life, the question “What do you do?” can tempt us to oversimplify our self-worth.  To this predicament, I offer three solutions to help us begin to value ourselves differently.

This is Who I Am: an interview with my friend Sydney

"This is Who I am and That's How it's Gonna Be”

An interview with my friend Sydney

My friend Sydney always has something helpful to say when I most need to hear it.  Sydney and I met as coworkers at a pediatric clinic.  The more time I spent with her, the more I learned about her courage and positivity.  Sydney is athletic, courageous, funny, and charming.  She is a great movie buddy—we love watching movies like Wonder Woman and Star Wars together.  Sydney is also very open about her experiences growing up with and living with an intellectual disability.  The other day, I invited her to share some tea and popcorn at my place so she could tell her story.

Finding freedom in a disability: Katherine Wolf

"I realized very clearly that happiness has nothing to do with the material things which surround us; it dwells in the very depths of the soul. One can be just as happy in a gloomy prison as in a palace." ~St. Therese of Lisieux, Story of a Soul

Sometimes I become frustrated when I find myself limited. I can't get enough things done during the day. I sleep for too long. I talk too much and can't get at what I'm trying to say. My weaknesses seem to bind me, to steal my happiness.

My instinct is to fight. I want to overcome my limitations. There I go, pulling chains behind me as if I could outrun them.

Communicating when it isn't easy

Communication is connection. For most of us, it's easy. A sideways glance. Hands on hips, feet tapping. A kiss on the cheek.

Sometimes, we use words. "Did you see that?" "Please take out the garbage." "I love you." Like magic, the words we conjure in our brains turn into sound waves, travel through the air, and become words summoned in the brain of another.  The written word is equally mysterious. Arbitrary shapes become stories, poems, proverbs. You are reading my words now, somewhere far from the tapping of my keyboard.

So what happens when there is an interruption to the brain? Imagine a blindfold, cotton in your ears, marbles in your mouth. Not so easy now.