When You are Sick and Don’t Know It

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If You are Sick or Injured and Don’t Know It

Recently, I got to spend some time with a good friend and her 1-year-old son. As a young child, if your parents’ friends come to visit, you are absolutely and without a doubt the center of attention. So, we were all watching this super cute kiddo standing up and trying to balance in various positions and as he was doing this, he slipped and bonked his head a little bit on the step he was standing near.

In that moment, all of the adults in the room kind of did the mental math to compute that the fall was minor and so nobody was worried about a serious injury. You could tell that the little guy could have cried, but after gauging our reactions (I’m obviously inferring here, he didn’t tell us this), he went right back to exploring his balancing world.

I was thinking about this relatively minor event and its implications for a greater question that has been on my mind: How do other people’s reactions to your injury affect your experience of that injury? For example, say this kid we were watching actually did get hurt as he fell but the adults in the room didn’t think that he did. Would our reactions be enough to preserve the child’s experience of wellness? Would he fail to experience any pain or other symptoms or would the physical damage outweigh our psychological contribution to his reaction?

As we know, one’s experience of pain is very dependent on contextual factors, but exactly how much weight does knowing or thinking that you are injured have on your experience of injury? More specifically, I am curious about two particular situations of not knowing:

1- you are sick and other people lie to you about your illness (i.e., you are blissfully ignorant of your health problem)

2- you are sick and your brain seems to deny the presence of an illness (termed anosognosia or “denial syndrome”)

Other People are Lying to You

I listened to an episode of This American Life podcast (the episode “In Defense of Ignorance”) that presented an account of medical diagnoses that were actually withheld from the ill family member, even in serious cases like lung cancer. There were children who had made the decision that it was better for a mother or grandmother to not be told that she had cancer! My initial reaction was one of slight outrage. But, I continued to listen and I may have changed my mind to a more firm position of, “I really have no idea what is right in these situations”. Truly, it is very difficult to judge what is appropriate behavior for another person in negotiating the illness of his or her family member. There are various arguments for keeping health information from a family member, but one of them goes something like this: If an aging parent or grandparent were to know about the diagnosis of a terminal illness (in cases that are untreatable), it would just add to his emotional burden of stress and it would give him a reason to physically deteriorate or experience some of the natural symptoms of aging as catastrophic and illness-related. Keeping the diagnosis from him will allow him to live out his life with peace of mind and also to not succumb to the illness as quickly because the added stress and psychological contributing factors have been removed.

Obviously, this situation is complicated by the ethical implications of lying to a family member and taking away his or her autonomy of choice. But, to be honest there is something attractive about trying to protect a loved one from having to mentally deal with such a serious illness (assuming there is really no proactive treatment that will help the condition). It reminds me of the power of placebo treatments and the somewhat sticky debate of how adamant to be about the abolishment of all treatments that may work via placebo. After all, if a patient believes in a treatment and it works, how much should we really cling to the need for a scientifically proven mechanism of action?

Your Brain is Lying to You

Reading about the accounts of patients with anosognosia is a little bit like watching The Matrix. It leaves you very uncertain about what is actually “real” and it starts to illuminate the great complexity with which each of our brains constructs our own “reality.” As I’ve written about before, our perceptions may not necessarily reflect an ultimate or “true” form of reality. Anosognosia is the phenomenon where a patient denys an observed injury or deficit and is most often described in hemiplegic (half-paralyzed) patients that have suffered a stroke (i.e., the patient’s left side is paralyzed but she denies this to be true).2

In his book, “Phantoms in the Brain,” Neuroscientist V.S. Ramachandran describes the case of a woman who has anosognosia following a stroke.3 The woman blatantly denies that she has any movement deficiencies despite having lost the ability to move her left arm and left leg. She vehemently challenges Dr. Ramachandran’s assertions that her left arm and leg are paralyzed even as he asks her to touch his finger with her left finger (her hand lays at her side, but she claims it is touching his) and to stand up and walk (she has been in a wheel chair since the stroke and is unable to walk but is impatient when Dr. Ramachandran suggests that she cannot walk). Why would one’s own knowledge of physical ability be so impaired? Ramachandran acknowledges that there may be some component of psychological denial, but with a few elegant experiments he also shows that these patient’s are not just lying, they actually have deficits in their ability to accurately perceive their own deficits. The brain is complex indeed.

What is the Right Amount of Knowledge?

As these instances suggest, there are cases in which a person may be largely ignorant about the presence of an injury or illness. Conversely, at the far other end of the spectrum is the situation in which a person could have an overabundance of information. I am immediately reminded of a book that came out this year called: “When Breath Becomes Air,” which is the account of Paul Kalanithi’s struggle with his own mortality as he is diagnosed with lung cancer as a young neurosurgery resident. Here is a man with an incredible amount of medical knowledge experiencing the terrors of cancer from both the perspective of patient and with the training of a medical doctor. He acknowledges an almost obsessive desire to know the probability of how long he has to live, while concurrently acknowledging the limitations of medical diagnosis and prognosis. The book is particularly poignant because of the author’s dire situation (in fact he passed away before the book was finished, and it was published posthumously) as well as his incredibly thoughtful and empathic interactions with patients, even before his diagnosis.

As Paul describes communicating with patients and their families, he writes: “a tureen of tragedy was best allotted by the spoonful.” This insightful statement comes about from his experience in delivering bad news and his finding that much of what was told to patients and their families immediately following a grave diagnosis or prognosis was not remembered and would need to be subsequently repeated. People, it seems have a limit to the information that they can process in the midst of trauma and trying situations.

I don’t really have a definitive answer for the optimum amount of knowledge in injury or illness, and maybe each person is unique in what he or she would prefer or benefit from. However, I will say that in the case of one’s own illness and injury, it may be wise to question the amount of knowledge that is actually needed for optimum health. Perhaps in this situation, as in many others in life, more may not always be better.

References:

1- Kalanithi, P. When Breath Becomes Air. New York, Random House; 2016.

2- Orfei MD, Robinson RG, Prigatano GP, Starkstein S, Rusch N, Bria P, Caltagirone C, Spalletta G. Anosognosia for hemiplegia after stroke is a multifaceted phenomenon: a systematic review of the literature. Brain. 2007; 130, 3075-3090.

3- Ramachandran, V S and Blakeslee, S. Phantoms in the Brain: Probing the Mysteries of the Human Mind. New York, William Morrow, 1998.

4– This American Life Podcast, episode #585: ”In Defense of Ignorance

 

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Here I am on a recent hike going up a rocky scramble for 2,800 ft. elevation gain near Phoenix, AZ. Not knowing what was coming, it was challenging and enjoyable. Would it have been less or more so if I would have known how hard of a climb it was to the top of this peak?

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Life Posture

I am not sure that there is such a thing as living a “balanced life” while in graduate school. The external demands on your time and the academic and financial pressures create a situation that is not necessarily what most would call “healthy”. While becoming trained to improve the health of others through movement, the physical therapy student is very sedentary, and often in seated postures that don’t necessarily confer the best health benefits. The perfect irony of this situation was not lost on me today as I sat studying with slumped shoulders and forward head posture and read about Janda’s upper crossed syndrome (a way of describing negative adaptive muscular changes to poor postural positions).1

We have been learning about posture and balance lately in one of my 1st year Physical Therapy program classes. It is easy for me to see similarities between the way we colloquially talk about work/life balance and the physical sense of maintaining balance of your body so you don’t fall over. I like thinking about this in terms of posture because posture is referring to the different body positions used to maintain one’s balance. So, posture can be evaluated as a freeze-frame or picture and is a little bit more tangible. In thinking about these analogies, I have been struck by two themes: 1- Applying pressures lead to compensations and 2- The health paradox

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1-Pressures Lead to Compensations

We talk about forces in a postural sense by describing the effects that they have on joints and the muscles or passive structures (e.g., ligaments) at the joints that are affected. For example, if you sit with a forward head posture, the weight of your head is going to be pulling down and so the muscles on the back of your neck are going to have to be working harder to hold your head upright against gravity. The good news is that the closer you are to ideal alignment or “good posture,” the less work your muscles will have to do and the less strain on your cervical spine. But, the bad news is that the farther away from this “balanced” position (head over cervical spine), you are the more the weight of your head wants to pull you down and the harder it is to get back into that aligned position. Also, as you feel more of these external forces, you automatically compensate with adjustments (e.g., tilting your head up) to accomplish your goals (e.g., keeping your eyes level). The compensations that you choose can themselves create more pressures on your system (e.g., increased compression where the back of your head meets your spine).

So, how do life pressures lead to compensations? I’m sure you have plenty of examples, but hear me out as I discuss the parallels. To me living a balanced life includes allowing time and energy for meaningful relationships, health pursuits (exercise, healthy food preparation and eating, self-care), and intellectual/professional/societal contributions. The closer you are to maintaining balance and equanimity (not equality per se, but attention to each area) between these facets of life, the fewer compensatory strategies that you need to employ to maintain your health and your flow of life. Just like forces on your body, pressures experienced in a whole life paradigm can create compensatory changes or effects. For example, increased time pressures from school or work can create compensations such as eating more convenience food options, reduced opportunity to connect with others in meaningful social contexts, and a decrease in time devoted to exercise. A great (well not so great…) example of this is in those pursuing higher education: graduate students have worse mental health profiles than those in the general population and many report symptoms of anxiety, depression, and increased risk for suicide.2

2-The Health Paradox

Another thing that I have noticed is that investments by those promoting health for others often come at a sacrifice of health for those individuals. At the most basic level, this can be chalked up to opportunity cost: the farmer spending untold hours working to grow the most sustainable and healthy food will have less time to prepare healthy food for himself, the doctor working around the clock to care for your loved one in critical condition will not be able to spend that time with her family, and the physical therapist promoting healthy movement for others may be overworked to the point of reducing her chance to be physically active.

I also wonder about the paradox of health created by our school systems for many of these health professionals. While I understand the very real necessity of having competently trained doctors, nurses, physical therapists, farmers, doctors of Chinese medicine, etc., there is a part of me that wonders if the model of schooling that creates so much imbalance in life areas is the best way to train those who are to be the stewards of our health?

I would like to think that contributing to health for others does not mean a sacrifice of health for oneself. In fact, I would like to think that all of our health is interconnected and perhaps the greatest symptom of disease of our society is this lifestyle disease within our health care professionals. But I digress…

Assessing Your Life Posture

With these two commentaries, I hope that I’ve stimulated some curiosity for you to examine your own life and how your body positioning can be analogous to life pursuits. The more consistently we practice good life posture, the easier it may be to attain good health and the fewer negative compensations we may be subjected too.

 

References:

1- http://www.jandaapproach.com/the-janda-approach/jandas-syndromes/

2- https://www.psychologytoday.com/blog/in-love-and-war/201511/graduate-school-and-mental-illness-is-there-link

What Are You Looking At?

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Did you remember to exercise your eyes today? I know, I know, I never used to think about my eye health this way either. Like most people that I know, the most attention my eyes usually get is for the obligatory once a year eye exam to get my prescription for contact lenses. I feel like lately, though, everywhere I look (get it?!), I am being confronted with information pointing to the importance of eye health and new ways of viewing eye health (get it?! Okay, sorry done with the puns…). As it turns out, it’s not just about measuring one’s prescription strength for corrective lenses or the absence of disease (e.g., free from glaucoma, cataracts, etc.).

There are certain statements that foreshadow the importance of our eyes beyond just as a special sensory organ. There is a saying, “the eyes are a window to the soul,” and colloquially, we even seem to have this belief or superstition that you can discern someone’s character or intentions by staring into his or her eyes. There are even those people who believe that long durations of eye contact are a crucial part of developing intimacy and human connection (Eye contact with Strangers).

Perhaps a more scientific, although no less grand statement, is along the lines of this quote from Katy Bowman, “Your eyes are a gateway to your brain.”1 There is literature that supports the idea that our eyes, and the visual information that we expose them to, can have a myriad of effects on us as organisms. From a developmental point of view, it has been said that, “what we do with our eyes molds our brains and guides its development—literally. The eyes have the power to turn brain plasticity on or off.”2

As I am learning currently in my neuroanatomy class, the eyes have many functional connections within the brain for both sensory processing and motor control. Out of the twelve cranial nerves that exit the brain and brainstem, five of these nerves have some portion serving the eye (CN’s II, III, IV, V, VI)! The eye is controlled via voluntary muscular control (from the extrinsic eye muscles) and involuntary/autonomic muscular control (ciliary muscles and pupillary sphincter muscles). Eyes really are incredibly important!

Furthermore, the effect of the various types of eye movements that we engage in can have broad systemic effects on our bodily health. As Thomas Myers writes: eye movements can affect the muscles of the head and neck.3 He illustrates this concept via a quick demonstration of how movements at the eye affect the suboccipital muscles (muscles on the back of the neck controlling head/neck position). If you close your eyes, and feel at the base of your skull with your fingers (give a little bit of pressure, the suboccipitals run deep), you can feel these muscles changing tone as you move your eyes side to side and up and down. With this example in mind, it is easier to buy in to Myers’ statement of connectivity of the eyes to other musculature: “How you use your eyes, and more particularly, how you use your neck, determines the tonus pattern for the rest of your back musculature.”3 Also, did you know that people’s visual clarity fluctuates when they are stressed?2

In the prior example, you are engaging in voluntary control of eye movements and positioning. But, the environmental stimuli that you expose your eyes to can also impact eye health due to the intrinsic eye muscles used in reacting to those stimuli. Muscles within your eye itself regulate both the ability to focus at different distances (ciliary muscles) and also the amount of light that enters your eye (pupillary sphincter muscles). Analogous to the way that we use other muscles in our body, without consistent use of certain eye movements (i.e., in distance vision, peripheral vision, night time vision, etc.) we lose the ability to regulate for these different situations. Basically, our eyes get deconditioned and less able to serve the various functions that they were intended to.2,4,5 Your eye muscles can atrophy!1 Once you realize this, it seems all the more important to use your eyes in a variety of settings to help promote good eye health (e.g., looking far away, using your peripheral vision, being in nature!, seeing in pure darkness, seeing in natural light settings).

All of these things have contributed to my newfound intrigue and curiosity about how I use my eyes in my day-to-day life. I hope that something that I have shared has grabbed your attention (…been ‘eye-catching’?!). So, as I think about pursuing a career as a physical therapist and helping others along their journeys of health, one of the questions I will have at the forefront of my mind is: what are you looking at?

 

References:

  1. Bowman, K. (2015). Don’t Just Sit There: Transitioning to a Standing and Dynamic Workstation for Whole-Body Health. Elsevier.
  2. Doidge, N. (2015). The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from Frontiers of Neuroplasticity. New York: Penguin Books.
  3. Myers, T. (2001). Anatomy Trains: Myofascial Meridians for Manual and Movement Therapists. Elsevier.
  4. Bowman, K. (2014). Move Your DNA: Restore Your Health Through Natural Movement. Propriometrics Press.
  5. Katy Says Podcast Episode #45: Natural Movement and Eyes (http://www.stitcher.com/podcast/katy-says/e/42892340?autoplay=true)

The Downside of Farther and Faster

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I recently had the opportunity to compare two different forms of transportation in a slightly all-consuming way. My first experience consisted of a 6-day backpacking trip in the Trinity mountains of California. My second experience was a 5-day solo drive across the country (2,500miles total from California to Ohio). I’m sure you can guess which experience was my favorite (duh). But, what you might not be able to guess (I didn’t predict these things) were the insights that I gained from interacting with the world in these two very different modalities of transport….

I can distill my personal reactions into three themes: speed, distance, and quality of connection.

Speed

While driving, I was going too fast (not speeding, mind you) to notice small details like individual flowers or species of prairie grass or if there were any birds in the area. It just wasn’t possible to appreciate my surroundings as the driver of a vehicle going upwards of 60 miles per hour. Comparing that with traveling rugged terrain by walking with a pack on and the contrast is staggering. I remember over the course of a couple of days of hiking, noticing manzanita berries along the trail in various stages of coloring and ripeness depending upon the elevation in which we found ourselves hiking.

Lesson learned: The pace at which you travel to any place or goal (through life itself, even) has a great impact on what you are able to take in from your surroundings. There is a lot to be missed if your only setting is warp speed ahead. I hope to personally be more aware of mixing up my modes of transportation and including some walking every day.

Distance

The biggest dissonance with traveling by car is that you cover so much distance, but you don’t have to move your body to get there. Think about this for a minute. It is super weird. Driving is kind of like delayed-action teleporting. It even leaves you with this vibrating or buzzing feeling at the end of a long day of driving, as if all the atoms in your body have been taken apart and are reassembling at your final destination. Like I said, super weird.

This whole concept of being able to travel such far distances without propelling ourselves,  leaves us with unreasonable expectations about how far we can reasonably travel in other areas of our lives as well. For example, we may become impatient while learning a new skill or building a new friendship or relationship with a romantic partner. We sometimes demand unreasonable levels of movement without allowing things to unfold more naturally. Have you ever achieved a goal that you thought was incredibly huge only to realize that you didn’t take enough time to appreciate the journey along the way? I know I have.

When you are walking somewhere there is no other way to get there than via the one-foot-in-front-of-the-other-method. It makes the process of each step important and necessary.

Lesson #1 learned:  The steps are often more profound than the actual finish line. Make sure you’re taking reasonable sized steps and appreciating your humanness. It’s not a very satisfying present moment if you’ve got your sights so far in the distance all the time.

Lesson #2 learned: Our bodies are made to move (if you don’t trust me, trust Katy Bowman, biomechanist and author of “Move Your DNA: Restore Your Health Through Natural Movement” and lots of other great books, blogs, and podcasts about healthy movement).   Not getting adequate movement just feels bad. Period.

Quality of Connection

I notice that I am more at peace when I feel attuned with the people I am with and feel connected to my environment. The best metaphor that I have for this connection with surroundings is the metaphor of touch (check out my previous post on human touch HERE). I was reading this book on the Chinese medicine practice of self-massage recently and one of the basic instructions for this practice was to have an, “iron arm, water wrist, and embroidery hand.” I love this idea. I think that it really provides the basis for how I feel when I am interacting best in the world: I am grounded at my core. I am flexible in my movements and thoughts. I am gentle at the point of contact with the external world.

When I spent the majority of my day driving,  there was a solid barrier preventing a direct interface with the world around me. Conversely, at the end of a long day of hiking, I would take off my boots and socks and walk around the campsite barefoot. In comparing my driving trip with my walking trip, maybe the most tangible difference that I can recognize was my ability to actually touch my surroundings.

Lesson learned: connection is a matter of the speed at which you are traveling and the distance you expect to cover. Quality connections happen best when you are able to feel firmly yourself, allow for a dynamic experience, and reach out with a tender touch.

Paralyzed by Movement Indecision

I was going to start doing yoga more regularly. I looked at the schedule of a studio nearby and scanned the class offerings: flow yoga, vinyassa yoga, yin yoga, flow heated yoga, mindful yoga with incorporated meditation. Then, I glanced at the list of instructors and their bios. There were women with body-work experience and men who had taken trips to India and spent years studying with world-reknowned experts. Even the timing of the classes left me with decisions to make: 45 minute power class, 60 minutes, 90 minutes with deliberately slow poses and holds. At the end of my 5 minutes of research, I felt overwhelmed by choices. I couldn’t for the life of me pick the perfect class out of this lineup: I liked the idea of yoga as exercise, so the flow yoga sounded good, but I also knew that the stretching and recovery of yin yoga would probably be good for me. But, then again, who can argue with a teacher who studied with the great yoga master who had mastered the most difficult poses by the age of 7?! I was stumped and my brain hurt and I decided to go for a bike ride instead.

Have you ever been in a place of indecision like this? Chafing under the multitude of possibilities and choices? Especially, when beginning a new activity it is often hard to not get caught up in the seeming pressure to choose the “right” class or form or timing or fit for your current habits and goals. But, I’m not so sure that’s a great approach to trying new things…

At about the same time I was having this yoga indecision, I was also having buyers’ guilt for this Groupon that I had purchased a couple months prior for a dance studio in town. See, at the risk of sounding silly, I have this idea that one day I’d really like to learn to break dance or even hip hop dance. If you have ever seen the TV show “Made” on MTV, basically my dream is to be “made” into a break-dancer. The premise of the show is that people who are not the best fit for a certain activity are coached up to be able to perform in this new role that they have chosen for themselves. Needless to say, I am a quite unlikely candidate for breakdancing competency and so I think I would be a perfect fit for the show.

I was inspired to try a new form of movement and after balking at the yoga class choices, I thought I might as well try this dance thing out (after all I had already paid for it!). So, I took that Groupon voucher that I’d been hanging onto and marched down to the dance studio….and took a beginner’s ballet class! It just happened to be the class that I could make it to without rearranging my normal activities. It was also a form of dance that was way out of my comfort zone, brand new to me, and I had a blast! I could feel the other movement knowledge that I have acquired from sports and other activities melding with this new way of moving. I could tell that it was opening up alternative positions and forms and grace through my body that I didn’t know I had. I am now convinced that with movement as with other facets of life, the key is not to find the perfect next step, the key is just to take a new next step. Try out something different. Try not to get bogged down by choice and just choose movement, whatever that may be.

On Death and Remembering

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“Because a man is sick often, and each time gets well, is that proof that he will never die?”

–John Steinbeck in “To a God Unknown”

 

I think it is valuable to contemplate death; Both in the sense of our own mortality and also in the instances of losing loved ones: friends and family. In our culture, we seem to have such a conditioned aversion to death and dying and even the process of loss that I think it is a worthy exploration.

I know that for myself, I have developed a more peaceful relationship to death only through turning towards it with curiosity and openness. What is this all about, this aching feeling of loss? It is an evolving relationship, but nonetheless, I am grateful that I can experience certain moments of embracing death and loss as a natural part of the process of life…with it’s own highs and lows and complexities. The following is a short piece I wrote on my feelings at the moment…

 

On Death and Remembering

I used to think that I had to feel sad when I thought of you

Now, when I think about you, it often makes me joyous

This joy is rich and complex

It is a joy that is weightless and light as cool mountain air

A joy of rustling leaves and the sound of laughter carried away with the breeze

As these sounds fade, it is a joy tinged with sorrow

 

I used to think that death was the end of life

Perhaps death is less finite than we think?

What if the death of a person is like the death of plants?

On the farm, I used to be so averse to the tilling in of unharvested crops

Now, I see it is less about the death of the plants in front of you and more about nourishing the soil for the plants to come

Within death, there is also a renewal of life

I hope that my life can provide for others as yours has mine

 

I used to think that holding on was a delusion or a denial of death

Some things, though, naturally linger and move on in their own time

I have a shirt that reminds me of you. It is gray and frayed and becoming less wearable each time I put it on

Your voice in my head, is softer and more gentle now. But, when I listen, it is there. ‘I love you’ it says

I still have your phone number saved in my cell phone

I still think of you when I hear “Lemon Tree” by Peter, Paul, and Mary

I do not wish to return to what was

These rememberings are just a pleasant way of experiencing you still in my life

How People React to Disability

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“Hey, slow down would you!”

“Wanna race?”

“I can hear you coming from a mile away!”

“At least you get a good parking spot”

“Let me tell you about the time I was on crutches…”

Crutches, for me, were a conversation magnet. It is kind of like the guy who buys a cute dog so that all the girls at the park will talk to him. Except, my social experiment seemed more like an invitation to every budding comedian on the street to poke fun at my lack of mobility, my speed, the fact that my arms were going to get so strong from using these assistive devices…or conversely for people to merely avail me with their heroic stories of their own stints on crutches and their “come to physical therapy” moments. I am a good listener, normally, but with my limited mobility…I really couldn’t move too fast to get away!

I don’t know what it is about this situation that makes people want to talk to you. I also am at a loss to explain the types of words and speech that were most often directed at me. As I have written about before, words and language matter, especially to those who are vulnerable or in pain. Language allows us to explain our inner and outer worlds, make sense of emotions, and share these intimacies with others. As I’ve moved (physically and symbolically) through different stages of injury, disability, and recovery, one of the most painful things that I’ve had to endure is others’ reactions to my experience of injury and disability. Sadly, I would have to say that the most common reaction that I experienced was this: aversion.

“Lost in aversion, we forget our capacity to love” -Sharon Salzberg

My reaction to these comments from others has evolved from one of mostly internal anger into a more gentle place of acceptance. But, to be honest, my first thought when something pointed was said was usually: “That was so incredibly insensitive, you have no idea what it is like…no idea what it is like to shape your life around your faltering body…”

I realize that it is impossible for others to know the backstory to my injury and recovery process and it is impossible for them to know how upsetting to my life the events surrounding my recovery were. But, maybe that is the point? When you are in doubt about a person’s circumstances, how do you relate to that person? With self-serving humor or an off-the-cuff remark? Or with an attempt at true connection, such as a gentle word or a kind gesture?

The default of kindness can never be wrong. So important is a willingness to share space with another person, no matter their condition. The very worst thing you can do is to react with aversion.

What People Say When They Don’t Know What to Say

This video moved me to tears. I was captivated, saddened, angered and ultimately empathetic.

I understand that it is not always apparent what the, “right thing,” would be to say or do. But, my intent with this discussion is to make people more aware of their gut reactions to disability, illness, and the like. I would ask that you try to keep an open mind and really evaluate what your intent is with how you are treating the people around you.

You don’t have to say anything. Just be with the person. Your willingness to be there physically means everything. Be there for the doctor visit, or the MRI, or the surgery or physical therapy appointment. Be there when everyone else is out playing football at the park and they can’t go. Be there when that person wants to talk to you or when he doesn’t. It is the most important thing, but sometimes it is also the hardest. It is not always easy or comfortable to experience that space of unknown and suffering and sometimes silence of someone you love.

“The Buddha taught that if the heart is full of love and compassion, which is the inner state, the outer manifestation is care and connectedness, which is morality; they are both aspects of the same radiance.” –Sharon Salzberg

Disability can create distance between people. Most obvious is the physical distance: it is hard to walk as close to someone who is crutching or using a cane or in a wheel chair. It is harder to hug or get close. People treat you with the uncertainty of carrying a stack of fragile china plates. But, when you really think about it, the issue of space is not so hard to overcome. I would ask you to try an experiment of closing the physical gap between you and someone who is suffering. Instead of a gut reaction of pulling away, what would it be like to embrace another in his or her state of pain or discomfort? Could you choose empathy instead of sympathy?

All we really want is for people to give us permission to be imperfect. When you refuse to acknowledge another person’s disability, imperfection, struggles- you are in some way saying, “I will only love you or spend time with you at your best, in your most polished state of being.” To me that is a great tragedy.

As I wrote about before, being human is messy. There is not one of us who is perfect or has it all together 100% of the time. That does not mean there is something wrong with us. To realize that we are not the masters of our circumstances (especially when in pain) is an ultimately freeing, but often difficult realization. We are not victims of our circumstances either.

“When we feel unhappiness or pain, it is not a sign that things have gone terribly wrong or that we have done something wrong by not being able to control the circumstances.” –Sharon Salzberg

 

A wonderful book and where I drew many of the inspiring quotes for this post, is the book “Lovingkindness: The Revolutionary Art of Happiness” by Sharon Salzberg.

Let’s Start at the Beginning…

bike beginnings

“Beginning again and again is the actual practice, not a problem to be overcome”

-Sharon Salzberg

Lately, I have been contemplating this idea of being a beginner and of “beginner’s mind.” More specifically, I have been thinking about what it means to be a beginner in activities that I am NOT just picking up for the first time. Let me clarify: there are physical activities that I am starting to do again (post-injury/surgery recovery) that I haven’t done in three or four years. You know that adage, “It’s just like riding a bike…” Well, I am actually testing out that saying right now! Just this week, I found myself riding an actual bicycle, outside, for the first time in about four years. It was a profoundly interesting process to be self-aware enough to watch my thoughts and really kind of notice what was happening during this experience of re-learning.

I am a naturally pretty competitive person (I am probably more self-competitive than competitive with others, although some might disagree…), so it is very hard for me to turn off my comparing and evaluating mind. As I reintroduce some of these movements that used to be second nature to me, I am noticing the thoughts and feelings of comparison with my old self and how I “should be” performing or moving or doing things. Luckily, I think I have a renewed perspective and appreciation for this place that I am in of revisiting activities. Like many things in life, starting over can either be incredibly frustrating and demoralizing or it can be a most liberating position to be in. There can be a significant lightness about shedding all expectations and just embracing the idea of a fresh start. The key is all about the perspective you take.

To me, the idea of relearning how to ride a bike is truly a gift. Being a beginner takes away most of the pressure I usually feel to perform (self-imposed, mind you). I don’t have to be “good” at it. I don’t have to know everything about it or even pretend to. In fact, everyone who knows my story pretty much expects me to be really shaky at these things right now. So, with those low expectations, I cannot fail! Seriously, though, it allows me to bring a true curiosity and openness to this activity that I otherwise would have completely taken for granted. In the past, I could have easily overlooked this experience for its simplicity- riding a bike- but now, I can truly savor it as such a source of joy and movement exploration.

I can approach bike riding from the perspective of knowing nothing and that opens up this huge scope of flexibility in what I can get out of the experience. I can choose any way that I want to participate in bike riding as an activity. I can ride a road bike or a mountain bike. I can ride a bike purely as a form of getting from one place to the next (e.g., a commuter activity) or I can choose to ride my bike for exercise. I can play with the time duration, distance and elevation change. I can choose to bike only when the weather is nice or I can investigate what those funny, huge snow tires for bikes are all about. I can learn how to change a flat tire and do my own maintenance or I can create the habit of relying on my friendly neighborhood bike shop to do it for me…you see being a beginner, the possibilities are endless!

This situation also creates a great opportunity for learning. The uncertainty that I have about introducing new activities as well as the actual difficulty of these activities (biking is hard if you haven’t done it in years!) means that I am paying a lot of attention and have to struggle in a sense to engage in them. Because of this, I am reminded of the idea that having some level of difficulty is what facilitates learning 1 and that developing broad and adaptable skill sets cannot happen without changes in the way that stressors are presented 2 . Without the rigidity of strongly held patterns of movement or ideas of how you should do something or how an experience should feel, you can be free to actually experience new ways of moving, thinking, and being. This flexibility (or lack thereof) is very important to our functioning effectively in situations of stress as regulated by our autonomic nervous system. You can find a great discussion of this idea as it relates to rigidity of movement and movement strategies: HERE.

Let me ask you, when in your life do you have as much flexibility in perspective and possibility as you do when you are just beginning? Aha! And here, my friends is the key to this whole thing…

YOU CAN BE A BEGINNER WHENEVER YOU WANT TO!

Each day. Each moment. Each activity. Each interaction with a friend or family member. They are all beginnings. You are free to begin again and again and again…..

 

  1. Psychologist Robert Bjork researches what he calls, “desirable difficulties” or those challenges that are just hard enough to facilitate learning.
  2. Talib (2012). Anti-Fragile: Things That Gain from Disorder. Random House.

Learning to Be Uncomfortable

stormy skies-rooftop

It is always striking to me how quickly my mind seeks to avoid uncomfortable sensations and situations. For example, when I start to feel cold: I reach for a sweatshirt or gloves; when I feel hunger starting in my belly: I start to think about food and how I will get it, or what my next meal will be; if I feel awkward in a social setting: I question leaving that setting or the healthfulness of my relationships with the people around me. I don’t know about you, but the more I am aware of these tendencies, the more I kind of feel like a big baby when it comes to my behavior and reactions to my environment. It is like I am intolerant of anything less than being full, warm, and perfectly loved! I am constantly seeking pleasant sensations and trying to avoid painful ones. Allowing both types of experiences and being present for both, however, is often much more empowering of a practice. As Sharon Salzberg writes in her book, Loving-Kindness: The Revolutionary Art of Happiness, “When we make the courageous choice to be still, rather than running away, we have the chance to establish a relationship with what is.”

Another thought that this brings up is this idea of mental unrest. I was recently at a dharma talk where this was explained as the mind’s tendency to be dissatisfied. The speaker described this feeling as a low-grade, almost ever present rub of discomfort. It is like the mind is always a little bit uneasy and looking for greener pastures. There is always a little something that is not quite right according to the mind and, if given the chance, it seems like that is what is fixated on (in psychology this is often called our inherent, “negativity bias”). Going back to the sensory world for a moment, I am noticing these phenomena more and more as I reengage in the work world doing some part-time farming work and part-time baking/prep-cooking. For me, the farming work and environment is perhaps the most lucid example of the mind feeling discomfort and trying to avoid unpleasant sensations. Take the temperature for example. As I am learning, April and May in Wisconsin is a flurry of unpredictable weather patterns. Especially when you are doing farming work in the great outdoors, you are at the mercy of the off and on rain and hugely fluctuating temperatures.  Also, despite my best intentions at dressing in layers and warmly, there are always opportunities to feel cold on the farm: there is the wind blowing in your face as you are harvesting greens outside, the rain soaking your clothing as you carry bins of produce from the field, and of course the numbing cold of the wash water used for salad mix and cut spinach and in which you must repeatedly and patiently dunk your hands in order to clean these delicate greens to be ready to sell. I find that my brain screams the loudest with discomfort during this last task. At some point, inevitaby, my fingers lose dexterity and my digits become like clumsy blocks fumbling with the opening of plastic bags and tools and door handles. If the need arises to go to use the restroom, I end up struggling immensely with the seemingly simple demands of things like pants zippers and buttons. Yes, there is patience to be learned, humility, and the acceptance of being uncomfortable.

I do not think that I am good at being uncomfortable, yet. But, I am supremely grateful that I am starting to have the ability to at least name the sensations that I am experiencing. With naming and recognition, I find there is a certain empowering awareness that then allows me to make more of a conscious choice in how I will react to these feelings: I can acknowledge the physical or emotional discomfort and attempt to just be with it in the moment instead of reacting on instinct, fleeing the situation or stimulus, or expressing my immediate discontent. I also gain the choice to avoid sensations that are particularly unpleasant or upsetting, but in a much more calm and calculated (less reactive) manner. As described in a skills workbook for Dialectical Behavior Therapy (DBT) (titled: The Dialectical Behavior Therapy Skills Workbook), learning distress tolerance can enhance one’s ability to deal with difficult emotions and circumstances. To reiterate this concept simply: It is important to be able to tolerate distress in a variety of settings. For particularly hard emotions/sensations, the advice given is to follow a progression of: distracting oneself, finding ways to relax, and then engaging in positive coping practices. One idea therein being that distraction gives us a place to implicitly process events and feelings that may be too powerful to tackle head-on. This also gives us the chance to come down from the agitation and sympathetic arousal that such feelings can elicit so that we may make more constructive and responsible choices (i.e., positive coping). I would like to think that I am becoming more aware of these instances in which I am uncomfortable so that I may engage in more constructive ways of experiencing those particular sensations and emotions. It is good to learn that it is okay to be uncomfortable.

Holy Hill

Holy Hill church holy hill crutches

It is crazy to think that I spent 9 months out of this past year on crutches. Also, having spent 3 months of the prior year using crutches, that means that within the past two years, half of that time I have spent ambulating with the help of these metal tools. Many of the friends that I have made the past two years have spent more time with me on crutches than without. Some, still have not seen me able to walk on my own two feet. These crutches, these assistive devices, in many ways became entwined with my identity. Friends from school would affectionately remark that they could, “hear me coming,” as I made my way down halls and into and out of classrooms. I created a movement pattern of getting into and out of my car and how I would stash my crutches so as to make room for fellow passengers and also not restrict my back window. I became much more aware of how close or far I was able to park from buildings. I would literally plan my day around finding parking spots at school or in certain areas so that I could negotiate getting to and from places without having to crutch too far.

My methods for moving about in the world were also altered to accommodate the fact that when I was moving I did not have hands to carry objects; my hands were supporting my body weight on my crutches. I began using a shoulder bag with its straps around my neck as my “hands” so that I could carry things to use in front of me for cooking or without having to put a backpack on and off. My roommate at the time called this my, “kangaroo pouch.” I became pretty efficient and adept at navigating my life in this way and, perhaps inevitably, I became much less self conscious of the fact that I was using crutches. It was just a fact of my life and what others saw as a novelty or perhaps assumed was a short aid in a routine rehabilitation, actually became my norm.

The degree to which this was true, I think was most marked for me once I was finally able to wean off of using them about 3 months ago. I then spent about a month reflexively looking around for where I had set my crutches any time I would get up from sitting to prepare to move from one room to another or go outside. I was literally conditioned to use crutches as naturally as you move by walking within your every day life! Imagine that!

So, with that reflection on all that has transpired, I guess it is natural that I experienced some hesitance in how I would leave my crutches behind. In a very literal sense, what the heck was I going to do with these physical objects that had supported me for so long and on which I had so relied? I had no one to give them too. Donating them to a thrift store, felt only half right. I also had this fear in the back of my mind that I might need them again. How harsh would it be to get rid of them too soon only to find that I needed their support again. How do you move on from something like this…

This past weekend, I was able to make a symbolic journey to this church at Holy Hill to leave my crutches and cane behind for good. At this site is the Basilica of the National Shrine of Mary Help of Christians. While I am not of the Christian faith, I felt that this particular place was a powerful symbolic place to visit and at which to leave behind my crutches that were so a  part of my life these past couple of years. The history of the church is such that people come here on pilgrimages to be healed or as a thanks or declaration of healing. Many climb the stairs to the church on Holy Hill to leave crutches and canes and reflect on their own spiritual and physical journeys to health. I felt that the significance of this act would be appropriate given the experiences that I’ve just described. I walked up the stairs with crutches and cane in hand and placed them at the front of the basilica. I walked down the hill empty handed, but at the same time stepping forward into a new stage of my journey.

Walking up those stairs was pretty powerful…and walking down empty handed, so freeing. Even though I imagined these moments of walking for so long, they are sweeter than I could ever picture in my head. The feeling of the ground beneath both feet and the fact that I can move without staggered gait or hand-held assistance is still pretty incredible to me. Truly, to think about it I am still amazed on a daily basis. What a gift to be here in this body and with these abilities. I am so incredibly grateful to everyone who helped me get to this point and everyone who made space for me to negotiate through this way of experiencing the world. Thank you for all of the rides and doors opened and carrying my things. Thank you for your kind gestures and words. I know I am stubborn and I know it was hard to get me to accept help. Thank you anyways; you should know that it meant so much to me even if I was unable to express it at the time.

With Love,

Leda

holy hill-stairs copyholy hill Leda and Jesse

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