How People React to Disability

handicap sticker

“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.

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How do you pass your time?

To me, time has been measured by these experiences that have touched my heart. This time of year time is expansive. Warmth permeates every crevice of the day and into the night. The sun pushes its luck and some days feels like a guest that has slightly overstayed her welcome. Right now is when I think of growth and the unfolding of a summer farming season. The heat loving crops are going into the ground: tomatoes, cucumbers, peppers, basil, eggplant…and my mind is already tumbling forward to the time when that first zucchini flower will appear and the first blush will creep into the strawberries. In the summer, I count time in how long it takes to cook a juicy burger on the grill and in tosses of the Frisbee before the light fades into the evening…

If I remind myself to live in the moment, I find myself relishing my current vegetable obsession: asparagus. I cannot believe how fast it grows! If it had not been me that had harvested the patch yesterday, I would be shaking my head at how many stalks got missed in that harvest. Today, the ambitious green spears climb towards the sun and it looks like it hasn’t been touched in a week! I’m finding all kinds of ways to love these tender little asparagi’s…marinated and grilled, lightly sautéed on the stovetop, and my new favorite way to enjoy it: cooked and pureed, then chilled as soup. In the spring, I am counting time in asparagus inches…

asparagus soup

To me, as the breezes cool and the rustle of leaves takes over the auditory landscape I can’t help but think of basketball. When fall sets in, the pull of my adolescent passion is ingrained in my memory. I hear the squeak of sneakers on hardwood floors and the sweet swish of the net as baskets are made. Sounds of high fives from layup lines, and whistles across gymnasiums….ah! I counted time in 15 minute quarters, two minutes until subbing in, 20 minute halves, and pickup games to 11…

Then, when the sun is on its way out, making shorter visits…I rely on the memory of warmth. The winter, to me, still means fires in a wood stove after a day of playing in the snow. Hiking in the mountains or skiing or curled up with a good book and a hot cup of earl grey tea with milk and honey. My winter is marked by softer time, like the gentle fall of a snow on pine and juniper branches…

How do you measure time? Is it in units of minutes and hours and days? As the cast of the musical Rent sings: “How do you measure a year? How about love?”

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

Lessons I’ve Learned from Taking Prescription Painkillers (Part 2)

IMG_0001

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

Okay, so you’ve been talked into the idea that it might be worthwhile to take medication for the illness or pain that you are experiencing. What drug will you take? The guiding factors will likely be: your health diagnosis and your doctor’s recommendation.

I think it is important to mention the weaknesses of each of these influences. Within the framework of Western medicine, diagnosis rules treatment decisions. For a multitude of reasons, you cannot get treatment until there is a name or a label for the constellation of symptoms you are experiencing. There seems to be an unquestioned assumption that this is necessary and also immutable. It might be worth thinking about the idea that the majority of this pressure may come from the insurance reimbursement system currently in place. The problem here is that as a patient it often feels like a sort of stifling procrustean fundamentalism. In other words, the process of diagnosis fits you and your symptoms into the box of an easily accessible, trendy, and often fast-acting treatment instead of fitting a treatment to you as an individual.

The idea of placing a diagnosis/label on your symptoms also may make it harder to treat or view flexibly as Dr. Seth Oberst describes here: Labeling, Experience, and Self-Regulation.

One doctor, speaking about brain disorders, says this, “All patients progress differently, and there is a spectrum of disorders. We cannot therefore say that all patients need x medication for x condition.”1 When was the last time that you were treated like an individual when you went to the doctor and not just, “a diagnosis?” I hate to be cynical, but I can’t think of a single time that I did not receive a diagnosis-first, patient-second recommendation or treatment plan from a doctor. Please let me know if I am wrong about this.

Not only may the diagnosis that you are given be problematic, but your doctor’s recommendation may be problematic as well (or at least biased). For a brief discussion on this, see: Lessons from Rx Painkillers Part 1.

So, if you must operate (ha!) under this model, how do you negotiate it? Well, if your experience is anything like mine (and I hope that some day I can help more people so it isn’t!) there will be A LOT of trial and error. Even though I am not thrilled with the diagnostic framework as it stands, I will save that battle for another day and use the diagnostic labels that I was given in order to better organize my decision making process for taking these drugs.

What follows was my journey of rehabilitating my knee and use of prescription painkillers along the way:

0-10 months post-ACL reconstructive surgery

  • Diagnosis: acute surgery recovery, patellar tendinitis/tendinosis, depression.
  • Medications: Hydrocodone, Sertraline

I was experiencing intense post-surgical pain that did not ease up and so was on a course of Hydrocodone as well as over the counter (OTC) pain killers and Non-Steroidal Anti Inflammatory drugs (NSAIDs). For a review on the difference between general painkillers and NSAIDS, see: Advil vs. Tylenol. I experienced some pain relief with the hydrocodone, but also had to put up with the drowsiness and nausea that I experienced from taking it.

I was going to physical therapy full time and also tried Autologous Blood Injection (ABI) (similar to Platelet Rich Plasma (PRP)) treatment. These treatments are becoming more common for tendinopathy and also knee cartilage degeneration.2 An attractive feature of these treatments is that you are not introducing foreign chemicals into your body, but reintroducing your body’s own blood or platelets in order to stimulate a healing effect.

I think it also noteworthy to mention that I took Sertraline (classified as a Selective-serotonin reuptake inhibitor (SSRI)) for the depression that I was experiencing from dealing with the chronic pain and injury. Sertraline also has been shown to have anti-inflammatory effects (kind of a bonus for me, right?)3

10-22 months post-ACL reconstructive surgery

  • Diagnosis: Patellofemoral Pain Syndrome (PFPS), synovitis
  • Medications: Naproxen, Diclofenac, Lidocaine

During this period I was going to physical therapy and seeing a new doctor who was prescribing new medications: Naproxen, Diclofenac, Lidocaine patches. I showed some signs of improvement (i.e., reduced inflammation) with the Naproxen and a little bit from the Diclofenac (topical Voltaren gel). However, my knee seemed to respond most to load restriction, consistent with the treatment paradigm described by Dr. Scott Dye: The Pathophysiology of Patellofemoral Pain. The Lidocaine patches were a bust for me as they only numbed my skin superficially and didn’t touch the deep joint pain I was experiencing.

0-5 months post-synovectomy/chondroplasty surgery

  • Diagnosis: acute surgery recovery, synovitis, Complex Regional Pain Syndrome (CRPS)
  • Medications: Piroxicam

During this time period, I was trying to heal from the acute arthroscopic surgery and treat the pain and inflammation that I was experiencing. My reaction to this surgery was not good and I developed what seemed at the time to be the recurrence of synovitis- experiencing pain and inflammation with any weight bearing. The Piroxicam did not allow me to weight bear on my leg, but maybe kept my inflammation from getting worse? It was hard to tell if I experienced any benefit from this drug.

6-12 months post-synovectomy/chondroplasty surgery

  • Diagnosis: synovitis, PFPS, CRPS
  • Medications: Tramadol, Pregabalin, Duloxetine

At this point it was clear that I was having a very negative reaction to surgery with severe continuing pain and inflammation in my knee. I still was using crutches because I could not weight bear on my leg without exacerbating these symptoms. In my mind, it was time for ANY treatment that held promise for possibly reducing the pain and inflammation. Enter my next drug cocktail: Tramadol, Pregabalin, and Duloxetine. Why these three drugs?

I was using Tramadol for short-term pain relief (it is an opioid, but some claim a less addictive opiate). For me, as well as other patients, a downside to this drug was having some pretty serious and troubling withdrawal symptoms from it. As stated succinctly: “Some people swear that this is the toughest drug that they have ever withdrawn from.”4

Pregabalin and Duloxetine act on the central and peripheral nervous systems (Pregabalin is classified as an anti-convulsant and Duloxetine is classified as a serotonin-norepinephrine reuptake inhibitor (SNRI)). I was taking these drugs for the chronic pain that I was experiencing with the idea that most (all?) of it at this point was neuropathic. After all of the drug trials that I have/had tried, the combination of these three drugs (in addition to a long period of very strict non-weight bearing) were truly what helped me turn the corner on healing my knee.

A Happy Ending…of Drug Taking

Luckily, I have been able to see progress and healing with my knee to the point that I am currently prescription drug-free! I am so thankful for this and I sincerely hope that these experiences will enable me to help others navigate their own medication needs for successful rehabilitation and pain management.

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

References

  1. Doidge, N. (2015). The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from Frontiers of Neuroplasticity. New York: Penguin Books.
  2. Colberg, R. E., and Mautner, K. (2013): http://lermagazine.com/article/platelet-rich-plasma-an-option-for-tendinopathy
  3. Sutcigil, et al. (2015): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2248234/
  4. http://mentalhealthdaily.com/2014/06/25/tramadol-ultram-withdrawal-symptoms-duration/

Lessons I’ve Learned from Taking Prescription Painkillers (Part 1)

D.A.R.E

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

My Personal Drug Story

Isn’t it funny how our society polarizes drugs into “good” and “bad” categories as if they possess purely benevolent or malicious intentions? I remember taking D.A.R.E. (Drug Abuse Resistance Education) classes when I was in middle school and we learned about all of the illegal drugs not to take: heroin, marijuana, methamphetamine, MDMA…I knew that these illegal drugs were bad (sarcasm, sarcasm, cynicism, cynicism…) but I was also raised in a family that eschewed the use of drugs in almost all cases. I don’t think I took cough syrup or cold medicine until I was in my late 20’s. Even then, I felt guilty every time I did!

So, I learned at an early age, drugs = bad. This brief context of my socialization surrounding drugs, will hopefully set the stage for the following account of my experiments with a long list of analgesic (i.e., pain relieving) drugs to treat knee pain. I do not view drug taking (no matter the legality or purported “safety” of the drug) lightly. I tried all of these different drugs as a very serious attempt to alleviate pain and, believe me, drugs were not the first thing that I tried! That being said, I hope to also communicate some of my newfound appreciation for drugs when used as one tool in a broader treatment plan and not a be-all-end-all-cure-for-what-ails-you.

Keeping in mind that before three years ago, I rarely used drugs: I’d take Advil or cough medicine maybe twice a year for a bad headache or cold. Since the injury to my knee three years ago, I’ve tried all of the following prescription drugs for pain relief or anti-inflammatory properties and some for months at a time! Seems crazy, right?!: Diclofenac (topical gel) (Brand Name: Voltaren), Duloxetine (Brand Name: Cymbalta, among others), Hydrocodone, Lidocaine (topical patches) (aka: xylocaine or lignocaine), Naproxen (Brand Names: Aleve, Naprosyn, among others), Piroxicam (Brand Name: Feldene, among others), Pregabalin (Brand Name: Lyrica, among others), Sertraline (Brand Name: Zoloft, among others), Tramadol (Brand Name: Ultram, among others).

Top 5 Lessons I’ve Learned from Taking Prescription Painkillers:

1-Drugs do not have just one effect (and thus, no drug is “safe”)

I don’t believe that any drug is “safe,” though some are clearly worse than others. All drugs have “side effects,” or additional effects to the desired one. The most common side effects that I experienced were: head aches, insomnia/nightmares/sleep disturbances, foggy headedness/inability to concentrate, constipation, and skin issues (irritation, rashes). It is common to experience gastrointestinal (GI) symptoms from ingested drugs and skin irritation from topical drugs1. For some of these drugs, the list of side effects is probably scarier than what they claim to treat!

*Please note, though I believe that drugs are not, “Safe,” sometimes drug taking is a calculated risk that makes sense (see #5)*

2- Doctors (MDs) have a limited understanding of the drugs that they prescribe

First of all, let’s get this elephant out in the open right away: randomized controlled trials (RCTs) are only as good as the sample size that they include, which is….drumroll please…predominately Caucasian males. So, in a system that idolizes the RCT for medication use and effectiveness, this should be a HUGE red flag if you are NOT a Caucasian male. For a good discussion of this issue as it pertains to women specifically, see: Alyson McGregor TED Talk.

This just reinforces the idea that each person reacts differently to drugs and is one reason why people get frustrated: clinical symptoms and disease presentation are often very different from the information gathered in RCTs. Also, there is still much we don’t know or that hasn’t been studied. But, that being said, this great unknown is also part of the hope that seems to buoy you as a patient, who has not experienced relief: maybe there is a drug (or something) that I haven’t tried that can help me!

Furthermore, doctors are human and so their recommendations are based on many factors OTHER THAN the patient’s well-being (e.g., personal preferences/biases, drug company lobbies, political pressures, reimbursement rules, bias against herbal/alternative remedies, bias towards RCT knowledge and away from experiential knowledge, fear about litigation, ignorance of alternative effective treatments, pressure to prescribe, etc.). Not all doctors are up to date on their knowledge of the biology of pain and effective approaches to treating pain (even those who claim to be pain “specialists”!)2.

3- Drug taking behavior is NOT rational

When you are in pain that is severe in magnitude or duration, the mindset is often, “I will take (or do) anything to get out of pain.” This includes swallowing whatever pill the newest specialist or doctor prescribes no matter how long the side effect list is or how much it will cost after your insurance pays their portion. The coercion and seduction of a pill, a drug, a “silver-bullet” is very strong in itself, but becomes near impossible to resist when you are experiencing the raw desperation of sustained pain (i.e., chronic pain states: Making A Difference in Chronic Pain).

Drug taking can be as much about fear of symptoms as prevention of symptoms. It is a tricky psychological situation when you are in the midst of experiencing raw pain. Any pain you already, “know” is better than a feared, “unknown,” pain. Maybe, this is our inherent negativity bias speaking: I know I can put up with what I’ve already been able to tolerate, but not if it got worse…

At one point, I was experimenting with different doses of Tylenol, Advil, and Tramadol to help with my bouts of intermittent nerve pain. I finally settled on taking one Advil in the morning and one Tramadol and two Tylenol at night to help me sleep. The only reasoning that I had for this particular number of pills, combination of drugs, and timing is that I had what I thought was a, “better” day and night of sleep one day that I did this so this became my routine. I didn’t want to change it for fear of making my pain worse, and indeed I continued this regimen for the better part of three months! I won’t pretend that there was much logic to these drug taking decisions of mine.

4- It is often hard to tell whether a drug is helping

This was especially true when I was taking multiple medications concurrently (should be obvious, I know). But, even without that complication, it is often difficult to assess if a drug is helping. There are so many factors that play into one’s experience of pain or any other symptom that is the target of a drug: strength of stimulus, sensitization of nervous system, context or environment of stimulus, diet, exercise, sleep, perceived self-efficacy to cope, perceived social support, work/disability/compensation issues, comorbidities with psychological illness (e.g., depression, anxiety), etc.

It is almost impossible to be a good scientist when it comes to yourself.

5- Drugs are useful in treating pain (…in some cases)

Complete avoidance of drugs is just as dangerous a position as over-reliance on drugs. There is some evidence that appropriate use of analgesics post-surgically or even prophylactically can potentially prevent the development of chronic pain3. As the author of this study notes, “…the one factor that’s most often been shown to predict chronic pain is pain itself — pain predicts pain. At the present time we don’t know whether acute pain causes chronic pain, or if acute pain is simply correlated with long-term pain, and this is really important, because if it is causal, aggressively managing acute post-surgical pain may reduce the risk that it becomes chronic.”3. Once you’ve had pain for a while, you’re brain gets sensitized, and it’s harder to get rid of (your brain learns how to be in pain)4.

Drugs should be used in certain situations. I repeat: drugs were helpful to me. Despite all that I’ve written here about the negatives of drug treatment for pain, I do believe a few of them served a key place in helping with my recovery. However, they were only one component to many that it took to help me get on the path to recovery. Over-reliance on drugs is just as dangerous as under-reliance.

Just because you have tried a drug for your pain, doesn’t mean you have tried the right drug. Now, I know I just spent a lot of time talking you out of taking drugs, but let me be clear that my main objection is that these drugs are not necessarily prescribed intelligently and there is much misinformation out there. For example, the orthopedist who gave me the diagnosis of CRPS would not prescribe me a neuropathic pain drug. CRPS and other neuropathic conditions can respond to certain drugs (neuropathic drugs) and the drugs that I was asking for were the ones that research trials supported using as first line treatments5.

There are many different drugs designed to treat pain and there are different types of pain. This topic is a Pandora’s box of information, but suffice it to say that finding an effective treatment for your pain probably depends on if it is orthopedic/structurally related, neuropathic, intermittent/constant…you get the idea. Pain is not just pain.

So, that begs the question: when are drugs necessary? I am going to harken back to a psychology definition that I tend to like: To answer the question of whether behavior falls into the realm of psychopathology (i.e., mental illness), you must answer the next set of questions: Do the behaviors negatively impact your quality of life to a great degree? Do these behaviors/thoughts negatively affect your ability to do your job or fulfill your responsibilities? Likewise, do the problems that you are experiencing (e.g., pain) impact your life to this great of a degree and have you tried safer alternatives? If the answers to these questions are: YES, then taking drugs might make sense. Ultimately, this was the decision that I came to for myself.

I hope that my experiences as someone suffering from chronic pain as well as a student within the healthcare field may help you or someone that you know to at least be mindful of the decisions that you are making regarding taking drugs (mostly applicable to analgesics). Also, check out PART 2 where I discuss the specific medications that I tried and what I personally experienced with each.

**Note- these are my personal experiences and should not be taken as medical advice. All prescription medications that I refer to are drugs that I was prescribed by a doctor for orthopedic and neuropathic knee pain following two different surgeries within a three-year period. **

References

  1. Ratini, M. (2014): http://www.webmd.com/a-to-z-guides/drug-side-effects-explained
  2. Moseley, G.L., Butler, D.S., Beames, T.B., and Giles, T.J. (2012). The graded motor imagery handbook. Adelaide, Australia: NoiGroup Publications.
  3. Katz, J. (2016): http://www.bodyinmind.org/managing-pain-after-surgery/
  4. Butler, D.S. & Moseley, G. L. (2003). Explain pain. Adelaide, Australia: Noigroup Publications.
  5. Finnerup, N.B., et al. (2015). Pharmacotherapy for neuropathic pain in adults: a systematic review and meta-analysis. Lancet Neurology, 14 (2), pgs. 162-173.

Emptiness Fills Me Up

When did I notice that this could be so powerful? It all started as an experiment, for me. A way of taking a break from the freak-out party in my head that was planning and calculating and feeling pain- pain from injury and moving and missing friends. I began meditating because, I thought, “Why not?” I took study breaks from anatomy and would sit cross-legged in the grass outside the Medical School library. I would sit for 20 or 30 minutes and just breath. Feel the sun on my face, feel the air entering my nostrils and my belly moving out and in. Most of my life is dedicated to filling every last spare minute with productive activity: school studies, reading books about interesting stuff, trips to the gym to lift weights, cooking fresh food from farmers’ market veggies, hanging out with friends. As I get caught up in this racing around lifestyle, though, what I’ve learned is that instead of filling me up, I am giving energy to these things. As I sit, I am gaining back some of my human capacity. I am cultivating stillness and allowing myself to feel balance. I have had periods where I have tiptoed too close to the edge and for me meditation helps to keep me from not going overboard on doing. It helps me to slow down and remember what is important in my life broadly. It allows me to enjoy my interests and relationships and learning and adventuring. I need the emptiness. It fills me back up.

We are all asleep in this drunken routine of life and what does it take to wake up? It seems near impossible to pause once you are on the wheel: work, school, leisure time- must travel, must go out, must consume, must engage in distractions. That is part of the magic in meditating (or serious illness/injury for that matter). It inserts a forced pause in automaticity. Time out. Stop, Look, Listen.

I seem to recall a similar feeling during lucid dreaming; it shows you the transcendence that is possible when awareness is brought to this world seemingly beyond our control. You do have control of your life. You do. You have choices every second of every hour of every day. But, I know, it is very hard to step back, to really remove yourself from the pulls of your environment, peers, family, self, desires and take a good hard look at what you want and who you are. To see where you are you have to stop. Sometimes, that stopping is the stuff of tragedy. Ultimately, though, I am finding that this emptiness fills me up.

The Dangers of Turning Off Your Brain

broken guitar string

I learned an important lesson yesterday. No matter what you are doing, it is never okay to completely turn off your brain. Let me explain: I am learning to play acoustic guitar this year and have found the process both extremely empowering and at the same time infuriatingly humbling. Because I am not only brand new to playing an instrument, but also brand new to learning about anything musical (My lowest grade in college was in a music history class, nope I’m not bitter…), I feel kind of overwhelmed with all that I don’t know. Within the domain of music, I mostly feel like I am stumbling through a foreign language in a foreign country.

This experience has helped me to empathize with people who just want to be told exactly what to eat to be healthy. Or, exactly what exercise regimen to follow. For me, those are silly requests because I find that there isn’t a way to distill down all of the food/nutrition/cooking knowledge or strength training/exercise/body mechanics knowledge into one plan that will be universally applicable. That being said, if you give me some personal information and about 30 minutes with a pen and paper, I’d feel pretty comfortable generating a nutrition and fitness plan for you. But, if this is not your domain, this has got to be incredibly overwhelming. I think I get it now.

By analogy, though, this is exactly the simple fix that I am asking for in the music domain. Here is my exact train of thought: “I don’t want to learn to tune, what scales mean, what off-key sounds like….just tell me how I can get my rendition of Wagon Wheel to sound super duper twangy and awesome!” I’m sure that all the people who have tried to help me with my guitar playing progress are rolling their eyes and nodding knowingly. I’m pretty frickin’ stubborn. Okay, so, back to my lesson-learning of yesterday. I was really excited about a few new songs that I want to learn on guitar and I was just sitting down for what was sure to be an epic practice session…

I strummed a few chords and noticed that my guitar was out of tune (at least I know when it sounds bad, that much is true). Unfortunately, my approach has been that I can’t be bothered to learn how to tune my guitar by ear. Not going to frickin’ do it! Well, I finally paid the price for being stubborn and refusing to learn about these things. So, there I was trying to tune my guitar (there was no-one around who could take my up on my “pay to tune” offer) and was using this little automatic tuner that you clip to your guitar to register the notes. I was super annoyed because I feel like every time I try to tune a guitar I’m doing it for the first time and whichever direction I turned the knobs I couldn’t get the letter on the tuner to say the letter that I knew the string was supposed to be tuned to. I had spent zero time trying to “hear” the notes and so all I heard was that this particular string sounded terrible. This just made me more impatient and I was turning the knob all sorts of ways right and left and I couldn’t even get the letter right and I can’t hear what note is what. I was cranking away and I had no idea what the string was tuned to or which direction I was going and so at some point I just started cranking away big cranks in one direction figuring it had to end up somewhere (stupid, I know, stupid…). When, all of a sudden, “Twang, snap!!!!!” and I had broken the string. I had cranked so hard on this one particular string that I had broken my string instead of getting it in tune. Well, needless to say, I felt like an idiot and then I just had to laugh at myself. That is what I get for being so stubborn and I guess now I am more motivated to learn how to tune my guitar.

My mom used to say, “not to decide is to decide.” In other words, you cannot just throw up your hands and give up responsibility for your choices. If you choose to ignore the fact that tuning and practicing rhythm and hearing notes are integral to learning to play a musical instrument, then you’re bound to break some strings. I guess what makes me think of this saying is the idea that it is okay to get some help along the way. You are bound to need some teachers and coaches when you are learning a new skill. But, they can’t do all of the work. You have to meet them half-way and choose to be present and engaged to the best of your ability. Even if you feel like you have no idea what is going on, that is better than spacing out and expecting someone else to do everything for you.

My new approach to tuning and hearing notes is that I will try to practice this just a little bit every time I play. I don’t have to get it all at once. It’s not really rocket science. Do some work and let yourself have some fun. But, whatever you do, don’t turn off your brain!

still broken string

Choose Your Shoes Wisely, My Friend

NewBalanceonWood

You can tell a lot about a woman by the shoes in her closet…or a guy by the shoes in his closet. I’m not talking about fashion sense, people. Your choice of shoes directly reflects one of the most important health decisions that you make every day. Shoes are a crucial player in how our bodies experience forces from the outside world. These forces that we are subject to (or subject ourselves to in various ways) are critical to how our bodies manifest health, or illness. For a fantastic discussion of this idea, and a more in depth look of the interplay between us and our environments, see: Move Your DNA. But, back to the topic of shoes…they are the mediators between your body and whatever surface that you choose to walk, run, skip, or saunter over. Shoes are like the relationship counselor and if you want your body to agree with that asphalt, you had better have a good one (or two)!

I will admit that I probably spend an excessive amount of time thinking about shoes. For example, when I find myself people watching in a public place (as anti-social as this sounds), I would rather look at the types of shoes that people are wearing than scan the crowd for a friendly face.

I will not claim to be an expert on which exact shoes are ideal for you. But, that won’t stop me from critiquing shoes that I am pretty sure are terrible for you. First up, and an easy target at that, are flip-flops. I am going to mainly defer to well-known physical therapist and mobility expert, Kelly Starrett: Athletes Don’t Wear Flip-Flops. But, just to add insult to injury: I think that flip-flops are just the epitome of American consumerist, throw-away goods. They’re made cheaply. The little thong part breaks. Any sort of rough surface or object will gouge out little divots in the spongy soles. They’re just garbage.

Another awful type of shoes to subject your feet and body to are high-heels. To put it bluntly, long-term usage of high-heels can lead to weaker muscles around the ankle and foot as well as shortened heel-cords and reduced ankle dorsiflexion (see recent NY Times article).

Now that we have narrowed the playing field a little bit, you will have to make the key shoe-decision of whether you’d like a specialist or generalist type of shoe. Now, there are arguments to be made for both pursuits (sorry diehard CrossFitters, but Olympians, musical savants, and nobel prize-winning scientists are not generalists; there’s something to be said for specialization if that’s your aim). I will leave the decision of specialization up to you. However, it is pretty obvious that if you choose to pursue certain physical endeavors, you will probably be better off having a pair of shoes just for that activity (e.g., soccer, biking, weight-lifting, tennis, basketball…running is somewhat controversial; some argue that shoe-less, i.e., barefoot, running is best: see Born to Run. But, that’s a topic for another day).

Some people are die-hard generalists. Here is one of my favorite quotes of all time from Robert Heinlein:

“A human being should be able to change a diaper, plan an invasion, butcher a hog, con a ship, design a building, write a sonnet, balance accounts, build a wall, set a bone, comfort the dying, take orders, give orders, cooperate, act alone, solve equations, analyze a new problem, pitch manure, program a computer, cook a tasty meal, fight efficiently, die gallantly. Specialization is for insects.”

If you are really planning on doing all of the things that Heinlein suggests, than your shoes had better be up for the challenge. As a generalist, you are going to want to go with a, “workhorse,” shoe like my personal favorite: the New Balance WX20 minimus shoe (I have no financial ties to New Balance, I just honestly am in love with this shoe. It fits well and feels good. It is a generalist and “minimalist” shoe and it works for me. I wear this shoe any chance I get).

One last thought on shoes that I promise will be useful for athletes as well as those who don’t consider themselves athletes: I am 99% sure that you can improve upon your shoe-tying skills. Yes you! This simple technique has helped me reduce all that time I used to waste re-tying laces that had come undone: How to Really Tie Your Shoes.

What am I doing with all the time that this has freed up? Well, thinking about shoes of course…

NBTops

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