Resilience: Continuity, Connections, & Adapting

I have read several articles about resilience over the last few months.  Dennis Rensel defines resilience as “continuity and recovery in the face of change”.[1]  In March of 2020 our lives irrevocably changed. Lockdown was imposed to limit the spread of COVID-19.  New York like many other states went into lockdown and “on pause”.  Our daily lives and routines were disrupted. City streets that were typically bustling with people became silent.  Businesses closed. Personally, I only ventured outside to go to my mailbox.  At the start of the Pandemic, I felt like I was living in the frame of a paused movie. 

Continuity is defined as maintaining an uninterrupted state of activity.  As days and then weeks passed after the initial lockdown, I found I maintained continuity by having a schedule and a routine. I woke up at a certain time.  I was fortunate that I could work from home.  I had phone calls to make and assignments to complete. I found myself applying principles from an article I read by Wendy C. Hildenbrand entitled “Let’s Start Here: Relationships, Resilience, Relevance.”  The article offers principles for adapting to change in personal and professional contexts. Ms. Hildenbrad’s article suggests that effective adaption includes developing and preserving social connections and relationships.[2]  Relationships in this context refer to family relationships, friendships, and acquaintances.

I had a list of people that I would contact and connect with on a regular basis. The connections could happen over the phone or over the computer.  I found that a simple ten-minute conversation provided me with a sense of relief, reassurance, and comfort. The topic of conversation was not as important as the connection.  In crises like the Pandemic social connections can help us to navigate through times of uncertainty and through fear of the unknown by offering mutual outlets of support and encouragement.

When the lockdown occurred, the healthy lifestyle I was trying to implement also went on pause.  I lost my resolve to eat healthy and exercise.  I felt a strong sense of apathy and indifference.  I needed time to recover my sense of purpose, focus, and determination. Staying connected to the people closest to me helped me to regain my sense of motivation to pursue my goals again. 

The experience of the Pandemic has brought up feelings of confusion, frustration, loss, and uncertainty.  Many of us are still trying to process the long-term effects and consequences that have resulted from the Pandemic. 

Ms. Hildenbrand’s definition of resilience includes the idea of “Persisting, adapting, and moving forward.”[3]  Resilience is about learning to positively adapt and respond to permanent changes including earth-shattering disaster, illness, separation, and death—but what do the principles resilience look like in practice?

The foundation of effective resilience and coping skills includes allowing for the space and time to process the breadth of changes that have occurred.  It includes developing and implementing positive strategies to take care of the mind and body.  Examples of positive coping strategies include practicing meditation, engaging in some form of exercise, and developing a network of social support.  

Continuity, connections, and relationships are important components of resilience.  There is a final component of resilience that I would like to introduce and emphasize.  Adapting to massive and permanent change means embracing a sense of hope despite facing adversity.  Hope emerges after a time of suffering.[4]  From hope, motivation is born. The combination of hope and motivation will support us to persist in times of doubt and uncertainty.

[1] Rensel, D. J. (2015). Resilience-a concept. Defense A R Journal, 22(3), 294+.

[2] Hildenbrand, W. C. (2019). Let’s Start Here: Relationships, Resilience, Relevance. AJOT: American Journal of Occupational Therapy, 73(6), NA.

[3] Hildenbrand, W. C. (2019). Let’s Start Here: Relationships, Resilience, Relevance. AJOT: American Journal of Occupational Therapy, 73(6), NA.

[4] Subandi, M. A., Achmad, T., Kurniati, H., & Febri, R. (2014). Spirituality, gratitude, hope and post-traumatic growth among the survivors of the 2010 eruption of Mount Merapi in Java, Indonesia. Australasian Journal of Disaster and Trauma Studies, 18(1), 19+

Remembering the Mission: The Why and the Importance of Engaging

Approximately 8 years ago, I participated in a conference where a diverse group of people with disabilities, their family members, and professionals came together for a day to learn from each other. The conference was designed to promote new ways to connect, form a common mission, and engage.

Prior to attending the conference, I wrote an article about the concept of Burnout and the qualities of burnout that professionals and individuals sometimes fail to recognize when it happens. In short, Burnout refers to long-term exhaustion and disengaging from subjects that are important to us. When a person experiences it, it can cause us to pause and question: “Why am I doing this?”

One of the opening exercises at the conference included a go- round where people were asked to name a person or an event that brought them to the disabilities field. Before I responded, I thought about every person, -past and present who has stood and engaged for me and with me. I stand for every child and adult behind me.

When I started in the disability field, I saw attitudes, environments, and systems that I wanted to influence. I wanted to make my community more inclusive and the communities around me more inclusive. Inclusive to me means creating easier access and participation – both within built environments and simultaneously creating full involvement with my peers, both with and without disabilities. I don’t want to just get to the door, I want to get in and engage.

The concept of inclusion has been around for decades and yet many people with disabilities still fight to not only get in, but to also engage. True engagement to me means participating with every person within a given environment.

Change starts when people come together with a new or reignited spark of passion. The sphere of change grows when people take that passion and start to engage. It happens when we start to observe what exists – when we see the programs and the people that are including people with disabilities every day and it’s just a part of everyday practice. The sphere of change continues to grow when we connect with the people who are doing it and ask, “How do I do it?” For successful coalition development, groups of people need to come together with a common goal and engage.

For true inclusion to take root and spread, people need to observe their communities and identify what resources currently exist, gather data, engage, and form nontraditional partnerships between individuals, families, schools, community-based organizations, and businesses to expand what is working.

If you are tired, remember what brought you to the profession. Remember who brought you to the profession, help others that want to not only get in, but actively engage.

The Physician as a Partner: Beyond Rapport to True Collaboration

We’ve all gotten that standard form letter that contains the dreaded line, “your physician will be leaving.” In my case, the recent letter announced that my physiatrist, Dr. A. would be leaving the region marking the end of a multi-year relationship. The unexpected news caused me to stop and reflect on Dr. A’s role in the development of my walking program. What established the positive working alliance between us? When I originally embarked on my journey to walk device- free, I did not know what a Physiatrist was or what a critical role this specialty would play in my progression.

Physiatrists focus on restoring and maintaining optimal body function. They closely supervise and manage the medical complications associated with Cerebral Palsy and other disabilities that impact mobility and muscle movement. They treat acute and chronic pain and musculoskeletal problems such as with the back and neck. Physiatrists diagnose conditions, oversee treatment, therapy, and medications.

My treatment course frequently changed with Dr. A’s guidance. Scores of literature confirm that in order for an effective partnership to be formed, first a rapport has to be established. My relationship with any physician starts out with a sense of wariness.

Did they read my file? Do they know what my issues are? Will they be willing to adopt a progressive approach in the management of my disability? Will they accept and embrace my goals for improved mobility and greater independence?

I will never be a passive patient. I am an active contributor in the decision-making related to my medical care. I work hard to find physicians who will engage and collaborate with me. I want to work with professionals who will actively listen, check my understanding, and endorse inquiry, mutual problem-solving, and decision-making. I want them to have the same goals and for us to come to agreement on the treatment course together. Coming to this desired state of agreement or consensus is not always neat.

When I first met Dr. A., there was not a “getting to know you.” stage. I was in significant pain from musculoskeletal problems in my back. I had only one goal – to make the pain to stop. It did not matter what it took. Dr. A., at my request, took charge and conferred with other professionals I trusted including my Neurologist and Movement Specialists.

She learned about my therapies, and fitness and walking program, and the exercise approaches being used, and built upon efforts already underway. When we discovered that I had three herniated discs in my back, existing exercises were modified under Dr. A’s guidance and pain management strategies were employed.

What I found most impressive was the level of consideration that Dr. A displayed for my observations and opinions. While she certainly took into account the observations of the other professionals working with me, I was always the final decision-maker about what would or would not happen next.

She completely gained my trust and esteem when I discovered that she provided her personal cell phone number to my Movement Specialists, indicating that they could call her with questions or concerns. She also steered me,or those working with me, in another direction if we were not seeing expected results or if she observed well-intentioned efforts were not having positive outcomes.

She also guided me on what information would be helpful to her. The use of video became a critical tool in our work. The video clips showed specific exercise interventions, progressions in time with specific angles and sequences of movement. The video provided visual references that my doctor would not see during short office visits. The video gave Dr. A. a better diagnostic and assessment tool. When I walked in for my appointments, I knew Dr. A. had watched the footage. I knew from the questions she asked and from the movement sequences that she would have me perform.

Dr. A. became and stayed a thoroughly engaged and active partner in my care. Our partnership is a model for others. An effective working alliance is built from “advance planning, gathering information, and building a framework for discussion” between a physician and their patient. This principle is emphasized when a healthcare provider has to relay complex information or “bad news”. [i] Dr. A. knew I did my homework. I would read about all of the treatment options or interventions proposed and she would be ready when I walked in the door to respond to my questions.

Healthcare providers are taught to assess how much a patient knows about their disability or condition. [ii] Dr. A. knew that I knowledgeable about my Spastic Cerebral Palsy. She also knew that I wanted to learn more. One of the best responses a patient can hear from their Healthcare provider is, “I don’t know, but I will research it.” Dr. A. said this to me more than once and then did the research.

A principle emphasized in Healthcare education is supporting next steps and follow-through. [iii] Dr. A. ensured that my Movement Specialists and other professionals working with me had the information and guidance that they needed to implement program or exercise modifications to address challenges I might be experiencing.

The highlighted principles can be applied across numerous Medical, Health, Fitness, and Wellness Disciplines. The two most aptly applied principles to form an effective working alliance are: listening to the client/patient and supporting them. Dr. A. did this in our work. She supported the development of the foundation for positive health outcomes and an effective working alliance; moving beyond rapport to true collaboration.

[i] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

[ii] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

[iii] Communication strategies for difficult physician-patient interactions. Maureen Leahy. AAOS Now. (Apr. 2012) p14.

This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability ( NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

The Importance of Social Support Following Injury

On November 11, 2015, I sat on a medical exam table waiting for the orthopedic surgeon to return with the results of an MRI. In the span of two months, I went from walking between two and three miles a day to barely being able to walk across a room. The cause of this decline was not clear. The speed of the decline and my lack of physical ability was alarming.

I immediately scheduled an appointment with my primary doctor. I had multiple appointments with different doctors and specialists. I was eventually referred to a neurologist and an orthopedic surgeon. Originally, doctors thought the rapid decline in my walking ability was directly related to my Spastic Cerebral Palsy (CP). A series of neurological tests showed that this condition was not CP-related.

As I sat on the exam table waiting for the MRI results, my mind raced. “What would the tests show?” I was trying to keep my sense of anxiousness under control. The exam room door abruptly opened and Dr. Dixon walked in with the MRI scan.

“What did the scan show?” I asked fearfully. Dr. Dixon’s response made me want to laugh and cry at the same time. “Kerry, you have a broken bone. The pain in your foot has nothing to do with CP.” I felt a simultaneous sense of relief and dread wash over me. The good news was that I did not need surgery. The bad news was that I would spend the next eight weeks in a cast.

I stared intensely at Dr. Dixon and asked “What caused this?” He replied that I had a stress fracture in one of the bones in my right ankle. A stress fracture is a fancy way of saying I had a crack in my ankle bone. Stress fractures are frequently caused by overuse. The exercise program I had worked so hard to master in order to achieve my goal of walking device-free likely contributed to the bone injury. My relentless effort to ascend and descend inclines (Hills) without support may have put excessive pressure on my ankle bones. Dr. Dixon advised me that I should permanently stop aggressive exercises such as hill climbs and descents.

I listened to his expert advice knowing that everything I had been working towards for more than 10 years would now have to change. The future goal of my walking program would shift from walking device-free to consistently improving and maintaining my mobility. I was put in a cast and prohibited from bearing weight on my right leg with the knowledge that my mobility would be restricted over the next eight weeks. I knew I would significantly lose the muscle mass I had worked hard to gain. I also knew that I would lose many of the skills and movement patterns I had worked so hard to attain.

Research clearly documents that participation in exercise and sports increases the chance of suffering an injury. As I watched the cast being applied from the base of my knee to my toes, I realized that I was not at all ready for the recovery process I was facing. I had to be assisted off of the exam table to try to find a new sense of balance with the extra height and weight of the cast. To move, I had to use the strength of my upper body and the poles and drag my foot. Initially I could not stand up with the cast even with the support of my poles.

I understood the causes of injury such as muscle imbalances, overuse, and over-training. What I did not know but learned about throughout this experience was the psychological impact of injury.

Research has shown that when an injury is sustained a person experiences “stress from the activity disruption, a sense of separation and isolation, anger, and irritability.” [1]  Over the eight weeks that I was in the cast, I experienced many combinations of these different emotions. When I broke the bone, I felt restricted. I could not move the way I wanted, or go where I wanted to go. Over the eight week period, I temporarily lost my sense of independence and choice.

Research shows that social reassurance and a support network is critical to the recovery process for an individual or athlete after an injury is sustained. [2] During the eight weeks of recovery, I had family and friends who came to visit regularly and made sure my house was clean and that I had groceries. Family members rotated and rearranged their busy schedules to give me a ride to and from work every day. I was fortunate that I had this committed support to hasten my recovery. However, even with all of this support, I still struggled. I wanted my typical abilities and independence to return faster than it would. Dr. Dixon warned me that my physical recovery would take over three months.

Research shows that a support network including family and friends can help an individual or athlete re-frame and re-evaluate their injury. [3] In my case this meant that people in my support network helped me to remember that my injury was short-term. On those days when I was feeling isolated, anxious, or frustrated, it was helpful for me to hear “Kerry, it is just a broken bone. You will heal.” At the beginning of my recovery, when I heard positive messages such as “the bone will heal”, it reminded me that the injury was indeed short-term. With this positive reassurance, I wallowed less in my feelings of isolation, anger, and irritability.

Social support from my family and friends was also critical at the later stages of recovery. Family members were present at all of my follow up medical appointments. Having people who knew my history and who could reiterate and reinforce my previous level of function was important for doctors who did not know my history. Family members helped me to share factual details with the doctors and also helped me to monitor symptoms, such as swelling, which could impede my recovery.

Research also shows that connecting with a person who has been through a similar injury is helpful. Unfortunately, I did not have connections to people who suffered the same injury. I would have asked “What strategies did you use to get through the injury? How did you handle the mobility restriction? How did you combat the frustration and anxiety?”

I learned many valuable lessons from my injury. One of these lessons is the importance of having a support network. Tell me, Wiley’s Walk readers, who are critical people in your support network? How has your network supported you in a time of injury?

[1] Fernandes, H. M., Reis, V. M., Vilaça-Alves, J., Saavedra, F., Aidar, F. J., & Brustad, R. (2014). Social support and sport injury recovery: An overview of empirical findings and practical implications. Revista De Psicología Del Deporte, 23(2), 445-449.

[2] Fernandes, H. M., Reis, V. M., Vilaça-Alves, J., Saavedra, F., Aidar, F. J., & Brustad, R. (2014). Social support and sport injury recovery: An overview of empirical findings and practical implications. Revista De Psicología Del Deporte, 23(2), 445-449.

[3] Fernandes, H. M., Reis, V. M., Vilaça-Alves, J., Saavedra, F., Aidar, F. J., & Brustad, R. (2014). Social support and sport injury recovery: An overview of empirical findings and practical implications. Revista De Psicología Del Deporte, 23(2), 445-449.

This article was originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability ( NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

The Knee Injury

Typically, where I live, there is a flurry of activity. There is a steady stream of people and traffic. Everything is in motion. In February, I was a part of that flurry of activity.  I went to work, I went to the gym, I had plans with friends… Then, one Saturday, I work up and had severe pain in my knee.  My right knee buckled.  I struggled to stand and walk.  The pain was severe enough that I knew I needed to see a doctor.

I scheduled a ride with Uber and went to the local Urgent Care that had an orthopedic clinic.  As I waited for my name to be called, I mentally prepared myself for the conversations that would take place with the medical staff.  I had never seen medical professionals in this practice. I had copies of the medical notes from recent visits to my primary care doctor with me to verify the past orthopedic issues from Spastic Cerebral Palsy.

My name was called and I limped down a long corridor.  The trekking poles that typically make my walking faster and easier, were hindering me now.  It hurt to walk.  When I entered the exam room, the nurse asked me to get up on the exam table.  I explained that I could not get onto the table because the table was too high and that I could not bend my knees or lift my legs high enough to get up on the table.  I knew if I made the attempt, it would jar my injured knee too much. I explained that I was in a lot of pain.  The nurse then asked on a scale of 1 to 10, what may pain level was.  I answered a 7.5.

She took my vitals and reviewed the medical records I provided.  There were discrepancies between the electronic record on her computer and the paper files that I supplied.  The nurse worked with me to correct the inaccurate information.  Errors included a list of incorrect medications.  For some reason medicine I no longer take remained in the electronic record.  The lesson:

– Always ask for a summary of every medical visit and share relevant information with new doctors and their medical staff.
– Ask for a copy of x-rays, and related test results, and
– Always share a list of current medications.

A Physician’s Assistant (PA) came to see me next.  The PA verified my medical history and said that I needed an x-ray of my knee.  I had to walk down another long hallway to get the x-rays taken.  The PA returned and showed me the test results.  The only thing the x-rays showed were signs of arthritis.  Due to my pain level, the PA thought I had a meniscus tear. Meniscus is a piece of cartilage in the knee that cushions and stabilizes the knee joint.  Signs of a tear include pain and swelling.  The PA was concerned that due to surgery I had on my hamstrings, the scar tissue could be hiding a potential blood clot.

The PA wanted to send me to another orthopedic clinic that was over 30 minutes away to have another set of tests done to see if I had a blood clot.  I explained that I did not drive.  I asked if there was a closer office or facility to get the testing done.

The PA asked me to call a family member or a friend who could give me a ride. I explained that I was not able to reach anyone; it was a Saturday after all.  I explained that my closest family members were over two hours away.  The PA scowled and said the only other option was the Emergency Room (E.R.).  I said I would take an Uber to the Emergency Room.  The PA did not appear to understand the challenges of not driving or the logistics transportation alternatives require.

I have not been to the local E.R. in a long time.  The triage nurse saw me limp in through the automatic doors.  The nurse got a wheelchair and had me sit down.   After completing the required medical forms, I waited to be assessed by the next set of medical professionals.

Time seemed to slow down.  I caught myself looking at the time approximately every ten minutes.  I tried to call a couple of local friends while I waited.  I could not reach them.  I did not know if I could walk out of the E.R. alone after the tests.  My knee really hurt.

A doctor approached me and said anti-inflammatory medication had been ordered to help alleviate the pain in my knee.   Another nurse came with a gurney.  I maneuvered myself from the wheelchair to the gurney.  The nurse wheeled the stretcher down several long hallways.  I ended up in a room with an ultrasound machine.  The ultrasound would be used to see if I had a blood clot in my knee and leg veins.

A technician performed the tests and I had to wait for the results.  While I waited, I tried calling family and friends again.  I could not reach anyone.  My anxiety increased.  More time passed and all of my calls to people rolled to voicemail.  I finally reached my brother who lives over two hours away. When he answered the phone, I felt a surge of relief.  He would drive up if I needed help.

The technician returned.  The test results showed that I did not have a blood clot.  I was fitted with a brace called an immobilizer.  The brace wraps around the leg from the mid-thigh to the ankle.  It has metal rods that go down both sides of the brace to immobilize the knee and limit movement.  I needed to find out if I could stand and walk with the new brace.   I asked the nurse to hand me my trekking poles.   My hands were sweaty from nerves.  I took the poles from the nurse. I thought:

“I need to be able to walk out of the Emergency Room.  I need to be able to walk to get to the Uber car.  I need to be able to walk to get into my house.”

I tentatively stepped.  I felt almost giddy when I realized I could move and walk around despite the extra  weight of the new brace on my leg.  The nurse had me walk down another stretch of hallway to ensure that I could safely maneuver and walk.  After several minutes and several steps, we both seemed satisfied that I could walk with the injury and manage.  I received my discharge papers and strict instructions that I should stay off the knee as much as possible.

I was to follow up with an orthopedic specialist in three weeks.  I questioned the time-frame.  Three weeks?  The nurse confirmed the three-week time-frame was correct.  I asked whether there were any earlier appointments.  The nurse indicated that I had received the earliest appointment available.  I walked toward the exit of the Emergency Room feeling somewhat deflated.  Three weeks is a long time to wait, especially with an injury. 

I made my way to the parking area for Uber cars and waited my ride.  I began to mentally plan for what I would need to change over the next three weeks.

“I can do this.” I thought. “I can do this.”

I did not realize at the time that my journey with this injury was far from over.

Stuck in Second Gear

While walking to the Fitness Center for one of my sessions, I passed a pickup truck. The driver is getting ready to pull out of the parking lot.  The truck smoothly shifted into 1st, 2nd, and then 3rd gear, and proceeds to drive out.

When a person moves, one muscle shortens and another lengthens.  A pattern exists.  For most, the act of walking is automatic and fluid.  When I walk, my movements are not fluid.   My body does not easily stretch.

Walking for me is often just like the truck I saw shifting into gear. You simply can’t go to 2nd gear if you can’t get out of 1st.  My walking program and exercise sessions are designed to introduce and change patterns to make my movements more automatic and fluid so I will not get stuck in 1st or 2nd gear.

Forms of yoga are part of my workouts to develop improvements in my posture, flexibility, and breathing techniques.  One of the yoga poses that I practice is the “Rock Pose.” This pose is done by sitting on the heels, keeping the spine straight.  I take my place on the mat and attempt to perform the pose.   As I work, I am reminded of the pickup truck and how the driver smoothly put her vehicle into 1st gear.  1st gear for the driver is the acceleration step.  For me, 1st gear is to sit on my heels.

At a certain point, my legs will not bend further.   It feels like I am stuck in my 1st gear somewhere between start-up and acceleration.   I feel my face getting hot and I know that I am turning multiple shades of red. I have forgotten to breathe.

I have to be reminded to take a breath.   I cannot get my legs to respond.  In that specific moment, I think about a truck getting stuck.   An inexperienced driver can panic and try to increase his or her speed to get unstuck.  The probable result from accelerating while being stuck is that the wheels will spin and the vehicle will get more entrenched.

Similar to a truck tire spinning, my body can get stuck and not perform movements beyond a certain level, due to spasticity (resistance to stretch) from my Cerebral Palsy.  I get stuck.  In my attempts to master the yoga poses, I have come to understand that, as much as I may want to hurry up and move, yoga can enhance my control of muscles and improve coordination.   Better coordination means improved mobility.

During this particular session, I was not successful at sitting on my heels or even coming remotely into contact with my heels.  So, I will continue to practice my “Rock Pose” and other forms of yoga with the hope that my body will learn how to move seamlessly from 1st to 2nd to 3rd gear.

This article were originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability ( NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

It’s not always about the Science

On occasion, I get asked to speak to groups about my experiences with Spastic Cerebral Palsy.  In the fall of 2013,  I stood in front of a group of health and fitness professionals and delivered a presentation about my fitness and walking program.  I spoke about why I started the program, provided examples of evidence-based methods that have been used to advance the work, and offered a glimpse of the “science” behind the approaches, routines, and daily workouts.  During the question-and-answer period, an audience member asked “What keeps you going?”

I’m not an expert on subjects such as Cardiovascular Health or Kinesiology. I do not have a complete understanding of the science.  What I did know and what prompted me to act was that my personal situation had to change.  I was losing mobility, was in pain, and I needed to take control of my circumstances.

I also knew what I didn’t know.  I was acutely aware that I did not have the prerequisite knowledge to start to break down old patterns of movement to build new patterns.

When I started, raw and intense feelings of fear and a need to change pushed me forward.  At the time, information about the theories and hypotheses about movement, mind-body connections, and how it all fit together did not interest me.  Pain — a feeling, not academic theories or evidence — caused me to engage and propelled me to act.

I read an article by Annie Murphy Paul called “The science of interest: pioneering research reveals a secret ingredient for fostering real learning.” The article defines the concept of interest and its link to learning.  The author reviews research and strategies to help librarians foster learning with youth.

I was attracted to the article’s premise about developing personal interest and engagement. Paul calls interest “a psychological state of engagement,” and describes a “push- pull” impulse that results in learning and action. [1] I can picture and attest to experiencing that “push –pull” phenomena.  The push is the need to move forward.  The pull is that stagnant state, where a person confronts the question, “Am I really ready to move forward?”

For me, my push-pull impulse centered around the idea that I had used one method of movement – using crutches or assistive devices – for over thirty years.  I knew that approach was no longer working.  The approach that has been helpful for over three decades was now causing me intolerable pain.  My presented options were few – I could continue to use crutches and deal with pain or I could create my own alternatives.  Was I ready?  What alternative would I choose?

Annie Murphy Paul uses the term “invigorated”, when she describes a person who engages. As I read the article, a line in her piece resonated with me: “when we are interested in the task, we work harder and persist longer.” [2]

Physical pain caused me to engage – the unyielding feeling started a process. I had to work through the “push – pull” phase of “Should I proceed to change how I move?” to start to actually pay attention, engage, and have interest.

Paul makes the point that when there is a clear and present interest few alternatives may actually exist. [3]  In my situation, after coming through the “push-pull” phase, I only had two choices.  The first choice was to remain in pain and use more restrictive assistive devices to manage the level of pain.  The second choice was to get interested and start to find answers and make changes to stop it.  I chose the second option.

Paul’s article discusses the process of engagement as a “catch and hold event”. [4]   A person’s interest has to be captured and sustained.  The “catch” for me was the idea that I could actually make changes that would stop the pain.

Paul’s article eloquently details the “a-ha moment” when a person moves to a state of persistent attention; where the “catch” of their curiosity has been successful and learning occurs because there is sustained interest.
When I learned I was capable of changing a very unpleasant state, I became interested in the science.  I started to study the theories and approaches suggested by the health and fitness professionals.  The theories and approaches became more understandable, logical, and digestible once I was engaged and ready to learn.

I had to see examples of the theory.  I had to visually see a movement to start to attach the premise to the exercise.  When people showed me what to do and linked the theory to practice, that was the “hold” in the “catch and hold,” phenomena; when I understood and was able to adopt and own the scientific theories.

The answer to the question “What keeps you going?” is simple. It is the “catch and hold” principle that Annie Murphy Paul describes.  I was initially “caught” by pain and fear.  The “hold” came through the exploration of options; when I put the science and theory into actual practice. I relate to it and want to see and feel what happens next.

[1]Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.
[2] Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.
[3] Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.
[4] Paul, A. M. (2013, November). The science of interest: pioneering research reveals a secret ingredient for fostering real learning. School Library Journal, 59(11), 24+.

This article were originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability ( NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

Person-Centered Support, Care, and Interdisciplinary Collaboration

My walking program has been built upon collaboration.  Collaboration is a dynamic, creative, and interconnected process.  From the beginning, I have combined approaches from a wide range of health, medical, rehabilitation, and fitness disciplines.  I have used methods from physical therapy, yoga, dance, and functional movement to support my overall fitness and walking efforts.

When I work with someone new, I know that I am likely one of their first clients with Spastic Cerebral Palsy, I am “geared up” to educate and dispel any potential misconceptions a professional might have about my disability.  Successful collaboration begins when I see a professional who is willing to engage in what may be unfamiliar.  I know the foundations of collaboration are present when I see a professional actively listening and planning. There is agreement about short-term and long-term goals.

My disability may present a new and exciting challenge, but generally, professionals who work with me want me to achieve success.  The professional is confident that they can support me.  They look for new and innovative ways to help me improve existing skills or to develop new ones. They engage in active problem-solving which leads to targeted strategies to improve my strength, flexibility, and other aspects of mobility.

The professionals I have worked with over many years understand the principles of person-centered support and care. Person centered care is based on the premise that each individual is unique, and that all care and programming should be based on each person’s strengths, interests, needs, and choices. [i]

Principles of person-centered care applied to my program include:
– Treating people with dignity and respect,
– Offering coordinated and personalized support, and
– Supporting people to recognize and develop their own strengths and abilities.

When I engage any professional to become a member of my medical, health, or fitness team, the initial step is to establish a rapport and build the groundwork for interdisciplinary collaboration. I define my goals as a client, share examples of exercises that have shown results, and share information that will demonstrate my current level of ability, and what I am working toward.  I emphasize why my walking goals are so important.  My mobility is the vital key that allows me to work, play, and navigate in my community.

-Interdisciplinary collaboration is an academic term which defines a process of how different professionals work together and forge agreements. This reference describes my experience, “Interdisciplinary collaboration crosses the boundaries of disciplines and professions and forms a team with an agenda of practical problem-solving. The established team has a mutual interest of creating new knowledge.” [ii]

-Effective interdisciplinary collaboration requires developing a common vocabulary and encouraging a relationship that results in active problem-solving between the client and professional.

I have learned how to engage all the professionals I work with in verbal problem-solving. I ask several questions during my exercise sessions or my (walking) training sessions. Examples of questions include: “What should happen during this exercise?” “What should I feel?” “Why?” “Where on my leg should I be feeling the effect of the exercise?”

The professionals working with me in turn have learned how to prompt me about where and when to expect a specific physical response. The dialogue and problem-solving helps me to bridge gaps that happen when typical approaches do not quite work out as expected — often due to spasticity, muscle fatigue, or other factors related to my disability.

-I also repeatedly share the vision I have about walking improvements. I share effective methods that have shown positive results. I similarly share what has not worked over time.

At its core, the unique program and model I have developed over twelve years, came out of the need to find personalized solutions that would not only preserve my mobility but improve it. It has brought together professionals from many backgrounds to build upon my goals, interests, and strengths.

When person-centered care and interdisciplinary collaboration are effectively applied, it promotes the use of community settings versus segregated settings. [iii] It “blends and merges expertise and knowledge from different disciplines to maximize creativity when addressing complex problems or difficulties.” [iv]

In my case, the principles of person-centered care and interdisciplinary collaboration have created a framework for achievement of my goals.  The principles have developed lasting relationships, fostered ongoing teamwork, and developed a shared goal and vision for Wiley’s Walk.

[i] Fazio, Sam. “The Individual Is the Core-And Key-To Person-Centered Care.” Generations. American Society of Aging. 2013.

[ii] Derry, S. J., Schunn, C. D., & Gernsbacher, M. A. (Eds.). (2005). Interdisciplinary Collaboration: An Emerging Cognitive Science. Mahwah, NJ: Lawrence Erlbaum.

[iii] Stanhope, V., Tondora, J., Davidson, L., Choy-Brown, M., & Marcus, S. C. (2015). Person-centered care planning and service engagement: a study protocol for a randomized controlled trial. Trials, 16(1).

[iv] Bronstein, L. R. (2003). A model for interdisciplinary collaboration. Social Work, 48(3), 297+.

Excerpts of this article were originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability ( NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

Charile and His Horse: Perceptions of Pain

Growing up I experienced cramps of such intensity in both of my legs that I would break into sobs because of the strength of the pain.  In most cases, a hurting and weeping four-year-old does not have the expressiveness or coherence to say anything beyond “It hurts.” I did not have sufficient words to explain anything about the pain I was experiencing.

When the Doctor said “You had a Charlie Horse”, I thought who is Charlie? And where is his horse? I did not connect or understand that “Charlie Horse” was a label for my muscle pain.  When I was old enough to start asking questions, none of the doctors or therapists could fully explain the cause of my leg pains.

The hypothesis was that the pain was a result of involuntary contractions (spasms) of specific muscles.  Most often the pain occurred in my calves and hamstrings.  The spasms could occur at any time.  When I would wake up with the leg pains, my parents would use massage and passive stretching to provide relief. Thankfully, the experience of this specific pain was often short-lived.

As I get older and my experience with Spastic Cerebral Palsy evolves, I have had to become more versed in complex topics, such as pain, that I wish I had no need to know.  Pain can be insidious.  I have felt the “pins and needles” sensations of nerve pain, the burning, and the electrical shock sensation.  I have been hyper-sensitive to touch and palpitation.  I had to learn to distinguish between muscle pain and nerve pain by the amount of time (duration) the pain lasted and whether or not I felt an ache or a burning sensation.

My experience with muscle pain has most often been of short duration.  I feel an ache, a dull but persistent kind of pain that lasts a few hours or a couple of days.  My experience with nerve pain is often as a sharp and burning sensation that can last for a few hours or last weeks at a time without going away.  There are times when medical intervention (e.g. medications) can alleviate the discomfort to a degree and times when there is no level of relief.

There are days when I feel like the child who woke up in the middle of the night.  I can remember wanting “Charlie and his Horse” to come and make the pain in my legs disappear.  When one experiences re-occurring pain, the age of the person does not matter at all.  The person just wants the pain to stop. The person may want to understand why they hurt, the cause of the pain, and how to make the pain go away, but first and foremost, they need the pain to stop.

Doctors, therapists, trainers, and other fitness professionals only witness reactions to pain or hear accounts about it.  They do not feel it directly.  Yet these skilled and capable professionals are taught to ask about the location, quality, and the intensity of the pain.  As skilled and proficient as I always try to be about the description and details about my pain, there are points when I fail.

The intensity of my pain can vary.  The pain can start in one spot and end in another or travel.  I cringe at the question, “What does your pain feel like?” The first thought that goes through my mind is “How do I explain the feeling of chronic burning?” Will the words burning, searing, throbbing, or steady burning, convey the message?  Has the professional ever felt like their skin was on fire?

Tools that Doctors and other professionals use to assess and diagnose pain are constantly improving.  The American Chronic Pain Association offers a number of resources which may be useful including a quiz on nerve pain, pain scales, brochures on pain management and understanding nerve pain, and a searchable database of resources. [i]

I would have loved to have a conversation with my Doctor about “Charlie and his Horse” when I was younger, so that I was more engaged, and had a better understanding of what a muscle spasm was.  In my adulthood, I am learning to have a better understanding of pain and related symptoms beforehand.  Is there a way to teach people about pain prior to dealing with searing or throbbing pain or steady burning?

Muscle relaxants and exercises are often the prescribed way of managing pain.  I wonder if there are ways to introduce the concepts of pain and how to recognize and deal with pain in a preventative context for children, who turn into adults who must manage their own version of “Charlie and his Horse” and pain?


This article were originally published in the “Endless CapABILITIES Blog”, and National Center on Health, Physical Activity and Disability, sponsored by The National Center on Health, Physical Activity and Disability ( NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC).

Adversity and Resilience

For eight weeks in 2015, life as I knew it stopped. I saw every doctor possible to identify the cause of a mysterious and unknown pain in my legs. By the fifth medical visit, I was exhausted. Every test that was conducted came back normal. However, I went from being able to walk three miles a day to not being able to walk across a room without feeling excruciating pain.

I argued with the doctors and representatives from the insurance company. I knew how to fight for tests that would help me to get answers and a diagnosis. I wrote letters that explained the pain I was experiencing was not typical. I had to gather medical information and records that verified this fact. It was only after receiving this evidence and documentation that the doctors wrote authorizations for a Nerve Conduction Velocity (NCV) test and an MRI. An NCV is a test to see how fast electrical signals move through a nerve. This test is done along with electromyography (EMG) to assess muscles for abnormalities. The NCV test came back normal. The MRI came back showing stress fractures in my ankle that were not visible from an x-ray.

After my foot was casted, I could not bear weight on my ankle for the next two months. When the cast came off, my first steps were tentative. I found I was afraid to put weight on my right foot. After a few steps, I realized I could move with the support of my walking devices. My right foot was weak. The loss of strength and function became evident by the increase in my foot drag, the visible turn out of my foot, and my inability to lift my foot up when I attempted to negotiate stairs.

In the weeks that followed, I asked the question I did not want to ask. “Did my aggressive approach to walk without devices cause this injury?” The medical professionals I worked with did not know the answer to this and could not tell me how to prevent the injury from happening again. They advised caution. The aggressive approach I was pursuing to walk device-free could have contributed to the injury. Their recommendation was that my exercise and fitness regimen had to change, be less aggressive, and focus on preserving my mobility instead of attempting to walk-device free.

An English author, Sarah Evans states the following about feelings of failure “Failure is hard. Whenever it happens, in whatever form it comes, however old you are, it will always be difficult. But come it will.” [1] I knew failure could come. I was not ready for it. When I looked up definitions of failure from various authors in health care and other disciplines, failure was defined as falling short or not achieving something desired.

I originally thought that not having answers about the cause of the pain in my legs was the scariest and hardest part of my experience. All of a sudden all of my effort and work had to stop. I did not expect the intense emotions that came after the injury. I was angry that the injury occurred. I was irritated with myself for being too aggressive with my exercise and fitness regimen. The broken bones represented a larger loss. I lost my sense of spirit, optimism, and confidence.

Adversity is defined as experiencing a hardship, for example, an injury or an illness. I suffered a temporary physical injury. In my mind however, I saw ten years of effort culminating into a perceived failure. The broken bones in my ankle made me feel vulnerable. Overcoming the sense of loss and disappointment that I had failed was hard. I was used to succeeding and overcoming obstacles.

Resilience is about finding a new path after a setback. I had to regain a sense of confidence and define a new outcome. Instead of walking-device free, the new goal involved identifying strategies to maintain existing mobility and trying to improve it over time. Tell me Wiley’s Walk Readers, how have you faced and conquered adversity?

[1.] Evans, S. H. (2000, March 13). Facing Up to Life in the Real World Can Be Hard; Sarah H Evans Says Young People Should Learn How to Deal with Failure. The Birmingham Post (England).