Sunday, November 17, 2019

Multiple Sclerosis: The Hero In Us

The Hero In Us and The Hero In Me

From August 2014

The Hero In Us

by Joseph Flanigan
Loveland, Colorado

As an Ambassador of the National Multiple Sclerosis Society, I have given many talks about MS to groups, organizations, and individuals.   My speech script is about the disease, its diagnoses, its symptoms, and the Society. During the talk, I will weave in personal anecdotes and experiences.  These off-script anecdotes seem to make the most connection to the audience.  I enjoy telling the stories because they reveal some of the real-life challenges and consequences of living with MS.

Living with MS is not a script nor is it a story.  In looking for a way to tell about living with multiple sclerosis, I discovered another way to explain the disease and uncovered new insight about how to live with MS.

A friend, Brandon Harrington, told me about the 10-step model of a hero's journey often found in the literature. The steps derive from Joseph Campbell's "The Hero with A Thousand Faces" which outlines the story pattern for a mythological hero.

Seeking the New-Normal

As soon as I read the 10 steps, it reminded me of everyone living with MS and the struggle we have overcoming its effects. Because MS attacks the central nervous system, it can disable normal cognitive and body actions. I think of living with MS as having two masters. When MS is the master, it is changing our biological self. When the MSer is the master, MSer fights the battles to defeat the MS master and reinforce the d├ętente meanwhile building a new-normal self, provoked by the MS master’s trauma. The MS hero journey is about overcoming the MS master’s adversities and returning with a new-normal life.

The physiological trauma of MS is often modeled as a grief experience: shock, anger, acceptance, and coping.  For MSers, the grief experience phase is called denial. Moving past denial means living with MS effects. The hero model is a template of strategies for returning to a new-normal life imposed by MS. Harrington, Campbell, and others caution that every hero’s journey may not have every step, nor the will steps be in exact order. It’s a model; not necessarily the full story, but it is a way to cast an adventure. Living with multiple sclerosis is a constant adventure.  The MS journey changes often because the disease constantly changes.  Every change is a new journey.

When I first wrote this, the title was the “The Heroes In Us”, however, the concept of a hero is about the individual.  The term “heroes in us” seems more like a collective experience rather than a person’s achievement. By renaming the title to “The Hero In Me”, it directs the hero concept withing t with each of us. Our fundamental human instinct for survival provides nature’s energy to propel us on the hero journey.  As individuals, we can choose to draw on that energy to construct the will for resolving the journey. 

The heroin me is a journey to thrive.

The Diagnoses

When someone is diagnosed with MS, it’s a black hole of fear, confusion, disbelief, grief, and loss. For those who can accept living with MS as their new-life, we begin a journey – the hero’s journey. For me, thinking about living with MS as being a hero’s journey is not about being a hero, it’s just living with MS. Being so, in the hero’s steps, I mentally replaced the word hero with MSer.

The literary model of a hero begins with the hero being lost, confused, lacking purpose. That situation changes, perhaps acting on a dream, reaction to an event, compelling forces or something else that triggers the hero into action. For MSers, the reality of an MS diagnosis drops us into a grief well. I remember those days so well. In a way, I fear those times more than living with MS. I was scared, worried, disbelieving, fearful of death, my career crashing and so many other emotions of denial that it affected just being able to cope with normal life challenges. For perhaps 3 years after my diagnosis, I was still living with denial. Then the hero adventure trigger came.

In 1992, while on a business trip, I stopped in Denver to visit my parents. Needing a new pair of shoes, my mother went to the store with me. While trying on the new shoes, the numbness in my left leg and the floppy drop foot stopped me from putting the stiff shoes on. My mother, in front of a store of customers, walked over to the clerks and announced for all to hear “My son has MS, he needs help trying on shoes. Please help him.” I was 44. At that very moment, I became a child again, embarrassed beyond belief – I thought to myself  “How could she tell everyone I had MS?” She was proud to help me buy those shoes. Not saying a word about the encounter, we drove home. But something changed. After four years, the MS was no longer in denial and I became a man again.

 The Journey

In the mythological hero journey, the hero leaves on the journey and returns in triumph, Because MS challenges cause diverse adversity, it is constantly changing our normal life. These changes mean we lost something in normal life and the MSer journey seeks to find a new-normal. Simply, the MSer journey begins when a disruption occurs to life-normal and returns with new-normal. As we adjust to everyday living, the new-normal becomes life-normal.

Going through the steps, the MS journey continues. MS continues to change us; each change is an opportunity to embark on the new hero’s quest. When MS has mastery, the steps for transformation and  the return cycle repeaover and over, challenging the MSer to continue seeking control. This happens in situations like fatigue and exacerbations. Slowly, the can-do character emerges again, stopping the cycle. In bad times, we may have to start the quest over, totally building a new can-do character.

10 Steps of the MS Hero

1. Call step is where the MSer is summoned to action and agrees to go on their quest.
n  Denial is over, truthful living with MS begins. We step forward with a vague vision of health as our quest.
2. Allies step is the part of the MSer’s  journey where meeting others assist them on their quest.
n  Support groups, health care, friends, and co-workers. Letting others in who know about MS challenges.
3. Crossing the Threshold step is where the MSer decides to make the step into the underworld, darkness, unknown.
n  MS trauma is a dark adventure. Moving out of this step is called acceptance. It is accepting the mystery of MS and the mastery it places on our life. The darkness becomes what it is - darkness. Our natural instinct for survival pushes us beyond the threshold becoming the guiding beacon.
4. Preparation step is where the MSer sharpens their tools mentally and physically, readying oneself for what faces them.
n  We get better mentally and physically. We adapt. Gain strength from self-discipline
and restraint, take the meds, follow fitness recommendations and stop harming our
immune system.
5. Road of Trials step is where the MSer experiences many obstacles and challenges along the journey.
n  Fatigue, exacerbations, cognitive challenges, relationship failures and many more.
6. Guardians of the Threshold step is where the MSer encounters others who stand in the way of what goals need to be accomplished.
n  There is no cure for MS, which is an obstacle. Drinking and smoking addictions compromise health habits. This is where the battles are fought. The sword of self-discipline and the shield of interlopers is the armor used to break through the threshold. From these struggles, a new can-do character emerges.
7. Saving Experience step is when the MSer is at their lowest point and a person or situation gives them the clarity and strength to surmount the odds.
n  This step repeats over and over. It comes in many flavors. One of my mentors said, “We will begin there.” And it does not have to be a low point; in fact, often it is not. Courage pushes come from all over and can be any time, any place. In meetings, in personal encounters, in gatherings, in quiet times. Letters like this.
8. Transformation step is where the MSer gains a new understanding and becomes changed for the better.
n  This step can be a mystery. Like MS everyone will have a personal transformation. It does not have to be grand. It is very personal. Every MS attack demands transformations.
9. Return step is where the MSers comes to his home and completes the journey cycle.
n  In an adventure story, the hero returns to home with banners and cheering. For a MSer, coming home means returning to oneself as a person. It also means being able to say to anyone, “I have MS.”
10. Sharing the Gift step is where the MSer is able to pass on their knowledge from their tough experiences.
n  Help others with MS. Explain to others the nature of MS. Be an ambassador of knowledge to help others accept MS. Become a support partner.

The Everyday Journey

The everyday version of the hero’s journey is a “big picture” view of the 10-step journey. This version highlights some insights about why the journey is necessary.

Everyday living creates a personal physical and emotional habitat in which we exist as our normal life’s environment. Our habitat is the sum of all the forces that shape our lives. These forces mold us by conditions that constrain both our physical self and our surroundings. Our journey of change begins with a disruption in the safe self then continues on a quest to find a new-normal for reintegration into our safe self.

Life with MS is both about dealing with the adversity of trauma and the quality-of-life improvement challenges. Economists use the terms needs and wants to explain motivation in social behavior. Likewise, we can use the same terms to identify the purpose of the journey. Adversity is a needs-modification journey. It means MS has broken the normal life habitat balance and something needs to be repaired and resolved correcting the trauma to the new-normal. Quality-of-life is a wants modification journey. At some point, a desire emerges prompting a challenge leading to a new-normal that creates benefits for transfer into normal living. Perhaps a challenge is to improve mobility by losing weight and improve cardio to manage fatigue by embarking in a personal training program.  Interestingly both journeys have opportunity to refine and adjust goals during the quest cycle.

The Quest Cycle

The quest cycle is the heart of the journey. This is a process where we discover the true depth of change and find the resolve to climb out of the deep and build the new-normal. As a process, successful change occurs incrementally. During a needs journey the increments can be well defined like living through another MRI or even a doctor’s office visit. Medication management is a common needs journey. The journey out of an exacerbation can have many quest cycles. Every MSer experiences different trauma. Like in the 10-step model, our guides become instrumental, understand the trauma and assist with building the new-normal.

The Everyday Journey 

      Challenge:  a demand triggers a change, something needs repair or reform.
      Quest: the discovery journey to meet the change,  define goals   Remodel:  the test time for the change, refining the change 
     Home:  the challenge is normal life   

A wants journey fuel comes from the personal desire to set a challenge and find the passion to change. Fitness is a very difficult wants journey because it involves both common fitness challenges and trauma deficient challenges. Here the sword of self-discipline and the shield of interlopers are defenses to be built and defined. MS fatigue is one of the physical obstacles these weapons help us combat. After years of work, I became a cyclist. My shield of interlopers are limitation awareness and tools to help protect myself from heat and cold to block external causes of fatigue. My sword of self-discipline for fatigue is a little motto, “If the muscle weakens with burn, ride on and be happy because I am getting stronger. If the muscle weakens with no burn, stop before falling off. Rest, then ride on.” 
Because the wants journey is personal, seeking guides like personal trainers can make the journey easier and more successful by drawing on their professional expertise. For me, the trauma from MS exacerbations left my left side muscle weak, areas of numbness and a drop foot gait. Because of the MS, my left side suffers from proprioception sense failure exhibited by not recognizing the correct movement. While physical therapy can identify the failure, my experience taught me that personal trainers are good guides to see the correction and suggest training techniques to correct proprioception failures. During my MS history, I learned the value of both professions. The physical therapist helped me understand the challenge of walking and it was the personal trainer who helped me during the long struggles in the quest to walk. Learning to walk without a cane required many-many quest cycles. The new-normal became walking slower, observant ground scanning and exercises strengthening leg muscle control. In time, these skills integrate and transform into being a normal way of walking.

Every MSer has their journey story. I believe the journey to find their MS normal life with MS is important to overcome the mystery and doubt of MS exacerbations. Knowing our MS normal helps the MSer find the time to raise the warning flag and seek medical help. When not reacting to needs demands, our survival drive, uses this time in the life-normal state to foster challenges by wanting better survival conditions.  

The Bell Tolls for the Hero

Why are we concerned with the hero’s journey? Why is it important to learn steps for following the journey? What is normal? The answer is found in the ringing of a bell. The normal state for a bell is silence. When struck with a hammer, the energy from the hammer causes metal trauma that sends out waves of sound as notification of the trauma. As the metal absorbs the hammer’s energy, the strength of the sound wave lessens and eventually the bell becomes silent – its normal state. This silence science calls quiescence. In disease, quiescent means not getting any worse. In engineering, quiescent means a steady-state, like the light emitted from a light bulb. In physics, it means inactive often referred to as a body at rest thens to stay at rest. In all cases, there are active forces maintaining the quiescent state from forces seeking to disturbed its state. Quiescence is a very powerful force of nature.  In essence, it means all the force conditions are balanced and action is controlled. A burning light bulb emits controlled energy. A beating heart pumping is the heart's natural normal the quiescent state.   

In humans, relating normal life as a quiescent state defines both qualitative and quantitative conditions of the current normality. When something disturbers these conditions, like MS, the hero’s journey is a road map to help restore those conditions becoming life normal.  Our body is designed for action, to burn brightly. That is our normal quiescent state. Like the ringing bell, the forces are shocked out of balance and other forces immediately go into action to silence the bell. When our body is shocked out of balance, we need tools to restore balance. The hero’s journey is way to gather those tools and put them to work becoming the can-do person.

Everyday Heroes

Some people have called me a hero. For me, my heroes are the people who help me. Those that contribute to finding a cure for MS, my support partners who live with MS too, my friends, my family, my sponsors, my mentors and other MSers, these are my heroes.

When I give talks about MS, part of the story is my own hero talk. H.E.R.O means Help Everyone Respect Others. People demonstrate respect by giving time, talent, treasure and tenacity. Of these, never giving up, tenacity is the most important. Heroes don’t quit. Sometimes we do get lost or miss an opportunity. 

 A hero’s journey does not have to be a long grand event. Deciding to write a check for a donation and sending it in is a hero’s journey.  When I see someone hold a door for someone in wheelchair, I see some of their hero poking through.  And for the person in the chair, not to feel insulted but rather responding with a gracious thank you shows another face of being a hero.

Living with MS is both personal and public. When an observer looks at a person with MS, most likely they will not see anything that would identify the person as having MS.  Even people with MS cannot identify other MSers. For a person with MS, associating with people without MS often is like standing on the edge of a deep invisible social chasm. The symptoms from MS trauma, like drop foot and memory gaps, created the chasm. Because MS often has invisible symptoms, The MSer can see the chasm, but others cannot. Humans have a wonderful gift of being able to adapt to physical challenges and to respond to obstacles.  When the MS hero returns to their life-normal, they will adapt their MS to bridge the chasm.

The difference between dreaming and imagination is that a dream is as transparent as a wish whereas imagination is plan for a call to action.  Every day I dream of a life free of MS. A thousand times a day, I imagine overcoming the next obstacle and when that is done overcoming the next and the next and then the next. Soon I dream again and then my imagination fuels the day.

Looking for Heroes

Reflecting on being a hero prompted me to frame an invitation. Say to someone, “I invite you to be a hero.”


What is the source of the 10 steps? Read: The Writers Heroes Journey by Christopher Vogler derived from Joseph Campbell’s work.

What is a common example of adapting?  Numbness in the feet causes balance and stride deficits. Using a simple expression like climbing stairs with a cane, “to heaven with the good, to hell with the bad” can be a the cognitive challenge to remember and coordinate, and a source of pride when successful.

What are the sword of self-discipline and the shield of interlopers? The sword of self-discipline refers to the new personal characteristics used to remove the internal resistance blocking the forward journey. The shield of interlopers refers to any outside influences that seek to breach the security of our journey.  Like knights of old, the sword and shield provide armor for MS combat.

What are the principle personal characteristics of the sword and the shield?  Self-honesty’s introspective nature is the sword that cuts to the truth in making choices. Self-awareness’s judgments shield outside influences by admitting or rejecting acceptable behavior changes.

MS is not mythological, why relate MS to fiction?  While the literary model for a hero’s journey is about characters found in stories and history, I found it is a great model for overcoming any adversity. MS presents so many challenges; just working through them can be confusing, compounding the adversity imposed by the challenge. The steps are just waypoints leading to a new normal.

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