A collection of Joseph Flanigan's drawings

 

A collection of Joseph Flanigan's drawings.

MS: Think Outside the Box

Think Outside the Box

HERO:

The word hero is an acronym that means, Help Everyone, Respect Others. You show respect by giving your time, your talent, your treasure, and most importantly, your tenacity. Never quit until we find the cure for MS. Thank you for coming, each of you is my hero.

The current dialog on MS has two principal author perspectives. The clinical view and the MSer self-view, or the "them" or the "me" perspective. When I talk about MS From the Insider-Out, I try to have the "us" perspective.  I just look at MS magazines, the principal authors were from the clinical view. Sometimes, the magazine will have an MSer personal story as the me-too story.  The them pronoun can be a logical context syllogism when referring to people with MS as the object of the article. Them, you, us and me are just perspectives of the MS box. The clinical views, them and you, see the MS box from the outside. The MSer views, us and me, is from inside looking to see out. The MS box does not have walls, rather, the clinical perspective is looking at a pool of water, and MSer perspective is living in the pool. The water is not water, it is MS.

The idea of "MS From the Inside-Out" is different than other dialogs. It is a cross between the clinical and the personal.  

Before MS forced me into disability, a big part of my career was working on international standards for electrical engineering. The job was to architect information models. Everybody is an information molder. Every profession has sets of information models that become the rules of the job. An MD diagnosis of illness. A CPA reconciles charts of accounts. Parents, children, artist, CEO, researcher, pastor, politician, gas station attendant, hermits, blue-collar, white-collar, gray-collar, everybody operates within tribe information models. Characteristics, personality, craft, relationships, and awareness emit from information models.  This email is an information model.

Think of “MS From the Inside-Out” as the middle-ground information architecture of MS life.

Here is a challenging information model question I asked many doctors and others, some of whom were at the meeting.

a. What not is fatigue is ___________?

b. What is not fatigue is ___________?

These are information architect style questions. 

The answer for a. is the opposite. 

The answer for b. is a description. 

My Inside-Out journey began with another question, “What did MS steal from me?” While looking for what MS stole, I discovered the MS thief left fatigue tracks. You may think everybody knows MS causes fatigue. That is true, the difference is my discovery personified MS as thief and fatigue is evidence not a symptom.

The challenge question makes a case statement where the fatigue evidence may find what the thief stole..

All the "pros" answered with descriptions of fatigue. Never the opposite.

A survey using the challenge questions. While not necessary, add one more question.

c. What is your connection to MS. Answer One or more.
___MSer.         How long since diagnosis? ______
___Care giver. How long providing care? __________
___ Medical doctor.
___ Ph.D. not medical.
___ Medical or Ph.D. staff
___ Therapy. What type? ________
___ Community Provider?  What type ________
___ Trainer. What type? _______
___ MS Support Organization.
___ Other connection. ___________
___ No connection.

As an experiment, read the InfoMS "Focusing on Fatigue"  to look for an answer to the challenge question.

I did find an answer. I am a fan of letting others seek their answers. My answer took me two years working on and off to find.

CPA Hint. What not is a net asset is ________
               What is not a net asset is  ________
               😀The answer is not a not for profit

The MS Society Communications Editor and some Society staff rejected MS From the Inside Out. Not everyone is in favor of a new MS box. 

A box has 4 observer perspectives. 

 - The outside perspective sees the box. 

 - The inside perspective sees the box. 

 - The outside-in perspective is a guess about what is on the inside. 

  - The inside-out perspective can see both sides. 

Hence, the expression, thinking outside box. Some people think MSers belong in a box. Open a box the lid to discover a music box.

In 1989, at 40, I was diagnosed with MS. I worked as an advisory engineer at IBM. Then in 1995, MS forced me to surrender my career. In 2005, I started to change my relationship with MS. The process took a few years, eventually, I invented a training program called Connection Toning. All of my MS education was a clinical perspective. (Most of the Brain Hearth  program was from the clinician perspective.) This perspective is absolutely necessary. As time passed, I realized as an MSer, I have a different perspective. I called my perspective, "MS From the Inside Out" and the clinical perspective, "MS From the Outside In."

However, both perspectives are about MS.  I needed a model that includes both. This blog explains:

https://ideas.resipso.com/2019/10/multiple-sclerosis-ms-from-inside-out.html

The Outside-In MS dialog is lesion, inflammation, and scar.  However, I know something is wrong before going to a neurologist. I gave that knowledge a name, irritation. I know the lesion will cause neuro-psych damage I called stigma.  I named the Inside-Out dialog lesion, irritation, and stigma.

https://ideas.resipso.com/2019/11/multiple-sclerosis-ms-attack-zones.html

About Me: My Multiple Sclerosis Story

About Me: My MS Story

My name is Joseph. In 1989, I was diagnosed with multiple sclerosis. Since then, my MSer story has traveled many roads. Today, I will share the story of some of my adventures. I want to thank each of you for being here. Whenever we can come together to hear and discuss MS, I believe each of us receives energy to continue the adventure. 

Almost every story has a hero. My story has many. I was born in a small town in central Nebraska. We lived on the old family homestead farm without indoor plumbing or running water; three years later, when we moved to the big house, my mother told my dad she wanted an indoor toilet and water in the house. I can still see dad’s solution: a 50-gallon drum on the roof with a hose piping water from the well and electric cord attached to the stock tank heater keeping the drum’s water from freezing. By the time I was seven, I had three sisters and a brother, and we left the farm and moved to Denver. 

Life with MS is like farming; praying each year that the crops don’t fail, yet knowing it’s going to happen sooner or later.

I remember my grandfather, who was one of my first heroes, telling me, “Joseph, I had a great life. Farming is hard. We struggled through the Depression. We have a great family. I started with my dad’s horse to plow fields. We bought land, tractors, and cars. We replaced oil lamps with light bulbs. We went from listening to the radio to watching television. I got to see a man walk on the moon!” Just as he was a farmer, he planted that memory in me. Personally, when I am older and my daughter is grown, maybe I will have a grandchild who I can tell, “I had a great life. I received the cure for multiple sclerosis!” 

In 1968 at 18, I enlisted in the Marine Corps, which began my career working on computer-based Tactical Data Systems. I loved the technology, and I was never bored because there was always something to learn. In 45 years of working with computers, I experienced many changes first hand. The early computer programs were modified by re-wiring circuits, then machine-level switches, hole punch cards, monitors, mainframes, PC, PDA, cell, and so many other great inventions that changed our lives. MS cut that journey short.

Everyone with MS remembers their first relapse and the scared feelings after the diagnosis—“You have MS.” For me, those words came in 1989, while I was living in New York. When I was still single, after a long business trip to Japan, I was happy to be home, but also very tired. I was going down to the basement where I kept my office, and I slipped and rolled down the stairs. I lay there for 30 hours, thinking I’d broken my back, and then somehow found the strength to get up to drive myself to the emergency room. To this day, I have no idea why I didn’t call an ambulance. I’ve since learned that it’s okay to ask for help.

While I was in the hospital, the doctor told me X-rays showed a lesion on my spine at the back of my neck that looked like cancer. I was still in pain and the doctor’s words didn’t register. Meanwhile, my left hand was numb, and my arm was curled to my chest, frozen, unable to move. The doctors recommended surgery, saying the paralysis would kill me. Tests done the night before showed the lesion was shrinking and they decided not to operate. After days of testing and no clear diagnosis, incredibly, I was sent home under the care of my neurologist. 

Three months later, I was stumbling and dragging my left foot. An MRI showed new scarring in the brain and my neurologist confirmed the diagnosis — multiple sclerosis. When I was first diagnosed, some people would shun me, not come into my office, walk out of meetings, or not shake my hand. I remember well those first days of being shunned. I didn’t blame them. At the time, truthfully, I didn’t know any better myself. MS is something to fear, but it is also something to understand. 

Every MSer I have talked to has experienced some denial. My father showed me the courage and my mother cured my denial. One day while shopping for new shoes the numbness in my fingers made it difficult to tie the laces. Mom saw me struggling and noticed a clerk some feet away. In a clear, distinct voice said, “My son has MS, he needs help getting these shoes on.” Mom did not know it. But, my mother's love cured my denial with a few simple words. 

In 1993, I began taking a disease-modifying drug to help control my disease by reducing the frequency of relapses. But by 1994, I was no longer able to work. On December 8, 1994, the doctor told me I had no choice but to retire or be confined to a wheelchair. As I was walking out the door, I had to hold on to the wall to stop me from falling. I was in shock. I cursed, “Damn it MS! You stole my career. You stole my life.” The walk to my car took forever. January 1, 1995, was not a happy New Year.

The next month, I met Debra, the woman who would become my wife. She refused to give up on me, and two years later, we were married. From the moment we met, she became my hero. I also say, she became my “Happy Heart.” I went from age 46 to 16—I would leave love notes on her car and sign them with a heart that had a smiley face inside. One day, she asked me what that was and I said, “Well, that’s my happy heart.” 

My wife and I had been married for seven years, and my daughter was about five. At that time, I had numbness throughout my left side, and I used a cane in my right hand to help me walk. One day, my wife said, “Joseph, you don’t hold my hand anymore while we’re walking.” I started analyzing what she said, and I answered as an engineer, “Well, I don’t get any charge out of it.” She was hurt, and said, “I can’t believe you just said that to me.” I was surprised, too. Several months later we went to the Can-Do program at the Jimmie Heuga Center in Vail. We were listening to a lecture, not specifically on this topic, but we both had a revelation and realized a truth about MS numbness. One of the reasons for holding hands is that it feels good. Because my hand was numb, the emotional mental impulse to reach out and hold her hand got lost because of the MS. I realized it was numbness and had nothing to do with my love for my wife. We’ve worked around it…sometimes we’ll be walking and she’ll bump me and I know what that means. It elevates my awareness.

After 19 years of living with MS, my physical condition had become very stressful. I was putting on weight. Walking was fearful. After my first relapse, I walked almost everywhere with a cane. By 2008, at times, a second cane was close at hand. The situation was worsening. My excuse was MS. My daughter was getting older and my wife was taking on more responsibility. I started to change my thinking, creating a desire to overcome my lack of mobility. What followed were days, then months, and then years of personal training. I have biked five MS 150s, and two 400 mile multi-day treks, and broken both my arms. 

In 2013, I started to lose the feeling in my right foot, making it difficult to slip my feet into the bike pedals. My normal way of getting on the bicycle was to lay it down, stand on my “MS” leg, and swing my good leg over. And then stand the bike up. But this relapse made it impossible for me to do that, and that was my second worse day with MS. All that training, all that work, all those perfect miles: Gone.

After two weeks, with treatment, I noticed gradual improvement; however, the damage was done by that relapse still kept me from cycling. I still look at my bikes. I look out the picture window, look at the mountains, and watch great riding days pass, determined to someday ride again. 

Our journey with MS is mapped by relapses and remissions. With the modern treatments for relapses, the personal challenge is to stay in remission. Each day of remission is a chapter in a hero's journey. I’ve learned that one of the hardest things to overcome is myself; but I’ve also come to realize that I, too, am a hero on a journey. Every person with MS lives their own hero’s journey. The day you hear the words, “You have MS” the story began. Along the way, we meet mentors, support partners, treatments, remissions, and the disease. Because we adapt, the journey continues. MS is just an excuse for an adventure. 

For me, the word “hero” stands for “Helping Everyone Respect Others.”  Remembering how I was once shunned, I educate others that MS may be something to be afraid of—but it’s also something to understand. You can be your own hero by being proactive, discover, learn and know all your options for your MSer life. I’m grateful to my wife and my daughter, and to all the heroes I’ve met along the way. And, each of you—you are all my hero, too. 

Multiple Sclerosis: MS fatigue is an MSer's best friend

MS fatigue is an MSer's best friend.

Connecting to fatigue is one of the hardest MSer challenges. Often without warning, MS fatigue invades activities. Even with life skill management and avoidance techniques, the fatigue monster can find a way to hack into any activity.  This interloper action provides many reasons to consider the fatigue invader an enemy. In systems design, anything that causes a breach in system security is an interloper. As good as any system can possibly be, an interloper demonstrates an opportunity for improving security. An interloper that penetrates enough to cause damage means recovery actions.  While the interloper attack is cursed, the attack triggers opportunities to make a better system by improving security and recovery plans.

MS fatigue is an interloper attack on our body’s systems. We curse its existence as an enemy to our health. But if we step back and look a the attack as defining a breached area in the bran due to the MS lesions. The fatigue points to a place where adaptive techniques can aid damage recovery. As an MSer we can acknowledge MS fatigue as a foe, but also, we accept fatigue as a friend because it is showing us where we can adapt.

MS fatigue is an MSer's best friend.

MS-induced fatigue is the only true impact maker for lesions.  MRI shows where a lesion occurred. Neurologist tests are clinical fatigue tests. 

MS lesions result in 3 types of axon damage, nerve fiber fatigue, axon loss and ephaptic conduction* or simply high impedance opens and shorts.  Each of these exhibit as MS fatigue. *ephaptic conduction, as in cable theory,  means crosstalk due to loss of myelin via electrical fields.

The single measurement instrument of MS fatigue is the MSer themselves.   The body's built-in instrumentation is the main reason MS fatigue is the MSer's friend.  The life skill is to recognize friends and foe. I know first hand how easy it is to make MS fatigue the foe. Whereas in reality, your friend is telling you where the danger exists. 

The "walk out the door" example uses perceived exertion as the instrument to find the lesion trauma area. 

Imagine yourself sitting in a chair, looking at the morning sky out the door.  You decide to go outside to experience the day. To walk out the door 3 conditions must exist. First, you must have the physical prowess to stand up, next you need the neurological coordination to walk, and third, you must have the cognitive resources to plan the walk. ( Some people may lack the mobility to actually get up and walk, but still, imagine you can.) The example is a way the identity the source of fatigue. 

Physical prowess examples are body system works for strength, flexibility, and endurance. Physical fatigue exhibits as things like sweating, thirst, breathing, stiffness, strain, relaxing, nourishment, and sleep.

Neurological coordination is messaging  between the CNS and the PNS  nervous system

Cognition is the analytical mind that plans and executes activity. 

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 détente 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.”

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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.