Coping with Change While Changing Beliefs

One of my common themes is “Coping with Change.” Kennedy’s Disease forces you to cope with the unplanned changes in your life. Until you accept the changes, it will be difficult to move forward again. Having a strong belief system is as important as coping.

Spencer Johnson has a way with words. He has written over twenty books and sold tens of millions of copies of Who Moved My Cheese? and The One Minute Manager. Most people have heard of The One Minute Manager, but his second book is not as well known, yet is better for those of us dealing with unexpected change in our lives. You can read the book in an hour or so, but you might find yourself talking about it and reading it again.

Who Moved My Cheese?

“It is an extended allegory based on the experiences of four mice who live in a maze that has cheese located at a particular location. Then one day, the cheese is moved to a new location, and their differing reactions determine their success in the new state of affairs.

In this artful way, Spencer Johnson introduces the reader to his fable on how to cope positively with change. Here is four short quotes from the book.

· “What would you do if you weren't afraid?” ...

· “What you are afraid of is never as bad as what you imagine. ...

· “When you stop being afraid you feel good” ...

· “The quicker you let go of old cheese, the sooner you find new cheese.””

Mr. Johnson passed away in 2017 and left behind the unpublished book, Out of the Maze - This is a story about the power of belief. In this month’s CostCo Connection, Adrian Zackheim writes about “The Power of Story.” It is the long awaited sequel. Adrian Zackheim has taken the drafts and published the book.

Out of the Maze

“Who Moved My Cheese? offered millions of readers relief for an evergreen problem: unanticipated and unwelcome change. Now its long-awaited sequel digs deeper, to show how readers can adapt their beliefs and achieve better results. Johnson's theme is that all of our accomplishments are due to our beliefs: whether we're confident or insecure, cynical or positive, open-minded or inflexible. But it's difficult to change your beliefs - and with them, your outcomes. Find out how Hem, Haw, and the other characters from Who Moved My Cheese? deal with this challenge.”

Here are six key principles from the book:

· Don’t believe everything you think.

· Old beliefs do not lead you to new beginnings.

· You can change your mind and choose a new belief.

· You are not your belief. You are the person who chooses your beliefs.

· Let go of whatever isn’t working.

· Look outsize the maze. Consider the unlikely, and explore the impossible.

You can find Who Moved My Cheese? at most public libraries or at Amazon. I can’t wait to read the sequel.

Our Thoughts Control Our Lives

I mentioned in earlier posts this Rolodex on my desk called “The Attitude Builder.” There are 52 cards containing positive affirmations. On the back of each card is a short explanation of the concept. While considering my recent slide, I flipped over the next card and BAMB! There it is - the answer I need.

“The most powerful force I have is what I say to myself and believe”

As I considered the above concept, I flipped over the card and read,
 

I am controlled by what I accept and believe.

So, I choose to believe only things that are loving and beneficial.

There have been times in my life where my negativity created a crappy day. I wonder how many times I have asked, “What else could go wrong today?”

Living with Kennedy’s Disease is “mind over matter.” If you don’t mind, it doesn’t matter. 😜

Life doesn’t have to be as difficult as I make it sometimes. My attitude and my ‘self-talk’ can create moments of chaos or moments of joy. I’ll choose joy anytime. 

Who’s Driving the Bus?

I believe there are choices in life that have to be made. I am not talking about simple, easy choices (like what should I eat for dinner). I am talking about “life changing” choices. Often these choices are not always evident. Some have to be discovered before they can be made. It is important that we do not close the book on ourselves because of your situation

I know I keep repeating this, but it is important. Kennedy’s Disease is a slowly progressing disorder. It is often ten or twenty years between the time of onset and our first real life-changing issues. During that time, we have the opportunity to make several choices. As the severity of the condition increases, even more choices will have to be made. We cannot just shut down. We have to recognize the choices and opportunities available, and decide what is best for us.

For those of us living with Kennedy’s Disease, the minute we give up the steering wheel (stop fighting, stop exercising, or lose hope), we become a passenger and no longer have a say as to where we are going and how we get there.

For me, I am a ‘man’ and I still like driving. I also like to know where I am going. I might not always stop and ask for directions, but that does not mean I am lost. 😜

I have a saying, "A bad attitude is the only handicap in life." What I mean by that is we can never give up hope. We have to believe there is a light at the end of the tunnel. We cannot give up on ourselves because of our current situation or fears of what might happen in the future. When we do, we no longer have any choices and someone else will make the decisions for us. 

In other words, you have to be your own advocate for your physical, mental, emotional and spiritual health. I also believe that those of us living with this condition need a good co-pilot. Our spouse, significant other, soul mate, or best friend becomes a critical element in our future success. She or he needs to be involved in the decision-making process. A partnership in the truest sense is needed because we cannot always see the forest because of the trees.

So, I will ask again, who’s driving the bus?

Bus Photo: https://www.maxim.com/tag/vw-bus

Quote: https://quotlr.com/

Progression is not always a bad word

Emerson said, 

"Life is a journey, not a destination." 

I write often about my life’s journey. In an earlier article, I used the analogy that the journey is like crossing a stream on stepping-stones. Each stone is a life experience that prepares us for the next one. Before we can fully step onto the next stone, we have to be willing to remove our foot from the previous one (our past beliefs, fears and anger).

It is possible to become so involved in the current stepping-stone (life experience) that it becomes nearly impossible to move forward. We have finally accepted “what is,” so we take a deep breath and say, “I can handle this.” Then, we cling to the moment refusing to let go. This usually happens for one of two reasons: fear or contentment. Today I will focus on fear.

Fear wears many masks. For example, something devastating happens in our lives and we just cannot move on. In fact, we would do anything to go back to the moment just before the crisis. It could be the loss of a loved one, a catastrophe, or a serious disease, or in my case Kennedy’s Disease. Whatever the reason, we find it difficult, if not impossible to move beyond it. Paralysis sets in and over time, wallowing in "what was" and "what if" and “why me” thoughts incapacitates any rational thinking.

I was living in the "contentment" mode for several years in my twenties. It took the realization that I had Kennedy's Disease to shake me to the foundation of my soul. It challenged most everything that I felt was sacred. The word entitlement perfectly describes my thoughts at the time.

My current journey over the last forty years is one filled with many challenges and even more unknowns. While going through something like this, acceptance does not come easy because it is difficult to look beyond the immediate fear, helplessness, confusion and pain.

Yet, once we can see beyond the moment, we tend to come out of these experiences stronger and more appreciative of what we have. We become more aware of the good that does surround our lives. We see and experience life a little differently because we are different. We are a survivor. And, with that realization, we take the next step and find life does go on.
  

Acceptance is a difficult pill to swallow. By breaking it into smaller pieces, however, it is easier to take. We learn from each experience. These small moments in time are like stepping-stones across a wide stream. Each one builds confidence and makes us more willing and less fearful to take another step.

Have I swallowed the entire pill and totally accepted my situation? Not even close. For I am continually being challenged. Nevertheless, I am progressing. Today, I am far more appreciative and understanding because life is still good and I know I can live with this disease. 

In addition, I found buried within this pill called "acceptance" something called "gratitude."

Image: https://steemit.com/selfgrowth

Always Remember, You Are Not Alone

Several times a week I receive emails or comments from readers. Often, the person is reaching out, looking for help or support. Most of the time, it is the spouse or another loved one who makes contact on behalf of another. Last night I received a heartfelt request from a young woman whose husband was recently diagnosed with Kennedy's Disease. Below is a portion of my response to her. I post this hoping it might also help others.

______________________

The early years of Kennedy's Disease are the worst. Acceptance is difficult. You keep hoping and praying this is a mistake. You hide the changes that are going on in your life; often from even the ones you love the most. You constantly worry about losing the respect of others because you are no longer able or capable. Pride is a terrible adversary.

Worst of all, you believe you are letting down the ones you love. You are supposed to be the one who takes care of your spouse and your children. You visualize what you will be like in the future as the disease progresses and it crushes your hope. It becomes a constant battle of mind and emotions. And, all you do is make matters worse. You feel alone and isolated from the world you knew and loved.

Forty years of living with Kennedy's Disease affords me the opportunity to share with others that there is a life still worth living. Many of the fears I harbored in my thirties never came true in the way I envisioned them.

Living with Kennedy's Disease is a growth opportunity. You learn not to take things for granted and to be joyful and thankful for this wonderful life you have. You discover things about yourself that you never would have imagined prior to Kennedy's Disease. Since you read my blog, you know how important my gratitude journal is to me. It is my way of giving thanks for those special moments each day.

YOU ARE NOT ALONE. Those of us living with Kennedy's Disease are a family. We care about each other and we share our learnings and experiences. I have learned so much from my KD brothers. And, during my darkest hours, they lifted me up and helped me move forward.

My most important learning was life doesn't end with Kennedy's Disease. It just progresses in a different direction.

Before I end, I need to remind you that a spouse also has a difficult path ahead. The spouse often is the recipient of the anger, frustration and moods of the husband. My wife is my greatest blessing. She is there when I need help. She steps aside when I need to do something for myself; even if it means I will fail. She learned that living with Kennedy's Disease is not just something the husband goes through.

Conveniently Forgetful

This morning was the first fall weather of the year. It was 48 degrees. It felt like fall and our two dogs  loved the cool morning air. Then I noticed my hands didn’t want to function normally. And, I remembered what colder weather brings for many of us living with a progressive disorder.

My mind must put up a protective barrier sometime each spring to block out thoughts of what I just went through. Constantly having cold feet and hands is one thing, but not being able to effectively grip things, like zippers, is more of a problem. It impacts getting dressed and undressed, brushing my teeth, eating, typing, and so much more. Wearing gloves all the time is not the answer. I just have to accept it, be more mindful of my limitations, and move on with life.

Fortunately, we’ll still have some warm days between now and Christmas. And, somehow I’ll manage to survive until March when the hands will thaw out again.

Then, sometime in April or May, I’ll forget about the last winter and the increased challenges it brought. It sure is convenient …

Clinging to ‘What was’

Those of us living with Kennedy’s Disease often find ourselves “wishing, and hoping, and praying” for a treatment or cure for this condition. I feel this process is healthy as long as it doesn’t become an obsession. 

There is another emotion not as healthy, however. FEAR … of what is happening … of what will happen … of what I will become … of what I am doing to my loved one. Fear of the unknown is something most of us experience at some time. It can be paralyzing. It can also cause other health issues and be destructive to relationships.

Yet, when you really look at the actual fear, it is usually based on ‘worst case’ assumptions and scenarios. 

I have mentioned several times in this blog how fortunate we are to have Kennedy’s Disease (SBMA) when compared to many other incurable conditions. “Fortunate!” Are you asking if I am crazy about now? Yes, perhaps I am, but that is beside the point. What I mean about being fortunate is “the progression is slow.” The snail’s pace of the progression allows us to accept and adapt. The progression is so slow at times, it can feel like it stopped. 

No matter how hard we try, there are times that the fear of ‘what is’ and ‘what will’ penetrates our rational mind. It usually surfaces when we are experiencing a new symptom–something we had escaped until this moment. The fear drives a wedge into our comfort zone; tearing at the delicate membrane of ‘acceptance’ that we so cherish and need. 

We were comfortable not having to consider ‘what next’, but now the question explodes into our consciousness. “WHAT NEXT!”

 

The truth is that we don’t know what is going to happen next. To speculate is unproductive and unhealthy. There is only ‘what is’. Before we can move on, however, we need to accept and adapt to the current change in our condition. I don’t believe suppressing the fear works. I believe you need to face it, analyze it, and break it down into facts and truths before you can rid yourself of the speculation of ‘what is to come’. 

For me, it helps to close my eyes and take slow deep breaths (abdominal breathing). When I am relaxed, I smile. Things never seem quite as bad after I smile. When my thoughts turn toward the unknown, or what might happen tomorrow or in the future, I take another slow deep breath and ask, “What is happening right now?” There is something calming about this practice. 

That doesn’t mean you shouldn’t plan for the future. Preparedness is good. Most of us are good problem solvers, so when I ask, “If this happens, then how do I continue to be safe, loving, productive, mobile and functioning,” I address a potential need in my life. 

 

Now, before you disregard everything I wrote today, close your eyes, take a slow deep breath …and smile. I am.

Coping Skills – Mind, Heart and Life

As I mentioned in an earlier post, I ran across a link to the ALS Association’s ‘Living with ALS Manuals’. Since many symptoms with ALS are similar to Kennedy’s Disease, I explored the manuals and found some of the information relevant and potentially useful for those of us with SBMA. 

Today’s manual, “Coping with Change” also has some excellent insights into getting through the

shock of a life changing diagnosis and moving on with your life. It is meant for the individual as well as the family members. The author’s writing style is comfortable and personal – like he is talking directly to you. I highly recommend reading this manual no matter where you are in the process of living with Kennedy’s Disease.

Table of Contents

·         Coping with the Diagnosis
Beginning Your Journey
Reactions to the Diagnosis—The Author’s Observations

·         Coping in Your Mind
Accommodation
Acceptance
Self-survival
Decision Making
Feeling Different and Isolated

·         Coping in Your Heart
Caregiving 
Intimacy and Sexuality 

·         Coping with Life
Just Between You and Me 

“This manual is designed to provide a framework for you to consider thoughts, feelings, and responses to the diagnosis of ALS—in yourself or in a loved one. As such, it is written in an informal and personal manner. The manual consists of four sections. 

The first section, “Coping with the Diagnosis,” explores reactions people may have when they, a family member, or a friend is diagnosed with ALS. Understanding the broad spectrum of normal responses may assist you in knowing that you are not alone in this disease. Anxiety, depression, communication, and support will be discussed.

The second section, “Coping in Your Mind,” presents some possibilities for helping shape your thinking, as well as ways to live through the various transformations you will experience. Such issues as accommodation and acceptance, decision-making, and quality of life are discussed. 

The third section, “Coping in Your Heart,” covers caregiving and how an individual living with ALS can come to terms with receiving help from others. In addition, issues surrounding intimacy and sexuality and how these personal concerns are affected by ALS are candidly discussed.

The last section, “Coping with Life,” focuses on living life to its fullest. This segment looks at both the possibilities and the difficulties of managing your life with ALS.”

I will reiterate, no matter where you are at in the process of learning to live with Kennedy’s Disease, this manual will be helpful for both you and your family.