Courage

“Courage is not having the strength to go on;

it is going on when you don’t have the strength.”

I reread the above quote from Theodore Roosevelt this morning. It rings true and is a positive reminder for me.


I still remember a friend who was near death. The cancer had spread throughout her body. Even though she couldn’t eat, couldn’t really sleep because of the pain, and was so weak she could hardly move, she always asked how I was doing. She felt terrible that I had Kennedy’s Disease and she prayed for science to discover a cure for it. She accepted that her time on this earth was near its end, so she focused her energy and prayers on others who still might have a chance. That is real courage and strength.

I have a friend living with Kennedy’s Disease who has experienced several strokes over the last few years. He has partial paralysis on his left side including his throat. Speech is now difficult and limited to short conversations. The hands struggle to perform basic functions. Walking, and even transferring, is out of the question. Yet, he is always upbeat and positive about life. He enjoys spending time with his family and friends. And, he always finds a way to lift the spirit of others.

We all know people like this and even some who have beaten the odds. People who found a way to maintain a positive attitude during ridiculously difficult times. They are survivors–if not physically, than within our memories. Their courage supports us during our own difficult times.

My recent slide, fall, and its extremely slow recovery challenges my faith and courage. When I have the occasional lapse and my attitude slumps, I just think of these friends for a needed adjustment. How can I wimp out when they didn’t?

Photo: Schuitema - Human Excellence Group

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

Still lots to learn

Living with Kennedy's Disease provides an opportunity for learning more about life and myself every day. 

I believe "nothing comes into existence uninvited." Everything that happens in my life is a potential learning experience depending upon how I respond to the situation. 

I further believe these erroneous beliefs and misconceptions I carry with me are tested repeatedly until I eventually understand and accept reality. If I react negatively to someone's actions, it is because I still have not fully accepted that everyone is fighting his or her own personal battle.

The quotes below are from Maya Angelou, a well-known and respected author and poet.

I've learned that…

• No matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. 

• You can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. 

• Life sometimes gives you a second chance. 

• You should not go through life with a catcher's mitt on both hands. You need to be able to throw something back. 

• If you pursue happiness, it will elude you. But if you focus on your family, your friends, the needs of others, and doing the very best you can, happiness will find you. 

• Whenever I decide something with an open heart, I usually make the right decision. 

• Even when I have pains, I do not have to be one. 

• I still have a lot to learn. 

The "life goes on, and it will be a better tomorrow" comment above is similar to one of my favorite sayings, "This too will pass." My father use to remind me when I was a teenager, "it is not the end of the world," when I would over react to something negative in my life. Even though I did not want to hear it at the time, he was always right. 

In addition, the "decide something with an open heart" comment above goes hand-in-hand with Plato's quote that "everyone you meet is fighting a hard battle." Just recognizing that everyone is tested in his or her own unique way makes it easier to "accept the situation and move on."

Ms. Angelou has many wonderful quotes and sayings. One I particularly like is "a bird doesn't sing because it has an answer, it sings because it has a song." I hope you understand I am singing today even though I still do not have all the answers.

One thing is for certain, "I still have a lot to learn."

How Can I Help?

Acceptance is something I have written about several times over the years. Unfortunately, it is not a light switch that can just be turned on. It is not something that automatically means you are happy again or brings you comfort. In fact, there are still things in my life that I have not fully accepted yet.

This process of rediscovery is a never-ending journey for me. Every time I accept something new about my condition and myself, it is like another awakening. In addition, whenever I find a new way to express myself and help others, it opens another door.

Several years ago, I was watching "Saturday Night Lights." The high school football team was down 26 to zero at the end of the first half. The coach ended his halftime pep talk to his players with the following. "Every man at some point in his life is going to lose a battle. He is going to fight and he is going to lose. What makes him a man is that in the midst of the battle he does not lose himself."

Dr. Phil says it another way, "What happens in your life will affect you, but it does not have to define you."

As I travel life’s highway, I need to focus on the moment, forget about the past, and not be too concerned about the future. The only thing I have any control over is this my attitude at this moment.   

Another favorite saying of mine is, "Nothing comes into existence uninvited." If I worry about what could be, it will probably come to pass (or maybe even something worse). On the other hand, if I focus on what I can do today to make a difference for others, then the past and the future really does not matter.

So, my question for you is...

I Am Not A Victim

[This is another take on a 2009 post of mine]

One of my favorite saying is, "I choose my attitude in every situation." I choose not to consider myself a victim.

I will date myself by remembering the old Timex commercials where the watch would go through some ridiculous situation that no watch should survive and then John Cameron would say, "Timex—It takes a licking, but keeps on ticking."

A little while back, there was an article in the Goodlife Zen titled, "Why Some People Thrive No Matter What Happens.” The guest author, Gail Brenner, commented, “The key to remaining resilient is to not identify yourself as a victim.”

The dictionary defines "resilient" as “recovering readily from adversity; rebounds easily.”

Ms. Brenner commented in her article, "Resilient people understand that anything can happen. They realize that the world is not fair and that difficult things can happen to the most wonderful people. They figure out how to pick themselves up and move forward. It might take a long time and happen in tiny increments, but the predominant movement is forward—toward living and not just existing."

Another key comment in the article was, "Being resilient means understanding that we cannot control what happens to us, but that we can control how we relate to what happens. We get to choose. We can carry around the tragic events of our lives, letting them color the way we view ourselves and the world, or we can prosper." 

"…People who are resilient accept what happened, but resist defining themselves by it."

The author mentioned a study that revealed several qualities of resilient people. “Resilience People have:

• Strong relationships with people who support, encourage, and reassure 
• The willingness to allow strong feelings – anger, grief, fear – without avoiding them 
• Confidence – an attitude of "I can," rather than "I can't" 
• Trust in oneself and one's abilities 
• The capacity to learn from life experiences” 

“Resilient people nurture themselves, and seek help when needed."

Photo: https://elixirconsulting.com.au

The only real disability in life is a poor attitude

Living with Kennedy's Disease, or any progressive disorder, is challenging. It is also a learning experience. It is easy to become caught up in the 'feeling sorry for yourself" mode. But, all that does is make life for you and your loved ones miserable.

Many years ago I came across this poem, "The Man in the Glass," by Peter Dale Wimbrow, Sr.

When you get what you want in your struggle for self

and the world makes you king for a day.

Just go to the mirror and look at yourself

and see what that man has to say.

For it isn't your father, mother or wife

whose judgement upon you must pass.

The fellow whose verdict counts in your life

is the one staring back from the glass.

He’s the fellow to please, never mind all the rest,

For he’s with you clear to the end,

And you’ve passed your most  difficult test,

If the man in the glass is your friend.

You can fool the whole world down the pathway of years,

And get pats on the back as you pass,

But the final reward will be heartache and tears,

If you’ve cheated the man in the glass.

The point of this journey is the journey itself. It can only be successful if you live in a way that allows you to enjoy the life you are given.

Live Each Day Like It’s Your First, Not Your Last

Most of my followers know about my Words of Power. The one I find myself using quite often as my Kennedy’s Disease progresses is, 

“I choose my attitude in every situation.” 

I find that much of my frustrations are the result of me clinging for dear life to my past abilities and capabilities. When I take a step back and change my attitude, it changes my perspective. When that happens, it is amazing how different I feel. I now become a problem solver rather than a problem hater.

I ran across this LifeHacker blog article and thirteen-minute video and need to share it. It is an important message about perspectives. Click on the link below for the full article and video.

LiveEach Day Like It’s Your First

“In a recent TEDx talk., Leanne Delle, a writer and registered nurse, explains the problem with “last day” mentality. While focusing on an expiration date can be motivating for some people, it’s stressful for most of us. It has all the makings of an existential crisis. It makes us feel we’re not doing enough and we’re not sure what we can or should do in that limited amount of time. Instead of living each day like it’s your last, Delle suggests the opposite:

Live each day as though it’s your first. If we live each day full of wonder and appreciation while discovering a genuine sense of joy, I believe that motivation for our truest passion would be more likely to present itself...I would argue that we can deal with day-to-day routine and responsibilities while pursuing our passion. It doesn’t have to be all or nothing. …”

The end of another year

My legs went into a slide in early November. The quads and left knee weakened dramatically. Several times a day I felt the left knee was going to buckle on me. I haven’t experienced anything like this in years. At times it was difficult not to become too concerned about my future capabilities. Compromise and compensation, leverage and innovation—I tried everything I could think of. I was not going to give up or give in.

Some days I could only accomplish 50% of my normal standing leg exercises. I was also finding it difficult to pull up my pants after using the toilet. Several times it took 2-3-4 attempts while having to rest for a moment or two between attempts. Occasionally I had to have my wife help. Frustration and even anger wedged its way into my normal positive attitude. But, I am a stubborn cuss.

I never gave up trying to complete my standing exercises. I pushed myself while always considering my safety. Over time I was able to regain enough strength to perform 80% of my previous reps. A week ago I wrote in my KD exercise journal that perhaps this was the new normal for me, but I still refused to accept it.

This morning when I first stood up I sensed a strength in my legs that I haven’t felt in a couple of months. When I began my standing leg exercises I could feel a difference—a confidence in my leg muscles. Muscle-memory kicked in and I found myself smiling. I performed 120 steps in place without a problem. I then performed 100 standing leg lifts without breathing hard. I was on my way and life couldn’t be any better.

I don’t know what the new year will bring, but I can tell you it is ending in a most gratifying fashion.

Be well and stay upright!

Mule Photo: http://likesuccess.com/topics/6261/stubborn

Happy New Year Photo: http://www.wishespoint.com/

I still need to remind myself …

I like to consider myself a fairly optimistic and upbeat person. However, occasionally, I need to remind myself that things could be a whole lot worse.

• Kennedy’s Disease’s progression isn’t fun, but it is slow. There is plenty of time to adjust your lifestyle and work on acceptance.
• Researchers move closer to finding a treatment every year. When I was first diagnosed, there was only a glimmer of hope. Now, researchers are trampling on the doorstep.
• Current mobility aids have come a long way in helping to ease the transition process. 
• A support system is in place. In the last fifteen years, the Kennedy’s Disease Association, KDA, has grown from its infancy to an organization capable of supporting those living with this condition throughout the world.

I keep these two posters on my desktop. They say it all.

A Less Traveled Road

About once a month for about twenty years, my wife and I would get in the car on a Saturday morning and get lost. We would find a road we had never been on, and just go. We wouldn’t look at a map and we would stay off major roads. If something sounded interesting, we’d stop and explore it. It was always challenging and fun.

I ran across this saying from Rumi that is appropriate for those of us living with a progressive disorder. The road that we travel has no roadmap to follow. We discover things about ourselves almost every step of the way. 

The words of power for today are:

I decide how I will live my life

Even though things happen to me that are out of my control, I have this rheostat in my brain that decides how I will perceive and respond to the situation. I can turn it one direction and wallow in my pity, or I can turn it the other direction and make the most of the situation. 

I refuse to be a victim

When I was going through Survival (SERE) School before going to Vietnam, the instructors put us through three weeks of hell. At first, it didn’t seem too difficult, but over time the continued assault on our bodies and mind wore us down. We began to doubt many assumptions. What was initially just a game became very real. 

When we had gone a couple of days without a meal, an instructor told us about this rheostat in our brain. He explained, “This rheostat allows us to perceive things differently.” He pulled a worm from the ground and said, “Can you imagine eating this?” He went on to explain that at some point in our training we are going to be hungry enough to be thankful for having this worm to eat. During the three weeks of survival training, that rheostat changed many perceptions.   

It is no different today. I decide if I want to play the victim card or if I want to rise above the restrictions placed upon my body.

What was, or should be, doesn’t matter in how I live today

Regaining Control of your Life

If you are a follower of my blog, you know that I use positive sayings to influence how I live. If I see that I need an attitude correction, for example, I’ll start digging through my notes and books I read until something strikes home.

Living with Kennedy’s Disease, or any progressive neuromuscular disorder, requires regular attitude adjustments or you can find yourself wallowing in the gutter. Thoughts are powerful and can change your perceptions immediately.

Today’s topic is the beginning of my "Words of Power" series. These words are important to me. It helps keep me going, especially when I am a little down.

“My life is controlled by what I accept and believe”

This is a powerful statement. One that forces me to place any blame for a negative attitude on myself. My wife mentioned recently that I never complain. My response was, “Why should I? No one ever listens.” 

Unfortunately, my comment isn’t entirely true. I LISTEN! My subconscious listens to what I think. I don’t even need to verbalize the thought for it to do damage.

For that reason,

“I choose to entertain only positive and nourishing thoughts”

That doesn’t mean something negative or destructive doesn’t try to wedge its way in occasionally. But, when I realize what is happening, I pull out my gratitude journal and just read a few pages of my random thoughts. 

B.K. Clive said it best. ““Today, just take time to smell the roses, enjoy those little things about your life, your family, spouse, friends, and job. Forget about the thorns -the pains and problems they cause you - and enjoy life” 

 

Yesterday – Today – Tomorrow

I love this quote from Melchor Lim. We can’t change the past, we are living in the present, but we do have some say about the future. 

I write about attitude quite a bit in this blog because there are times in our lives where we feel trapped. We begin to believe that our destiny is already written for us. Living with Kennedy’s Disease, a neuromuscular disorder, can have that effect. 

I know, at times, I have to be careful about feeling trapped with no escape. It happens when I am most vulnerable. Some capability is taken away from me, or some desire to do something is no longer an option. Out of frustration, I’ll forecast these negative thoughts into the future.

Fortunately, someone who reads this blog writes or comments and I realize that there is still tomorrow. If I become creative, perhaps a reasonable solution can be applied to the situation. At times, we are our own worst enemy. During these times, we forget who we are, and, all that we have triumphed over. 

Our lives didn’t end with Kennedy’s Disease. Yes, our world is constantly changing, but so was it before this condition entered our lives. Will we let the past pull us down, or the future raise us up? The choice is ours.

Photo: FromUp North

Real Courage

“Courage is not having the strength to go on;

it is going on when you don’t have the strength.”

I read the above quote from Theodore Roosevelt this morning and told myself I needed to write a blog article.

We have a friend who has just completed her cancer treatments. She has had chemo, radiation and surgery. During this long grueling battle, there were times she couldn’t eat, other times she couldn’t sleep, times she was so weak she could hardly move, and many times where she experienced terrible pain. Her attitude amazes me. She knows she is going to beat this. 

I still remember a friend who was near death. The cancer had spread throughout her body. Even though she couldn’t eat, couldn’t really sleep because of the pain, and was so weak she could hardly move, she always asked how I was doing. She felt terrible that I had Kennedy’s Disease and she prayed for science to discover a cure for it. She accepted that her time on this earth was near its end, so she focused her energy and prayers on others who still might have a chance. That is real courage and strength.

We all know people who have beaten the odds. People who found a way to maintain a positive attitude during ridiculously difficult times. They are survivors–if not physically, than within our memories. Their courage supports us during our own difficult times. 

When I have the occasional lapse and my attitude slumps, I just think of these two friends for a needed adjustment. How can I wimp out when they didn’t?

Photo: Schuitema - Human Excellence Group