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

Something is Wrong!

It is sneaky. It creeps up on us during the prime of our lives. We initially deny its existence, but it just will not go away. We make excuses for a fall or the inability to do certain things, but something inside tells us “something is wrong.”

Then, when we finally admit we might have ‘it’, fears find a way of wedging their way into our daily thoughts. We feel isolated - alone and begin to imagine the worst. Because the disease is not well known, we have no idea what to expect. All we know is whatever is happening cannot be good.

As the disease progresses, we begin to pray for a miracle, or at least a treatment. We worry about our family’s future. We wonder if we will have to retire early. And, if we do, what does that mean for the family’s financial well-being?

Other little things begin to nag at us. Who will mow the lawn or do the home repairs? Can we afford to send our children to college? The concerns grow, and, they amplify as our strength fades. And, right about then, our manhood is challenged.

Our friends and family notice the change and want to help, but we shut them out. When that happens, all we have left is our hopes and prayers.

The reality is that the disease does progress. Fortunately, it progresses slowly. There are also brief periods of stability. These periods are something we look forward to because they give us time to adjust to our current capabilities. Unfortunately, we are never prepared for the next progression.

Whether the symptoms begin in our twenties or not until our sixties, the only thing we know is our strength and capabilities will decline.

This is “living with Kennedy’s Disease.”

Because the progression is slow, the actual disease is not nearly as bad as the emotional aspects of learning to live with the disease. Our fears are our worst enemy. Once we learn how to control the fears, we begin to adjust and start living again. When that happens, we see …

There is life after Kennedy’s Disease.

 

The Journey – Finding the Spirit to Continue On

I have written about the journey several times over the last six years. It would have been interesting if I started this blog while I was in the early days of learning to live with Kennedy’s Disease. I am certain my perspectives have changed dramatically – hopefully for the better.

Regularly readers contact me or comment on a post. I love hearing from you because it reinforces that we are all in this together. We reach out when we are in trouble. We help whenever we can. We learn from each other. And, we share that knowledge with others who are also finding their way in this new world.

Last night while transferring from my chair to the bed, I flashed on how accepting I have become of this evolutionary process I am experiencing. My daily routines are much the same, but they have been modified many times to accommodate my capabilities. When a loss of a capability first happens, there is always some frustration and angst. After the initial, “Oh no, not that too,” follows with a period of experimentation. Can leverage solve the problem? Can a tool or aid help? If none of the experiments work, the next question is can my wife do it?

Someplace in the middle of this process of discovery, I end up asking two questions –

“How important is it?”    

“What if I can’t find a solution?”

Initially, there is often the belief that I’ll never be able to survive without that. I call it the end of the world scenario. This was especially apparent when I could no longer perform the work that I loved. Somehow I survived and life went on. 

Through the forty years of the progression I learned a valuable lesson. My spirit is a lot stronger than I ever imagined. And, if my spirit is willing, I will find a way.

Acceptance allows the spirit to remove most of the stumbling blocks we face. Once they are removed, the spirit finds a way to move on with our lives. There is an old adage that is appropriate. “When life gives you lemons, make lemonade.”

There is another one I like from Alexander Volkov. “Your journey never ends. Life has a way of changing things in incredible ways.”

If you believe this, then EMBRACE THE JOURNEY.

Photo: Thehumanspirit.net