Moving Beyond Misunderstandings

Frustrations are common for those of us living with Kennedy’s Disease. Our male egos are a constant burr under the saddle. These can lead to communication problems, especially with those you love.

Back in 1992, the book, Men Are from Mars, Women Are from Venus, was hot commodity. Everyone was reading it. The author, John Gray, was on all the talk shows explaining what the book is about. Wikipedia summarizes the book in this way:

“The book states that most common relationship problems between men and women are a result of fundamental psychological differences between the sexes, which the author exemplifies by means of its eponymous metaphor: that men and women are from distinct planets—men from Mars and women from Venus—and that each sex is acclimated to its own planet's society and customs, but not to those of the other. One example is men's complaint that if they offer solutions to problems that women bring up in conversation, the women are not necessarily interested in solving those problems, but mainly want to talk about them. The book asserts each sex can be understood in terms of distinct ways they respond to stress and stressful situations.”

After many years of marriage, I firmly believe Mars and Venus are in asynchronous orbits. I say ‘apple’, my wife hears ‘orange’. I agree and my wife hears disagree. My wife explains the problem, I provide the solution, and we end up mad at each other. I ask why and she asks why I was not listening. Fortunately, it isn’t that bad, but when it happens, bruised egos create tense moments.

Fortunately, I am blessed with a wonderful loving person to share my life. One who will usually put up with all my crap. 😊

I wrote the following several years ago. Writing them down and following them do not always go hand-in-hand, however. This is a refresher course for me.

1. You have the right to respond but not the obligation.

You always have the right to express your opinion and discuss an issue further. But, only if it serves a purpose and helps you move forward. You also have the right not to engage and not respond.

2. Realize that others’ views of your opinions do not diminish your worth.
You are who you are and you are entitled to your thoughts and views. Your opinions are the position you hold at this moment, which may change over time.

3. It is okay to be misunderstood.

The newspapers and tabloids thrive on misquoting and manipulating words. In our daily interactions, others will take what they want to take from the conversations. You cannot do anything about it. And, if they do not like what you have to say, so be it.

4. Feel the emotions without rationalization.

As much as we would like to think that we humans are a rational species, we are not. We are highly emotional, and emotions drive a lot of what we say or do. You can waste all the time trying to figure out why someone misconstrued what you said. In all likelihood, what you expressed triggered a defensive response in them. It has nothing to do with you. So focus on how you feel.

Key Point: The more important the person is to you, the higher the emotional charge.

You may feel angry, upset, fearful, disappointed, hurt, betrayed or any other emotion. Write about your feelings, or meditate on them, or just sit quietly and allow them to go through you. Take your time—there is no shortcut for releasing your emotions. One thing I found helpful is to acknowledge my feelings at that moment are ‘emotional’. Placing a tag on them helps release the anger or frustration.

5. Write an imaginary response.

If you feel you need to express more of your thoughts and feelings write them in a letter. What would you say to the person who you feel wronged you? Write what you would want to tell them and how the interaction made you feel. An amazing release comes from putting thoughts and words to paper.

6. Sleep on it.

If you decide you want to respond and you want to discuss the issue further, wait a little while. Think about what you want to say, and if it is important, maybe even draft a response. Give yourself a day or two. In all likelihood, you will dismiss the issue and move on.

7. Let it go.

Often, the best course of action is to let it go. Do not hold a grudge or keep bringing it up. You do not want to add fuel to a fire in your heart. If the other person was not happy with your decision, you cannot change that. And, you cannot satisfy someone who is adamant about having an argument. Do yourself a big favor and do not engage in further discussion.

Sometimes the best opinions are the ones that remain unexpressed. Instead of trying to explain and validate your opinions, move on and do something that is more meaningful.

Key Point: If a love one is involved, always-always-always let them know you love them.
Letting go is freedom. You cannot force anyone to see your point of view. However, you have the power to drop the issue and move on.

After all, Men Are from Mars, Women Are from Venus.

BUT, if you really want a healthy relationship, follow this advice: 

"If you really – I mean really! – want a peaceful, loving, joyful and happy relationship as a couple, if you want to learn how to stop arguing for good, then the first step is to admit this desire loud and clear to yourself and to your significant other.

That’s the easy step. The next step is the game changer and the cure to ending arguments: You have got to KILL OFF YOUR EGO.

That’s it. That’s the big cure that works every single time. You cannot take your giant ego into a peaceful loving relationship. It Simply Doesn’t Work."

Quote: https://www.brainyquote.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

The Roller Coaster Ride of SBMA

This last week two people have emailed me expressing their frustrations and anger with Kennedy's Disease. I can understand why they feel this way.  

Zig Ziglar said, “Getting knocked down in life is a given. Getting up and moving forward is a choice.” Feeling overwhelmed is something most of us with Kennedy's Disease have experienced. I have often said that the mental and emotional aspects of the Kennedy's Disease are as difficult as the physical ones. 

Today's post is a rambling of thoughts on the mental and emotional ride we go on after being diagnosed with Spinal Bulbar Muscular Atrophy.

Frustration is the anchor that keeps us from setting sail. What an interesting comment. Until we can let go of these feelings, we cannot truly live.

We have to ‘let go’ before we can move on. Trying to hold on to what we were, or currently have, is a losing proposition, especially with a progressive disorder. It is one that will always end in disappointment and frustration. Letting go of something we cherish, does not happen overnight. It could be the most difficult thing most of us will ever have to do.

Fear is False Evidence Appearing Real. Part of the difficulty of accepting our current condition is the fear of what tomorrow will bring. Fear of what might become is most often the reason we do not want to let go. We want to hold on to today and even wish for that miracle that will bring back normalcy (as we knew it). H. P. Lovecraft said, “The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.”

Patience fosters acceptance and realism tempers expectations. I still get into trouble because I believe that I should be able to do something. If I would take the time to examine my current capabilities before beginning some task or project, I would be more accepting and comfortable with my current capabilities and expected results.

We judge what we do not understand. We tend to forget we are not the only people with problems. Thoreau said, "Could a greater miracle take place than for us to look through each other’s eye for an instant?" Be kind, for everyone you meet is fighting his/her own battle. It is easy to lash out when something does not go right. People do not wear signs explaining what is going on in their life. The person could have a heart condition, or just lost his/her job, or been in an auto accident that morning, or their child has cancer, or a spouse just passed away.

I will end today with another truism. Gautama Buddha said, "Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving and tolerant with the weak and wrong. Sometime in your life, you will have been all of these."

Clip Art:  http://mariafresa.net/single/2069542.html

Anger and Frustration

Several times a year someone will contact me lashing out at the world because he has Kennedy’s Disease. He vents his anger, frustration and blame at me for being accepting, or at the research community for not having found a cure, or at God for allowing this to happen to him.

Surprise - surprise, I was not always accepting. In fact, several years ago, I wrote a short story based upon some of my experiences. The basis for the story came from "The Nine Stages of Grieving" published by the University of Buffalo. When I read the story the other day, I realized it was not very good. It was, however, a sincere account of my perspective as I transitioned through most of the stages.

Since everyone is unique, the stages do not necessarily come in the order described below. 

Denial

It is difficult for you to accept your own condition. As a result, you will deny the reality of the disease and make excuses for your falls, cramping and fatigue.

Shock

Once you are convinced that you have the disease, reality sets in. You keep your thoughts to yourself, but find it hard to think of anything else. When asked what is wrong, you do not want to talk about.

Anger

The "Why me?" stage. You are angry at what you perceive to be the unfairness of the situation and you may project it at others, especially loved ones. This is a frustrating stage for family and friends because it follows the period when you were not talking.

Bargaining

At some point, you will attempt to bargain with some sort of deity. You will probably offer to give up something in exchange for the return of your health. Family and friends notice a remarkable change in your attitude.

Guilt

You may find yourself feeling guilty for many things you did, or did not do. Or, you might feel embarrassed for all the emotional pain and financial stress you are and will be causing your family. You often apologize for things no one else remembers. In addition, if you have a daughter, you are the reason why she is a carrier.

Depression

You may at first experience a sense of loss. Mood fluctuations and feelings of isolation and withdrawal may follow. Encouragement and reassurance by others will not be helpful. Your family and friends become concerned. They will try to reach out to others in an attempt to help.

Loneliness

As you go through changes in your capabilities, you might become reclusive and not engage with anyone. You believe no one understands what you are going through, leading to feeling alone, isolated, and afraid.

Acceptance

When this stage arrives, it does not mean happiness or bring comfort. Instead, you are now able to accept and live with the reality of the situation. Life once again moves forward. You find that you can easily admit to yourself and others that you have the disease. You might even tell yourself, “I can live with this.”

Hope

Eventually, you will become mentally and emotionally comfortable with your condition. As the thought of it becomes less painful, you begin to look to the future and realize there is life after Kennedy's Disease. You embrace special moments in life with family and friends.

At the end of my nine stages, this is what I wrote:

"As with most everything in life, time heals most wounds. Many of my initial fears did not materialize. I reached out to a community of others living with the condition and found I was not alone. I learned that people were accommodating and would be there to help. Instead of being a burden, I was still valued as a husband, father, grandfather, great grandfather, friend, and business associate. Just as important, I found I still had something to contribute to the world.

With this knowledge, I discovered something that had been missing recently in my life – Hope."

This is my story, what is yours?

http://pixar.wikia.com/wiki/File:Anger-away.jpg

A work in progress

This is part two of my “Words of Power” series. 

The following statement is the springboard for change in my life.

I won’t let any person or situation ruin my day

If I believe this, then …

I choose how I respond to every situation

If I regularly remind myself that nothing is going to ruin my day, it becomes much easier to choose how I react to any given situation.

If I elect to take a deep breath and count to ten before responding, my perspective of the situation can change. And, if my perspective changes, it can change for others that are involved. My reaction (response) can make the difference as to how the rest of the day will play out for me.

This process continues to be a work in process for me. I am substantially better than I was just a year ago, but there is still work needed. 

For example, if something happens that I consider negative, I can be angry, frustrated, hurt or disappointed. This week’s experience to test my belief in the process started with my wife finding a nail in my van’s tire. I was initially disappointed and a little frustrated, but I decided that nothing was going to ruin my day. I felt the situation was actually positive because the tire wasn’t flat. I could still drive it to the tire shop.

So, everything was good. I called the shop to see if I could get in that morning and they said bring it down. All good, right?  When I arrived at the shop, there were only two people waiting. Still good, right? Well, two hours later my van was still waiting to be worked on. I reminded myself that it could be worse. And, finally, three hours later the tire was repaired. I kept reminding myself this was all good as I paid my bill and drove home. 

Well, something wasn’t right because when I arrived home, I was frustrated. And, when my loving wife tried to empathize, I misunderstood her intentions. So, I ended up letting something that I had no control over decide my day as well as my wife’s day. Not good. Apologizes were needed and the point of this post proven.

As I mentioned, it is still a work in progress. J

Coping with anger and frustration (follow-up)

A couple of weeks ago I wrote about a coping exercise that a doctor gave us on the KDA chat room. The article, Get Your Mind Out of the Gutter, provided an exercise routine to refocus when you are angry or frustrated or having problems coping. This week, one of my favorite bloggers, Mary Jaksch, wrote in ‘Goodlife Zen’ about the benefits of becoming more ‘mindful’ (refocusing on the present). It fit so well with the coping exercise, I felt it needed to be shared.

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How Mindfulness Transforms Ordinary into Extraordinary

By Mary Jaksch
When the mind is neither in the past or the future and we are completely present, our experience changes in a significant way. Suddenly life seems more spacious and more peaceful.

When we are mindful, we are available for life, and aren’t trapped in our own little world. Whether it’s peacefulness, or anger, or boredom, or elation, or fear – mindfulness allows us to notice what we are experiencing right now.
 

Mindfulness means bringing full, soft attention to the task at hand

All of us tend to let our mind drift when faced with a boring task. The good news is that if we pull ourselves back into the present moment, the task is transformed and boredom soon disappears. So, whether it’s washing the dishes, or cutting carrots, or driving in the rush hour – mindfulness can transform ‘lost’ time into islands of ease.

The first step of mindfulness is to notice what our experience of this moment is like. Whether it’s peacefulness, or anger, or boredom, or elation, or fear – mindfulness allows us to notice where we are at. But we need to go beyond that, we need to become intimate with what is there.

The second step of mindfulness is to connect so deeply that we become what we experience. [The coping exercise we were taught allows this to happen]

Pause for a moment, look away from the screen and take one complete, deep breath. Did you experience your breath? I expect you’ll say ‘yes’. But what about going deeper? Did you become the breath?
 

Mindfulness transforms

Thich Nath Hanh says: “There’s a seed of anger in every one of us. There is also a seed of fear, a seed of despair. And when the seed of anger or fear, we should be able to recognize it, to embrace it tenderly, and to transform it. And the agent of transformation and healing is called mindfulness.”

Mindfulness has the power to transform clinging into generosity, anger into compassion, and isolation into intimacy.


It’s important to be compassionate towards the part of you that wants and wants and wants, and never gets what it yearns for. And with the part that is angry, or sullen, or resentful, or irritated. And with the part that is lonely, aloof, or preoccupied. Or with the part that is fearful, anxious, or rigid. Meet these parts of yourself with tender regard.

Get your mind out of the gutter!

As Kennedy’s Disease progresses, one of the side effects is often an emotional one. Frustrations occur because we can no longer perform certain basic tasks. Or, we are put into situations that we cannot get out of without help … a fall, for example. Frustrations can easily lead to anger. To help us cope with this issue, the KDA had a special guest for Saturday’s KDA chat room.  This is a much longer article than normal, but it would not have been effective to break up the exercise into two posts.

Dr. Julie Bindeman is a psychologist licensed in Maryland and with a degree from George Washington University. Her focus is on life transitions and dealing with the emotions that accompany them. She also has expertise in depression, anxiety, grief and loss.

We all enjoyed participating in Dr. Bindeman’s coping exercise. She has given me permission to post the process in my blog. I am using the actual transcripts of her chat (with only minor changes ) in hope you will give the coping exercise a try.

Below is the transcript of her coping exercise as well as some comments from those that participated in the exercise.

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Dr. Bindeman: I wish that I had magic words or actions that could take away both the actual symptoms as well as the emotions that go with it. What I can help with are some coping techniques that might help the day to day or moment by moment. It can be common with loss to dwell on what had been rather than to try to be in the moment. Asking for help is a great strategy, but certainly not an easy one! So, I would love to share ideas on how to be present in the moment, and prevent your minds from thinking about those things that you had been able to do. Before we start, let me say we tend to not notice a lot of information that we take in with our senses.  And, since this is a whole different experience to do within a chat room versus face-to-face, I hope you all can bear with me. COPING EXERCISE To begin the exercise, locate an object that might be around you. It can be anything -- a rock, a piece of food, a screwdriver. Pick up your object. In order to be in the present, it's important to activate our senses--all of them! I'll need a little bit of leeway on this one, as I'm sure that depending on what your objects are; many of you won't want to necessarily taste them. We tend to use our senses of sight and touch most frequently, so I want to hold off on those two until the end. We will start off with the sense of sound. For those that have food or beverages, close your eyes and think about the sounds used to make them. For those with other objects, tap them on your hands, furniture around you, etc. Listen to the sounds that it makes and how those sounds differ depending on what it was tapped on. For the coffee drinker, you can also listen to the sound of the liquid swishing in the mug.  When you are ready, describe what that was like.

Alright, let's move onto the next sense. Let's try the sense of smell. Those of you with food/drinks are in luck with this one. It might be weird to smell your pen, for example, but perhaps you (and others that might have an object not really smell-worthy) can imagine smells that might accompany that object...an example, a place you might be to use the pen. There will be some objects where using certain senses is more challenging. For these, try to let your imagination take you to a time/place/location where you can associate the sense. Smells can bring up feelings and memories, so let yourself be open to those experiences right now as well. Ready for the next one? Let’s move onto the sense of taste. Again, this one might be challenging for some--I'm not sure I'd want to taste a pen or hole punch. I think those of you with water, omelets, or coffee, will really like the next sensory experience. But again, allow yourselves to associate--food in an office? Or whatever comes to your mind. Describe either what their object tastes like or what associations are made? OK, let's move onto the sense of sight. Really LOOK at your object. What colors do you see? Can you notice textures? What shapes are present? Try to study your object, as if you've never seen it before. Is there a sheen to it? Any scratches? On the pen, any cracks or the letters rubbed off? Hopefully, you are all noticing things to these everyday objects that you hadn't before. Feel free to let your minds wander. Describe what comes to mind. When you are ready, we'll proceed to the last sense ... the sense of touch. For this exercise, if you can, close your eyes, and let your hands experience your object. Feel for temperature, texture, shape, etc. And also, feel free to let your minds wander to anything that you might associate while you are touching your objects. Feel for ridges, edges, etc. See if from your hands, you can conjure up a picture in your minds. Closing Thoughts: One of the reasons I like to teach this exercise to my clients is that you can do it whenever you need it and with whatever you have handy. You now need to consider what trigger points (for example, what mood or situation) will remind you to use this exercise to get you back to living in the present. Using moods as a cue is a great way to remember this. It is so easy to stop being mindful and resent. The absence of these two things tends to be our default. We have little control over our past or our future, but we are able to do something with the present, whether we choose to embrace it or let it pass us by. I know that with the clients that I work with, it is so easy to get stuck inside yourself and to feel sorry for your own suffering. It's hard to remember that every human has their own kind of suffering. Someone earlier mentioned about laughter being the best medicine. This is also such a truism. What makes you laugh? When you are in a funk, seek out something that will make you laugh. Participant Feedback: Dr. Bindeman asked for feedback as to what using all five senses was like. Not necessarily specific things from each sense, but the overall exercise. “What did you experience, notice and learn?” These are some of the comments from the group participating: Slow down...enjoy life's little moments. I am realizing the opportunities available for experiencing everyday life. We all have limitations, and it's easy to get down. When we do so, then we fail to see our opportunities. Appreciate what we have ... not what is lost. This has been a great reminder to truly live in the moment and enjoy the pleasures of life. Don't think about should, could, would, etc. and be thankful for what we still have and can still do. Focus on the here and the now versus getting frustrated because I can’t do something. (Dr. Bindeman: Exactly--rather than look at what you "used to do" observe and note what you "are able to do."). I read a quote from Michael J. Fox, "If you worry about something bad happening and then it really does happen, you've suffered through it twice." I like to use this prayer, “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, and the wisdom to know the difference.” If you spend your day worrying about tomorrow, you will not live for today.

I + V = A

A subject that comes up occasionally with those of us with Kennedy’s Disease is ANGER. I don’t know how many times someone asks if anyone else with Kennedy’s Disease is having problems with anger and/or depression. The term ‘easily angered’ is often used.


The equation: I + V + A

• I = Irritable: cranky, easily irritated or annoyed; abnormally sensitive to a stimulus
• V = Volatile: Liable to change rapidly and unpredictably, esp. for the worse
• A = Anger: A strong feeling of annoyance, displeasure, or hostility

If a person is already irritated (or frustrated) and something unpredictable happens; explosive anger could be the result.


Personally, I know that I am more easily irritated these days. I am not certain it is a side effect of having Kennedy’s Disease, but I do know that often it is the result of my inability to perform normal daily tasks or the accumulation of several frustrations during a day. Then, when I realize I overreacted, I become frustrated again because I shouldn’t have let it get to me the way it did.


Perhaps we are dealing with another part of the acceptance process or as I call it; learning to live with Kennedy’s Disease. Whatever it is, it is not acceptable behavior.


Chemical Help
I know that some people are using prescriptions drugs to help control the volatility. Personally, I do not like taking any drugs, other than over-the-counter, to help control something because of the potential side effects and the possibility of addiction. That might change some day if my blood pressure increases, for example. If these prescribed drugs help someone, however, without doing any harm; then more power to them.


Questions for today
How about you? Have you noticed a change in your tolerance? Are you more easily angered today? What do you believe is behind this change?  What have you found that helps with this issue?


I look forward to hearing from you.