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

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

Let the light shine in

Happiness is a nine-letter word

Several people living with Kennedy’s Disease have mentioned bouts of depression. Many more, including myself, mentioned that anger and frustration was more prevalent in our lives since the onset of KD. I have discussed frustration several times in this blog. I do not have the cure (still working on that), but I found a good article on ways to feel happier and wanted to share some of the thoughts.

In the Yahoo Health article, "Six Natural Ways to Feel Happier," the author discussed some basic and easy ways to overcome the blues.

Sweat away the sadness – Research proves that exercise can improve mental health. I wrote about my experiences with endorphins a few times. The article said that working out can relieve mild to moderate depression as well as antidepressant medication because it stimulates dopamine in the brain (the feel good chemical). Even exercises like Yoga or stretching can help keep depression at bay.

Eat good food – Fish that contains Omega 3 fatty acids enhances areas of the brain that effect moods. Just by eating salmon, char, sardines or other fish (low-mercury swimmers) twice a week can make a big difference in your mood. Having a baked potato will also help (dose of vitamin B6). Also, foods rich in folate (e.g., spinach, beans and oranges) are filled with serotonin that will break through most blues.

Have sweet dreams – getting seven to eight hours of sleep each night is one of the best ways to beat the blues. People that have insomnia are five times more likely to experience depression. The article gives some helpful hints to help you go to sleep easier and stay asleep.

Claim some quiet time – Meditation is as good as most medications in reducing depression. From my personal experience, it does this and so much more. If you feel uncomfortable trying meditation, just try ten minutes of deep breathing each day. There are some deep breathing exercises in the Smart Exercise Guide.

See the light – Depressed people who experienced one hour of bright light each morning for five weeks experienced a 54 percent improvement in symptoms. Flick on an energy light to read the morning paper or spend some time in the early morning sun. Try sitting near a window where light streams in.

Phone a pal – It is not surprising that lonely people are more depressed. Strengthen bonds with at least three good friends. Set regular times where you meet at the park (or at the library or mall). Friends will make you feel better almost immediately.

I also recommend a hobby ... something that you enjoy and takes your mind off everything else.

Quote: Best-sunrise-quotes-on-pinterest

As a kid, I loved slides

… but they sure aren’t any fun these days. Thr rapid progression (loss of strength) is rather scary.

Early last week my legs started giving indications of a slide. For the next four days strength and capabilities diminished. By Saturday I was not a ‘happy camper’. I should know better because I have been through more than a few of these battles over the last 40 years, but I still think the worst for a day or two.

Saturday afternoon I had enough of the wallowing in frustration and took an accounting of what might have got me here. Even though I exercise several times every day, over the last few weeks I often spent four-to-six hours just sitting. I realized this was not my normal routine.

So, sitting on the throne that afternoon, I decided to change my modus operandi. Every two-to-three hours I was going to stand up and perform a couple of short exercises. Three times that day seemed to make a difference the next morning. Six times yesterday felt even better. I could tell I was on my way back.

I’m not 100% back, but today I feel 90+% back to normal.  

I believe Henry Ford said, “If you always do what you’ve always done, you’ll always get what you’ve always got.” This also holds true in my personal life. If I don’t like the results, I need to do something different.    

Photo: Giant Bomb

Mr. Fix-it

I miss fixing things. There is something satisfying about finishing a job around the house. Oh, yes, there were times where a few choice words entered into the repair process. That was all part of the game. But, the feeling that comes over me when I repaired something, and it works, was always a treasured moment. And, the dirtier I had to get to accomplish the task, the greater the euphoria when it was done. I believe part of this enjoyment of repairing somethings comes from having to consider the options available, and learning what worked and what didn’t work. I won’t even discuss the times I didn’t have the right tool for the job.

I suppose I inherited this trait from my father. He was a ‘jack of all trades and a master of none.’ He was more gifted than me in being able to envision the end-state. Often, his repairs and projects were not pretty, but they always seemed to work. Probably what I admired most was his ‘can-do’ attitude. No repair or project was too small or large to take on.  

Today, the hands no longer work the way they are supposed to. The legs no longer hold me up. The arms and neck weaken quickly when something is above my head. And, worst of all, I become frustrated easily.

Most of the time I can only watch my wife, a friend, or a handyman perform the repair. This means the repair happens when the other person has time, not when I believe it should be done. It is frustrating because I usually find myself in the same room looking over the person’s shoulder offering advice, even when they don’t want or need it. Thankfully, he or she puts up with my interference–most of the time anyway.

The one area where I still can perform some of the fixes and repairs is electronics. Repairs or fixes to the PC and our tablets are normally still my jobs. If I don’t know how to fix something, I find a video on YouTube that walks me through the repair process. At times, I still need help, but boy do I feel great afterward.

I miss fixing things

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.