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 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

What—Me Worry?

Many of my friends and family believe I accept living with Kennedy’s Disease better than most. I’m not so certain about that. I know of many men that are well centered and accepting. Perhaps we just hide it better than others do. Or, we aren’t smart enough to understand what is happening. Whatever the reason, I’m comfortable being this way.

I have my down days. I still wonder what the future has in store for me. Probably the only difference is that I don’t dwell on these thoughts. I am too busy ‘living’ to wallow in the muck of uncertainty.

Meditation helps put things in perspective. There is something called ‘noting’ that works for me. Whenever I find myself dwelling on a thought, I notice it (acknowledge it), apply a label to it (oh, that’s a fear of what might happen to me), and move on. I don’t study it or try to understand it; I just notice the thought and then discard it by refocusing on my breathing. If I tell myself to forget it, or force myself to think of something else, it won’t work. But, by just acknowledging the thought and then refocusing on my breath, it no longer is important and stops nagging me.

I also have a couple of good hobbies and social events that allow me to focus on something productive. If I’m engaged in an activity or a conversation, negativity can’t seem to wedge its way into my thoughts.

I’ll give you an example of a recent event. At the beginning of the year, I was in a long slide that had me concerned. If things didn’t change, my daily life would be transformed—and not in a positive way. After a couple of days of wallowing, I ‘noted’ it, and then refocused.

Almost immediately, my thoughts redirected to what I could do and what has helped in the past. I gradually worked my way through the issue and am better now (stronger) than before I started.

We are all human. We have concerns and fears. However, that doesn’t mean they have to control our lives.

Fear of the Unknown

“Use your fear…it can take you to a place where you store your courage.”  Amelia Earhart 

When I read this quote from Ms. Earhart, I knew I needed to write something about my experiences. Conquering your fears is something easier said than done. Yet, there are times when you have to ‘suck it up’. 

A simple and useful definition of fear is — an anxious feeling, caused by our anticipation
of some imagined event or experience.

Karl Albrecht, Ph.D. explains that fear, like all other emotions, is information needing processing. It offers us knowledge and understanding—if we choose to accept it—of our psychobiological status. According to Albrecht, there are five basic forms of fear.

• Fear of death
• Fear of mutilation or invasion of your body
• Fear of being paralyzed, restricted, imprisoned by something beyond our control
• Fear of loss, abandonment or rejection
• Fear of humiliation, shame and disapproval

Three experiences in my life relate to the anticipation or dread of an imagined event or outcome.

1.   My first firefight in Vietnam. No matter how much training, nothing prepares you for the first time bullets fly your way. It doesn’t take long before realizing that they, the Vietcong, are trying to kill you. Fortunately, all that training does pay off when the adrenaline kicks in, you stop thinking, and begin acting. I would describe it as ‘going on autopilot’. It’s what, along with a lot of luck, kept me alive.

2.   When doctors diagnosed my two-year-old with a malignant brain tumor, total helplessness are the first words that come to mind. The fear of losing your child is all-consuming. Yes, you pray a lot, but the worst part is the waiting and wondering. I was a wreck during the surgery. When the nurse carried him out, I couldn’t breathe. But, when he saw me and smiled, I melted. Everything was going to be okay.

3.   When diagnosed with ALS, it was crushing news. “You’ve got to be kidding—not me—I feel fine.” Several years later when correctly diagnosed with SBMA (Kenney’s Disease), I felt relieved.
  

Courage means to find strength in the face of pain or grief. It is the ability to do something that is frightening.

• In Vietnam, as unbelievable as it sounded at the time, it was kill or be killed.
• As a father, I needed to be strong for my son. 
• When diagnosed, it meant finding solid ground again after falling into quicksand.

In each case, there were no viable alternatives. I needed to dig deep, deeper than I ever had before, to sail through these uncharted waters. There was no way out and giving up wasn’t an option.

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.