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

Letting Go

Guilt – a feeling of responsibility or remorse for some offense, crime, wrong, etc. Whether real or imagined. (Dictionary.com)

So often those of us living with a progressive disorder like Kennedy’s Disease experience some form of guilt. It can often be held internally (festering) or expressed in some way such as depression, remorse, frustration, etc. These feelings are often caused by:
 

• Concern for the family’s future financial security should you not be able to work.
• Fear that you passed the defective gene on to your daughter or possibly your daughter’s children.
• Frustration because you might not be able to perform the needed household or yard chores and repairs. And, these responsibilities will fall upon your spouse and children.
• Guilt for all the stress and concern you have and will cause your family.

At some point you need to address these feelings and hopefully come to terms with the fact that:

• Since the disorder is genetic, you did not cause or could have prevented the defective gene from changing your DNA.
• Since there is no treatment or cure, you could have not done anything to change your current condition.
• When you married or had children you did not know you had the defective gene.
• You have no idea how quickly the disease will progress and how it will progress.

And, once you believe that you had no control, nor do you have any control over this defect in your DNA, it is easier to let the negative feelings go.

Loneliness and Guilt

The KDA website’s home page has this statement: “You are not alone.” I believe most everyone who learns they have an incurable disease feels ‘alone’ at some point as they go through their own acceptance process.
 

Reasons for feeling alone

• You have no one to talk to that understands what you are going through.
• Many times your doctor is not even a resource for information on your condition.
• There is little information available on the disease.
• You are uncertain what this could mean to your future employment. (How long will I be able to work, can I still do my job, etc.)
• You are afraid and often angry, but don’t feel you can share these feelings without appearing weak.
• You want to protect your loved ones, so you refuse to share your feelings and concerns with them.
• You don’t know what to do or who to turn to for help.

About thirty-five years ago I started going through this acceptance process. At times it wasn’t too bad and then there were times where I was not a ‘happy camper’. Fortunately, I have a wonderful wife who is very supportive and understands that I am not always going to be ‘Mr. Personality’. She knew when I just wanted someone to listen and when I needed comfort. We got through it then and continue to go through it today as the disease progresses. In my humble opinion, ‘acceptance’ is a personal journey; not a destination state.
 

What could be worse?

In my opinion, there is only one thing worse than the feeling of being alone in this world. That is the guilt you feel because you have burdened your significant other/spouse with having to care for you. I call it the ‘martyrdom phase’ because you begin to think your loved one would be better off without you. You already see the progression and the loss of certain abilities, but even worse, you cannot imagine how your spouse/significant other could continue to love you for the burden you have given her/him as caregiver.
 

Just another stage ...

Fortunately, both loneliness and guilt are just phases in the acceptance process. If we understand that these are just phases, we know that ‘these too will pass’. Once we recognize that these feelings are just our ego being challenged; it becomes easier to look for positive ways to reinforce relationships, share feelings, ask questions, and move on to the next phase. Reading about it is one thing; living through it is something else. It is not easy, but it is a necessary part of growing and living with your disease.

And, always remember,

YOU ARE NOT ALONE!

Follow this link to read more about the nine stages of the acceptance process.