The experience of fear is universal. It is one of the first emotion we experience. Although I can’t seem to remember, I’m sure I was scared “to death(!)” of being born!

Fear is probably our second major survival instinct. And upon second thought, it may be even more primary than our instinct for propagation of the species.

We need fear. It keeps us (most of the time) from doing things that are harmful to our well-being. It is helpful to develop a HEALTHY sense of fear.

Now, we are all aware of various phobias that people develop, and that is a sense of fear that is super-heightened. Kind of like an allergic reaction to certain stimuli.  That is another topic of discussion.

What I’m discussing here is fear based on ignorance. It’s that equation:

F.E.A.R. = False Evidence Appearing Real.

Maybe you were scared of your first day of school.  Any school. The first time time you drove in a car solo. (I was really scared about that!) How about the first time you met your future in-laws!

I think you get the point.

But notice one thing: These fears showed up when you did these things for the FIRST TIME! After that, the fear usually went away quite quickly.

There are other fears which don’t go away. Fear of loss. Health, money, loved ones can be lost at any time. These fears are constantly present. And they should be constantly present. They keep us on our toes to make prudent decisions and perform prudent acts.

Yet, in attempting to perform prudently, we need knowledge and understanding of what is before us to decide or act upon. We need as much clarity intellectually and emotionally about the various courses of action presented to us in order to take the “best” course of action for us at any point in time.

For Polycystic Kidney Disease patients, quite a number of choices are presented in just about all areas of life. Decisions need to made not only medically, but also in the area of family, career, finances, and other areas of life.

Clearly, the choices PKD patients are faced with add to the burden of having the disease.

There are decision that only you can make. And no matter what course of action is chosen, there are consequences.

The obvious recommendation here is to get as much information you can about each situation. And get real information. In medical decisions, get as much information as you can from your doctors, do research on the Web, and “talk” to people who have gone down the same path as you are now traveling, keeping in mind that medical technology is constantly changing, and that the opinion of  someone who may have had a negative experience a few years ago may no longer be valid.

Check out your assumptions. One person I know was scared of hemodialysis because she saw a video of patients having huge needles put into people’s arms. I reassured this person they you don’t sstart out withthose big needles. They start you off small and work up to the big needles.

In this case, further information changed the fear.

So, develop healthy fear. Learn what is worth being fearful of, and what is not being fearful of.

What are your fears? Are they real? Or are they fears NOT based on facts?

Please let me know by adding your comments!

Thanks!

Peace and Blessings!

Coach Richie Perl

Memories, memories.

We remember the good and the bad. Hopefully we learn and grow from both.

Clearly, we don’t have many problems with pleasant memories. We use them as a refuge from the pressures of daily life. We enjoy reminiscing about the “good times” with old friends.

Yet, we also have memories of negative events. Events that, at the time, we perceived as threats to our welfare.

Because of our survival instincts, many of these negative events make a greater imprint on our psyches than pleasant events.

As a result, the memories of negative events often have a greater influence on our lives in the present than we are aware of.

Now, many of these “imprinted memories” serve useful purposes.

For instance, when I was very young, and never having seen charcoal burning, I touched a white hot charcoal. Guess what? I never did that again! I still feel the pain!

But some of these “imprints”, while perhaps having positive intentions at the time, may no longer serve us.

Years ago, as many of you may have heard, and a few of you may have experienced, doctors made what was known as “house calls.”

During the years when I was vulnerable to the childhood disease like measles and mumps. all too often, my doctor would come and examine me.

In those days, it seemed that the universal cure for everything was a penicillin shot right in the rump!

And I got my share! And it hurt! Bad!

So what do you think I equated “doctor” with? PAIN!

A pretty deep imprint indeed!

But not useful!

It took many years of understanding, and retraining my mind to change the equation to “doctor” equals “healing!”

I now have good rapport with all my doctors, and I like to think that they don’t cringe when they know I’m coming in to see them.

Negative medical events that happened in the PAST to you or family members happened…in the PAST!

They don’t equate what will happen to you now or in the future.

What happened to my father and his Polycystic Kidney Disease in 1968 had absolutely NO BEARING on what happened to me in 1998, or my sister in 2007, when she received a transplant from her husband.

For those of  you who experienced or witnessed negative medical events in the past, the fear that these events may have produced are clearly not useful to you now. This is 2009. There have been medical advances since that negative event.

Now, I know that these imprints are not easily changed by telling yourself, “Go away, negative imprint!” No. One has to reach them kind of by the “side door.”

It’s too complicated to describe a method I use to help “erase” these imprints, but I will say this:

Consider that the person who experienced the negative event was not the “current you,” but a psychologically distinct person called the “younger you.”

If you can separate the “current you” from the “younger you” and mentally picture the “current you” having compassion for, nurturing, and teaching the “younger you” a more helpful interpretation of the negative event, the power of the “negative imprint” will have a good chance of being weakened, or even eliminated, leaving room for a more positive impression of the medical profession.

If you would like more information about changing the “imprint” of negative memories, please contact me at:

info@innergameofpkd.com

Happy Memories!

Peace and Blessings!

Coach Richie Perl

As a kid, I once read the following that was in a list of kids’ jokes:

She: I’ve got the world’s worst toothache!

He:  How do you know that?

She: Because it’s MY toothache!

No one can actually totally feel another’s experience. As much as friends and family empathize and sympathize, we each live our own lives individually. As trite and obvious as that is, it becomes important in the area of communication.

There are clearly times in our “PKD Odyssey” when we feel. like we did as adolescents, that “nobody understands me.”

In the case of living with a disease, this may be literally true for many people who don’t have what is commonly known as a “support network.”

In addition to actually having Polycystic Kidney Disease, the patient has the added stress of feeling isolated. Even in the midst of a group of friends.

Today, with message boards, forums and some Social Media sites, the sense of isolation has decreased a bit. Patients have an opportunity to “vent,” ask questions, and share experiences. This is very helpful. I participate in some these myself. It gives patients a clear sense that we aren’t alone.

Yet, all too often, I detect in some of the postings a longing for true connection. Too often I read how a patient’s family is unwilling or unable to acknowledge and/or assist in the patient’s plight.  It’s so sad.

And often, when such a person seeks “support” from an on-line group, the acknowledgment and acceptance is, by the nature of the impersonal nature of such groups, at a much lower level than is required, leaving the individual frustrated, like having a great entree on a tiny plate.

In-person “support groups” are of course, much better, as long as they are well-moderated and deteriorate into “whining” sessions.

Here in New York City, I was told that such a support group existed for a while and then dissolved. People didn’t want to keep talking about PKD all the time.

What does it take to feel a part of the “mainstream” as much as one can, instead of feeling apart from the flow of “regular life?”

First, know that even with diseased kidneys and with a somewhat modified lifestyle, you are still a valuable human being. You may have to learn to be your own advocate. This means NEVER putting yourself down. It also means to seek support from those you can provide it for you. You NEED a “friend” who accepts you warts, cysts, and all!

You are welcome to add your comments to this post and share your triumphs and tragedies in your quest of being “understood.”

You can be assured, that as a PKD patient myself, that you will be “understood!”

Thanks!

Peace and Blessings!

Coach Richie Perl