OK. You have PKD.

It sucks.

You want “Mommy to kiss it and make it go away.”

You dread the life that you believe you may have to live.

You dread going on dialysis.

You fear being alone and not being understood as to possible limitations.

You know what?

You have every right to feel those fears and “dreads.”

So, now that you feel them, now what?

Are you going to “wallow” in those fears?

Are you going to have a lifelong “pity party?”

Well, you can. It’s not against the law.

But how helpful is it for you?

It isn’t.

You know “attitude is everything.”

You also know that a “negative” attitude can be transformed into a “positive” attitude.

Believing that you can overcome many of the limitations of PKD is the first step to doing so.

Don’t get me wrong: I’m not one of those people who will tell you to “just believe” and everything will come out fantastic for you.

Not in the least.

What I am saying is to give yourself the gift of time.

In that time, write down as precisely as you can your fears and dreads.

Let them “all hang out.” Everything you’re scared of. Even if some fears are not related to PKD at all.

A few days later, read back what you wrote as objectively as possible.

Perhaps, if you dare, you could share it with someone you trust and who is objective.

The objective is to determine which of your fears are “rational,” like, “I’m afraid that I might not be able to pursue the career I want.” which in fact MAY be the case for you, and which of your fears are “irrational,” like “I’m afraid I won’t be able to have loving relationships because of my disease.” which, based on many people’s experience, is hardly a realistic fear. (I have found that your ability to have loving relationships is not based on the fact of your PKD, but the nature of your overall personality.)

Once you have determined which fears are “real” and which are not, determine to overcome the fears which you no longer need!

I know that doesn’t sound like the easiest thing to do.

It isn’t.

But it’s very possible, by seeking evidence in your own life and other’s that these fears CAN be overcome.

Yes. Doing this will involve some emotional risk.

Like taking the initiative to reach out and ask for companionship by offering your own friendship. (A much easier task in this day of Facebook and message boards!)

But, life is about about taking chances. You won’t always win, but if you don’t take chances, you’ll always lose.

Yes. PKD sucks. But don’t make it worse than it actually is by “needless” fears.

If you need assistance in discerning “rational” fears from “irrational” fears, I invite you to contact me at:

info@innergameofpkd.com .

Don’t let false beliefs limit you!

Peace and Blessings!

Coach Richie Perl
Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

As has been well-documented, we are more interested in what people do than in who they are.

It is much easier to explain what we do than who we are. It takes quite some time for another person to know who each of us is.

On the other hand, it seems to be quite easy for us to pin labels on others.

He’s the “funny” one. She’s the “kind lady.” He’s the “jock.” And, lately, she’s the “dumb blonde(!)” (I’ve been labeled the “smart” one!)

As we get to be known by these labels, the impression is created that “all” we are is what our labels say we are.

Of course, this impression is false, and the consequences of relating to people based on their labels can be quite hurtful.

Yet, all too often, we have a hand in creating our own labels.

PKD patients are vulnerable to the tactic of labeling themselves “diseased.”

This isn’t always done consciously.

When I first was diagnosed with kidney disease at age 16, I didn’t deny it consciously, but walking around as a college freshman  taking diuretics, and hoping I could get through a class without the “urge,” and being vigilant for where the Men’s rooms were, well, it started to wear down some of my youthful “machismo.”

I had to face the fact: I had a disease, and I wasn’t quite like everyone else.

So, I labeled myself, “diseased.”

I took quite a while and inner struggle to accept who I was and to force myself to tap into the other aspects of my life that were quite normal!

I had to learn that I was not the only one that had an “inconvenient” aspect of life.

Some had academic difficulties. Some had difficult home situations. Some had financial problems. and on and on.

I learned to put my disease in a less prominent place in my self-evaluation. Over time, the label “diseased” just faded.

So, how do you “label” yourself? Does your “label” sell yourself short?

You are so much more than your “label!”

You may not be aware how your label might be limiting the way you experiencing your life!

Action step: Write out a self-description. Read it to someone you know and trust. Ask for feedback if what you wrote is how the other person experiences you.

A learning exercise if I do say so myself!

I wonder if you will really do this!

Who do I say I am?

A Child of God is very fortunate to have my faculties, and a kidney donated by my wife!

And, oh yeah — a Life Coach exploring the Inner Game of PKD!

Who do you say you are?

info@innergameofpkd.com .

Let’s communicate!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

As we have often been told, we can look at challenging situations as “the glass being half-empty or half-full.”

This phrase, “true” as it is, has been so overused that it has lost much of its impact.

So, I’d like to “re-impact” the value of this famous phrase.

Continuing somewhat from my last post, we know that you can “talk yourself” into almost any emotional state.

I’m sure that most of you, either personally or through observation, have a experienced a young person being rejected by a would-be “special friend” responding by saying something to the effect that “I’m a complete loser because So-and-so rejected me!” and is done with considerable histrionics.

You also know that it isn’t helpful to respond to that young person by saying, “You’re not a loser!” because it goes against what the youngster is experiencing and your comment, although said with the best of intentions, won’t be “heard.”

When a PKD patient is facing a current challenge, it often happens that his/her mind, because of its survival instinct brings up the “worst-case scenario.” (See the comment on my previous post.)

OK. The situation is probably not as dire as your mind makes it out to be. So, how do you train your mind to see the situation as “half-full?”

Well, given the principle stated above that “you can talk yourself into any emotional state,” start telling yourself “good things.”

Like, “Well, at least the diagnosis was made now and not later.” or, “Let me find out as much as I can about this situation.” or, “Hey, I’ve been through challenges before. Here’s just another one one my PKD Odyssey.”

You get the idea.

Because it’s not just the words that you tell yourself.

The words cause mental images to form in your mind which in turn causes various hormones to work on your body in either positive or negative ways, depending on the inner images.

I would think it would helpful to generate as positive an emotion as you can!

Don’t you?

Therefore, notice what you tell yourself when you are presented with a medical challenge. If your mental words conjure up a worst-case scenario, take a deep breath, and ask yourself, “Is this REALLY the case?”

It probably isn’t.

At least wait until you get the complete information.

Because if you see the situation as the glass “half-empty,” pour it into a smaller glass!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The first time I got into  car to drive car solo, I was nervous. I gripped the steering wheel very tightly. I had to consciously remember all the steps of driving. With no one to remind me. My heart was racing. My stomach was tight. My mouth was dry. Well, I put the key in the ignition, checked the mirrors, put it in gear, and very gently stepped on the pedal. The car moved. Well, here we go!

Obviously, I survived!

If I was in a similar situation today, I would use my mind to help me make such a challenge easier.

How?

Perhaps you saw the Alpine skiers in the Winter Olympics just before their ski runs. They closed their eyes, and mentally skied the course, successfully!

In other words, when they did their actual runs, to their minds, it was not the first time!

In this day of multi-media, there are many videos of medical procedures. (I recently saw You-Tube videos show cataract operations, which I will probably have to undergo in the not-too-distant future.)

Here is a link to to a site that has and introductory video about kidney dialysis:

http://www.careflash.com/video/kidney-dialysis?lc=en

Getting as much information in as many formats as possible will prevent your mind from producing overly fearful thoughts which are definitely not helpful.

Here’s site which shows kidney transplant surgery. It’s over an hour.

http://video.google.com/videoplay?docid=5778624554431891564#

There are more if you search.

You don’t have to have your mind build scary thoughts based on faulty knowledge!

You can learn about your condition today as never before!

You can learn from the videos, and make a list of questions for your nephrologist that will indicate to him/her that you are willing to research your own condition. Most doctors like this. You will most likely have a better rapport with your doctor by speaking as intelligently as possible about your condition.

Make your mind an ally by giving it as much good information as you can. You will be so much more prepared and have a higher level of confidence as you journey along the “PKD Odyssey!”

See you at the Videos!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

In mathematics and physics, phenomena that change with time are often plotted on a graph with time as the horizontal axis. The further to the left on the axis you go, the later time advances.

Clearly, our lives are phenomena that change with time. We can “plot” events of our lives along a “time-line” starting from birth (or conception) at point zero, and subsequent events to the right of point zero, as time increases.

We have a marvelous capability. It’s called memory. We can remember many events that took place in our lives. Some pleasant, some painful, and mostly, the ordinary events of daily life.

But some events, usually negative ones, somehow make an imprint in memory that’s deeper than an everyday event. These events are often described as traumatic. Some of these events may cause phobias. Consider a young child being barked at by a large “friendly” dog. This child may be afraid of dogs for the rest of his/her life.

Or, more to the point of this post, a child may have had a “traumatic” experience in a doctor’s office, and have carried this “negative” imprint of doctors all the way to adulthood.

Similarly, a child may have witnessed a parent suffering from a disease, let’s say, polycystic kidney disease, and didn’t yet have the mental capacity to fully understand and process the parent’s experience. You can easily understand that this child, when later on in life is him/herself diagnosed with PKD, will perceive that diagnosis in a rather negative, probably even a fearful light.

This, and similar experiences which occur early in an individual’s time-line can distort a patient’s perspective of his/her current situation. In effect, the patient is carrying baggage from the past.

Although some aspects of the past experience can be helpful, by and large, the negative baggage is not helpful.

OK. So if you recognize that you have had a somewhat traumatic experience relating to your disease or to the medical professional, it would seem helpful to get rid of the baggage!

The key is simple! The realization may not be easy!

The young person who experienced the traumatic event is not the “you” of today! The younger “you” didn’t have the capacity to process what was going back at that time! The current “you” does!

The suggestion is to play a “mind game” in which the current “you” goes backwards along your time-line to the event and “parent” the younger “you” concerning the traumatic event.

This will disassociate the current “you” from the trauma experienced by the younger “you” in such a way that the current “you” will be much less affected by that early traumatic event.

I know this may be a bit confusing. I know it works. I’ve done it!

Please let me know if you would like further explanation of this NLP “mind game!”

info@innergameofpkd.com is my e-mail address!

And may your time-line be a long one!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

At first, I didn’t.

They were a source of pain and some embarrassment.

They got in the way of my male “macho” self-image.

They were the points of my vulnerability.

I hated them, and always referred to them as “my damn kidneys.”

This was so for over 40 years.

Now, older (definitely) and wiser (maybe?) I realized that “hating” my kidneys was not the best relationship I could have had with them.

Over those 40 years, I lived!

Those “damned” kidneys were keeping me alive, doing their job under increasingly difficult circumstances!
They had no choice in being “built” with faulty genes!

It wasn’t fair for me to “hate” them!

It wasn’t even helpful. There is no advantage in “hating” a part of yourself!

On the contrary. It is helpful to nurture then to the best of your ability.

If there isn’t much that you can do for them physically (and you can maintain your medical and dietary protocols!), you can at least nurture them mentally.

You can mentally vision your kidneys, cysts and all, and develop a compassionate relationship with them. Yes, even mentally “talk” to them, letting them know that you know it’s not their fault they they are failing.

When you refer to them, consider saying, “my hurting kidneys,” or “my diseased kidneys.” This takes away any negativity you used to have toward your kidneys.

Now, you may think the above “mind game” is silly. You have every right to think that if you are having difficulty on your “PKD Odyssey.”

Yet, when I learned to do this as part of my NLP training, I felt a noticeable relief of internal stress whenever I thought about my disease, which was…often!!

The point is that in “loving” your diseased kidneys, you become more aligned, with less internal conflict which takes a toll on your energy.

Being aligned is a definite aid in accepting your situation and also increases your courage to move forward along your PKD Odyssey.

And that goes even more for a transplanted kidney!

Stay Aligned!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Last time, we were discussing what to do if you determine that the change you desire for yourself is not possible for you.

One tactic is to modify your desired change in such a way that it is possible for you to achieve it. In other words, compromise.

Or, postpone going for your desired change until your life circumstance is such that it is possible for you to achieve it.

Generally speaking, postponing going for desired changes is not recommended. (I’m not talking about postponing desired changes due to, say, medical procedures. I’m talking about waiting passively for “things to get better.” Life is to be lived, not postponed!)

So, once you’ve determined that the desired change is possible for you,

WRITE IT DOWN!

Take some time, get a pen and notebook and answer the following questions:

• What do I want?
• Why do I want it?
• What would happen when I get it?
• How will I know when I have/achieved what I want?
• What will it take to get it?
• Am I willing to pay the price?

By this time, you will have thought about your desired change and noticed that it has become a bit more complex.

To help you in this process of determining if what you want is really worth pursuing, I have a small e-book called:

Goal Setting: 5 Steps To Developing a Well-Formed Outcome Statement (pdf format)

which I will send to you by requesting it at:

info@innergameofpkd.com free of charge.

In any case, no matter what stage of kidney disease you’re in, you can always make changes to improve your quality of life.

It may as simple as reading a book instead of watching TV one night a week.

Or, allotting time to have a conversation(!) with your family members.

Even small changes can greatly enhance your life.

So, figure out what one thing you would like to change in your life (that’s possible for you) and go for it!

You know I’m here to cheer you on!

The only thing that’s constant is change!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The question I have in mind is the following:

“If you could change one thing in your life, what would it be?”

OK. Stupid question.

But let’s ignore the obvious answer: “I would want to cured of PKD!”

Of course you would! So would I!

So, besides that, if there was one thing you could change in your life, what would it be?

Since the question says “one thing,” you might have to think about it for a moment.

Many would say, “More income!”

Some may say, “A better relationship with (whomever).”

Or, “A transplant to get off of dialysis!”

Whatever your answer, I’m sure you could visualize what life would be like if that change were made. Your visualization would be pleasant, would it not?

Now, I’m not going to go into all that “Law of Attraction” stuff.

What I will do is ask some questions to help you make the change you want, if that change is possible for you. I know that there are those who say that “anything is possible,” and from a theoretical point of view, this is correct.

I was inspired a few days ago when I watch a paralympic ice hockey game. Guys with no legs, one leg, or useless legs played “sled hockey.” It was quite amazing and competitive.

But most of us do have practical limitations or “constraints.”  Like, for instance, money! Yes, that can be overcome, but it may take away time from making the change you want.

So, the first question to be asked about your desired change is, “Is it possible?”

Most desired changes ARE within the range of possibility. You probably wouldn’t have formulated the desired change if you didn’t think it was possible.

A more pertinent question is, “Is your desired change possible for YOU?”

A reader of this blog is on Peritoneal Dialysis and trying to figure out a way that he can go camping like he used to. Hopefully, he’ll figure it out, but it MAY NOT be possible for him, at least under current circumstances.

If you determine that your desired change is not possible for you, at this time or ever, it would seem prudent to consider modifying your desired change, rather than experiencing the frustration of keeping the negative thought of NOT achieving your desired change.

To be continued…

Here’s hoping you get to keep your change!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The “Pursuit of Happiness!”

You know the game:

School, job, money, and for many, marriage and family, trying to save money to obtain “the finer things in life,” trying to stay ahead of inflation, giving much of your soul to your employer or business…and in the end…well, you know the end.

And that is the game for people with “advantages!” Good family , good education, decent health, and similar attributes provide them with “entrance” into the “game.”

And as you know, there are no guarantees. (Duh!)

So, with all the above in mind, what kind of “happiness” is worth pursuing?

I can’t answer that question for you. But I’ve observed in myself and in others that a quality that might be labeled as “happiness” often is experienced in the attainment and achievement of “meaningful” desired outcomes.

It’s the process of attaining “mastery” in an endeavor about which you are “passionate.”

The process that I went through in becoming a Trainer of Neuro-Linguistic Programming made me “happy!”

When I assist an individual to perceive his/her situation from a new, empowering viewpoint causes me to feel “happy!”

When I was fortunate enough to go to Israel and pray at the Western Wall, I was ecstatic!

OK. That’s some of my “endeavors” that brought me some happiness.

Going forward, I intend to accelerate my own growth by learning self-hypnosis.

And you. What endeavor are you passionate enough to develop mastery in so that you can experience a sense of happiness, or triumph, or, yes, ecstasy?

There are enough areas of interest in the world for anyone, with or without Kidney Disease, to master and feel terrific about yourself!

For many of you, it’s the mastery of your own emotions in the context of dealing with your disease! And that’s no small feat! I support you wholeheartedly in this endeavor!

Consider the arts: Writing, drawing, painting, poetry, singing, musical instruments, sewing and knitting and other crafts.

How about chess, video games (not too violent!!!), charity work (The PKD Foundation!), faith-based activities.

Find your passion, develop reasonable expectations for the depth of involvement you’re comfortably able to deal with, and …go for it!

This kind of “living your passion” is a big part of a high quality of life!

Oh by the way, if you are having some difficulty in mastering your emotions in dealing with your disease, let’s connect!

info@innergameofpkd.com is my e-mail!

Keep On Truckin’, my Friends!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Greetings!

I’m back after missing a week due to an eye infection during which I couldn’t wear my contact lenses and couldn’t see well enough to go on the computer!

The subject is “curiosity” and I’m writing about this from two different aspects — 1) Curiosity about the way you subjectively experience living with PKD and 2) curiosity about this blog, me, and my coaching services.

As I went through the symptomatic stage of my PKD, I, being of a highly analytical nature, was constantly curious as to the way I perceived my disease. In other words, there were two levels that I experienced my disease — 1) the actual physiological symptoms and the emotional feelings stemming from feeling sick all the time, and 2) curiosity and “commentary” about the symptoms I was experiencing. “Wow! The cramps were really tough that time!” “Wow! My urine was really bloody this time! Eewww!!”

No doubt you have experienced this “two-level” perception of your symptoms.

The point I wish to bring out is when you are curious about your disease, you are, at least for a few moments, looking at the disease and not actually experiencing it. In NLP this is called taking a meta-position. When you’re in the meta-position, you are, again, momentarily, disassociated from the direct experience of the symptoms. It’s almost like you are observing your own symptoms. This is good. It tends to help you separate your sense of you from the sense of your disease. In this way, you won’t think that you are your disease. You are not.

The second aspect of  “curiosity” I want to discuss is the lack of curiosity about what I can do for you as a Life Coach. I have written this blog for eight months and, quite honestly, have received very nice feedback, and have answered some questions that readers have asked, but no one has ever inquired about my coaching services.

I am curious as to why you are not curious about how I might guide you along your PKD Odyssey in such a way as to experience the highest quality of life possible for you!

Can you please help me to help you by letting me know why you are not curious about my coaching services?

My intent was to share my experiences to help smooth your PKD Odyssey. I also have been attempting to demonstrate that I care about you!

Perhaps I haven’t been hitting the mark.

info@innergameofpkd.com is my e-mail address.

I’m curious to know what you think!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming