The Mind's Eye Toolkit for Adapting to Life's Challenges
Diagnosed at 39
I originally wrote what appears below... as a sermon.
Its main purpose, however, was to share a strategy that has worked wonders for me in dealing effectively with major life challenges like those of young onset PD patients, of which I am one (diagnosed 1991) as well as those patients with other major debilitating diseases, a category in which I also find myself.
How this started out as a sermon was that the minister of my church needed 4 or 5 people in the congregation to fill the pulpit while he took a well deserved vacation. To fill the pulpit in his absence, the minister advertised a course on sermon writing in our church newsletter. He offered to coach us in writing a sermon in exchange for our writing and delivering a Sunday Service sermon while he was on holiday.
I signed up and I took the course and subsequently delivered my "sermon" to our congregation that summer. I titled my sermon: "The Mind's Eye Toolkit for Adapting to Life's Challenges."
It was and is my great hope others will benefit from the tools that I have learned to use to cope with some of the many curve balls that life seems to through us all from time to time.
When I originally signed up to take the sermon writing course, I HAD NO IDEA this project would become such a challenge for me. What struck me early on was the irony of the situation I immediately found myself confronted with. I discovered, in order for me to be able to write a sermon and deliver it to my congregation that one summer morning, I was going to have to ACTUALLY PRACTICE the very elements of what I had been planning to preach to them!
So please rest assured, the tools in "The Mind's Eye Toolkit" do work because I have been forced to use and demonstrate them even as I undertook to write down my story.
Qualifying Life Experiences
Before I start in I would like you to understand that:
FIRST, I do not regard myself as a widely read individual, which in some circles of well meaning folks in our church is considered a sin. Be that as it may, even so I won't be citing authoritative research to validate what I have to say to you.
However I feel I am no stranger to being forced to adapt to what I feel are some pretty big changes in the circumstances of my life. I feel that because of my personal experiences, I may have something worthwhile to share with you, a toolkit I carry in my mind's eye to help me to more easily handle my life challenges.
The personal life changes that I have chosen to share with you to illustrate how to use these tools primarily concern: my health, my career, and a few of my personal shortcomings. But I want to emphasize that these tools can be used, and I do use them, in adapting to every area of life from A to Z.
AND SECOND, for those who do not know me personally, I will give a short description of the types of things I personally deal with on a daily basis so as to lend some credibility to the magnitude of some of the challenges that I have had to handle. These life experiences are what have led me to both find and use to good effect the two tools I will be discussing.
There were earlier signs of course, but my health problems began to grab my attention in major ways in early 1991. I was 39 (I am now 56), and I felt my health begin to crash and burn for what reason I really hadn't a clue. For the past 18 years I have been actively engaged in searching for causes, treatments and cures for my declining health. During this time period I have been diagnosed with several fairly troubling medical conditions. Some of these are:
- Parkinson's Disease (Diagnosed 1991) - a neurodegenerative condition that is known most commonly to affect a person's ability to move and his limbs and/or his limbs to uncontrollably shake. PD can present several other debilitating markers. It is hard to separate out which of my diseases cause which of my symptoms because many of them present the same or similar symptoms but at present, it appears that Young Onset PD is certainly one of my larger contributors.
- Chronic Lyme Disease (Diagnosed 1992) - a disease caused by a microbial infection introduced to your body through the bite of a tick by a little critter known as a spirochete which can be found and do damage to any tissue in the human being including the nervous system.
- Babeosis (Diagnosed 2008) - another microbial infection caused by another nasty little critter also known to attack the nervous system which also enters the human body through the bite of a tick.
- Compromised Immune System (Diagnosed early 2000's) - this means my body has very limited ability to call upon its own resources to combat disease of any kind. One indicator of this condition is a low "Killer Cell" count in a certain size sample of one's blood. I've been told at various times that mine has tested even below the counts of many patients who have AIDS. A Killer Cell is produced by your own body and travels through your body to kill germs of all sorts, but even this defense mechanism can be compromised by, for example the ...
- HHV-6 Virus (Diagnosed late 1990's) - is commonly called Roseola. 95% of the adult population have already been infected with it as children "with no apparent long lasting ill effect." It appears to go into remission sometime before we become adults. However when this virus comes out of remission in an adult person, probably because of that person having a "Compromised Immune System," this insidious little creature has found a way to attack and kill your own body's Killer Cells, which are themselves supposed to be helping to protect your body from such creatures in the first place!
- Strong Possibility of A Small Stroke (Self-diagnosed in 1991) - I believe this event caused an immense amount of confusion as to what was really causing my problems and contributed to it taking almost a year to be diagnosed with Early Onset PD and Lyme disease.
- Several Significant Sleep Disorders (diagnosed approximately 2006 which are very common in PDP's) - such as REM behavior disorder where one physically responds to one's dreams while asleep. This can be very dangerous to anyone or any thing including yourself that is within your immediate vicinity. I have been advised to avoid sleeping in our second story bedroom because one night, while I was asleep I got up in bed and dove headfirst into the wall as I physically acted out a dream in my sleep. I assure you I had a painful awakening the second my head crunched into the bedroom wall. But I was also very lucky. Had I dove a mere 18 inches to the left, I would have gone out through the two panes of glass of our second story window and fallen some 15 feet to the ground.
I also have mild sleep apnea. This is where your body actually stops breathing for abnormally long periods of time while you are sleeping. This can lead to an insufficient oxygen supply for the entire body.
As a result of symptoms experienced from my many health issues and my endeavors to resolve them, I believe I can say with a pretty high degree of confidence that I have experienced and continue to experience some pretty drastic changes in many of my mental and physical abilities and therefore in my life in general.
Before 1991, I looked at myself as having uncommon physical strength and endurance as well as possessing a fairly quick thinking mind backed up with a pretty decent memory. In my time off, I pursued such physically demanding sports as: cross- country and downhill skiing, motorcycle touring and dirt bike riding, tree climbing, golf, camping, target shooting with pistols and rifles, hiking, bicycling, both flat and white water canoeing, kayaking and river rafting. I used to love to contra dance and to waltz with my wife. I enjoyed reading or watching good movies and being with my family in general. I no longer can seriously engage in most of these activities.
Before 1991, I was also on track following a promising career in management in the corporate world. I considered myself well compensated by my employer for my work. I enjoyed my work immensely and in many ways I considered it my best hobby as well. But by 1994, my health had deteriorated to the point where I could no longer work. My doctor declared my conditions as disabling and my career plans were put on hold indefinitely.
As a direct consequence our family income nosedived, which brought on extreme financial pressures I had never really had to face before, certainly not while trying to raise a family.
In the area of relationship, my wife and I half joked that since I was now at home 24/7, that she was going to have go back to work in order to save our marriage, which she did, but in reality we needed her income to help support our family.
The bright spot during all this change was that I finally had to begin to redefine who I was and what I could do. In short, I was trying to determine what it was that I could do in life and was this of value to me, my family and the world in general.
Since I was now home 24/7 with our two children ages 4 and 6, I began to think of myself as a kind of "Mr. Mom." This was a better job than I had EVER HAD, I tried hard to convince myself. But one day I finally realized that I was kind of special, when I overheard the following conversation of two of my daughter's kindergarten classmates:
As I hobbled down their school hall, I overheard one classmate whisper loudly to the other: "Is that Jenna's dad?"
"Yes." The other girl whispered loudly back and then informatively added: "He's 'THE DADDY THAT STAYS AT HOME!'"
I had become a true "Mr. Mom" as portrayed by a movie comedy by that title I had seen some years ago. As this assessment did not come from someone in the corporate sector, from which I previously measured much of my self worth, I began to realize that from other points of view, my status in life and who determined what it was had radically changed due in part to my new and ever shifting health challenges.
I was moved by the new and important job title this young lady had bestowed upon me and I slowly began to see myself in a whole new light. I still had great value, for I was what was known back then as one of those rare breed of "daddies who stay at home," a true "Mr. Mom" as portrayed in that movie. At that time I was one of only 2 dads who were Mr. Moms in Jenna's elementary school class of 24 students. Curiously I heard that the other stay-at-home dad had also been disabled by Lyme disease.
But life continues and today my health, especially as it relates to my Parkinson's disease, becomes ever more challenging, to the point where now I must often ask for help to accomplish even some of the very simplest tasks required for daily living.
In previous years, often my personal health challenges were not readily apparent to those I encountered outside of my home for relatively short amounts of time for any number of reasons. Usually if I have to go out in public I try to be in an "On" state to begin with. But as my PD symptoms have worsened over time, it is becoming more and more evident to even those people I encounter for a short time, who don't know me or I don't see that often, that I often must struggle to accomplish even the seemingly most easy tasks of daily life which we all must get done somehow.
I used to handle all of the following tasks without thinking about them, but today in addition to handling issues of pain management, I often have trouble attending to even the most basic needs in life such as: bathing, brushing my teeth, dressing myself, putting on shoes, putting on a coat or gloves, driving a car, operating a phone, using a computer, taking from or returning money or credit cards to my wallet, taking even small items from my pockets, sleeping, having the physical strength to roll over in bed, trying to stand up from a sitting or laying position, grasping small items, writing, reading, turning pages like my daughter Jenna is doing here for me today, holding my head up to read or to watch a movie, or trying to do just about anything repetitive for even short amounts of time such as even just standing up to sing a hymn at church or wait in line for those delicious cookies that are served during coffee hour after church. There are often days when I know I am not able to think or remember as I should. For example, on more than one occasion I have actually even forgotten the name of those very close to me ... like for instance my spouse, my son and my daughter.
A Question of Attitude?
Over the years since 1991, many of my friends have asked me how I've managed to adapt to some of the changes of life which appear to have greatly reduced my quality of life with what appears to them to be a relatively constant positive attitude.
I finally realized that taking on the project to write this sermon is, in large part, an attempt to address this very question for myself as well. How or why am I normally able to keep fairly upbeat about life in spite of the fact that the "quality" seems to have hit rock bottom?
Use of Mental Tools
Well, the short answer is that I use tools to help me keep a generally positive attitude toward the challenges I face in life, and I use two of them in particular.
First, I must confess ... I love tools. I have tools everywhere. They take up half of our cellar and about a quarter of the garage and generous amounts of trunk space in both of our cars.
I love to use my physical tools for the control and the leverage they give as I endeavor to build or fix something despite whatever the challenges. I can no longer use some of my tools. But I have also discovered that there are other tools of the mind which you can employ to help you navigate your way through life's many changes, challenges and curve balls.
The First Tool
For example, my first tool for adapting to life changes involves making a commitment to face whatever it is that I need to, and then to get on with whatever needs to be done, to solve whatever problem it is that I am trying to solve, or whichever project to complete.
And so I call it: "The Tool of Commitment."
I think the leverage this first tool can give me is beautifully explained by the philosopher Goethe who lived back... about a couple of hundred years ago, if memory serves. If you come to our home, you will always see this quotation of Goethe's hanging on one of our walls. On the subject of commitment he writes:
Until one is committed, there is hesitancy, the chance to draw back, always in-effectiveness. Concerning all acts of initiative (and creation) there is one elementary truth the ignorance of which kills countless ideas and splendid plans: that's the moment one definitely commits oneself, then Providence moves too.
All sorts of things occur to help one that would never otherwise have occurred. A whole stream of events issues from the decision, raising in one's favor all manner of unforeseen incidents and meetings and material assistance, which no man could have dreamed would have come his way.
I find the "Tool of Commitment" to be one of the most powerful tools I have in my toolkit. It helps get me moving when I don't know how in the world I am going to deal with each new day and some challenging new problem that is bound to come with it and I need a bit of help from someone, or somewhere, or something, to make it happen.
I would like to illustrate what I mean here through telling a story about my father. It is a story that almost completely illustrates every point that Goethe makes about the power of commitment.
Recently my wife asked our children, Sam and Jenna: "What was the most useful thing that (they had) ever learned from an adult?" Our daughter Jenna answered that she thought that it was what my father had said, in the story that I tell of how he built the apartment for his mother, on the back side of our house pretty much on his own.
This took place when I was 11 and our family lived back in New Jersey. One day we all became excited to learn that our grandma was planning on moving to our house to live with us. It was decided that she would live in an apartment, which did not yet exist, on the back side of our house. In an attached apartment Grandma would still have her independence and privacy, yet still be very close to family if she needed us for any reason.
My father began to grapple with the prospect of whether he could design and build this project pretty much on his own. Finances were a big consideration and Dad was, by profession and education, a chemist. He had never worked in any of the construction trades but he finally decided to go ahead and design and build my grandmother's apartment on his own. To keep within an extremely tight budget, Dad had to handle every phase of the project by himself.
I looked on as my father sketched various construction ideas, calculated specifications for things like the thickness of the concrete footings, the cinderblock walls and the width and depth and the spacing of the rafters. He drafted formal plans which he was required to submit to the town for approval. One day the town finally issued a building permit and my father began construction.
I though my Dad was amazing because he had to learn to perform to our code officials' satisfaction the various jobs of : architect and engineer, as well as do the work of those who specialized in the trades of excavation, masonry, electric, plumbing, heating, ventilating and air-conditioning systems. Dad had to learn the tricks of the trade needed for roofing, flooring, carpentry and painting.
"How could my father accomplish so many diverse tasks?" I wondered.
One day, years after the project was complete, I got to thinking about the multitude of tasks he had to do and the difficulty of the unforeseen problems he had to solve. So I asked him: "Dad, out of all the things you had to do, what was the hardest part of this project for you?"
"Deciding to do it!" was my dad's reply.
I was extremely surprised by his answer. For Dad, committing to do the project was apparently harder for him than the actual doing of it. "How could this be?" I pondered.
Dad explained how much easier the problems seemed to be that he worked through during construction, LONG AFTER he had already decided to do the project, as compared with the stressful uncertainties he grappled with BEFORE HIS DECISION to take the plunge. Once he committed to doing the project, people began to step forward and offer help and advice and construction information seemed to become easier to find.
Dad's story makes Goethe's words real for me.
It illustrates how the power of commitment to deal with the unknown, will often provide the leverage we need to find out what it is that we need to know, and/or to align assistance from others who do know and obtain their help with our problem, or our life situation, even though we do not know where we are going to find them or even if we understand what it is or who it is, that we need to help us.
I think of it as a practical tool, with perhaps just a touch of magic in it especially when you begin to experience the phenomena described earlier by the philosopher Goethe when a "... whole stream of events issues from the decision (to commit), (raises) in one's favor all manner of unforeseen incidents and meetings and material assistance, which no man could have dreamed would have come his way."
The Second Tool
Now the second tool in my "Mind's Eye Toolkit," I employ primarily to generate many more different points of view on whatever is at hand to be evaluated, than I start out with. I do this because this process of creating more points of view will usually allow me to see my problem in a whole new light and give me more choices. And we human beings do love to have our choices, lots of choices.
I think this is a good tool to use because I have found that having more choices makes unfortunate circumstances less oppressive. As a result of generating more choices, my problem often becomes smaller, easier to solve, less of a priority, or simply disappears as a life change or challenge. We generally need to stay within the bounds of reality, but I believe you'll be surprised at how many problems of your own you can disappear, resolve or lessen in intensity, through using this process.
I first discovered this tool being used by those I knew who were brought up in the Jewish culture. I do have lifelong experience with people of this culture. In my younger years I lived and worked side by side with these people when I lived in the east coast states of New York and New Jersey. And for the last 21 years my experience has been strengthened daily mostly I guess because my wife Jean is Jewish.
Over time I observed that when Jews discussed a situation I would often see a familiar pattern to their discussions which played out something like this:
As one person makes a point it is accompanied by a gesture with one of their hands you will hear them remark something to the effect of: "On the one hand, the situation seems this way..."
And then another person will call attention to a different point accompanied by a similar gesture with their hand and they come back with: "But on the other hand, it could be that way..."
And then possibly more voices chime in offering additional variations on points of view which each feels may need to be considered.
Eventually the discussion often moves on to weigh the relative merits of each of the more likely candidates identified by the "on the one hand" or "on the other hand" points being gestured for. If you want to get a feel for the simple beauty and pageantry of how this sounds, looks and works may I suggest you rent one of my favorite movies "Fiddler on the Roof" and watch Tevye, the papa of the family, who is master at using this technique.
In real life, my wife tells me that this style of discussion comes out of a standard teaching exercise used in Jewish homes and schools. The parent or teacher will ask a student to give as many reasons as he or she can why a point of Jewish law should go one way, and then give as many reasons why it should go the other way.
Eventually the group (hopefully) reaches a decision feeling a bit more secure in having reached a sound decision in the knowing that they have at least considered the situation from many angles and as a group are theoretically more likely to come up with a better solution for having gone through the process.
Since this process often involves the phrase: "on the OTHER hand...," I call this tool: "The OTHER Hand Tool," because it helps me generate "OTHER" perspectives and "OTHER" points of view to help me solve a problem or face some challenge.
Here is another way that I increase the leverage of "The Other Hand Tool" when no one else is around. If you don't have the benefit of a group of people to help you create more viewpoints to consider, create them in your own mind's eye. In this approach, I think of those people I know and have known who think differently than I do and then I try to come up with the point of view they would have. We all probably remember someone making the observation that "What would Mom, or Dad, or Professor so-and-so be saying (or pointing out) if they were here?" That's the process in a nutshell.
That's "The Other Hand Tool" I like to use. It's easy to remember, it's easy to use and since it is a mental tool just like "The Tool of Commitment" both stand at the ready always instantly available in my "Minds Eye Toolkit" to help me evaluate a situation or resolve as problem.
Let me pause here to illustrate with a story on how changing one's perspective helped my father-in-law, George, find a solution to his handling of what was to him at the time was a very stressful problem.
George, as a teenager living in Boston, was out on a date. He and his girlfriend are driving around in HER family's car and they are supposed to pick up HER mother from visiting a friend at specified time. They park the car on a side street around the corner to wait for the appointed pickup time.
George tells us that he turned on the interior car dome light so he could read a magazine. Unfortunately, turning on the dome light ran the car's battery down, and when it was time to go pick up his girl friend's mother, THE CAR WOULD NOT START!
George expressed extreme concern at this turn of events. His girlfriend however ... burst out laughing!
George BECAME EXTREMELY upset with her attitude. He stated they had a very serious situation to contend with and asked her why in the world was she laughing.
She paused for a moment and then asked him: "Would the car start any better if I cry?"
George reports he was completely taken aback by the question, and it made him change forever how he viewed such situations in the future.
On the one hand, George took responsibility for the fact that he needed to pick up her mother on time and George took it seriously, especially because he was the one that had caused the problem. But on the other hand, his girlfriend questioned whether his reaction was actually helpful in solving the problem at hand.
George said that what his girlfriend had shown him by her question was a different view of his problem. There were other ways of looking at any situation.
On a personal level, George learned that life's seemingly serious matters were not necessarily solved by being overly upset about them. It might be better to try and relax instead and think about your problems in a calm manner and a solution would probably present itself all in good time.
I suddenly realize that in all the times George has told me to "stop him if I have ever heard him tell this story before," that I never remembered hearing if they ever got the car going. And having been a teenager once myself I ponder ... why would you be parking on a side street, in the dark, with your girlfriend, AND BE TURNING ON ANY LIGHTS AT ALL?
Please note, that some points of view you may generate using this process. ... are best left in the dark!
However in George's case he merely had to learn to lighten up a little. Once George relaxed just a bit, he was able to recall that all he might need to solve his problem was to turn off the dome light for awhile and the "bounce-back" effect of the run down battery just might, if he was lucky, provide just enough "juice" to start the car... which is in fact what happened.
As I begin to sum up my message to you, I would like to make you aware of some of my experiences of writing this sermon.
One lesson I learned, or perhaps relearned once again, was that I found myself forced to radically change my perspective of myself. The old me still thought I could write a sermon as the person who used to be completely independent and self-reliant. So early on I struggled to do ... what in actuality I physically often could not.
As a consequence, in my early struggles to write this sermon, I nearly threw in the towel, but a kindly classmate steered me back on course. "I won't let you (back out)," he informed me. But as our deadline approached to practice our sermons in front of each other, I found myself way behind where I had planned to be.
I began to procrastinate AND I BEGAN TO PANIC, the very things I had preached to my own daughter of what not to do when I had recently found her upset about writing a paper for one of her school classes. It became clear to me that to write this sermon, I was going to have to actually practice some of the very elements I was planning to preach on... oh the irony of it all!
So I started with The Tool of Commitment and I wrote a letter of commitment to my minister in which I promised I'd produce and deliver a better sermon for the morning I was scheduled to deliver it to the congregation than what he was going to see at our first practice session that next day. Practically as soon as I pressed the SEND e-Mail key on my PC, offers of help began to come in.
My daughter Jenna and son Sam became aware of my needs and immediately offered to help me do all the typing and give me suggestions about what I wrote. My wife Jean offered to critique my thinking (something she seems to do quite frequently in any event) and edit my writing.
For brief periods my brain seemed to wake up as if by magic. At times, I even began to enjoy some better health and renewed vigor. I had committed to, and I was irrevocably committed to, adapting myself to be able to complete the task at hand no matter what the circumstances.
Once I had given myself a commitment jumpstart with "The Tool of Commitment," I reached for the second tool in my "Minds Eye Toolkit" and I invoked the powerful processes of "The Other Hand Tool." With it, I examined my present abilities from several different perspectives.
On the one hand, I could clearly see that I no longer had a body, or even a mind on many days, that supported the Lone Ranger approach to writing my sermon. My stubborn old American pride of practicing self-reliance was not going to allow the project to get done if I insisted on refusing to learn to ask for and accept help when, and where, and from whom I needed it.
And on the other hand, I couldn't have someone else write it for me. I had to maintain at least my own style of speaking or what I was trying to communicate just wouldn't sound like it was authentically me. So I let go of being the Lone (Control-Freak) Ranger. I asked for someone to type what I dictated and I asked another to edit what had been transcribed. My family came to my aid the instant I hung up my spurs.
The result was ... I was able to have it all. My style remained intact and the sermon was far better than I could have imagined. I was able to finish this sermon on time with special thanks to:
- my wife Jean and daughter Jenna and son Sam for their unending editorial, proofreading, helpful critiquing while also providing me with much needed morale and physical assistance,
- my minister, for both offering the opportunity and the guidance I needed to put together an actual sermon,
- my classmates for showing me the way with such inspirational sermons of their own and for refusing to let me back out when the going got rough,
- and more thanks to the many musicians and other volunteers who made the entire service that morning come off without a hitch.
I also learned ... that from now on, I will be more than happy to leave all future sermonizing in my church to our minister!
So, in closing, I think that the answer to my many friends and family, as to why I generally have a positive attitude toward life, whatever its challenges, is:
That on the one hand, what MAKES LIFE POSITIVE FOR ME, is just being here to share this gift of life with each and every one of you.
And on the other hand, what KEEPS LIFE POSITIVE FOR ME, is that, in my mind's eye, I have a toolkit, whose tools help me to continually adjust to life, rather than become a circumstance of it.
May you now go forth and build your own Mind's Eye Toolkits! And may the Power of Leverage be with you and yours forever!!