Navigating Life’s Road Map without a Map

Navigation through life

If you get through your life by the seat of your pants, it all works out somehow, just in a dissimilar way than those of us who methodically plan.

I am a planner for a few reasons:

  • I truly believe that my childhood was so unique from a psychological viewpoint with tons of hospitalizations, surgeries, medical appointments, school and trying to squeeze in  normalcy whenever possible, for which I have to highly  commend my parents, that as an adult, I need to grab hold of control.
  • Lack of control as a vulnerable child with lots of unknown variables left to chance causes me stress.
  • I have an inordinate number of responsibilities I consider out of the norm at this juncture of my life, trying to carve out a rewarding pay it forward existence and future retirement and doing it all solo.
  •  I try to give myself permission to be that “seat of your pants” kind of person. However, admittedly, I need to do it more often!

What happens to people who are never captains of their own ship? Have you ever wondered?  Here’s a window into that world.

Executive functioning  is a psychological term often diluted to a mere buzz word. To understand this term appropriately as a series of skills, is to know your inner self and to know your relatives or your best friend and even your worst enemy. Organization is one of the tools in the tool box. Organization helps you plan a project, the vacation of your dreams or your wedding, to name a few.

Clinical Psychologist Joyce Cooper- Kahn explains it as a set of processes involving mental control and self-regulation – the “Conductor” of all cognitive skills (i.e. involving perception memory, judgement, reasoning.)  The 8 magic abilities help us manage life tasks.

The following storyline is similar, not a blueprint to the one offered by Dr. Cooper Kahn in her article.  “Marge” is a typical homemaker, married with children. She has a heart of gold and is well-intentioned in all things. However, she would be considered weak in executive functioning.

Marge receives a call from a good friend offering her accommodations on a family cruise, as another friend couldn’t make it, providing she could commit soon. Marge is thrilled to have received the call. Without thinking, without hesitation she says, “Of course we’ll take it. We wouldn’t miss it.” Her friend shares details over the phone. However, Marge is distracted, does not listen intently, can’t find a pen as she rummaged through her kitchen. She promises herself to call her friend soon to get it down on paper.

That evening, Marge enthusiastically tells her husband and three children about the offer. Her husband Bob asks about the date and Marge replies, “Some time in June saying, I don’t remember exactly.” Bob requests that she find out the details as he has to submit a vacation request in advance.  When Marge discovers that her children have set plans for the summer with a variety of activities which she forgot, Marge is livid, yelling, “Why are you all being so negative? This is supposed to be fun!”

Every week, Bob reminds Marge to get the information about the trip, but somehow the weeks slip by. Finally, Bob gets annoyed demanding she “Do it now! I’m going to stay right here in the kitchen until you call!” Marge calls and gets the information and he obtains approval at work.

Over the next month, Marge has fleeting thoughts of the trip. She thinks about how the kids will need to have things to do in the car since it’s a long trip. She thinks about taking food and snacks for the ride. She thinks about getting her work at the office cleared up in advance so she can be free of commitments for the vacation. She thinks, “I really should take care of that stuff.” But, she does nothing in advance.

A few days before it is time to leave, she does gather a few things for their trip. As they pile into the car to leave for the airport the kids ask, “Who will be taking care of the cats while we’re gone?” Marge is upset, “Oh no! I forgot about that. We can’t just leave them here to die and there’s no one to take care of them! Now we can’t go! “

Bob takes control, starts calling around the neighborhood until he finds a teenager who can do the pet sitting. The crisis passes. The cats will be fine.

Bob drives the first shift. He pulls out of the neighborhood, gets onto the main highway, and then asks, “So, what’s the game plan?”  Marge says, “Geez, I don’t know. I didn’t ask. We’ll just follow the crowd.”

Bob says, “You don’t know any more details than that? You know that our daughter has physical limitations. Why didn’t you check?” Bob sighs and shakes his head. “Another road trip without a map”, he says.  “Why didn’t you tell me you were having trouble getting it all organized? I could have helped.” Marge denied having any trouble, replying, “Everything is fine. What are you so upset about?”

(Do you think Marge made reservations for excursions on the cruise?  Do you think she budgeted what their charges might be? Of course, these and many other details, had escaped planning.)

A List of Executive Functions

With the illustrative story above, the specific abilities, with parts of the story as a reference, are listed under the umbrella term of executive functioning. This is the meat of the matter!

Can you identify which skills you possess and whether of not you have good EF skills? 

  • Inhibition – The ability to stop one’s own behavior at the appropriate time, including stopping actions and thoughts. The opposite of inhibition is impulsivity. If you have weak ability to stop yourself from acting on your impulses, then you are “impulsive.” When Marge’s friend first called, it would have made sense to tell her, “Let me check the calendar first. It sounds great, but I just need to look at everybody’s schedules before I commit the whole family.”
  • Shift – The ability to move freely from one situation to another and to think flexibly in order to respond appropriately to the situation. When the children questioned who would watch the cats, Marge was puzzled. Bob, in stark contrast, began generating possible solutions and was able to solve the problem relatively easily.
  • Emotional Control – The ability to modulate emotional responses by bringing rational thought to bear on feelings. Marge’s anger, when confronted with her own impulsive behavior in committing the family before checking out the dates: “Why are you all being so negative?”
  • Initiation – The ability to begin a task or activity and to independently generate ideas, responses, or problem-solving strategies. Marge thought about calling to check on the date of the cruise but she procrastinated until her husband initiated the process.
  • Working memory – The capacity to hold information in mind for the purpose of completing a task. Marge could not keep the dates in her head long enough to put them on the calendar after her initial phone call.
  • Planning/Organization – The ability to manage current and future oriented task demands. In this case, Marge lacked the ability to systematically think about what the family would need to be ready for the trip and to get to the intended place at the intended time with their needs cared for along the way.
  • Organization of Materials – The ability to impose order on work, play, and storage spaces. It was Marge’s job, for good or for bad, to organize the family things needed for the trip. However, she randomly threw things together regarding items and events for the trip.
  • Self-Monitoring – The ability to monitor one’s own performance and to measure it against some standard of what is needed or expected. Despite the fact that they’re going on a cruise, not thinking ahead about a child with a disability, having no map, virtually no planning, Marge still did not understand why her husband was so upset.


Executive Functions are diverse, related and overlapping skills.  If you see yourself in “Marge,” never fear. It’s all good. If you want to change, you can work on the most problematic ones! Carry on!



Homicide as a Steady Diet


When an ordinary person such as myself, through nonstop hard work, rises through the ranks to become a minor public figure based upon my personal tragedy, it gives one pause. Why? First of all, no crime victim or homicide survivor ever signed up for this occurrence. We are unprepared for how we might function on a daily basis. We certainly were not prepared for the long view of life and what twists, turns, hardships and even joys, yes, future joys there would be.

As a passionate person with passionate causes, I am blessed to have a myriad of outlets from which I can deliver my messages. Way back when I was a mere tadpole on the lily pad in Connecticut going from person to person the proverbial skies opened up with opportunities afforded by the likes new people who entered my life, and it has never been the same. From a national advocate, author and radio host, to learning social media and marketing myself from a professional, I was given the step up.

My vessels of expression now include:

However, with this presence comes responsibility. When you achieve a certain degree of success, however you personally define it, one hopes that people respect you for the journey that has been travelled, for your accomplishments, resiliency, intellect, talents and compassion for others.  Regardless of these traits, you travel down the path of least resistance addressing the topics you know best, which in my case happens to be homicide, up close and personal.

Based upon years of experience, meeting others in the same boat, trial and error, and a lot of injustice along the way, I’ve become the authority and serve up various and sundry murder pieces on my blog.  Maybe it’s a reflection of today’s society, but it seems that the public has a veracious appetite for violent crime!

This steady diet thing is akin to being typecast in one role as a famous actor/actress who can never quite shake that persona, past TV show or movie in order to spread their wings and show a diversity of talents. Lucille Ball, Carol Burnett, Sylvester Stallone, Jean Stapleton, are just to name a few.

If I step back and look at it as my alter ego, “Ladyjustice,” I often wonder where my allegiance lies.  Do I give my audience a steady diet of what I perceive that they want, violent crime, just for the sake of gaining readers? No, I think it should be known that I’m multi-dimensional with many interests beyond homicide. I do advocacy work through my employment with persons with disabilities daily. I have more medical experience than most MD’s due to my own health issues and a medical clinical career as a speech-language pathologist for well over 20 years. I have other creative interests and hobbies when I make time to pursue them.

Another dilemma is what many crime victims hear from the outside world that dreaded refrain from those who don’t really understand (and sometimes even in our own immediate families). “It’s been X amount of time, isn’t it time to move on now?” This phrase cuts like a knife to some of us who’ve experienced the injustice of being a victim of crime. But, to be perfectly honest, many of us have found a niche. We, in fact, don’t ever think of moving on, as the frame of reference is always moving up to bigger and better things that fulfill our passions at the time.

Parting words to my audiences – go with the flow; you just might enjoy the ride if homicide is not always the main entrée!


Incorporating Universal Design into Condominium Ownership

c6fb278dd8568fc95923df08a6efc8dcMy Dad and Grandmother were landlords with several properties in inner city Hartford years ago. It was not an easy job, however, they were good at it. I used to love to travel with my Grandmother every Saturday to collect rents in her big Pontiac station wagon which doubled as a “hardware store.” It was truly an adventure!

Fast forward to today, as I celebrate my one year anniversary as a vacation homeowner. This too has been quite an adventure and a learning curve. I am about to embark on my journey into Universal Design (UD) concepts for my master bath in my lovely Myrtle Beach condominium sitting on a golf course view and only five minutes from the sandy beach.

Buzz words are often meant to impress. If you know the lingo you are perceived to know your stuff. However, when terms are used interchangeably, and incorrectly, it leads to confusion and misinformation.  Such is the case when the worlds of disability, architecture and public perception collide.

Wouldn’t it be great if our world was free and easy for everyone- from gaining access to a building, to taking a shower, to making a cup of coffee, to communicating with others, irrespective of impairment, or no impairment?  Absolutely!  This is why Universal Design was created. According to officials in design architecture at the North Carolina State University, UD is sometimes termed as lifespan design, transgenerational design or user-based good design and goes well beyond accessible, adaptable barrier free design. UD eliminates the need for special (i.e. special spaces, special needs, designed for a specific person). Some persons in the disability community perceive anything designated special needs as stigmatizing, singled out, visually not blending in and more expensive to implement.  UD was forged in part by the unavailability of appropriate, commercially produced products fitting the needs of individuals with disabilities and elderly, particularly as the life cycle lengthens.  (Life expectance according to 2015 CDC data, irrespective of gender or other factors was rated as 78.8 years on average).

Definition-“Universal Design is a design concept which recognizes, respects, values and attempts to accommodate the broadest possible spectrum of human ability in the design of all products, environments, and information systems.” Moreover, UD is meant to enhance opportunities for participation and social integration.  Design staff must have knowledge of these concepts for all ages and abilities. 

From a marketing and economic perspective, UD has the potential to drive the demand higher as products are mass-produced, thus lowering the cost for users.

Why ADA Standards Aren’t and Shouldn’t Be Just “Good Enough”

16769-a-woman-in-a-wheelchair-getting-into-a-shower-pvThe Americans with Disabilities Act was conceived and enacted in 1990, 25 years ago. That is a lifetime in many arenas. Life does not stand still, nor should innovation.

The Problem(s)

  • Terminology – Accessible and Universal – are not synonymous.  Compare the UD definition above with this from the ADA Glossary of Terms – Accessible – is a site, facility, work environment, service or program that is “easy to approach, enter, operate of participate in and use safely with dignity by a person with a disability.”
  • There is an ADA Checklist for Readily Achievable Barrier Removal which assesses things like entryways, parking, doorways rest rooms, signage, stairs, elevators phone booths.  The regulations clearly state, that structural, architectural and communication barriers must be removed in public areas of existing facilities when their removal is readily achievable (i.e. easily fixed without much difficulty or expense.)  So, cut that curb, install that ramp, reconfigure that parking space, it seems to be saying, structural only just doesn’t cut it!
  • The fact is, the ADA was created to establish MINIMUM STANDARDS for access and not to support a disabled person’s right to full and active participation in society.
  • The Myth of Grandfathered In   In the initial ADA Regulations, people erroneously thought that there was a grandfather clause or exemption for older buildings. I recall hearing this excuse over and over back in the day whenever I would bring up a concern. Who knows how this myth began. But, according to Disability Rights attorney, Edward Zwiling, he writes that grandfathered in is a myth, and quoted the existing facilities when readily achievable terminology as per CFR36.304 in a recent blog.  He states further that there is a safe harbor if facilities were in full compliance with the 1991 guidelines, which were in force through March 2012. They were not requiring compliance with 2010 Guidelines, except for new areas such as swimming pools, golf facilities, amusement parks.
  • More Shortcomings of the ADA Standards Compared to Universal Design- The ADA Regulations make no allowances for those with cognitive or sensory impairments or ongoing changes due to aging. Remember, the goal of Universal Design (UD) is to not only exceed minimum standards, but to meet the needs of as many users as possible simultaneously by implementing an integrative approach.

The Seven Principles of Universal Design

  • Use of UD should be identical whenever possible, equivalent at minimum to avoid segregation, and stigmatizing. Use must be private, safe, secure and appealing. 
  • 2) Flexibility in Use – UD should accommodate a wide range of individuals and preferences.  Considerations such as handedness, those using a different pace, difficulties with coordination, precision or accuracy. The design should incorporate a choice of methods for ease of use. Examples– ATM’s incorporating visual, tactile, auditory feedback, tapered card opening, palm rest;
  • 3) Simple and Intuitive Use– UD needs to be easy to use irrespective of a person’s experience, knowledge, language or comprehension skills or their ability to sustain concentration. Here, it is important to accommodate language and literacy skills, decrease complexity, recognize the need to create consistent expectation and intuition, arrange information in a hierarchy of importance and provide effective prompting and feedback throughout the process. Examples– A moving sidewalk, escalator, a graphic instruction manual;
  • 4) It’s All in the Perception – UD strives to communicate information effectively, regardless of environmental distractions or user’s sensory abilities/impairments. Thus, providing the option of multi-modality information –graphic –verbal-tactile information, providing adequate contrast to surroundings and using a variety of ways to provide instructions. Examples– Multi-modality thermostat, redundant public signage;
  • 5) Tolerance of Error– In other words, the design and process is “forgiving” if an error is made. (Yah! Just what I need!) UD arranges the components such that errors are minimized, hazards are eliminated and warnings are given. Examples– The “undo” feature in computer software; a double-cut key use in either side;
  • 6) Efficient and Comfortable Design With Little to No Fatigue – This principle for UD encourages a neutral body position, with equipment that is reasonable to operate; Minimal sustained effort or repetitive action required. Examples – Touch lamps without a switch; lever or loop door and faucet handles;
  • 7) Size and Space for Approach and Use-This final design principle concerns having adequate space, reachability, ability to manipulate and use a device, regardless of a person’s disability, posture or body size. This involves such things as a clear line of sight, reach from a seated position, ability to alter hand and grip size and space when using assistive devices or personal assistance.  Examples –Hand controls on the front of appliances, clear floor space, widened gates in airports.

universal-design-bathroomAll of these principles must be included in any Universal Design. Refer to my forthcoming blogs for more information on related topics. I can’t wait to see my new UD Master Bath completed by the skilled staff of Hospitality Services of South Carolina.

Contact Info And Bath Remodeling – Hospitality Services:


Tel: 843-651-1069 Office


The ADA Checklist for Readily Achievable Barrier Removal;

 “The Green Monster” and the Black Curtain


There are few situations that are intolerable for me as a seasoned crime, disability and “medical procedures” veteran. However, a recent experience increased my empathy for the clients I serve with blindness or visual impairment. I also naively thought I had seen it all when it came to medical bureaucracies and treatments. Oh how wrong I was!

There I was, minding my own business recently when amid the sometimes shower of little black floaters common after cataract surgery, a “black half moon” appeared and persisted in my lower field of vision. The next day I left work and went to my optometrist for what I thought was a routine check.  Upon examination he was quieter than usual. I knew something was up!

He said, “You have to go to the hospital and have surgery TODAY, you have a detached retina.” Retinal detachment repair is eye surgery to place a retina back into its normal position. The retina is the light-sensitive tissue in the back of the eye. Detachment means that it has pulled away from the layers of tissue around it.

Whoa! What? Where, When? Why? No matter, I had to do it. However, thinking you could be examined and have surgery the same day is pure fantasy in the world of healthcare.  Local surgeons were either operating or on vacation. I scrambled to find a solution.  Searching my mental Rolodex, we contacted a surgical practice I had visited once after my cataract surgery.  Being single with no other family member to turn to, I felt guilty to have to impose upon my mother who has so selflessly dedicated her time for years to all of my medical endeavors. At 82, she did not deserve this one either!  This amazing woman, after the initial shock, took it in stride and told me it was her job as a mother. We knew we would do it together.

Although I work for one of the best agencies for the blind in the country, no one was familiar with the recommended medical treatment I was required to do. It was kind of cool for me to educate my colleagues on a vision related issue for a change.

  • After many twists and turns due to other medical emergencies, and high volume in these mullti-physician practices, I was evaluated with several diagnostic tests and found to have a significant tear from 11 o’clock to two o’clock.
  • As it turns out, different ophthalmologists recommend different treatment procedures, depending upon the advanced nature of the problem.
  • If holes or tears in the retina are found before the retina detaches, the eye doctor can close the holes using a laser. This procedure is most often done in the doctor’s office.

  The Anatomy and Procedures:

  • Pneumatic retinopexy (gas bubble placement) is most often an office procedure
  • The eye doctor injects a bubble of gas into the eye.
  • You are then positioned so the gas bubble floats up to the hole in the retina and pushes it back into place.
  • The doctor will use a laser to permanently seal the hole.

 Although my detachment was caught early, it was severe and required surgery in a hospital. I insisted it be done with general anesthesia – while totally asleep. 

  • The scleral buckle method indents the wall of the eye inward so that it meets the hole in the retina. Scleral buckling can be done using numbing medicine while you are awake (local anesthesia) or when you are asleep and pain-free (general anesthesia).
  • The vitrectomy procedure uses very small devices inside the eye to release tension on the retina. This allows the retina to move back into its proper position. Most vitrectomies are done with numbing medicine while you are awake.
  • According to the National Institute of Health, most retinal detachment repair operations are urgent. A detached retina does not get a supply of oxygen. This causes the cells in the area to die, which can lead to blindness. The surgery should be done the same day if the detachment has not affected the central vision area (the macula). This can help prevent further detachment of the retina. It also will increase the chance of preserving good vision.

Back to my Story

It was a nightmare to accomplish all of the procedures required in our time crunch to prepare for surgery from filing for temporary FMLA medical status at work, to arranging an emergency pre-op physical which I had just done a little more than a month ago, to moving to my mother’s home. And, as we learned the hard way, arranging for the green monster.  We thought that the doctor’s office would arrange for the miracle contraption, but no, we had to do it, or rather I had to.  It was incredulous to me that I was still madly making medically related phone calls and doing paperwork up to the morning of surgery day!  This should not be! I am the patient!

My Recommended Vendor- Comfort Solutions

My description of the green monster is a glorified massage chair with several pieces that detach some for nighttime sleep on your stomach while maintaining your face in the doughnut hole. It includes an inverted mirror such that if placed strategically, in front of the family tube, you may watch TV, only in this manner to your heart’s delight. Misnomer – this is anything but comfortable, particularly when you already have a physical disability!

  • It is vital that you mount this chair like a horse jockey, face down in a “doughnut hole” for up to 7 hours per day (or decreased as advised by your MD) with only 10 minute breaks.  Most people have to endure this for 7 to 10 days.
  • You may not, be in an upright position with your trunk, or your head; You may not be on your back.  You may not read indulge in social media or do any activity that compromises this position.
  • In the meantime, you are not so patiently waiting for the gas bubble that appears as a big black bubble in your eye.  It gradually subsides depending upon your body chemistry, and your body’s ability to heal.   I was fortune in that I “my time on the chair was reduced after the first day from 7 hours to 3.5 hours. However, I did lots of extra (What else was there to do?) thinking that more was better.  The physician assistant told me that being on the chair, has no effect on how the gas bubble subsides.
  • During subsequent exams, I miserably failed the eye test the day after surgery with the bubble at 90%., then 55% the next week, then near normal visual acuity on the third visit.  This was combined with a regime of three kinds of eye drops several times per day. and “careful showering.”


More on the “Green Monster “and Medical Necessity-

    • Amid numerous calls as I scrambled to acquire this chair, I learned that such positioning chairs, whether Comfort Solutions brand or otherwise, is considered a medical necessity for the best outcome by physicians   BUT, is not covered by any insurance company in the tristate area. Therefore, I was billed $300.00 on my credit card for a 7 day rental and $21.00 for subsequent days.
    • Although the chair was initially delivered to my Mom’s home, a 75 mile trek one way near the New York border.  This company expected the customer to dismantle this heavy chair , pack it precisely into a tight cylindrical box, label it, load it into your car and drive it to a UPS store, or find a pickup commensurate with your time frame!  This was very unrealistic given our situation. Therefore, we insisted that they return to pack up and retrieve the chair. Suffice it to say, I am out a few hundred, although they did offer a small discount.
    • On the one hand, you cannot put a price on your vision. On the other hand, this is so wrong as it is classified as a medical necessity.

 The Office of the Healthcare Advocate-

  • Residents in the State of Connecticut are very fortunate to have an option to the injustices encountered in healthcare. This state agency is known as The Office for the Healthcare Advocate. They assist in navigating the system, communicate with insurance companies, physician offices and other entities in an effort to file appeals and “win justice” again.  Applicants are responsible for furnishing as much documentation to “make the case” as possible.   I have worked with this office once with good results.   The caseworkers are RN’s and are skilled in the bureaucratic procedures necessary to get justice.   It is a challenge to get through at times, It may take several weeks to months, but as people know, I am a “pit bull” about such things. I have full confidence that my case worker will help me not only in reimbursement, but most importantly, to pave the way for others such that they don’t have to endure what we did and to change the classification of coverage with insurance companies.

Timing is Everything!

I was told numerous times, had I not gone to my optometrist immediately, there is a good chance I could now be visually impaired or worse, a very devastating thought!

I was really nervous that my long-term plan to fly to my home in Myrtle Beach in September would be foiled by this latest, and hopefully last medical event! You cannot fly in an airplane in a pressurized cabin if you are fresh from this surgery! I was cutting it very close, “too close for comfort,” as well as potentially losing $200.00 to change my reservations.  Could I heal in time?! Yes, I could and I did!

Studies say…” there is a 20% chance that I could experience a detached retina in the other eye.”  I prefer to think of the 80% positive.

Why did it happen? Who knows.  I did not injure my eye. I did not fall. I did nothing to cause this event.  Speculating, perhaps there was always a congenital weakness in my retina and it “chose to rear its ugly head” now. Suffice it to say, I learned many lessons.  With all that has occurred in my life, if I questioned why, I’d never get out of bed! LOL

The Most Important Question to my Doctor – Going forward, how do I tell the difference  between, “just floaters, and the real deal – retinal detachment.”  He said, “if you see a black curtain coming down, closing in on your visual field, that’s detachment.”   Black Curtain Indeed!