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Disability Blog

Thinking of starting an open blog for people with disabilities and their families to share tips, tricks, experiences and knowledge on how to remain independent through the disability journey. Collectively we are an unmatched mass of knowledge.

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Diagnosis vs Prognosis

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Short Term Memory

Ever wonder how a good waiter or waitress can take your order and that of other tables and never write a thing down? And they do this all night never making a mistake. Bluma Zeigarnik wondered the same thing about this phenomena at a restaurant while observing the same thing. She watched them for hours taking orders by memory then seemingly eliminating the memory once the food was served making room for the next order in their memory.

Zeigarnik, a Russian psychologist, was intrigued and proceeded to find out how the short term memory worked. Using participants in lab tests she gave those tasks to complete without interruption and some tasks where she took them away before completing the task. Her discovery showed the people remembered the unfinished tasks twice as much as the completed ones. Understanding the Zeigarnik response it makes sense why difficult, hard to complete puzzles like Rubik’s Cube and TV serial type programs with cliffhangers at the close of each week have such a big following. Short term memory can’t dispose unfinished tasks easily. Like a computer it waits for you to come back and finish.

Understanding the Zeigarnik process can also help prevent procrastination by at least starting even a small piece of a project. If the task seems overwhelming and you are at a loss of where to start you can begin anywhere even with an insignificant action. Once it is in your short term memory, hanging in the air unfinished, you will be driven to complete it. It remains there like the puzzle and the cliff hanger. Although the technique is simple, we often forget it because we get so wrapped up in thinking about the most difficult parts of our projects. The sense of foreboding can be a big contributor to procrastination. If you have a goal you are passionate to reach understanding Zeigarnik could be your road to success.

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Pantyhose Anyone?

Some of you won’t even remember pantyhose and it’s just as well. For some reason society back then felt it was an absolute necessity for nice girls to wear under their dresses and skirts along with a tourniquet called a girdle. The natural look was definitely not in. Just about everything you put together for a night of dancing, partying or visiting friends was fake. Wigs and hair extensions were in, false eyelashes, the girdle, perfume, plastic jewelry, make-up including fake blush and the dreaded pantyhose. It was all about others pleasure looking at you not your comfort.

You didn’t dare go to church, where ladies did not were slacks, or to a wedding or any event where you had to dress up or even your workplace with bare legs. Pantyhose was expensive so the average woman only had about three pairs. They would get runs easily, really easily. They came in different skin shades and some of the more expensive ones had what they called “control top” that was to hold your stomach in. These were made of nylon that stretched so, unless your stomach was already flat, it was wasted money. Then there were the “nude toe” so you could were them with sandals. Nothing like putting the fragile nylon right out there in front so they could snag everything they touched. They were HOT. I grew up in Phoenix and wearing pantyhose in 120 degrees should qualify as an Iron Woman marathon event.

So, I pondered why they were invented, what was the purpose? After digging in the history I found the answer appalling. The main function was to hide any scars or veins and make us more desirable to men. It’s just another example of societies expectations of women’s perfection. Pantyhose really exploded on the market in the late 50’s to early 60’s with the mini-skirt faze. But this generation would also bring it to a close with the feminist movement and the hippie natural look and the acceptance of women wearing trousers and jeans. Just shows you how much power women really have if they unite their purchasing power. My mother still insisted on wearing pantyhose even in the nursing home in her late 80s. Somehow it got tied up with decency and morality. My mother was big on both believe me.

L’eggs, one of the largest manufactures of pantyhose, is trying a comeback but this throwback scheme is trying to influence young women who are smarter, more empowered and self-assured who are not interested in a product their grandmothers used. Tanning beds and ultra-rich lotions is all that’s needed now for a much more active and comfortable lifestyle. Plus the nylon material is not biodegradable.

I haven’t wore pantyhose since 1968 and I don’t miss it one bit. It’s also been almost that long since I wore a dress. Some things are best left in the past like suffocating girdles, garter belts, plastic jewelry and pantyhose.

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Bye Bye Landlines

Hello? I think I’ve been disconnected!

What’s the future of landlines I wonder? I’m old enough to remember rotary dials in my elementary years and prided my ability to remember all my family and friends phone numbers. The sound of the ring was an annoying screech that you sprinted to answer because it automatically kicked off a fight or flight response in your body until you did. By the time it’s slow return on the rotary wheel for each and every number and finally connection you could make three cell phone calls and answer the door at the same time. But there was something comforting about holding that heavy handset spooned against your neck. Interruptions were taboo in polite society except for kids too young to ground them if they did. And of course the ability to slam the receiver down to show them you were fed up. That’s a whole piece of body language gone now. The red end button just doesn’t convey the same emotion.

There was no voice mail and no answering machines yet so if your sister was on the home phone with her boyfriend and you were languishing in the nurse’s office throwing up you just had to wait. That exasperating busy beep interrupted many opportunities to join friends going swimming or shopping too.

By the time I started high school the push button phones came out and in colors. You could also order one that actually fit on a wall with a 6’ cord. We bought one in Harvest Gold for the kitchen wall. My friends were pretty impressed. We had two phones now but you could only use one at a time. I was lucky because my Dad was a house painter who used the phone for business so we had a private line. Although my calls were timed by my parents at least I didn’t have to deal with the dreaded party line like my friends.

A few years later they came out with “princess” phones that I fell in love with and that my dad said he would never use if it was the last phone working in the house. One of the problems with it though was the handset was heavier than the base so it was always in danger of being drug off the nightstand. Regardless, it was high fashion and made you want to sit up straight and cross your legs to talk.

Landlines made you want to stay at home to wait for those important calls like boyfriends and the latest gossip. The only time I drifted from it was to join the people I was waiting to hear from or a close neighbor. I could hear our phone ring two houses away, jump an evergreen hedge, slide into the kitchen and answer it before the third ring. The phone was every bit as addictive as cell phones are today. We were just more confined so the general public did not see people walking around on phones like today.

It was only 15 years ago that I got my first cell phone and only 5 years ago my first “smart” phone. I love the freedom to be available anywhere I go and I hate the freedom of being available. At my age if I turn it off every kid I have would be hunting me down thinking the worse. But, since I can’t jump those hedges and do nothing near sliding into the kitchen anymore I’m happy it’s always in a room with me. I guess evidently even businesses will stop using landlines and trade off to better technology. Will all the telephone poles come down replaced with more cell phone towers?

I’m just pondering though if my great grandchildren will even know what that box with glass is that Superman changes his outfit in.

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Humanity’s Key

Last trip to Memphis for my granddaughter's treatment for leukemia at St. Jude’s Children's Hospital. Rain is pelting the windshield, wipers fighting the force of water and wind then spots of no rain at all. It is a symbolic example of our three year journey coming to a close. We pull into the parking lot of the Tri-Delta House where we have a room reserved for us. We see new people and the familiar ones still fighting and hoping for a cure.

The next morning we arrive for the first of three MRI's and labs, CAT scans and psychological testing that takes up the entire day. Tomorrow is full of appointments also. Humidity is heavy and it bears down on already stressed out emotions. Parents walk around downtrodden. Eyes vacant, trying to follow directions like good little boys and girls in hopes that a reward of a miracle of life will happen for their child. Robotic migrations from clinic to clinic carrying the all-important daily schedule that can change at any moment and invariably does. Waiting rooms are around every corner because that's what you mainly do. They are filled with distractions for the child waiting for what they know will be the next painful procedure. Parents hate it too but there's nothing left now except faith and hope and perseverance. It is an atmosphere of controlled chaos and a test of human endurance as to how many emotions you can shove down internally and keep from your frightened child moment by moment. Your own silent scream must remain that way until the end whatever that brings.

The lodgings are more than adequate. Living rooms, play and game rooms are adorned with beautiful furnishings, toys and up to date technology. Every wall has painted murals of landscape and animals that most of the children will not get to see, for real, for a long time. Some huge temporary houses like McDonald's House have several big kitchens so you can make your own meals during the long term stays. The compound is gated and ran like a 4 star resort only what you are going to experience has nothing to do with pleasure and relaxation.

Staff does not build false hope even though it's the only thread left in the fabric of your life to hold on too. You learn to build your own. This is a sub culture of desperation where everyone here belongs. The journey is like a train speeding toward a destination where every rider hopes they can eventually get off and get on with their lives. Some do but some are derailed along the way and never reach that station. This fact lives daily like a virus in each parent’s heart. None of this is St.Judes fault. They try very hard to accommodate but the situation is devastating and personal. It takes a very strong parent to endure and balance the medical control with their knowledge of what’s best for their individual child. Often you find yourself swinging from despair to anger.

We are grateful, relieved and blessed because we reached our train station as all the tests were negative and my granddaughter is cancer free. But, the fight continues there for so many. It is a journey that changes your Soul and lives within you forever. We believe in playing forward every life experience we learn from. My daughter met a grandmother this morning who has just arrived with her granddaughter and daughter. She is lost and she is desperate. My daughter gives her insights, navigation tools and when to take some advice with a grain of salt and which to pay attention too. She tells her the most important tool is research of everything, the drugs, procedures and advice. She has helped so many parents over these years cope during the worst journey of their lives.

My granddaughter started a website called “Freaking Out On Cancer” the first year of treatment. It is a place kids can talk about pain, victories, despair and joy. She intends to continue this website throughout her life. This journey into the valley of death was traumatic for our whole family but we made it through. Playing this experience forward is a way we can repay our incredible miracle. Each one teach one is the golden key of humanity.

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Learning To Shift

I read somewhere that only 4% of new cars sold in the U.S. have manual transmissions. There were a lot more in the 60’s when I was a teenager learning to drive. We had an almost new Pontiac sedan with automatic transmission and power steering that was a breeze to drive but my parents insisted I learn to drive my Dad’s old paint truck first. It was a 62’ step side with a 3 speed shift on the column, no power steering and smelled like paint and turpentine. You had to keep yourself focused to keep the fumes from making you daydream about your boyfriend. But I would do anything to get my driver’s license and my life was a little askew of my girlfriends anyway like the fact they all had pretty designer dogs and we had a hunting dog that stunk.

So, every Saturday off we went to the desert. I had not graduated to a city parking lot yet. My older brother was usually my instructor which I resented because he was so picky. My verbal instructions each and every Saturday according to him was - stay mentally vigilant, do not take your foot off the clutch letting it fly up stalling the engine, do not try shifting without the clutch or break forgetting you have a clutch, do not look at the shifter instead of the road (many cactus lost their lives by my hit and run), do not mistake neutral for first gear and revving it until smoke comes out of the tail pipe and the biggest demerit of all was forgetting to take it out of gear when parked causing his cigarette to fly out the window when the truck violently jerks forward. yada yada yada

After the summer of mind numbing practice I learned to effortlessly release the clutch millimeter-by-millimeter in a smooth transition. I graduated to city parking lots and even parallel parking which is a whole different learning curve than automatic transmissions. Although I was ready to take my driver’s test in my mom’s sedan my brother convinced them that I really needed to learn the five speed stick on his disgusting dirty Scout 4 wheel drive. Just to be rounded he explained.

So off we went to the desert again but I already had the clutch down pat so just had to learn the 5 speed configuration without always looking at it. We started in the area I already cleaned out the cactus months ago so no more fatalities would occur. A few weekends and I was a pro. I finally got my license by driving the automatic, power steering, glide on a cloud, Pontiac family car but I was capable of driving just about anything now. I knew a lot more than my classmates who only drove automatics like do I use second or third getting for the exit ramp, is the grade steep enough to downshift, did I remember to put it in first gear before parking. You never stop assessing the situations. Automatic transmissions took whole steps out of the driving process. Driving while doing something else isn’t like letting go of your handlebars while riding a bike. It’s like operating a missile without paying attention to where it’s going. Texting and cell phone calls are just about impossible while driving a manual transmission.

I look back now and marvel at the devotion of time and patience my family had to teach me skills that lasted a life time. Bonding together came naturally as each one taught one in my family village.

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What Is Hope?

When I got the call at 5am that my granddaughter and her mom were at the hospital my mind was spinning with panic. When I learned the sudden and unexpected diagnosis was leukemia a silent primal scream of agony tried to escape from my soul. For the next week it was followed with denial, anger, fear and an emotional pain that threatened to sweep my life away. I know other families have gone through this horrifying journey but this was “my” grandchild. All I could think of was her charm, beauty and honor roll mentality and the fact her 13th birthday was just last week. High school was just ahead with exciting opportunities for friendships, proms, dates and preparation for college. Was all that gone in one sweeping diagnosis early one morning?

I’ve learned a lot since those first few months. She is 16 years old now and will be finished with the treatment protocol the first of the year. It was an agonizing three years of pain and sickness complicated by the fact she was allergic to almost all of it and now is left with bone joints that are crumbling from a reaction to steroids. If not for St. Jude’s Children’s Research Hospital in Memphis all hope would have been lost. I knew Danny Thomas started the hospital and research center but was curious about the Saint he named it after so I did some research.

It is named after Saint Jude known as the patron of lost causes and desperate cases, and the patron saint of hospitals. Jude was one of Jesus’ twelve original apostles. His lineage is documented as a direct relative of Jesus, a cousin. There are certainly many sources of shared personal history, for instance any reference in the New Testament to “the apostles” would presumably include him. Thus we can conclude he was in the boat, on the hillside, in Jerusalem, at the Last Supper, etc. He also preached and taught in Turkey, Syria, Libya, Samaria, Judea and Palestine. Saint Jude is also the patron saint of hope. Maybe this is the most important thing he represents as many times it is the only thread left to grab onto. There is something endearing about its endurance when times are bleak. In Emily Dickinson's "Hope is the Thing with Feathers," the poet writes about hope as a bird that continues to sing despite not knowing the words, despite being stuck in a storm, despite the worst of conditions.

Hope is the belief that circumstances in the future will be better. It's not a wish that things will get better, but an actual belief, even when there may be no evidence that anything will change. We held onto that thread with our belief of hope so tight that most times we were exhausted but we never gave up. And now she is in remission. Her joint surgeries almost half done and she has just re-entered high school after two years of treatment. Her charm, beauty and intelligence still in place only now honed with a strength and maturity only a life tragedy can teach you. Hope is not denial, it is faith in the darkest times. Danny Thomas selected the perfect Saint to represent what his heart was trying to give to children and families in dire circumstances with a crisis too devastating to comprehend.

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Are We Warehousing People?

Are we warehousing our people? Institutions have been banned long ago but there is a subtle, ever so gentle push to contain, manage and control citizens who have similarities. These similarities are not physical but based on a much more pervasive demographic. These citizens are our seniors, the disabled and low income of our community. Senior housing, section 8, HUD housing and accessible complexes lure citizens by offering amenities specific to their needs. All fine and good but makes you wonder why the American culture is so dead set on categorizing its citizens. This categorization starts at the funding source itself. The qualifying criteria of government programs demands a label.

I agree there are gated communities where people choose to live around their own peers of the same social status. That is fine and it is their choice. It is America and we are supposed to have freedom of choice. But here’s the disparity, the financially stable “choose” and the low income citizens “qualify”. Money should not be the benchmark of a person’s worth to society. Unfortunately it is the standard by which budgetary funding also rest on. It’s always about the money. It’s more expedient to build apartments that are all user-friendly to the occupants needs. I get that. Instead of ordering one roll-in shower component the contractor can order 100 and get a price break. It’s easier to build senior units all without step entry rather than a few at a regular apartment complex. But we are using this justification to place individuals and separate them like cattle into appropriate barns.

Why not separate young adults from middle age adults? Separate smart people from average people and so on. I’m not saying wanting to be around people like yourself is wrong by any means. What I’m trying to say is that not having a choice is wrong. We desperately need more integration and less isolation. The wealthy in America represent only around 10% of our population. That 10% can make any choices they desire while the 80% must qualify, if not now, usually by late adulthood.

If housing was built using universal design anyone could live anywhere. The cost for building would be the same regardless of the occupants needs. Some seniors prefer to live with neighbors their own age but some do not. The seniors I’ve interviewed feel its depressing and one step from the nursing home but have no other option. Many of the residents I spoke with who live in expensive retirement communities have moved back to individual residents complaining their autonomy was compromised by the cruise ship activity mentality at the big retirement complexes. At least their own financial security allowed them to make that choice. Categories may make it easier to finance and serve the people with disabilities, seniors and low income but it smacks in the face of American freedoms.

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When Non-Profits Go Astray

When Non-Profits Go Astray

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The Gypsy Girls

  For a while we lived in a different world than most of our friends and family. We were happy but most people doubted that. We were homeless but we were survivors. We looked at crisis as an opportunity to see what you are really made of. It was an odd existence that most misunderstood like the classmates from my daughter’s school that called them “gypsy girls” echoing the adults disapproval. The…

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Social Media Not All Bad

Social Media Not All Bad

Like almost everything else we use in this world social media has its good points and bad. It is a tool and how you use it will produce the outcome. On the positive side it has worldwide connectivity that allows unlimited searching for relatives, long lost friends, an old teacher or even a pen pal from another country. The most well-known social networking communities are Facebook, Twitter,…

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Humanity's Key

Humanity’s Key

Last trip to Memphis for my granddaughter’s treatment for leukemia at St. Jude’s Children’s Hospital. Rain is pelting the windshield, wipers fighting the force of water and wind then spots of no rain at all. It is a symbolic example of our three year journey coming to a close. We pull into the parking lot of the Tri-Delta House where we have a room reserved for us. We see new people and the…

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Stardust

  Come drift with me tonight

As your drowsy eyes close

We will meet on serenity’s shore

where divine possibilities flow.

  We will sail through the Milky Way

in our vessel of stardust and gold

then circle the moon

watching mysteries unfold.

  When dawn rises with its

vision of new hope

we will remember the journey

is the reason we woke.

M Trimble

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Perserverence

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Change

I’ve thought a lot about change lately. Like they say it is the only constant. My life has been full to the brim of it as long as I can remember. So much so that I got to where I expected change, even looked forward to it like an old comfortable blanket. Although, I wasn’t always that way I just adapted to the ride. I was married young by today’s standards at 18 years old but was more than ready…

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Defending Christmas

Christmas oh how I love thee. The sounds of beautiful music that flows like a river through my excited soul and fills my senses with smells of evergreen, fireplaces burning oak and cinnamon wafting from the kitchen.  So many Christmases have I experienced through my long journey. Some I was poor, some rich, some in stressful times, some in celebrating times. But, Christmas is above all that. It…

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