surviving life

It’s Not Debtors Prison But Pretty Close

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home lein

Can the state actually take your home for medical bills? Under certain conditions the answer is yes and it targets the elderly specifically. This federal law has been a well-kept secret since its inception in 1993 when all states had the option since Medicaid began in 1965 to recover some medical cost from recipients after they die. However, it was optional and states could only recoup Medicaid costs spent on those 65 years or older. When Congress passed the 1993 omnibus budget bill it “required” states to recover the expense on long-term care and related costs for deceased Medicaid recipients at 65 or older. The affordable care act did nothing to change this existing federal law. It did however move the age backward to 55 years old after considering the aging baby boomer population on the horizon. That puts potentially more estates on the hook for Medicaid reimbursements after the beneficiary dies. Medicaid is a joint federal-state program and as in any other program receiving money from the federal government, can be penalized for not complying with federal criteria.

So what does that mean exactly? It simply means that if you or your parent or your grandparent owns a home or property and is over the age of 55 could find themselves in a position of a lien on their home to recoup Medicaid spending after they die. No one expects to be a user of the Medicaid program but long-term illnesses or severe accidents that can cap out the best insurance policy can land us there in a matter of days. The services that the state Medicaid program seek recovery for is nursing facility services, home and community-based services, and related hospital and prescription drug services. There are “some” stipulations that could keep them from placing a lien on the individual’s home. The areas where states may not recover monies is if the individual is survived by a spouse who lives in the home, a child under 21, or blind or disabled child of any age living in the home. However, considering this age group that criteria usually does not apply.

The best advice of course, if you can financially afford it, is to talk with an Elder Law attorney in your local state. If you cannot afford one however here are some thoughts that might help you out.

  • The “look back” period to transfer property in order to be eligible for Medicaid is five years. Most times people don’t have this option as a sudden illness appears unexpectedly. But if you think you have the time to put your home in a loved one’s name or friend before something happens that would be the best course of action.
  • If there’s no one to leave the property to think of selling and using the money to sustain a lifestyle out of the nursing home and in your own control. You might be able to trade down to a smaller more accessible home.
  • You might even look into the reverse mortgage programs. If you qualify the money can help you stay out of the system by enabling you to remodel accessible features and give you control and independence that would allow you to remain in your own home.

Being proactive is the only way to ensure your house and property goes where you wanted to. You can research Medicaid Estate Recovery and liens on the web to get more information. You can also go to the website http://www.swcil.org and request free information. This is a nonprofit Center for Independent living serving people with any and all disabilities. They have many resources available and are always willing to assist you free of charge.

Wait A Minute!

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Why is everyone in America waiting incessantly in waiting rooms? There is waiting everywhere like doctors, dentists, insurance offices, hospital procedures etc. In most of these waiting periods are not just a 10 to 15 minute wait but anywhere from 40 minutes to over 2 hours. To make things worse all waiting rooms look alike. Old magazines, a TV in the corner, chairs shoved together so you can’t move yours away from a sick person spewing cold or flu viruses on you. The TV is supposed to suck up our time but it does more harm than good by never having suitable viewing material for everyone’s different taste. The various ages alone is a barrier to consensus. The noise can be an annoying background to someone who just needs some silence and is in pain. Elevator music is not much better and will put most people to sleep.

All of us crammed in one room look like we are watching a tennis match as our heads jerk up every time the door opens and a nurse or a business person calls the next person. We sit and read, try to tune out the annoying game shows on TV and fidget in the uncomfortable imitation leather seats while anxiously imaging 100 things we would rather be doing with this precious time we will never get back in our lifetime. I’ve even tried to be proactive and outsmart them by getting the very first appointment in the morning at 8 AM and it can still take another 45 minutes wait before they finally call me. Really? The same wait occurs for outpatient procedures that they warn you NOT to be late for. A 7 AM appointment can often be delayed up to and over two hours. I don’t know what all the answers are but I have a few suggestions.

As far as improvements I think an update frequently from a “courteous” staff as to order of selection and how much longer it should be. Just acknowledgment of who you are and that you are not forgotten relieves the stress and anxiety. I also think they need a little incentive like for every 30 minutes past your appointment time 10% off of your office visit will be deducted. I bet when they see that 10% turn in the 40% they pay more attention to their scheduling and treat the customer with respect as they are the ones lining the pockets. And of course a variety of reading material that’s not just based on the physician’s hobbies and investments. Right now the burden is on the patient (the “consumer” if you will) and not the ones providing the service. In another area of business we would not tolerate this treatment in order to give them our money.

Afterglow

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Afterglow

My earliest memory of Daddy is watching him plow furrows in our field with an old gray mule named Jack. Jack was not fond of his work and was soon replaced with a little red tractor with huge wheels on the back and a tall metal pipe that puffed smoke as it meandered its way up and down the pasture. I would play happily with my animals while watching his huge tall frame bounce up and down on the metal seat in rhythm with the rumble of the motor.Then the day would come to plant. Everyone in the family helped. I loved this part even though I was always getting scolded for putting too many seeds in one place. It amazed me when the little seedlings began to sprout above the ground. I could always tell exactly which ones were mine.

The afternoons were another favorite time for me. That was when Daddy fed all the animals. As I heard the old wooden screen door squeak, I knew he would be coming down the steps to find me. “Come on Sugar, let’s feed the chickens,”He would say. He would grab the heavy burlap sack like it was a bag of feathers and pour cracked corn into the old gray pail. I would run to open the wooden gate that led to the chicken house and we would holler, “here chick, chick.” The chickens would come running at break neck speed tumbling over each other in order to get there ahead of the rest. Next were the rabbits with their little brown pellet food, then the cats, dogs and finally the pigs. They took longer because he would first cook the pig slop in a huge galvanized wash tub over an open fire. I was never sure what all he put in that big tub except some ingredients I recognized from suppers we had eaten and a lot of corncobs. It smelled pretty good to me so I could understand why the pigs shoved and squealed as he poured the mixture into the long wooden trough.

Daddy and I had a love of animals in common and he let me have all sorts of orphans he would find on the road including five dogs, a dozen or so rabbits and more than a few cats that had kittens faster than the rabbits had bunnies. He taught me how to love them and to honor them as gifts of wonder.

When I was six we left the farm and moved to California. Daddy was one of the union painters that painted Disneyland castle as it was being built. When the job was finished we returned to Mississippi where Daddy worked at what he loved best, hunting and fishing. I would squat down beside him to discuss all kinds of puzzlement’s in my world, which were many, and he would answer each one as he shucked oysters, throwing the meat in a large white bucket and the shells in a pile that looked like a mountain. The fish odor was pungent in the humid air but I didn’t care as long as I got to ask my questions. When he finished he would ice down the buckets and take them to the fish market.

SONY DSC  Sometimes I would get to go to the ocean with him to go “floundering”, as he called it. I would walk slowly beside him in the tide pools carrying the old green kerosene lantern barely above the water as he spotted the flounder and stabbed them with the razor sharp gig. “Don’t kick the sand now Sugar,” he would remind me. I learned the relationship of the moon and tides and what nights were best for fishing. There were always wonders to behold on these “flounder nights” like jellyfish, man-o-war, alligator gars washed up on shore, crabs with their beautiful orange and blue colors and all sizes of starfish. We would fish until almost midnight or until Daddy had enough to take to market the next day.

As the evenings grew cool and the leaves starting falling and tumbling down the roads, fishing season was over. The hunting and trapping season would begin. That was the time we would discuss the squirrels preparing for the winter and watch the summer birds fly in formations heading further south or west. Daddy had a sack of wild birdseed for those who braved the winter and a sack of waste corn for the squirrels that he affectionately called “tree rats”. The over-hang on the back porch would be full of hanging mink pelts on little surf boards made of wood, drying out in preparation to sell to Sears and Roebuck. Every evening he would oil the traps and check them out using a stick to see if they closed correctly. They would snap together with a loud clank that never failed to make me jump. He only trapped what he could sell. It was a balance of man and nature that he honored.

Within a year the onslaught of commercial fishermen and large mink farms forced Daddy out of business forever. He decided it was time to work at house painting full time. He was a perfectionist in anything he created and painting was no different. It made him very respected among customers allowing him to work steady from referrals. The next few summers we traveled back and forth from Florida to California finally settling in Phoenix, Arizona.

Arizona took some getting used to for all of us but soon Daddy had found the best places to enjoy his loves, fishing and hunting. He taught me how to shoot a rifle by the time I was twelve and started allowing me to go on the deer and turkey hunts if Mom went. But, I loved animals too much by then and killing them for any reason just wasn’t in me so I stopped going. However, I did enjoy the fishing trips even though I didn’t fish. It was a time I could be near him. He would always teach me something new just when I thought I knew it all. He would get in his little 17-foot fishing boat at dawn and return with his catch before the rest of us were even up.

When it got too hot to fish he took us for a ride around the lake and pointed out the animals and reptiles that inhabited the sheer canyon walls. He taught me the different varieties of cactus, mesquite trees and river oaks. It was with him that I saw my first cactus wren hovering over a lone cactus bloom. As the day closed he would make a big campfire and marvel at the wonders in the crystal clear night sky. He would point to the big and little dippers, the Milky Way and find falling stars. Right before turning in we would locate the moon and try to be the first to name the correct phase then find the North Star. Then it was off to sleep listening to the music of locust humming and the echo of coyotes howling. Nature was familiar to me; I had no fear of it. Daddy had taught me that.

As my teenage years crested on the horizon, nature began to change our relationship just as surely as it had brought us together. The Goddess started to sing its ancient melody in my Soul and I began to set different priorities like finding a life mate, which included all the prissiness and domestic skills that went with it. I was securely under my Mother’s wing now preparing to become a woman. Even though I loved Daddy dearly, we had different destines to follow.

When Daddy was 78 years old, he was diagnosed with Alzheimer’s and soon a Nursing Home became necessary to keep him safe. My heart broke for him and anger at the injustice of it all swelled up in my throat. When I visited him he saw me as the child I once was. I ached for him to see me as a woman and to play with his grandchildren. Then one day as I was sitting there watching him, something happened to me. My Ego got out of the way of my Soul and saw clearly that this was actually a gift, an encore, to a beautiful time we had shared. I began to appreciate this travel back in time and enjoyed many hours of conversation on nature and animals, fishing and hunting. We would walk outside by the tiny flower garden and watch the catbirds swoop down on an unaware cat or admire a flock of birds flying toward Mexico.

During the fall of 1981, the children and I moved to Illinois for a job opportunity for my husband. Although it hurt me deeply to leave Daddy, I told myself he would always be there and my Mom and brothers and sister would take good care of him. I promised myself that I would fly back next summer to spend time with him. By March I was back, not to watch the birds fly in from their winter homes but to hold his huge weather beaten hand while he lay in the stroke induced coma he had been in for days. I could barely withstand the deep sorrow I felt for this once strong and gentle man. When I was young I didn’t know he never had the opportunity to go past eighth grade, only that his wisdom was beyond compare and that he alone built the bridge that connected me forever to Mother Nature herself.

As I bent down to touch his cheek with a kiss, his eyes opened ever so slightly. Those familiar dark brown eyes gazed into mine and I heard him say, “Hello Sugar”, then he drifted back into his peaceful slumber never to awake again.

He is gone now but the afterglow of his light shines in me as I see the beauty of animals through his eyes and feel the mystical heartbeat of nature through his touch.

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Is it a Service Animal, Emotional Support Animal or a Psychiatric Service Animal?

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service hourse

These labels can be very confusing if you are not familiar with the jargon of disability world. They are not only quite different but are not treated equal under the law.  The definition of service animal was changed July 23, 2010 defining only dogs and miniature horses as a category for service animals. People are always surprised to see that miniature horses were approved as a service animal. While not common, they have earned a reputation as an alternative to traditional service dogs. They can be house broken, a requirement for service animals under the ADA and their life span of 30 years is a much longer working life span than dogs. Typically, people using dogs as service animals must find a new dog every 10 years as their service dog ages. For many reasons this can become an emotional trying experience. The miniature horse must be a docile, intelligent temperament even in the hectic urban environments just like the dogs are expected to be.

To be considered a service dog they are required to perform a “task” to qualify such as fetching a cell phone, opening or closing doors, taking garbage out, pull a wheel chair up an incline, etc. The task performed is based on the individual needs but they must perform one to qualify as a service dog.

Emotional support dogs assist people with mental impairments. They are not protected under the Americans with Disabilities Act. Needing glasses would be an impairment not able to see it all is the disability. This distinction is why a person using an emotional service dog is not protected under the ADA since the most important criteria is that the person has to have a disability according to the ADA definitions. However, there are provisions under the Fair Housing Act that allows them in HUD housing if proper paperwork is filed.

Psychiatric service dogs on the other hand can be taught to do tasks similar to mobility service dogs. Examples would be retrieving things dropped because on certain medication bending over would cause dizziness to the person, reminding or redirecting people with OCD to stop behaviors, alerting to smoke alarms, door bells, tornado warnings. They are a huge help for social phobias and much more so you can see how psychiatric service dogs would qualify because of the “task” they perform and the person’s status of disabled.

To clarify there is NO certification required by law. There are many organizations that are very good at training service dogs to accomplish tasks but it is not required. However keep in mind a service dog must act like a service dog. They should be socially trained to not only perform tasks but know their place in all situations so that’s the great benefit of the organization that knows their stuff and can instill that training in the service dog. An average training process for these dogs is typically 18 to 24 months, a huge investment of time and money.

If a service dog is not socially trained and barks and bites or growls or disturbs other people the business you are visiting can ask you to leave and not bring your dog in again and it would b their complete right to do so. These service animals’ open doors of freedom for people with disabilities that were once closed. They fill many roles such as companion, helper and unconditional love but they are also a tool when working and must follow regulations in order to have access to all the places a person wants to go. For more information visit the website http://www.swcil.org a nonprofit Center for Independent living and request an advocate to assist you with the current laws and compliance in your state.                                                                                                                                                                                                                                                                                                                                                                                                        .

Listen For The Little Bird

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To start off the beginning of this year I wanted to share my favorite poem from Carl Sandberg. Poetry is a personal contact with its author. When you read poetry you are taking the same breath, the same rhythm as the creator that wrote it. In this particular piece it is not only inspirational but if understood deeply, also ethereal. May this new year bring many soft and velvet days of introspection.

 Carl Sandburg

And it won’t help any, it won’t get us anywhere

it won’t wipe away what has been

nor hold off what is to be

if you hear me saying

love is a little white bird

and the flight of it so fast

you can’t see it

and you know it’s there

only by the faint whirr of its wings

and a hush song coming so low to your ears

you fear it might be silence

and you listen keen and you listen long

and you know it’s more than silence

for you get the hush song so lovely

it hurts and it cuts into your heart

and what you want is to give more than you get

and you’d like to write it but it can’t be written

and you’d like to sing it but you don’t dare try

because the little white bird sings it better than you can

so you listen and while you listen you pray

and one day it’s as though a great slow wind

had washed you clean and strong inside and out

and the little white bird’s hush song

is telling you nothing can harm you,

the days to come can weave in and weave out

and spin their fabrics and designs for you

and nothing can harm you–

unless you change yourself into a thing of harm

nothing can harm you.

 

I give you the little white bird–

and my thanks for you hearing me–

and my prayers for you, my deep silent prayers.

Carl Sandberg—

“little word, little white bird”

My Spiritual Retreat

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Roaring River State Park

One of my favorite places in the whole world is not exotic or even world-famous. It is a trout park by the name of “Roaring River” near Cassville Missouri. Pictures of it does not do it justice. Its beauty has to be touched and breathed in. It’s a sensory infusion of rushing tumbling ice clear water, trout bolting from the depths to gulp down a dragonfly and the sound of whipping trout lines. In the evening the campfire’s glow and soft voices of friends and families echo around the high valley walls as they laugh at their stories full of memories of long-ago and the adventures of the day. At dawn the smell of bacon and eggs frying in old cast-iron skillets permeate the air.

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The river seems surreal as the morning mist creates clouds that hover over it. The rainbow trout are hungry this time of day but everyone must wait for the whistle to blow that indicates fishing is open. It is this combination of family, friends and nature with its exquisite beauty that feeds my soul.

10 Things To Make Your Kitchen User Friendly

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I love to cook! But, I have difficulty keeping my balance because of neurological damage. It especially bothers me if I try to bend down to look into cabinets or do too much walking back and forth in the kitchen. So, I adapted my kitchen area to accommodate my limitations. I wanted to share some ideas that have worked very well for me. These changes would actually work well for anyone.

  • Add A Pantry

I bought these outdoor units from Walmart. They are intended for garage storage but they work perfectly in my kitchen. I relocated my pots, pans, baking sheets, etc. so that I did not have to stoop to the lower dark cabinets and dig these items out. They are neutral in color so they went with all of my decor. I actually bought three because I have one for baking and cooking supplies another for my pots and pans and one for food storage. They were around $77 each. I just bought one at a time.

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  • Add a small 4 drawer chest

I bought this same style and color in a four drawer chest to house my big utensils, foil, zip lock bags, plastic storage containers and other attachments I don’t use every day. Also found at Walmart for $59. Although my kitchen has a good amount of floor space it only had two small drawers for utensils and the drawers would stick. This little chest has drawers that slide out very smoothly and the drawers are very deep.

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  • Add a crate under your sink

I have a milk crate under my sink with all the cleaning supplies I use in the kitchen. I can easily slide it out to get what I want without getting on my hands and knees to find something in that dark space.

  • Refrigerator organization

I organize my refrigerator so that breakfast things are together, left overs are on their own shelf and heavy milk and juice containers are on the top shelf. This keeps me from stooping and pushing things around to find the butter hiding behind a big leftover dish that has to be moved out first before I can find it.

  • Utility cart

The utility cart can hold my heavy appliances like the KitchenAid mixer, the bread machine and food processor. Not only does it open up counter space but keeps me from lifting items that are too heavy. All I have to do is roll it over to the outlets and I’m in business. I found this one at Lowe’s.

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  • An office chair

I use an inexpensive armless office chair and wheel around to gather ingredients for recipes. It works great for going from pantry to refrigerator to the working areas. It also works great for cleaning out those low refrigerator shelves and for cleaning the oven.

  • The garbage bowl

I learned this little trick from watching “30 Minute Meals”’ on the Food Network channel. Using a garbage bowl sounds trivial but believe me saving your time and energy walking back and forth to the garbage 20 times during meal prep is well worth the effort!

  • A good spice rack

I bought a spice rack that fits flush against the wall and sits on my counter. It saves reaching and looking for spices I use the most and it keeps things in order. There’s nothing worse than trying to find a certain spice in a cupboard full of 50 or more that have fallen over or rolled to the back of a cabinet you can barely reach.

  • And finally the two things I could not live without

I could not function at all without my two sets of cheap kitchen scissors. I use them to open up packages boxes snack bags you name it. They are my extra set of hands. The second thing is the simple wooden clothespin. I use these to fasten snack bags, bread, brown sugar bags and anything else that needs a closure. They are cheap and easy to use and not near as frustrating as those little twist ties.

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Which Is More Life Limiting Diagnosis or Prognosis?

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Envision Empower Execute - Win

Diagnosis and prognosis are very different concepts based on different criteria. Diagnosis refers to identifying the nature or cause of the condition. Prognosis refers to the future of the condition based on previous case histories. People very often get these terms confused and link them together as a predetermined outcome of their injury or their illness. In other words, the prognosis is the likelihood of the person’s future with their condition based on other cases. It is a subjective not an objective conclusion but remember there are no two humans exactly alike physically, mentally, with beliefs or inner strength and ability. So really, how much credibility does that really give a prognosis?

In my long career as a disability advocate I’ve seen hundreds of people come for help as victims and helplessness because some doctor told them that they would never be able to do this or that and their future would be pretty bleak. Negative prognosis is more dangerous than the diagnosis itself because it fosters an attitude of giving up and giving in.

Why do doctors continue to make these negative diagnosis? I think there are two main reasons. One is that they are trained to look at facts based on previous outcomes and not to give patients “false hope” (how I hate those two words). Another reason is they are medically and scientifically trained and are not invested in transitioning their patients into the world after the hospital or diagnosis. In summary, they do not know the almost unlimited options living with disability.

They rely on a rehabilitation facility to do that but the rehabilitation staff is bound by doctor’s orders and his prognosis. Our whole medical system is based on specialists who are all under the control of the doctors. But guess who has the control over the doctors? You and only you. That’s right, you have the last say, you decide your own prognosis. You empower yourself by digging out the options, learning what is possible. You are a unique human with your own brand of determination and courage. Only you know what you’re capable of. Don’t let the medical field take away your self-determination by telling you what you can’t do.

The life journey is not about the destination but the process of every day and how you live that process is totally up to you. If you or someone you know needs a peer support or options in technology or just a place you can see people who have beat the odds and are living life on their own terms take a look at the website www.swcil.org it could possibly change your life. There is also a blog where you can ask questions and find resources.

Is Universal Design For You?

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universal home

Universal design is the design of products and environments that is usable by all people without the need for adaptations. Some people use the term “aging in place”. Owning a home is a huge investment but so many reach that goal only to find later it’s not user-friendly as they age and their physical limitations prevent them from using most of the features in the home they originally loved. In addition the need to remodel usually comes at a time when people are on fixed incomes and cannot afford it. Other events such as accidents or illnesses can make it difficult to remodel as money is flowing out to the medical field while on a drastic time limit.

The answer, of course, is to be proactive in design when you buy your home or remodel your existing one. The best time is while you are still working and can afford it a little at a time.

Some areas to consider are –

  • No step entry. No one needs to use stairs to get into a universal home or into the homes main rooms.
  • One story living. Places to eat, use the bathroom and sleep are all located on one level, which is barrier free.
  • Wide doorways that are 32 to 36 inches wide let wheelchairs pass through. They also make it easy to move big items in and out of the house.
  • Wide hallways. Hallways should be 36 to 42 inches wide. That way, everyone and everything moves more easily from room to room.
  • Open floor designs. Everyone feels less cramped. And people in wheelchairs have more space to turn as well as people using walkers.
  • Some universal features that could make it safer as you age or incur a disability are- 
  • Floors and bathtubs with nonstick slip surfaces help everyone stay on their feet. They’re not just for people who are frail. The same goes for handrails on steps and grab bars in the bathrooms.
  • Thresholds that are flush with the floor that could make it easy for a wheelchair to get through a doorway as well as walkers.
  • Good lighting helps people with poor vision. And it helps everyone else see better too.
  • Lever door handles and rocker light switches are great for people with poor hand strength. But others like them too. Try using these devices when your arms are full of packages. You’ll never go back to knobs or standard switches again.

As a society we are proactive in so many other areas like insurance, retirement savings, yearly wellness checks and we also need to be proactive in keeping our independence and freedom to stay comfortable in our own home by making these changes. Aging happens to all of us, it is inevitable, and by preparing for it we also prepare for any other physical changes that may come down the pike before retirement. Many people end up in nursing homes waiting on remodels to happen so they can go home. Don’t let this happen to you. There is much more you can provide that can make your house user-friendly to all ages and all people in your family.

For more information on Universal Design you can contact Southwest Center for Independent Living by visiting their website at www.swcil.org

Gypsy Girls

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Manchester-KOAFor 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 reality is that our situation could have happened to anyone that lives paycheck to paycheck struggling to stay above water then one illness, one lay off, one expensive repair and you find yourself in a whole other world.

We preserved by learning how to get by. If we didn’t have the resources to buy something we would do what we called “wing it” and that applied to everything, our poverty line existence, the almost name brand shoes, our thrift store clothes, our underwear dripping dry in the dog size bathroom, our wobble legged dining booth that converted into a bed at night and the electric heater dangling from the ceiling testament to our pioneer spirit, our baby sized sink, bare light bulb dolls kitchen, the bottom line basics-—everything rigged, second-hand, cut-off and recycled. Two single threads held the family tapestry together, love and hope.

Clothes, shoes and make-up were folded, stacked and contained so precisely that the Marine’s would have been impressed, of course they would have been impressed just by the fact that six of us lived comfortably in a 20 year old 17 foot travel trailer, for five years. My Mother taught me that what ever you do in life, do it the best you can. We shined, polished and scrubbed that old trailer until it squeaked. The pride in our hearts always outshone the reality. It was very little in the way of a home but there were many people worse off than we were and we learned from them as they passed through our lives at the campground.

There was a young couple from Georgia who came to the Gulfport area with two babies to work the oil rigs. Hurricane Bob had blown through four days after they arrived. No housing was available because what was left livable after the storm was quickly snatched up by insurance men and contractors. They spent their housing money on a large tent and a month’s worth of site rental. The rest of their savings went for a camp stove, pots and pans, diapers and a week’s worth of food. The husband picked up small storm clean up jobs but it only sustained them from week to week. They never had enough to put in their small coffee can for gas money home. They were desperate, ready to sell everything including their car for bus tickets back home. It reminded me of the helpless animals that get a limb caught in a trap and would chew it off for the privilege of freedom. Eventually they did sell everything, the car being the last to go right before we took them to the bus station.

Then there was the sweet elderly couple from Iowa who bought a brand new trailer so they could spend their retirement traveling and visiting the grandchildren. It took him five tries to back into the site pad with any semblance of being straight. He was grinning when he stepped out of the van saying “see Mama? I told you this would be easy.” She would give him a gesture that looked like she was swatting a fly and throw her head back and laugh. Every morning she would step out of the trailer looking like she just came from the beauty parlor and he would come from the shower house smelling like Listerine and Old Spice. She would invite the kids to play Rummy and he would try to snag them for a checker game. Everyone loved them. It was clear they were in love and had been for longer than most of us were old. They were planning on leaving on the weekend to start their retirement adventure, as they called it, by visiting some of their children in Texas. That Saturday morning the sweet silver haired farmer was knocking violently on our trailer door. As I opened it, his shaking hands were trying to calm his quivering lips as he said, “She’s dead, must have died in her sleep, I don’t know what to do.” I thought to myself as I hugged him, forty years of hard work, one week of retirement. The daughter that came and picked him up was the same one that called a month later to inform us that he had died of a heart attack. “I don’t understand”, my youngest daughter said, “what attacked his heart?” “Sorrow”, I said.

Rita and Billy were monthly campers like us; actually yearly campers would be more exact. Rita was a divorced Jewish woman from Columbus, Ohio and Billy was a beer drinking, bar fighting Cajun that used to make a living on the Louisiana oil rigs before his back was injured in a scuba diving accident. Rita had been married to a Pharmacists in Iowa for over twenty years and was used to the “good” life, golf clubs, social benefits, influential friends. She fell in love with Billy while visiting a friend in New Orleans. As Rita’s story goes, they were at a nightclub when a drunk starting harassing them, Billy walked over and punched the drunk out. Rita said she had never been fought over before and right then and there she felt lust for the first time in her life. He was so different from her first husband, so wild and unstable but he was passionate. Billy was like a drug that she took in increasing doses until she couldn’t live without the feeling she had when she was with him. So despite the horror of her friends and family she married him in a small fishing camp in St. Charles, Louisiana. Now five years later she still praises his attributes even though she has never seen him sober. She handled his settlement money from the oil rig accident like an accountant, saving every penny she could and taking his mental abuse when he wanted a few hundred to go on a binge with his friends. She would happily go about her day preparing delicious food and cleaning the trailer and paying the bills. She made sure she was dressed perfectly for those one or two hours he was not sleeping off a thirty pack . He was good to her when he was awake but he did not exist in a real world, only a co-dependent one. They both loved it. They had no regrets.

I learned a lot from Rita. I started to see myself in so many of her actions. Although my husband didn’t drink, the co-dependent relationship was still there. I too, had traded my independence in a moment of passion. I too, walked softly, waiting for a few moments of attention. Our lives were so different but so alike. She was my awakening, my yearning to want more for my children and myself.

There was also a couple that came down every winter for three months during the cold Michigan winter. Vern and Helen were both retired from twenty-year jobs. He had been a contractor and she a phone operator. Vern was still husky built even though he was in his seventies and Helen was energetic, always walking the half mile around the campground every morning. We had looked forward to them driving in around October every year for the past three years. This year there was something different. Vern had a hole from a Trac in his throat. He said he had cancer of the larynx and the doctor removed his voice box. He said he was trying to learn how to speak with a voice synthesizer, as he would press the long metal tube against his throat. The voice sounded just like what it came from, a synthesizer. It took awhile to understand what he was saying but soon the kids and I could understand just about everything he said. He wore red suspenders that he would snap in order to make the kids jump. He was a teaser and loved playing jokes on them. The kids loved him and so did I. His wife was the caretaker but encouraged him to be independent as much as possible. Sometimes he would get so frustrated he would throw the long metal tube to the ground, shake his head and go back in the trailer. We all knew this was a difficult adjustment so we teased him back when he was in a stronger mood and pretended we didn’t even see the hole in his throat or the synthesizer. But the reality was we did and it was a very good lesson for us all.

There was the couple that came in every Friday night in an old brown pick up with a home made camper on the back, tires bald as eggs and the driver side front fender was tied on with wire that allowed it to flap in time with the rod knocking under the hood. The man was much younger than the woman. He had dark dirty hair and his face was always unshaven, he usually wore a faded black T-shirt with the sleeves cut off and a design on the front that said Hank Williams Tour 1985, a baseball cap with a rebel flag embroidered on the front. The woman had on bib overalls with one strap missing and a cotton blouse underneath. She was thin with long hair and from behind looked to be a lot younger than her face. They stayed to themselves. They were weathered people, wind burned and weary from heading straight into life’s storms. After they parked they would make a fire and start drinking until they fell asleep on blankets on the ground. I never saw them eat anything other than tuna with saltines and cheap pork and beans straight out of the can. By Monday morning they would be gone just to return the next Friday night. They had long forgotten how to set their sails into the wind. They didn’t realize they were captains of their own ships. So, like so many people we saw there, life happened to them, they did not happen to life.

There were so many more lives that weaved in and out of our lives during those years. And, believe it or not, our life got way worse before it got better. But, through it all we never lost our sense of humor, our compassion for others or our family loyalty. Eventually we clawed our way back up and never returned to living in a RV again. We not only returned to our previous life but surpassed it by leaps and bounds.
We will never forget how easily and quickly it is to lose it all. We will also never forget that together we can survive anything. When my grandchildren ask their mothers about what their childhood was like they respond “It was great, we were Gypsy Girls!