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.
What is a non-profit exactly? A nonprofit organization (NPO, also known as a non-business entity) is an organization that uses its surplus revenues to further achieve its purpose or mission, rather than distributing its surplus income to the organization’s directors as profit or dividends. They have a tax exempt status granted by the Internal Revenue Service after conditions are met such as purpose, limitations on spending and external safeguards.
The main purpose of a nonprofit is to serve the needs of the communities they have indicated in their application. They are not “agencies” or “businesses” they are private as opposed to governmental, self-governing, voluntary and of public benefit. In the United States there are three main economic sectors that serve the citizens “wants” and “needs”. These are the government, the for-profits and the nonprofits. For- profits supply our “wants” based on supply and demand. These profits are based on delivering…
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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 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!
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.
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 to settle down to a warm home with a picket fence with children and a smattering of dogs and cats. I yearned for stability because it felt safe and reassuring. However, it didn’t put demands on me to take risks or to explore who I really was underneath the persona of the perfect wife, mom, daughter etc. Then little changes began to happen like the first daughter and the second and the third. Then a tsunami of a change occurred in the form of a divorce.
This change brought me to my knees and forced me to reach way down into a place of strength and courage I did not know I possessed. But I found out I did possess this power and it was my first inkling of who I was and what I might be capable of. Change became a normal part of my life after that. Struggling, surviving, always looking for the light at the end of the tunnel taking every opportunity offered to create what I lost. We travelled like gypsies over more than a dozen states looking for stability but change was always right behind us as I was trying to run from my heart pain.
Then in Florida I got sick, really sick and almost died. The illness left me with many disabilities. My youngest daughter was diagnosed with Hodgkin’s during the time I was in a coma. We all made it through, lucky to be alive, trying to adjust to the biggest life change yet. There were five of us now with the addition of a beautiful son six years ago and I was in charge of their lives regardless of my new disabilities. By now I was a fighter and a survivor so I was determined to fulfill whatever mission God saved me for.
After a year learning to walk and drive again and my daughter was back home and in remission, the kids and I moved to the Midwest to be near my family. There I found what I was saved for when I took a job as a disability advocate for a civil rights organization. This was a perfect platform in which I could redirect my anger and survival skills to assist people with disabilities to thrive and become independent in a society bound and determined to warehouse them. These were my people and I instantly knew I had a responsibility to play it forward.
I just retired after 26 years and if that sounds like I finally found what I lost so long ago with the divorce you would be wrong. During those years the changes kept coming with challenges, deaths of loved ones, raising teenagers, moving residences constantly to adjust to new developments good and bad. I know now that what I forever tried to replace wasn’t mine anyway but rather a springboard for me to jump from in order to explore and use the essence of who I really am in this life.
I am now embarking on a new adventure with the same mission of reaching out to humanity only on my terms. It is a partnership with others who are just as dedicated to change society’s perception of people with disabilities as I am. Change has become my friend and although I can finally relax with the children grown and a successful career put to rest I welcome change when it comes for the opportunity it is to grow spiritually and intellectually. Managing it becomes an expanding drill but the way we embrace, oh yes, the way we embrace it, defines our future and ourselves.
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, LinkedIn and Pinterest. Through these sites individuals can make new friends, build business connections or simply extend their personal base. It is a great way to share tips and ideas also. People can learn with ease and gather information about cooking, crafts, gardening and a variety of hobbies using Pinterest for example. There are also social network groups that act as a huge and diverse peer systems like our own “Common Threads Network Group” sponsored by “Independence 4 Ever”, and the much needed information and resources for people with rare diseases, advice on toxic relationships, child care and caregiving for the elderly to mention a few.
However, when you are using any social media platform, take responsibility for your own safety and never join a group just because it is trendy or all your friends are doing it. In evaluating the advantages and disadvantages of social networking, it’s best to err on the side of caution and protect your privacy. Be careful with what you post and treat others as if you were in a face-to-face situation.
Some of the cons of social networking is in how we try to use the shortest words and sentences possible. It stymies our ability to express clearly our opinions. Being able set forth our own profound thoughts is paramount to being understood. Some networking sites limit the characters to 140 creating a short hand version of what we intended.
We can over use social media to the point of forgetting to live in the moment. Constant updates whenever we do anything and taking hundreds of pictures of every event or moment for posting prevents us from savoring those memories we are attempting to preserve. Although we actually experienced them we are doomed to living them through the social media page. We need to start looking up and not down into our phones. I am just as guilty as everyone else wanting to share those celebrations but eventually the time will get absorbed and we never actually “felt” the experience first-hand.
So, for all the potential risks in social networking it is still an informative resource for those who learn to balance their time using it. Like a gun it is not dangerous itself but rather a tool to use for good or evil. The user makes that call.
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.