advoccy

Humanity’s Key

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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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Change

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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 25 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 someone who is 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.

Grace Within Courage

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The following essay was not written by me. it was written by my 16 year old granddaughter whose strength and depth of character is way beyond her years. It has an important message in it that inspires those who have had to deal with overwhelming trauma and survived. Hope you enjoy.

“Raven I regret to tell you this, but you have Leukemia” These words shattered my world and turned it upside down. All I remember is my mom jumping in front of the doctor looking me in the eyes and telling me “Raven Listen to me You can beat this all you have to do is keep a good attitude!” my doctor tried to interrupt her but she put her hand up and said firmly that she needed to talk to her daughter. He smiled and walk out. My mom then looked back at me and kept telling me that as long as I didn’t give up I would make it through. She said its 10% meds 90% attitude, and that sunk in because I still remember it like it was yesterday. And that’s how I found out I had Cancer

Next thing I know I’m getting sent down to Memphis, Tennessee to go to a special hospital for kids in my position. My position? All I know is that I had to pack up with a duffle bag of clothes leave the only place I’ve ever known and be shipped off without no more than 5 hours’ notice because the ambulance was already on its way. Why me? I know I’ve had bad luck but this is ridiculous. I look out the windows in the ambulance and I see oak trees and wheat fields that are just starting to wither away. Is that going to be me soon? Withering away as the months or weeks go by? I guess we’ll find out in about 4 hours huh?

39787 that’s my new name I guess. That’s what everyone calls me. “Is that 39787?” “Is 39787 hungry?” “39787 is not in her room. Where is she?” This… this 5 digit number is my new identity. In fact, I got so sick and tired of it that, I snuck out of my room just so I could get away from it all. But then everything erupted in chaos. All I was doing was sneaking down to the kitchen to read in peace and quiet. It was bad enough I had to drag around this pole of fluids that was about twice my size. But now i can’t even leave my room without getting lectured about fall risks and white blood cells. I was just trying to get out of this medically induced prison. You’d think they would have some consideration but I guess when you see it every day you get immune to it. I just hope it gets easier because I don’t know if I can do this for….HEY HOW LONG DO I HAVE TO DO THIS FOR?!?!?!?

“No! I will not stay here for 4 months I got plans!!! I got school!! I can’t just up and leave my friends! My FAMILY!! No I won’t do it!!!” They can’t expect me to do this. They can’t make me! Can they?? “We don’t have a choice sweetheart” mom said with sorrow in her eyes. It was then that I realized they were not only taking me from my life but taking her from hers as well.

Then… came the side effects. After getting a Rubber ball attached to my heart, came the meds and the consequences. That had to be the worst part. The Chemo they give you messes with your energy and cells, so to counteract them they gave me steroids.

Yes. I did say steroids. And those steroids came with a nasty price. A price I wasn’t aware I had to pay.

If you have never heard of avascular necrosis, you would not be the only one. Avascular Necrosis is a deterioration of the bones and/or Joints. If you catch it in time they can be saved. for example if you catch it at 30% then you can get a surgery where they place a metal rod in your bone/joint and crush it up to get blood flow through there. I have had this on my knees and ankles, even though they were at 90% my hips and shoulders were too far gone to save, so for those they had to replace them. God It makes me feel like I’m 80 with a hip and shoulder replacement.

Anyways now I have had 6 surgeries in/on my nose, port (rubber ball), shoulder, hip, knees, and ankles. That doesn’t even count the spinal taps. Which for those of you who don’t know are when they stick a needle in the base of your spine and take out fluids or put in chemo. And when it comes to spinal taps I’ve had over….100. But those don’t bother me except for the fact that when you get knocked out for a spinal tap you can’t eat for 7 hours before.

Now there are time that I look back and laugh, which I know does not seem right. And I’m sure you are asking yourself “how can you laugh at something like that?” and I have a way to show you. So I’m going to end this personal narrative on a positive note with a funny story.

I was about halfway through treatment when I had to do a spinal tap on a very busy day for the hospital. So just like any other hospital I had to wait in the waiting room. (Now let me remind you that it was about 2 o’clock in the afternoon and I had not eaten since midnight the night before so I was hungry) I got up to go ask the nurse how much longer we had to wait and she was eating a bag of spicy Cheetos and I wouldn’t have minded if she wasn’t so mean about it. “Excuse me miss?” she looked up with a glare in her eye and said “what?” I didn’t know what to think but I got a little irritated but not enough to say something so I just smiled and asked “would you happen to know how much longer till they can get me back in the operating room?” (now before I go any further it won’t make sense if I don’t tell you they had huge aquariums in the waiting room with little clown fish in them) so she said “ Do I look like I would know?!?” by this time I was ticked off so again I smiled and said “well you look like you would at least know where I can get some tartar sauce” she was confused and said in a tone I rather did not like “ why would you need tartar sauce? I know for a fact you aren’t allowed to eat” I couldn’t help myself I smiled evilly and said “cause I’m about to go eat Nemo. And if you’d rather I didn’t I suggest you Talk to the doctor and see how long till they can get me back!” She looked horrified to say the least. But hey it worked I got called back 2 mins later.

And that’s my story. I would to add that I am 4 months away from being done with chemotherapy. um let me think I believe I covered everything. Oh… If you have a question about any of this just feel free to ask me. I’d rather you know than guess. So I guess the moral of my story is you can find humor in almost anything if you look hard enough…

American Dream or American Scheme?

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Buying a home is the American dream but for many not the American opportunity. Crisis like unexpected job layoffs, illnesses, divorce and other “life happens” experiences can leave you with a credit score so low banks laugh when they see it. But, it’s your dream anyway and you’re tired of paying rent which won’t secure your future. You spot a sign in the yard of a decent looking house with “Rent to Own” bad credit ok and an opportunity has come knocking on your door. Sometimes this scenario has a happy ending but, more often than not, it turns into just another “life happens” crisis.

The reason is communication from the buyer and the seller. Here’s a red flag right at the beginning of negations, there is no standard rent-to-own contract. Each owner can, and will, include or delete options for their advantage. The wording can be complex and is designed basically to meet the state regulations you live in but the owner can adapt it beyond that. For instance you need assurance in the contract that your rent money goes toward taxes, mortgage insurance and home owners insurance so three years down the road it’s not put in foreclosure. Look at the last appraisal and when the last inspection was done. Make it very clear in the contract who is responsible for what repairs.

Also, at the end of the contract (3 to 5 years) you must secure financing on your own, up to this point the portion of funds the landlord agreed to put toward your home is basically to cover the down payment. Unless something has been worked out with the seller or there’s a clause protecting you in the contract you’ve just lost your investment and probably your home. There are success stories that have worked out well but make sure you are making the best informed choice possible. Here is a list of pros and cons to think about.

PROS

  • This transaction gives the buyer (the advantage) to lock in the price in advance, but if the home value goes down, he can choose to renegotiate the deal or move on.
  • Buyers could also get the upper hand — and sellers, the disadvantage — if the home’s value rises more than expected. Say the house is currently valued at $200,000 and the buyer and seller agree to a purchase price of $230,000 in three years. If the home ends up worth $250,000 in three years, the seller loses that extra $20,000.
  • An advantage of a rent-to-own contract for the buyer is that she has additional time to save for a down payment. A buyer also gets additional time to clean up her credit history if she has negative marks due to collections or late payments.
  • A rent-to-own home allows a buyer to try the area before he purchases a home. He gets a feel for the neighborhood, schools and overall environment, including crime rates. A buyer also does not have to wait weeks or months to move in while the inspection, appraisal and documents are gathered. He typically moves in as soon as he pays the upfront fee and lease payment.

CONS

  • Buyers lose their investment if they fall behind in payments. If a buyer pays $1,200 each month for a home, with $400 of the payment each month to go towards the down payment; they have accumulated $14,400 at the end of three years, as an example. If a buyer decides not to purchase the home, falls behind on payments or is evicted, he loses the investment.
  • A buyer loses out on their investment if he cannot secure financing at the end of the contract term. Unless he works something out with the seller or has a clause in the original agreement, he risks losing out on any fees or extra rent paid during the course of the contract.
  • Not all the money you pay in rent will go toward the down payment. Owners are the lenders and they are the ones who decide how much of your rent payments are credited toward the down payment and closing costs. Most owner/lenders will only allow a credit for an amount paid above the market rate for local rentals to be held for eventual home buying costs.
  • If you decide not to buy the house at the end of the lease, you probably won’t get a refund. That money is usually only returned to you when you buy the property
  • If the house is a “fixer upper” you may not have the extra money for material and labor to maintain it. Big items like roofs, foundations and integrity of the structure, if not fixed, could cause the home insurance to cancel for the owner. In addition because you are not the legal owner yet you cannot take advantage of the many organizations that could help with these problems at low or no cost. Even if the owner gives them permission to make repairs they will bill him because his resources will not qualify him for the assistance.
  • Watch out for “slum lords” who want the rent money but who do not want to spend the money to maintain their properties as required by legal guidelines. If you are buying it then the burden becomes yours. They can evict and resell to the next victim over and over.

Going It Alone

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Single mothers are tough independent multi-task women. I know I was one. But these attributes are hard won and not something you’re just born with. They are earned by falling to your knees a hundred times in despair then pulling yourself back up again. There is nothing to prepare you for taking on the job of both parents. No training before or during this journey.

Although my kids were my joy and the very motivation to put one step in front of the other I would find myself yearning at times for a partner to share my life with. My four children and my job took up most of every day and night. That rare moment when at last I fell onto the couch before bed my heart would weep for stronger arms than mine to hug me.

Unbelievably in today’s modern world the barriers single moms face are almost as many as when I was raising my children over 20 years ago. Most employers do not consider or accommodate situations like sick children, snow days at school, school bus schedules or special events a parent is expected to attend. Then there is the teachers who don’t understand why your child’s 15 pages of nightly homework is not finished or why they are not finishing their lunch in the cafeteria. And there’s the school nurse who reported you for not signing the vaccination release even though your child never brought it home.

It’s like we still live in a1950 society of two parent families with little tract homes and wives stayed home and tended to the children. Everyone knows better but the rules and expectations have not changed. Single moms have not only replaced the other parent, they have replaced themselves. Daycare is not only hard to find but can cost as much as 20% of salary for one child.

In spite of it all it’s much better for the children and yourself to live in a more peaceful home without constant relationship conflict. The kids raised in a single parent have a different kind of role model in a woman who is strong, exhibits self-worth and is pro-active in solving problems by planning ahead. They become independent adults from the early years of necessity when I ran late or had meetings. My kids learned to cook simple things and side dishes as early as 9 years old. I lived by “notes” left everywhere like turn crockpot on at 11:00, stay in the house until I get home, change into play clothes etc. They didn’t think twice about taking care of each other and that bond remains strong to this day. I was lucky in that my kids were spread enough in age to have older ones watch out for younger ones.

Yes, it was a challenge, a big one, but every single little heart was worth it. When the empty nest finally came it was so lonely I walked around in a fog for months until one day I found myself again, my 18 year old self before it all began. I drug her out from the back of my heart where I had placed her so long ago and began to reach for those dreams again before life happened. Only now I have these beautiful best friends to share it with, my children.

Acrimony

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Anger

Why, why, why are so many government workers rude? I’ve pondered this question all my life but especially during my 22 years as a disability advocate. I experienced people who conquered obstacles so difficult that the impossibility of it was stunning. They came in with pride not regrets of their condition because they had beat the prognosis. Then these same beautiful souls would get humiliated, ignored and embarrassed by some worker at social security, Medicaid or food stamp office as if they were slackers and loafers instead of incredibility courageous and independent. Why would anyone want to disenfranchise another?

There is no satisfactory avenue to complain about staff. Their jobs are very secure as they are protected under the Federal Government Employee’s Union. It is almost impossible to get fired as long as they perform the essential functions of the job which is correct and timely paperwork and does not include politeness. Performance reviews are based on job duties alone and merely being rude to a citizen needing help apparently doesn’t qualify as dereliction of duty. Essentially you’re in for life unless you want to quit.

There is absolutely no incentive to treat people like human beings. In the private business sector these individuals would not last a day. You wonder if these civil workers are products of lower upbringing and enjoy their temporary power over someone who doesn’t understand the overly complicated system.

There needs to be some drastic changes to a system that encourages efficiency over empathy. The government needs to hold their staff to a higher standard and eliminate the “us vs them” mentality. There are many good staff in these government offices also but they are overshadowed by the ugliness of their co-workers and suffer the same reputation they don’t deserve.

A few things you can do are let the supervisor know how you appreciated a good staff. Complaints never go anywhere but compliments do. For bad situations get in touch with your U, S, Congressmen’s office. Helping constituents cut through red tape is the kind of stuff that makes happy voters.

“Rudeness is the weak man’s imitation of strength.” ― Eric Hoffer, The Passionate State of Mind: And Other Aphorisms

Social Movements – Good or Bad?

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Social movements are the cornerstone of the American freedom of speech. Like tiny rebellions they are everywhere and the number and scope keeps growing and expanding. Social movements are a major vehicle for ordinary people’s participation in public politics. This political or cultural conflict is formed from a shared collective identity. Some of the more well-known movements are civil rights, feminist, disability, anti-war, Ku Klux Klan, Labor, environmental, Christian fundamentalist and a list of at least a hundred more most of us never heard of. Whether you agree with a movements agenda or not it is a groups right to protest and if successful, bring about social change.

I’ve belonged to a few briefly throughout my life but found myself less and less active because I eventually found myself in conflict with the movement’s conduct more often than with the barriers preventing social change. Social influence can be a powerful tool used to create conformity. It can be used constructively or destructively depending on the agenda of the dominate members. As humans we crave to belong, to be part of something and to fit in. How far we are willing to adjust in order to gain acceptance and avoid rejection depends on our level of self-confidence and strength of our self-identity. Conformity is the engine of “movements” like the Civil Rights Movement or the Disability Movement. By color or disability you are automatically accepted but may not necessarily agree with every concept or ideal that comes from the groupthink meetings forming them.

Groups base their success in the advocacy arena on projecting a united front. Although the discrimination barriers they are fighting to remove may never have happened to you there is a feeling of guilt if you don’t join and support the movement. The same person who belongs, however, usually acts, dresses and speaks differently at work or church or around gatherings that include non-disabled or Caucasian peers. It’s that compelling need to be accepted in our surroundings that pushes aside the true identity of most people. Although well intended most of these groups demand unquestioned allegiance and discourage individual thinking. Conformity in purpose, conformity in thinking, conformity in actions.

Even when given the opportunity to voice their opinion in a groupthink meeting most members would rather stay silent than be ridiculed by the dominate members. This lack of speaking up is brought on by a member or members so overbearing and intolerant of others opinion that intimidation rules the meeting. The consequence is that the group is weakened by members who do not have full buy-in of the purpose they are fighting for. These disenfranchised members speak differently when alone but are paralyzed by fear of rejection to speak up in the group.

This kind of intolerant atmosphere can easily be used destructively to incite members to action like hunger strikes, property damage or even riots. Those who are not comfortable with conflict get swept along regardless because of the need to impress the others. To them it’s not about the purpose as much as it’s about performing to the expectations of others. Some “movements” have made much needed social reform and have been very successful in building cohesiveness among their followers. However, I’m very careful when participating in any movement and observe if there are dominate leaders who do not encourage others ideas and questions. If I see it exists, I’m out of there.