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…
I have always been curious about subliminal messages and hypnosis. It seems like they would be the same thing but I found they are not. Both are subliminal messages that communicate with the subconscious mind but in different ways. The brain area activated by the subliminal messages is shown to be the primary visual cortex, a part that is one of the earliest to get information from the retina. Scientist say subliminal messages do leave a mark on the brain. Using brain scanners, they found we often record images we are not even aware of having seen. Marketers in the United States have been aware and used this to their advantage for decades. Subliminal advertising is banned in the U.K. but still legal in America. However it can be used successfully to retrain your thinking with positive results.
Hypnosis is a technique that is also used to communicate with the subconscious mind but it is more active than subliminal messages. You are aware of what is being said as well as your surroundings. Hypnosis places you in a state of deep relaxation making it easier for your subconscious mind to accept the suggestions. Hypnosis is a process by which someone becomes less aware of conscious thought and inhibition, and more open to suggestion. Changes in the brain’s neural activity can alter the subject’s perceptions and emotions, enabling them to focus their thoughts and filter out distractions. One key area involved in such altered states includes the frontal lobe, which accounts for a large portion of the brain’s mass and is responsible for a person’s personality, emotions and long-term memory. Changing the brain’s frontal lobe function in turn alters a person’s subjective experience of reality, cognitive processes shift and elective actions occur without conscious volition.
Other areas of the brain that are involved with altered state include: the parietal lobe, which can distort the subject’s perception of space and time; the thalamus, which can induce the feeling in a subject that they’re ‘in a world of their own’; and the reticular formation, which receives sensory information from the outside world and determines what is important and what’s not, so as to prevent us from suffering sensory overload. I found it interesting that people who have the ability to become completely engrossed in daydreams or music are more likely to respond to hypnosis than those who cannot. You can even practice self-hypnosis. There are several free websites with instructions. It’s basically visualization mixed with meditation or you can get CD’s from the library that will walk you through.
Both are incredible tools that help you achieve your goals, dreams, and utmost desires. It’s really a matter of preference. Subliminal audios can be listened to at any time or any place, whereas hypnosis audios really need to be listened to while in a safe location due to the fact that you become deeply relaxed. Both allow you to change your deepest thoughts and beliefs helping you to accomplish great success. They help you in making tremendous changes within yourself and your life and they don’t have to cost a thing.
I’ve always been a list maker and a note taker. This practice was not because I was always an efficient person, far from it. I raised four children as a single mom and either worked two jobs or one and double shifts. Without lists and notes my life would have been more chaotic than it already was. There was business meetings, new policy’s to learn, teachers meetings, event dates, birthdays, grocery shopping and on and on.
After the kids grew up and moved out I still found myself making lists and taking notes. I just never considered doing it any other way. I’m a big believer in technology and use it all the time, however, when I attempted to use my phone or tablet memo app’s or my laptop software I lost control of my organization and had to keep looking back at the memos so I wouldn’t forget. Seemed like I couldn’t keep anything in my thoughts. That made me curious why and how memory works in the brain so I did some research and found some interesting facts. Our brain uses two different types of cognitive processing when doing typing and hand writing. When taking notes on your laptop you tend to type quickly and almost every word you hear without processing the meaning or prioritizing the points you want to remember. When you type it’s mainly mindless transcribing and doesn’t require much brain activity.
When you are hand writing notes and lists it’s too time consuming to write down every word. You listen then filter out the excess and keep the key points. This selection of information engages your brain to process and comprehend. Since you “listen” with a different part of your brain than you “write” with, digesting and evaluating what you hear and writing it by hand, builds a link between the different parts of your brain and reinforces memory. You are stimulating a collection of cells in the base of your brain called reticular activating system which is the brains filter for information for what you are focusing on. That’s why when you hand write a shopping list you can usually remember most all the items without looking at it until almost time to check out but if you transcribe it on your phone you’re constantly checking it. This “link” allows your brain to place the information in long term memory rather than short term.
These facts make sense as to why hand writing is still the best way to remember notes and lists because of the way the brain processes. I never knew that way back then, I just grabbed the first empty envelope or scrap of paper and organized my life as well as I could. I love technology and use it every day but sticky notes are still my best friend. http://www.independence4ever.org
Hello? I think I’ve been disconnected!
What’s the future of landlines I wonder? I’m old enough to remember rotary dials in my elementary years and prided my ability to remember all my family and friends phone numbers. The sound of the ring was an annoying screech that you sprinted to answer because it automatically kicked off a fight or flight response in your body until you did. By the time it’s slow return on the rotary wheel for each and every number and finally connection you could make three cell phone calls and answer the door at the same time. But there was something comforting about holding that heavy handset spooned against your neck. Interruptions were taboo in polite society except for kids too young to ground them if they did. And of course the ability to slam the receiver down to show them you were fed up. That’s a whole piece of body language gone now. The red end button just doesn’t convey the same emotion.
There was no voice mail and no answering machines yet so if your sister was on the home phone with her boyfriend and you were languishing in the nurse’s office throwing up you just had to wait. That exasperating busy beep interrupted many opportunities to join friends going swimming or shopping too.
By the time I started high school the push button phones came out and in colors. You could also order one that actually fit on a wall with a 6’ cord. We bought one in Harvest Gold for the kitchen wall. My friends were pretty impressed. We had two phones now but you could only use one at a time. I was lucky because my Dad was a house painter who used the phone for business so we had a private line. Although my calls were timed by my parents at least I didn’t have to deal with the dreaded party line like my friends.
A few years later they came out with “princess” phones that I fell in love with and that my dad said he would never use if it was the last phone working in the house. One of the problems with it though was the handset was heavier than the base so it was always in danger of being drug off the nightstand. Regardless, it was high fashion and made you want to sit up straight and cross your legs to talk.
Landlines made you want to stay at home to wait for those important calls like boyfriends and the latest gossip. The only time I drifted from it was to join the people I was waiting to hear from or a close neighbor. I could hear our phone ring two houses away, jump an evergreen hedge, slide into the kitchen and answer it before the third ring. The phone was every bit as addictive as cell phones are today. We were just more confined so the general public did not see people walking around on phones like today.
It was only 15 years ago that I got my first cell phone and only 5 years ago my first “smart” phone. I love the freedom to be available anywhere I go and I hate the freedom of being available. At my age if I turn it off every kid I have would be hunting me down thinking the worse. But, since I can’t jump those hedges and do nothing near sliding into the kitchen anymore I’m happy it’s always in a room with me. I guess evidently even businesses will stop using landlines and trade off to better technology. Will all the telephone poles come down replaced with more cell phone towers?
I’m just pondering though if my great grandchildren will even know what that box with glass is that Superman changes his outfit in.
Seniors traditionally are uncomfortable with change. They resent products and services disappearing and morphing into newer versions or eliminated altogether. For this group it also comes at a time when their synapses might not fire as quickly, memory is becoming harder to retain and even focus takes more effort. The Baby Boomers have been using technology for the last 30 years but did not grow up with it so learning curves are difficult the new improved is relentless. Many of us didn’t even have TV’s during our early elementary school years. Our learning curves involved how to work physical things like bicycles, swimming the breast stroke, skating, sports or creative arts.
Life moves onward so fast now. Like being on a really fast merry-go-round things past by in a blur but as it slows down periodically you begin to recognize the landscape and all of a sudden you notice things are missing since the last time you slowed down enough to notice. There are no pay phones, big blue mail boxes sitting on corners, VHS rental stores, paper maps or full service gas stations to mention a few and on their way out is land lines, CD’s, music stores, small bookstores, classified ads, cameras that use film, wrist watches, yellow pages and DVD players.
There are many I did not get around to mentioning that have already been phased out and much more in the process right now. However, there is an upside to this ever moving, ever changing, momentum of progress. New technology has and will continue to open doors of freedom for all ages. The ability to multi task well into the golden years is made possible by cell phones, web search options and wireless design. Being older or disabled is no longer confining because of the safety of cell phones to stay in contact. As they say “knowledge is power” and web research gives you unlimited power. Entertainment is enjoyed through internet TV which can stream movies as well as offer closed captioning, hearing enhancement and visual settings for low vision.
Social media sites enable seniors to keep in touch with family no matter how distant and web cam opens yet more doors. In my opinion the time spent over coming frustration and fear in order to learn new technology is well worth it. It will literally set you free to enjoy life independently and on your own terms. If you want to age in place be sure to put cutting edge technology in that place. http://www.independence4ever.org
In 1989 my life changed forever. I did not realize yet, as I awoke from a coma, that I would never physically function the same again. I did regain walking with the help of adaptive aids but remained weak from nerve and muscle damage which remains. After I was home recovering I wrote the musings below but I have since learned hindsight is worthless except for beautiful memories. My life turned out to be wonderful with joy and successes I could have never imagined possible.
Every once in while I drag this prose out because it now makes me smile that I have come so far in my ability to appreciate life with no regrets.
If I would have known,
I would have ran one more time
I would have raced until the wind took my hair,
Until the landscape was but a blur
Until my muscles were used up with joy and exhaustion
My heart beat thundering in my ear
My skin glistening with sweat
My eyes burning from salt
I would have jumped with abandon
Every stump, every fence,
every moss covered rock
I would have hiked a lonely trail
And walked after dinner until sunset sent me home
If I had known,
I would have ran one more time.
There are so many changes communities could do to be more pro-active in protecting their ecosystems. Some communities have started this process slowly. Everyone understands it should be a priority but getting the money to peruse it is always difficult. I began to do some research on what some options are and things a few cities are doing now. In examining large and mid-size urban cities I have located environmental areas that are at risk of becoming damaged beyond repair. These risk areas are biological habitats, clean air and water pollution. A city’s rapid growth and continuing urban sprawl is currently endangering indigenous plants and animals. However I feel with implementation of the recommendations I have found any city will see a substantial improvement on their ecosystem and a lighter footprint on the environment as a whole.
Regarding air quality – City buses and large construction equipment owned by the Department of Transportation need upgrading to newer engines or equipped with emission control devices such as idle reduction technology. Cross country locomotives going through communities can also be retrofitted to cut down on the mission pollution. This is a big concern since a major train yard often sits right in the middle of a highly populated area. Idling diesel engines not only omit harmful pollutants but waste fuel and cause engines to wear.
Promote transportation choices – Cars as transportation options are slow, dangerous and frustrating especially when you’re in the middle of a big city gridlock. They are also a huge user of oil. Taxpayers cover the load of road maintenance and constructions of new roads. Moving people by bus, train, bicycles or on foot is more efficient and kinder to the environment. These options are under used because communities are not actively diverting funds like the gas tax from road construction to Greenway construction. If it’s inconvenient most people will not use it. Working with your local park board to design and maintain a bicycle pedestrian trails that crisscrosses the city will encourage people to use them. It is also recommended that City Council consider a fund or pursue grants as a way to keep these trails and public transit terminals safe such as well lighted crosswalks and patrols coordinated by local police. City buses can be fitted with bike racks on the front so riders can take their bike in inclement weather. Employers could offer to pay for bus rides to work and create a more flexible schedule coinciding with the bus schedules. In Manila the Philippines, the Asian Bank is providing $300 million toward a ground breaking project that gives its people a lease to own E – trike. This kind of concept would be a great solution on a smaller scale for the various universities in your city. Parking is always an issue and with 1000+ students using cars it would make a huge difference in greenhouse gases.
Establishing green spaces and urban forestry – Urban forestry and green spaces should be developed and maintained wherever possible to promote a diverse and healthy environment. You could start a committee of interested residents to create an action plan for potential land preservation. They could also develop partnerships with local nonprofits who are engaged in land conservation like the local Park Board or conservation department. Green spaces are important to our health, mentally and ecologically. These green spaces could be intermingled with the Greenway bicycle and pedestrian trails to encourage people to use this as a form of transport.
Fuel-efficient cars – Everyone knows fuel-efficient cars get much better gas mileage but there are also other important environmental advantages such as releasing fewer emissions and carbon dioxide is cut in half. Electric cars are the most fuel-efficient. There are no tailpipes so no omissions can escape. Their motors convert 75% of the chemical energy from the batteries to power the wheels. You can compare that to conventional gasoline powered engines which produce only 20% of the energy stored in gasoline. Carpooling Promoting carpooling is another recommendation that could move your city toward a more eco-friendly community. Studies have shown that the average American car emits 23,600 pounds of CO2 a year. If four people shared rides in one car the emission savings would be three times that amount. The riders are also saving on gas, wear and tear on their car as well as maintenance. Encouraging large manufacturing companies to promote carpooling with their employees could help implement this system. They could offer incentives such as prime parking spaces.
These recommendations are good in theory but difficult to implement. Retrofitting and upgrading the city’s public transportation and heavy machinery will take additional funds or diverting funds from other necessary projects. Urban forestry and green spaces like creating bicycle pedestrian trails also take funds to complete and a lot a promotion to get community buy-in so they will be used. Carpooling has to work on many levels like similar work schedules, riders need to be compatible, the sacrifice of independence of doing errands on the way home and the number of riders needs to stay consistent. And promoting fuel-efficient cars would need funds for marketing plan to justify the initial cost which is more than traditional gas engines. In addition electric cars have no infrastructure built in to refuel electricity across the country yet. Nothing worth having is usually easy but in this case well worth the effort.
It will be a slow progress to turn the environment back to a safe and sustainable world but in the process we are saving ourselves. A look into 50 years from now could see big urban cities decaying from the inside out if a pro-active stance to save their ecosystems were never taken. We need to keep that in mind when voting for and supporting these positive changes. It’s our own humanity we are saving.
Why is self-advocacy so under used in our society? I think because it gets confused between aggressiveness and assertiveness. This confusion is just as misunderstood by the business you are dealing with (usually more so) than the individual trying to assert their rights. In the process citizens get pushed down, intimidated and managed into silence.
Not all is lost however because there is a weapon you can use and it is the absolute key to your success. That weapon is knowledge of the guidelines, goals and mission of the business or organization that you feel is treating you unfairly and denying you services, programs and respect. You will almost always find the employee who denies you and disrespect you does not represent the business or organization you are trying to access. Government and state programs have employees who are overwhelmed and burn out runs rampant. If you do not learn to advocate you will most likely be shoved to the side and forgotten. Businesses like wise expect employees to do twice the job for the money with no incentive to build the business through customer relations.
However, there are people who care and they are the business owners and the directors of federal and state programs and non-profits. The first group is invested in profits and the rest are vested in the goals through mission statements they agreed to uphold when they took their positions. The “key” to advocacy success is understanding what is important to them. For business it’s pretty easy because customer satisfaction and word of mouth marketing equals profits. You already have power here and employees who drive away customer will not last long.
Non-profits, federal and state programs are a little more difficult and intimating because you don’t have a choice weather you do business with them or not. But, it is worth the fight and you can win. First research the organization and find out exactly what they are supposed to be providing and how. If you do not have a computer to research then go to the public library. They will assist you in your research. Letter writing is always the first step to good advocacy but know not only who to send it to but include what happened, how you felt you were treated and where they had not complied with their goals, mission statement or program guidelines. Think of it as verbal litigation. Keep it factual. Emotional letters smack of victimization. Ask them to respond within a certain date. End with thanking them for their consideration and place the ball firmly in their court by stating what outcome you expect in clear and factual words otherwise it is just a complaint letter.
For federal and state funded programs that you get no or unsatisfactory responses do not hesitate to talk to your congressman and ask for their help in intervention. Above all keep your focus on the facts and avoid emotional drama at all costs. State what you want and what you know, based on the guidelines, you qualify for.
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.
Not too long ago society’s expectations of a person with a disability and their potential was pretty limiting. Mobility equipment inched along with adaptive aids slowly advancing in design and function. Then in 1990 the Americans with Disabilities Act was enacted opening up the world for the disabled to get out and enjoy their community and country. Part of this important law refers to equal access to transportation and public and commercial facilities. The demand began to increase for equipment that would provide a way to integrate into everyday life of travel, grocery shopping, camping, football games and other activities previously very limited for people with disabilities. The medical equipment industry begin to see money in this new demand. As it always has been, profit is the real mother of invention. Money being the motivating factor led to more inventions, improvements and options of medical equipment than ever before. We began to see things like stair lifts, portable and permanent ramps, motorized lift chairs, mobility scooters, hand controls for vehicles and all kinds of computer technology as well as huge design improvements in power in manual chairs. These improvements in medical equipment have become so lucrative that new inventions develop constantly. I’ve included a small list of some of the most intriguing ones below.
- IBOT STAIR-CLIMBING WHEELCHAIR
DEKA Research designed this for rough terrains but it can also climb stairs up and down with it’s self-balancing technology and even “stand”.
- DYNA VOX EYE MAX
Dyna Vox EyeMax uses eye-tracking technology for computing, tv watching, reading and speak for people with limited mobility. It tracks users eye movements by blink or gazing.
Neil Harbisson invented EyeBorg because he can see only black and white. Strapped to the head EyeBorg can identify 360 hues and send audible tones through bone conduction.
- BRAILLE SMARTPHONE
Touchscreens are not user friendly for vision loss. This phone has a screen comprised of grid pins. When the user receives a message, the pins form shapes and characters using “Shape Memory Alloy”technology.
- KAPTEN PLUS NAVIGATION DEVICE
Traveling alone foe visual impairment is a challenge. This device has a ver small GPS locator into it. As the user walks down the street, it speaks the direction and location the user is going. It can also sore routes in it’s memory.
ORCAM recognizes text and products and speaks through bone-conduction earpiece.it can read newspapers, books, signs, labels on products even text or computer screen.
- SPEAKS FOR ITSELF RIGHT?
- IROBOT HOME ROBOTS
Some items designed for the general public also assist people with disabilities in cleaning their homes.
There are so many more inventions on the horizon. These technologies have opened a world not accessible to the disabled before. If you would like more information on these or other technologies check out the website under Assistive Technology at www.swcil.org.