stay positiveAs anyone suffering from a chronic condition such as Chiari Malformation can attest to, it is difficult to stay positive. When pain is all you can feel from where you stand, it may seem impossible to find the good in any of it. Before we start talking about the importance of staying positive, it is important to know that being optimistic doesn’t mean you absolutely need to avoid the negative all at once. Instead, take baby steps to condition your body to think positively. A great starting place is to find things in your daily life to be grateful for. A little bit of gratitude can go a long in way in bringing you out of despair into belief, and from belief into hope. We are all, so much more than our conditions, you may not be able to control the condition, but finding things that make you feel good outside of it can go a long way to gaining control of how it affects you.

According to mentalhealthamerica.net’s article Stay Positive, those who reflect on things around them they appreciate (mother, friend, career, the place you call home, etc.) are more optimistic and also have fewer physical complaints. Undoubtedly, staying positive has a favorable effect on physical and mental wellness. Don't worry if you truly cannot find something to appreciate on demand, find the good in at least one thing around you and more things to appreciate will surface.  Example?  "I don't have the job I want....BUT I have a job"  or  "I do not live in the house I dreamed of...BUT I have a roof over my head".  You do not have to start big, just START!

It is also important to share the other side of the story, so we can truly appreciate our positive successes. Pessimism, which is linked to depression, is said to occur when one believes a situation is beyond his or her control. All pessimists suffer from high stress, a precursor to depression, as well as many health risks that increase over time.

Optimists, on the other hand, have the ability to alter their views of negative situations. Instead of focusing on the negative things going on in their lives, they train their brains to think productively. They count their successes instead of concentrating on their failures; they expect progress; and they don’t long for achievement… they demand it.

Go out there. Do. Act. Demand happiness. You deserve nothing less!


A positive frame of mind helps you to:


Lists from www.successconsciousness.com/positive_attitude.htm
  • expect success, not failure
  • feel inspired
  • have strength to push forward, if you encounter obstacles in your way
  • regard failure and problems as blessings in disguise
  • believe in yourself and in your abilities
  • find self-esteem and confidence
  • look for solutions, instead of dwelling on problems
  • recognize opportunities

Simple tips for developing a positive attitude:


  • choose to be happy
  • look at the bright side of life. It's a matter of choice and repeated attempts
  • choose to be optimistic
  • find reasons to smile more often; you can find such reasons, if you look for them
  • have faith in yourself
  • associate yourself with happy people
  • read inspiring stories
  • read inspiring quotes
  • repeat affirmations that inspire and motivate you
  • visualize only what you want to happen, not what you don't want
  • learn to master your thoughts
Every once in awhile we meet a member in the community with an inspiring story to tell. Sometimes, a postiive outlook is all it takes to get life moving in the right direction, other times it helps to affirm it through another persons story of determination and passion to realize that though the diagnosis will not change, how you look at it and live your life will, its up to you how you choose to see it. Will it push you in the direction of change, or will it halt you from making any real progress with getting down to the business of moving forward and living your life as happy as you can from where you stand?   We hope these one-on-one interviews can give you a little motivation, or at the very least, keep you moving in the right direction.

NEW!  Persevering & Preserving Life: One Day at a Time | Bennett Roman

When Bennett started his junior year of high school, he had no idea that his life was about to push him into a situation which would inspire him to become a doctor. He has learned throughout his journey that focusing on the positives is extremely important as well as finding the strength to lean on others for support.

NEW!  Shhh Chiari...I'm Too Busy Saving Lives | Claudia Martinez

"Because of Chiari, I now fully understand what a patient needs. As I continue working with patients, I see how my experience unites me with them, providing an unspeakable bond in which they know I’ve been in their shoes. I never thought I’d spend so much time in a hospital bed, much less while working toward becoming a physician, but it’s been an invaluable experience that can never be learned.”

Embracing New Directions with Chiari | Sarah Cummings

Sarah, an accomplished Economics graduate from Princeton University and talented marathon runner, has found strength in living life as a Chiari warrior since her diagnosis early in 2003. To this day, she remembers just how much her life has changed and the new passions she has embraced along the way.

Find Your Moment and Share It! | Janelle Applequist

Janelle, a PhD candidate of Pennsylvania State University, recently shared how the retelling of personal journeys can assist and further public and private passions. With the help of TEDxPSU, Janelle was able to share her experiences with a live audience as well as online followers who are interested in community oriented “Ideas Worth Spreading” (ted.com).

inspirational quoteOccasionally, a story with a positive outcome is submitted by someone in the Chiari Community.  We appreciate these letters, because generally,  when a person has had -what they consider- a successful decompression surgery, they go back to their lives and we rarely hear how the story ends.

These stories are important for patient's struggling to find hope!

Do you have a positive story to share? Submit to director@conquerchiari.org



NEW!  Black Belt

Two years ago, Jessica was sitting in a doctor’s office wondering if Karate would be one of those things she may have to give up. Could she be the same fighter she was before? What she learned is that chiari had made her stronger, more motivated, confident, fearless, and proud of where she had come from.

Minimally Invasive Surgery Worked For Traci

I am writing to all Chiarians considering decompression surgery to encourage them to research all their options and know that with the right specialists, there can be relief to their symptoms. Dr Di has been my miracle worker. I know I have conquered Chiari!

3,000 Miles To Success For A Young Boy

Finally, we had a decision to make, and it was not an easy one. We had to choose who would perform Jack's Chiari decompression from among two world renowned neurosurgeons, one of whom was 3000 miles away.

Nova Lee Lives With Chiari, It Doesn't Live With Her

I still have some deficits, but the main ones: balance, head-bouncing, numbness and occasional speech mistakes have all been alleviated by surgery. Although Chiari is not fun, is still not as devastating as it could have been.

Grown Daughter's Happy Outcome

We would love to share our story. When Chiari and Syringomelia first hit our family we, like many others, had never heard of them. We turned to the internet and searched for information. What we found informed us a great deal but frightened us as well because there seemed to be more stories of pain and suffering than success. We hope this story will give optimism to someone who finds themselves in the same place we were only a few short months ago.

Report From A Former Syringomyelia Patient

I lead a normal life. No one would ever know I had a serious neurological disorder unless I told them (which makes an interesting conversation since almost no one has heard of Syringomyelia). I work a full-time job and am now married. The only inconvenience I have as a result of Syringomyelia is an occasional MRI.

One of Those Happy Stories!

It has now been three years since surgery; I am swimming every day for three hours or more, attend one of the most vigorous private schools in the USA and enjoying life. I placed second in the region for my one hundredth butterfly, attend school every day and help my family with chores and cooking. A dream of living without pain, three years ago, was untouchable. Now that dream has shifted to helping others live without pain and raising awareness.

Moving On With Life

Syringomyelia is a potentially life-changing disorder, and surgery doesn't necessarily "cure" it. But normal life can and does continue after surgery.

The Greatest Joy

Next week, he will be able to play again with the other kids and start riding his bike. The doctor said that his neck has pretty much healed but it will take close to a year for the spinal cord to heal. But to see our son smile again...that is just the greatest joy.

A good sense of humor can't cure all ailments, but data is mounting about the positive things laughter can do. A good laugh has great short-term effects. When you laugh, it doesn't just lighten your load mentally, it actually induces physical changes in your body:

  • Stimulates many organs. Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.
  • Activates and relieves your stress response. A rollicking laugh fires up and then cools down your stress response and increases your heart rate and blood pressure. The result? A good, relaxed feeling.
  • Soothes tension. Laughter can also stimulate circulation and aid muscle relaxation, both of which help reduce some of the physical symptoms of stress.

Source: Mayo Clinic (click to read more, including the long term benefits)



Community Submissions

Submit your funny story to director@conquerchiari.org

A Limerick
There once was a man with headaches so bad,
He went to the doctor screaming mad,
The doc said, "I'm sorry,
But its Arnold-Chiari,
And its going to hurt just a tad."

~R. Labuda~

Kids Say The Darnedest Things
My six year old daughter, who has Chiari and syringomyelia was getting ready for surgery in a few days and she had recently overheard us explaining her surgery to some friends.

We explained how the doctor would cut out part of her skull and part of her C1 spine. From hearing all this my daughter formed her own explanation of what was going to happen. She was overheard telling her peers how the doctor was going to cut her head off so she would feel better!

The funny thing was that she was okay with that...just as long as she would feel better.

~M. Huff~

Peaches, The Radioactive Cat
While traveling to St.Petersburg to get yet another consult from a Neurologist, my 13 year old daughter, Kirsten, who is diagnosed with a syrinx on the T 7-11, and I were talking about a wide variety of subjects. She suddenly inquired of me, did I know that cat skins emit radiation?

I immediately thought of her Manx cat Peachy, who we adopted as a stray. I replied, "How can that be? I have never heard of such a thing, and how would she have ever been in contact with radiation as she is always inside? And if that is the case, she needs to stop sleeping with you."

She looked at me funny and asked "Mom, what are you talking about?"

I said, "Peachy [the cat], it doesn't make sense about this radiation, where did you hear that?"

She started to laugh hysterically and said "CT scans mom."

We laughed for several miles. Finally I chimed in that when she becomes a vet, we need to make a sign for the waiting room that has a picture of a cat with radiation emitting from it and a warning.

~J. Boileau, Florida~

Syringo-humor
Recently I had to try - yet again - to describe my illness to someone I knew wouldn't even begin to understand.

I started off with, "I have had a hernia in my brain." Blank expression.

"I have a vertical cyst in my spinal chord." Even blanker expression.

"I have had posterior fossa decompression surgery." Virtually unconscious.

Finally, out of frustration I declared "It's a pain in the neck!!"

~S. Allport, U.K.~

Christmas Memory
As my Chiari progressed my children noticed my memory worsening.

One year my husband decided our two daughters were old enough to go and help him do the shopping for my Christmas presents. They were gone several hours and I was in the kitchen making dinner when they got home. They rushed into the back of the house and wrapped my gifts to place under the tree. After wrapping them my youngest daughter, then four-and-a-half, promptly pointed to each present and told me what they were.

"That's nice honey," I said. "But you aren't supposed to tell me. It's supposed to be a surprise."

My daughter looked at me with wide eyes and exclaimed, "That's OK Mommy. You will forget before Christmas. You forget everything!"

~C. Jerome~

A growing collection of people in the community who aim to motivate others via the web through video, blogs and social networking.

Do you have a blog, YouTube channel, website, or social networking page you would like to share? Please submit your web address along with a small description of your inspirational corner of the web to director@conquerchiari.org


YouTube Channel



Kimberly Elizabeth Playlist
www.youtube.com/playlist?list=UUfCdSjGF7fkap9GJ1UjV5cg

We first met teenager, Kimberly Elizabeth a couple years ago through one of her inspirational videos. She isn't afraid to show emotion, and offers some wise words for those suffering from chronic illness.

10 Ways to Stay Positive with a Chronic Illness
www.youtube.com/watch?v=OZw9Xl0Fx_g

It was a happy accident to find this page, this gal is delightful to listen to with the benefit of making some wise statements that many people dealing with chronic illness can relate to.

Your Brain: Seven Amazing Facts
www.projecteve.com/your-brain-seven-amazing-facts-exercise-included/

The human brain has amazed people throughout the ages. Some scientists and doctors have devoted their entire lives to learning how the brain works [among them dr. Jill Bolte Taylor]. There are a lot of scientific facts known about the brain. It weighs about 1,3 – 1,4 kg. It is made up of about 75% water, consists of 100 billion and some neurons and you have about 70,000 thoughts a day [most of it being the same thoughts every day, running around in circles.

100 Positive-Thinking Exercises That Will Make Any Patient Healthier & Happier
100_Positive_Thinking_Exercises.pdf

Sometimes even the best medicine and healthcare is not enough for a full recovery. For patients struggling with illness or dealing with a major life change, these positive thinking exercises can mean all the difference.

Positive Thinking, Changing Your Thinking Style, and Thought Stopping
www.embracethefuture.org.au/youth/positive_thinking.aspx

It's often easy to think that the way we feel is a result of whether good or bad things happen. But actually, the way we think about what happens to us is more important than the events themselves. The things that happen in our lives are not good or bad in themselves; it's the way we think about them that makes them either positive or negative. Thinking positively is not always easy. When things are not going your way, or something very upsetting happens, it is all too easy to start feeling down about everything. However, positive thinking is a skill that can be learned.

Optimism (What is optimism? Why be optimistic? Positive Expectations)
http://www.embracethefuture.org.au/youth/optimism.aspx

Optimism means looking on the bright side of things, being hopeful about the future, and believing in your ability to succeed and solve problems. Optimists are people who tend to say "yes" to life rather than "no". They try to put a positive spin on things that happen, seeing a good side even to painful experiences. They are able to find some meaning in the things that happen to them, and they do not give up easily, because they believe that persistence usually pays off.

The Science of Positive Thinking: How Positive Thoughts Build Your Skills, Boost Your Health, and Improve Your Work
www.huffingtonpost.com/james-clear/positive-thinking_b_3512202.html

Research is beginning to reveal that positive thinking is about much more than just being happy or displaying an upbeat attitude. Positive thoughts can actually create real value in your life and help you build skills that last much longer than a smile.

Positive Thinking: Stop Negative Self-Talk to Reduce Stress (Identifying Negative Thinking, Focusing on Positive Thinking)
www.mayoclinic.org/healthy-living/stress-management/in-depth/positive-thinking/art-20043950 Is your glass half-empty or half-full? How you answer this age-old question about positive thinking may reflect your outlook on life, your attitude toward yourself, and whether you're optimistic or pessimistic — and it may even affect your health.