Epilepsy & Art

2015-12-02 19.40.08

How do we define art and what constitutes as art?

Such a wide spectrum of specialties and skills but what impact does that have on each person?

If you walk into an art gallery more often than not you’ll overhear conversations of how a particular painting makes someone feel, what stands out to them and how that emotion or feeling manifests itself.  That is a typical response and demonstrates the intensity one receives from someone else’s creativity.

Art has many more therapeutic uses associated to it.  Because the spectrum of art is so vast, different types will have various effects.  Drawing and painting is a regular practice used for children and adults as a means of expression if they are unable to verbalize something.   So where does that leave epilepsy?

Like the above example, drawing and painting is a method of self-expression.  Coloring books are all the rage as it is proven to relax and relieve stress.  Stress in itself is a classic symptom which increases seizure activity.

For me, I have always been more creative and artistic than I ever was academic.  I scraped by in academic subjects but my highest grades were always, art, textiles, music, dance etc.  Being creative transports me to another place.  It’s a place of peace where I forget the stresses of everyday life, seizures and really exercise a part of my brain which feeds my soul.

Over the years having trained as a dancer and then pursued a career in theatre for a time, I travelled and taught arts and crafts, stained glass and drawing.  I was also immersed in the judicial system and administration in various forms for many years and while I gained many skills, I found it to be constricting and I seemed to just exist from one day to the next.

One of the other issues with working in those admin areas was the stress and constant feeling of having to prove myself as an epileptic; that I was just as good as those without epilepsy; that I could work as fast and as efficiently, but I always wondered and was concerned what people thought of me and that my ability was being questioned.  This became an endless cycle of stress and my absences always increased during these situations.

Now, I’m currently in the throws of laying the foundations for a business.  I am eager to work for myself, to navigate my way and one of my products will be glass related.  Being active in the artistic world gives me a real sense of freedom.  The world is my oyster, I feel good enough and I don’t worry about whether I will match up to the standard and quality of colleagues’ work.  Now I am proud and love what I do.

The creative process is unique and to know I have produced that, to look at glass and go through the motions of bringing a vision to life is nothing short of magical.  I lose myself in each step of creation because all I feel is joy.  Being alone also helps me to be calm.  So often interacting with people whether it’s friends, family or acquaintances, the energy and focus necessary to engage in conversation and piece together the communication of words or sentences I have missed is exhausting.  If I’m on my own working I have a clearer head.

It’s easy to get caught up with life and all its requirement but making time for something creative is so important.  I’ve had many people tell me they’re not that way inclined, but that’s why coloring books are there, it’s simple or why not take a chance and try something new?  You may just find that you excel and this brings you a therapeutic relaxation which will improve your health.

“Every child is an artist, the problem is staying an artist when you grow up.”

– Pablo Picasso

Epilepsy & Family

Trio2

The Calm Before the Storm…

Family is a blessing at the best of times but for those with epilepsy, it perhaps becomes more so.

I was fortunate, my experience growing up with seizures and family was the best that I could possibly have had.  My mum went above and beyond to do all she could to try various treatments both orthodox and alternative.  Even at my grand old age of thirty-six she still remains my statue of wisdom, knowledge and unconditional love. I run situations by her, ask her advice and receive complete honesty in return – whether I want to hear it or not!  Whilst I have taken responsibility of my condition as an adult, I value the strong bond that epilepsy created between my mum and I.

My seizure history is pretty colorful and varied.  Seizure types included: myoclonic jerks, tonic clonics, hallucinations and after the age of eleven the absences began.  I continue to have absences and occasional myoclonic jerks but the tonic clonics are under control and really, from the age of four, for as long as I can remember, my mum was and has always been my rock.

One of the aspects associated with my sister that I felt guilty about for a long time but have come to terms with, is that I became the focus of the family due to my needs.  My sister was patient, loving and understanding even though she was only three years older.  I believe it attributed to creating an environment in which we took one day at a time knowing we were all there for one another because we were bound with love.

All available money was funneled into alternative therapies alongside the medication issued from the hospital.  Food and nutrition was explored in depth with a significant degree of success.  I had numerous allergies when I was younger so I would regularly be tested but food remained limited.  My mum would research and cook different dishes in order to try and give me tasty alternatives.  Thirty years ago, there wasn’t the availability of gluten-free, dairy free, wheat free products etc., this made variety a lot harder and required extensive research along with trial and error.

My mum also trained as a massage therapist and subsequently began a business in order for me to receive a massage weekly, as improvements had been seen with my seizure activity.  Being in a relaxed state for my brain worked absolute wonders.  Around the age of eight or nine, we had explored so many different options that my epilepsy was fully controlled by massage, nutrition, homeopathy and acupuncture.  This continued till I was eleven when the hormones kicked in and then all hell broke loose!

Despite the change, it is wonderful to think that through such dedication my mum enabled me to physically be in the best health that I could be and instilled the attitude that anything is possible if you’re open and willing to do the research.  There were of course therapies that didn’t work but I am so grateful that my family passed on the generational saying, “If you don’t have your health, you don’t have anything.”

On the other side of the coin I have met people whose families have not been as understanding.  In many countries, epilepsy sufferers are excluded and shunned by their families.  In the west, there are family members, employers, partners and friends who remain fearful due to lack of education and knowledge.  It’s easier to just ignore what you don’t know, right? Well, actually no.

Once again, we live in a world where much needs to be learned so we can change, understand, be tolerant and respectful of others.  We can love and care for people in the way that is needed but that can only be obtained through positive values, security and love from our families.

http://www.associazioneepilessia.it/

 

 

Delicious Ketogenic & Sugar Free Cheesecake!

20170314_173336

One of the things I knew I would miss when I started out with the ketogenic diet was a dessert.  I don’t have a huge sweet tooth but every now and again I do like to indulge in something delicious; however, with being a sugar addict I found myself indulging a little too often!

I find that when I am restricted from eating or drinking something, even if I don’t regularly consume it that is when my body decides it wants it the most.  I had to discover a healthy and tasty alternative which would replace the processed sugar based treats and keep a balance within my diet.

I was never a huge fan of stevia.  I used to chomp on the actual twigs in yoghurt many years ago and I’ve tried the powder which didn’t leave me wanting more but, being open minded I decided to try the liquid.  Boy, was I impressed!  It didn’t leave the unpleasant after taste that the powder does and it was very much like sugar in my book.  One thing I did realize is you must taste the mixture as you go along because one drop too many and it can completely ruin your dish.

My first life-saving experiment was cheesecake.

Unable to have nuts in the house due to my beau’s severe nut allergy, any recipe requiring nut flour is substituted with coconut flour but you can of course reverse this.

Cheesecake

¼ cup of coconut flour

4 tbsp. butter, melted

2 (8 ounce) packages of cream cheese

2 eggs

2 teaspoons of vanilla extract

3 pipettes of liquid stevia

  1. Preheat oven to 350 degrees F (175 degrees C). Line a 12-cup muffin tin with muffin cases.
  2. Mix the butter a little at a time with the coconut flour.   On occasions, I have found I don’t need all the butter so you can gage the consistency as you go to make sure it’s not too soggy.
  3. Spoon the mixture into the bottoms of the muffin cases and press into a flat crust.  Note: The crusts will be fairly thin once the mixture is distributed. 20170311_172147
  4. Beat the cream cheese, eggs, stevia and vanilla extract together in a bowl with an electric mixer until smooth.  Depending on your preference for sweetness it may be ideal to start with 2 pipettes of stevia and 1 teaspoon of vanilla essence and keep adding until it is to your liking. 20170311_172333
  5. Spoon the mixture evenly in to the cases. 20170311_173303
  6. Pop in the preheated oven until the cream cheese mixture is nearly set in the middle, approximately 15 minutes. 20170311_174649
  7. Let the cupcakes cool at room temperature until they are cool enough to handle.
  8. Refrigerate 8 hours to overnight before serving.

The nutritional facts per cheesecake are as follows:

Total fat = 44g

Total carb = 1.6g

Dietary fiber = 0.83g

Sugars = 0.25g

Protein = 0.66g

They’re super easy and quick to make plus they’re to die for – happy munching!

United Blogs Against Epilepsy – Epilepsy & Mass Media

FDNH

The excitement! The first piece to be posted on

http://www.associazioneepilessia.it/bloguniti/topic01_epilessia_massmedia.html

The media is a vast and powerful tool to influence and educate the public.   If used correctly, its positivity is limitless but all too often it conveys information that is detrimental.

Social media is a platform which in this day and age reaches millions of people worldwide.  As a blogger, I have accounts on Facebook, Instagram and Twitter, as well as Tumblr and WordPress where Finding Freedom with Epilepsy resides. The locations of my posts reach far and wide and the number of people who view, comment and ‘like’, validate the purpose of being an epilepsy advocate.  I am educating and displaying my experiences – the good, the bad and the ugly (!) – out there for fellow sufferers to relate to.  It is to offer comfort with the intention of minimizing isolation by being able to connect and reach out to others in the same position.  The methods of seizure control I have experimented with have been vast.  Aside from the orthodox route, I have veered onto the path of alternative and complementary therapies, some successful, some not.  As every person with epilepsy knows, we are all unique in our condition and what works for one person won’t always work for another.  But for our own quality of life, to leave no stone unturned is something required if seizure freedom is the goal.  For those like me, who use the internet as a platform to extend that knowledge and personal experience to the world, in the luxury of a café or my own home with my laptop, it is an achievement of immense proportions.

Movies are a successful method of portraying epilepsy.  There was a wonderful movie with Meryl Streep called ‘First do No Harm’.  The film documents a young boy with refractory epilepsy; his family’s journey with the diagnosis; the side effects of the drugs; the challenges of medical insurance when their circumstances change and their triumph with the ketogenic diet.  The film was based on the director and producer’s son and it was depicted in a brutally honest and positive light.  This is the key to educating people as it provides them with an insightful truth.

The film was nominated for an Emmy, Golden Globe, a Satellite Award and the Humanitas Prize.  The young actor who played Robbie, the little boy with epilepsy, won the Young Artist award.

So, with all that positive press, what happens when the information conveyed is negative?

There are plenty of myths out there and we are battling to override those.  The occasions that I have spoken to people about my seizures, I have received a wonderful response.  When they ask what they should do to keep me safe, some reaffirm before I answer that they just need to place a spoon in my mouth – pretty worrying!  Television and/or movies in particular are guilty of this.  The audience that those media styles reach is tremendous.  Seeing a character in a T.V show put a spoon in the mouth of somebody having a seizure is what the viewer will recall, they rarely remember the context of whether it was right or wrong.  If there is no explanation that it could physically injure the individual, the prehistoric myths are compounded and the progress that we are making of eradicating stigma takes us five giant steps back that will take years to repair.

In addition to the physical portrayal of how to (or how not to) deal with seizures, there are of course the jokes.

Now, I like to be light hearted and have the ability to laugh at myself, but depending on the context it can just be inappropriate.  There are many references in film and television where this occurs.  There have been numerous occasions when directors, writers or producers have had to openly apologize for promoting the stereotypes that we are trying so hard to change.  For comedians, we are a prime target, there’s nothing funnier than hearing a joke about seizures, right?  No.   For anyone who finds this material entertaining, I would offer a grand mal seizure to them and then see how funny they feel after the experience.

In a world of cellular obsession, I have stumbled across people who, rather than assisting somebody who needs help, have taken to filming a seizure for pure entertainment which then get posted on Youtube or Facebook.  Are we really living in a time when we as humans have become so uncaring for our fellow man that we would use suffering for a form of entertainment rather than somebody else’s well-being?

We have a long way to go before epilepsy will be fully understood.  We can only hope in the meantime, that all the media platforms with which to promote positive information about epilepsy are used wisely and those with power and influence realize our reality and join us in the crusade.

 

 

 

 

“It always seems impossible until it is done.” – Nelson Mandela

blogunitibanner

My blog has become an integral part of my week, it’s my baby.  I love writing it and I relish taking my daily life, what I do, what I see, where I go, and figuring out how I can apply it to epilepsy because, quite frankly, it’s out there!  There are so many correlations between life and epilepsy.  There’s purple everywhere (as my social media sites will have recently shown you!), and it serves as a reminder that just as the color is everywhere, so are the human beings that live with seizures.

It is always a blessing when advocacy and the epilepsy related blog sites get acknowledged.  There are such fantastic blogs out there and what I find astonishing is just how different each and every one is.  They’re completely personal to the creator and there are so many perspectives in which to experience living with epilepsy from.

With mine, whether it’s comments or purely the fact that it reaches people globally, it gives me the feeling of satisfaction that I’m advocating and reaching out to share my experiences which could be of help to somebody else.

Having created Finding Freedom with Epilepsy just over three years ago, it’s heart warming that this blog is getting so much positive recognition from both readers as well as external sources.  I’m being offered more writing opportunities by a variety of websites which enables my online advocacy to travel far and wide, fulfilling its purpose.

It was an exciting prospect when the Epilepsy Association of Emilia Romagna (AEER) in Italy contacted me and asked whether I would like to be one of six bloggers writing for their new project, United Blogs Against Epilepsy.  My answer was a definite, YES!

I will be writing once a month on a specific subject.  This is a great challenge to make me think outside the box and to hopefully provide even more information for my followers on FFWE too.

The page has now gone live and all pieces are published in English and Italian plus Google do a fine job of translating the site if you’re not fluent in Italian!!

The key to getting the word out there, the stigma reduced and people educated is working together.  Thank you for all the support, we’re all crushing it and we’re doing it together!

Check out United Blogs Against Epilepsy at: 

http://www.associazioneepilessia.it/bloguniti/index.html

A Medical ID Bracelet Or Survival Tool?

products_vets

Freedom, the definition according to the English Oxford Dictionary is as follows:

“The power or right to act, speak, or think as one wants.”

It’s a word that features strongly in my advocacy for epilepsy and a word I chose to incorporate in the name of my blog because of its representation.  I fight every day to achieve freedom from my condition and to try and create a quality of life for myself.

But what happens when you selflessly choose to use your freedom in order to create freedom for others and to defend your country?

In Colorado Springs, a business called HandmadeByHeroes.com answers just that.  Not only does it answer that question but it also determines what can be achieved after that sacrifice has been made.

I was honored to be contacted by Joe Barela, one of the many war veterans who has returned from deployment abroad and who now works for HandmadeByHeroes.com. He is one of twenty-six members working in the therapeutic environment which assists ex-service men and women to reintegrate into employment and their home life.

War generates a diverse amount of long lasting effects; coming home after being in the military renders significant change.  Ex-military can arrive home broken and scarred, mentally and physically.  Additionally, in daily life there are the conditions to contend with including PTSD (Post Traumatic Stress Disorder), TBI (Traumatic Brain Injury) and PTE (Post Traumatic Epilepsy) which is a seizure disorder caused by TBI.

Employment can be challenging to maintain, but it is one of the aspects of life that once home is full of hopeful opportunity.  Soldiers return to their families and with the necessity to provide for them or themselves, HandmadeByHeroes.com is the perfect place to start.  It’s a work space where healing can occur; work colleagues are people who have been through similar experiences and can relate to one another; but perhaps most importantly, it is a support network.

Their mission statement is as follows:

The goal of HandmadebyHeroes.com is to employ US Veterans who have given so much for our Nation. But apart from providing employment, we also aim to give the Veterans working for us the opportunity to learn new skills and trades which can help them transition from the Military into the Civilian workforce, where they can find new jobs with their newly learned skills.

They receive full training which offers innovative skills that can potentially be used in future job roles.  Each employee is paid per individual piece, this allows flexibility to work the hours to suit their circumstances.  The position offers veterans the chance to expand in different areas and to be creative.  Many, if they wish, have a hand in designs for new and upcoming products as well as the general running of the company.

Image2

The products for sale on the website are made from military grade 550 and 450 paracord.  It is a flexible and durable material, hence their lifetime warranty.

As I began writing and researching for this piece, I figured there must be plenty of other military related materials that could be used, why paracord in particular?  Perusing their blog (https://handmadebyheroes.com/blogs/features) which has an abundance of very interesting information about the military that I didn’t know, I got my answer.  When the bracelets are in their basic form, they can be used as a survival tool.  There are some super videos to watch that demonstrate all the unusual and wonderful ways you could use your cord if it became necessary.

https://www.youtube.com/watch?v=U7BHoVrpZio

Their diverse stock includes medical ID bracelets, bracelets representing different sports and their teams, key chains, lanyards, dog collars, watches and water bottle holders.  They are fully licensed by the NFL, MLB, CLC/CLPA, NHL and NBA (through Aminco) so you can purchase your favorite sports team – my Green Bay Packers bracelet is on its way!

Medical ID bracelets are their main line of merchandise; when talking to Joe, he informed me that the epilepsy bracelets fly off the shelves – and yes, I have one of those wending its way too!  The bracelets cover conditions such as diabetes, PTSD, essential tremor, asthma, epilepsy, autism, a plethora of allergies or you can customize your own engraved bracelet.

One of the of the personal touches that I found to be heart-warming was the biography of each veteran that works for HandmadeByHeroes.com.    Once you purchase an item you will be informed which veteran has made it for you. By going to the creator’s bio, you not only receive a snap shot of the journey which has brought them to the present, but you can also say thank you.

HandmadebyHeroes.com is a beautifully personal endeavor, which not only impacts each working veteran positively, but for those who buy from their site as well.

Visit their website to learn more.

 

 

 

 

 

 

Quote of the Day

cd6bc7af128397a9924e421009c36e05

We conquer each day with strength and courage because we have to. It becomes silent living as we disguise our true feelings about seizures, their reoccurring side effects and the daily challenges we face, with an adopted persona.  What’s on the inside isn’t projected outside. Seizures, endometriosis, chronic pain, diabetes, or other health conditions – life and pain don’t stop or offer a break.

The river will leave you in its wake if you’re not floating in the current. Remember, it’s far more difficult to swim upstream…