Let Me Tell You My Story About Being Strong and Vulnerable

life is like a bicyclePeople have always told me how strong of a person I am. I remember when I was 20 years old, and I had my official serious break up. My ex-boyfriend’s mother approached me and said, “Don’t worry about this Sita, you are a very strong woman. .” I was baffled at such a comment for two reasons: first of all, why was she telling me that I would be fine? Secondly, what did she mean by strong? That I had the will to get through this, despite personal heart ache and frustration? The second time that people told me that I was strong was when my epilepsy started to get out of control. They would say to me “Sita, you are so strong.” I was confused. I asked friends and family what they meant by strong. It most definitely wasn’t my muscle strength; it was decaying due to my lack of ability to work out. My once toned arms and legs now were simply that: arms and legs with no defined muscle. “You just get through so much,” they would tell me. The answers I received never seemed to suffice. Well this was the time that I felt the need to pull out the good old Merriam Webster dictionary. Okay, I lied. I actually googled the definition. The word ‘Strong’ is defined as ” Having great physical power and ability: having a lot of strength”. Huh, so that’s what my friends, family, and even professors were telling me. It helped to put a definition to the adjective of my character. I didn’t know why I was being defined as strong. I was just trying to deal the hand I was dealt, and work through it to the best of my ability. I just figured that this was life. Everyone dealt with something, I just happen to deal with a chronic condition that was severely interfering with my ability to live my everyday life.

I-Believe-In-Being-Strong-Motivational-Love-QuotesThe other day I was mulling this over, and I thought about a Ted Talk by Brene Brown, “The Power of Vulnerability.” (See link below). Watch it. I’m not kidding. In my natural fashion, I re-watched the Ted Talk and it made me think about vulnerability and chronic illness, and my experiences with the two. Through experiencing extreme troubles with my epilepsy, I became a very vulnerable person. I started to live in an honest and true fashion, and I came to realize that hiding who I really was would put me at danger. When I say danger I mean physical and emotional danger. Brene Brown talks about how being vulnerable brings people closer together. I could not be more vulnerable that I have ever imagined. This way of living brought my friends, family and even complete strangers became closer to me, and they wanted to help as much as they could. By being vulnerable I gained connection, acceptance, and love. This shocked me. Not because I didn’t believe that my friends and family could be supportive, but I never thought that by becoming vulnerable through my chronic condition would bring even more acceptance from friends and from people who I considered to be acquaintances. I found that people liked that I was putting myself out there, and that I was not afraid to expose who I really am as a a person. People appeared to like that I was not afraid to tell them the truth of my reality, despite how shitty it is at times. People liked that when I talked to them, all of my cards were laid out on the table. (So many card references in this post, it’s an accident I promise!)

bullshit-mother-fucker-quotes-separate-with-comma-strong-truth-Favim.com-83751Okay so how does this idea of being strong tie into being vulnerable and this amazing Ted Talk? Ok,so you caught me. Being vulnerable takes strength. It’s hard to expose your true colours and share everything that you’re going through, good and bad. If anything, through this journey of living with Epilepsy I have learned that it is okay to share my journey with people. If people don’t jive with my journey, then I don’t have to have to have a connection with them. It’s that simple. It also takes strength to go through the times that I am going through. Oh my god! I think I just made the connection of what everyone has been telling me! You get to be a witness to it! Although I still see myself as an everyday woman, it takes strength to be vulnerable, and by being vulnerable it allows you to create stronger connections with those around you.

Love you lots! Keep fighting the good fight! xox

Quick and Friendly Monday Update

a-quote-this-27Hey friends! How are you doing today? I just thought I’d give you a quick and friendly update of how things have been going. These past couple of days have been a little tough, but today I took the bus home by myself (instead of getting a ride) and I took my pup out for a walk for longer than 10 minutes! Sounds like no big deal, but when you’re constantly exhausted and anxious it’s a pretty big freakin’ deal! Other than that, I got a card in the mail from one of my good friends in Ontario, which perked me right up! Thank you! You know who you are!

I was also featured in the BC Epilepsy Society Blog. Here is the link if you want to check it out! http://www.bcepilepsy.com/blog/archive/Archive_2014_09_01.aspx

Hope you’re doing well! Love you lots! xox

 

What an Unproductively Exhausting Weekend

WP_000488 (1)Well I can’t believe that it’s 5:45pm on Sunday evening already. The weekend just seemed to fly by! I spent most of my time in bed or on the couch, cuddling with my insanely adorable Chihuahua Pug mix, JoJo. I have been feeling a strong sense of vertigo as well as nausea. I looked up Epilepsy Auras (as discussed in last week’s Epilepsy 101), and both of those are related with seizures as well as anxiety. When I get stressed I tend to hide it from myself and it comes out in forms such as a bad stomach ache, or like I said above, extreme dizziness and nausea. I am also exhausted so I have little will to go out and do anything. Although JoJo and I went out for a nice long walk on Saturday, I just couldn’t do anything today. Anyways, I just wanted to check in and I hope you had a more exciting weekend than I did!

Lots of love! Keep fighting the good fight! xox

Living with Seizures and Experiencing Alternative Realities

WP_000450Seizures are tough. Sometimes I want to huddle under my blankets forever or I can’t shake the fear after taking a tumble. In addition, some of my seizures cause the experience of an alternative reality. This is no joke. I am an not trying to be witty or humorous. I have experienced seizures where, for a certain amount of time I completely and 100 percent believed that I was a different person and in a different context. Mind blown yet? Just wait. It gets better.

A couple of weeks ago my Mom and I were going for a walk in the park near my house. As we were approaching the part of the park where there is a grassy meadow, I fell backwards in a seizure into the soft grass, and I don’t know how long the seizure lasted, but I remember believing that I was a five year old at a birthday party. When I came out of the seizure, I remember feeling almost annoyed that I had left that reality. I was having fun as a five year old! Now I was back to every day me, and I hadn’t even had the chance to have a piece of cake at the party. Humph.

One of my other alternative reality experiences occured when I was at the Neurological Hospital when I was showering. I went from washing my hair to suddenly talking with Ashton Kutcher (From That 70’s Show! Remember him?) We were good buddies and he was just funny and charming as he in the movies and TV shows. I have no idea how much time I lost, but suddenly I was me, in the shower again, slouching on the shower bench with the hand shower device drooping in my left hand. I didn’t tell any of the nurses any of the details of that seizure, beyond “I had a seizure in the shower”. Which, by the way having a seizure in water can be VERY dangerous, as you can go unconcious and say if you’re in the bath and unsupervised you could potentially drown. Scary, I know but it’s a reality. That’s why I always take very quick shower and never bathe when I’m home alone. It’s probably been about 3 years since I’ve had a bath.

So you’re probably calling my bluff and guffawing at all of this. These experiences sound more like dreams, you might say. The thing is, they aren’t. I wasn’t sleeping, but a part of my brain was acting in a way that changed my perception of reality. It’s actually kinda cool. If you think about it, I have experienced multiple realities. My day to day reality plus these ever so often alternative realities. I can tell you for sure that I have been in my room by myself but was talking out loud to someone that wasn’t even there. I was sitting on my windowsill in my residence room (the windowsill was right above the bed, and not high up) and I was talking to a “friend” who came into the room because she was worried I was going to fall. I told her that “Aww I knew you were going to come into my room because you thought I was going to fall. Well, I didn’t!” I’m not sure how I remember this conversation, but in the moment it felt as real as ever. I’m not going to lie, but I actually kinda enjoy these weird alternative realities. They’re neat in a bizarre kinda way. I have had at least 4 of these experiences (probably more), and all of them were different. I was alone for almost all of them, so I don’t know how long I existed in each of them.

This is a rad part of having seizures.. Somedays it’s like living in a Sci-Fi movie, so it keeps life interesting. Yeah, yeah I know, seizures are difficult, but I may as well appreciate the interesting ones. This is not uncommon for people with seizures. Sometimes they believe that they are somewhere else and are completely disoriented. SO I know I’m not the only one with these experiences. If you don’t believe me, then that’s cool. But this is definitely 100 percent real.

Love you lots! xox

Epilepsy 101: Do Epileptics get a Warning Before a Seizure?

I chose to be happyWhen I talk to people about my seizures, a common question is whether or not I get any warning before one happens. Most often, I get zero to little warning before my seizures. Sometimes I get a “funny feeling”, feelings of anxiety or extreme fatigue. These symptoms- which are called Auras- are difficult to differentiate between every day feelings of fatigue, anxiety, and random funny feelings. Other people living with Epilepsy have very clearly defined Auras, which makes it easy to get to a safe space before the seizure occurs. There are many Auras that people experience- ranging from tame to extremely odd. Auras can occur together or separately.

According to the blog Living With Epilepsy, by Phylis Feiner Johnson, here is a little list of Auras:

http://epilepsytalk.com/2010/06/06/a-menu-of-epilepsy-auras/

Visual changes

Kaleidoscope effects

Visual hallucinations

Shimmering sensations

Vibrating visual field

Distortions in size, shape or distance of objects

Bright lights or blobs

Zigzag lines

Tunnel vision

Blind or dark spots in the field of vision

Curtain-like effect over one eye

Blindness in one eye

Motionless stare

Dilated pupils

Auditory changes

Hallucinations — hearing voices or sounds that don’t exist

Being unable to understand spoken words

Muffled sounds

Buzzing noises

Loud or whispered volume

Temporary deafness

Physical changes

Weakness, unsteadiness

Changes in heart rate

Sweating

Nausea

Vertigo

Saliva collecting in mouth

Lip smacking

Chewing

Swallowing

Strange smells

Problems speaking

Repetitive movements

Limbs jerking involuntarily

Numbness or tingling on one side of face or body

Feeling of being separated from your body

Needing to urinate

Psychological changes

Confusion

Anxiety or fear

Physical detachment

Déjà vu or jamais vu, a sense of familiarity or unfamiliarity

Resources:

Steven C. Schachter, M.D.

So as you can see there are a lot of Auras that people with Epilepsy experience. Some (like myself) experience zero to little warning before a seizure, and others get them with enough time to be safe. Personally, I wish I had warning before my seizures- as I would have less collateral damage. Ah, well. I am pooped as I have had a long day. Hope you’re doing well!! xox

Epilepsy 101: How Many People Have Epilepsy?

silence is not the answerHey Everyone! So here we are- I can’t believe it’s Wednesday already! Geez. So anyways, that aside this week’s topic is How Many People Have Epilepsy? Well, here we go! 

According to the World Health Organization (2012), there are 50 million (50 million!!!!!) people living with Epilepsy worldwide. 
80% of the people with Epilepsy are found in developing regions
70% of people living with epilepsy are treated, yet about three fourths of the people living with Epilepsy in developing regions do not receive the care they need

Here are the Statistics for People Living with Epilepsy in the United States:

2.2 Million people live with Epilepsy 
That’s about 7.1 for every 1000 people 

Higher numbers of people report active Epilepsy
That’s about 8.4 for every 1000 people. 

According to epilepsy.ca, the Statistics for people with Epilepsy in Canada are: 

Each year an average of 15,500 people learn they have epilepsy
44% are diagnosed before the age of 5, 55% before the age of 10,
75-85% before age 18 and 1% of children will have recurrent seizures before age 14.
1.3% are over the age of 60. This means that about 60% of new patients are young children and senior citizens.

WOW! So I don’t know about you but those are some high stats! So if you ever feel alone and think you’re the only one going through this sometimes debilitating and isolating condition, remember that there are millions of people around the world who are going through similar issues as well. It is easy to feel like you’re the only one suffering, so that is why we need to support each other collectively, whether the support is from another person with epilepsy, friend, parent, or an ally. I believe that we  need allies because it can be hard to talk about Epilepsy, so if we have that extra bit of support it might make that little difference. All of my friends and most definitely my family have been my advocates and allies and have been able to act quickly, such as in a situation where I had a seizure in public. They were able to speak on my behalf and say that I was okay and just needed some air. Thank you every single family member and friend (plus allies!) I couldn’t do it without you! 

Love you all and happy back to school if you’re heading back to school this week!! xox 

PS: Here’s a song I’ve been enjoying this evening http://grooveshark.com/s/Being+Here/2uveTp?src=5