Happy Wednesday Everybody! Hope you love one of my favourite quotes as much as I do! xox
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage-Lao Tzu
This past semester I was taking a course on working with people with disabilities, and one topic that was hotly debated was the idea of disability and identity. It is interesting, because when seizures are well controlled, epilepsy is a very invisible disability and it is up to the individual whether they want to disclose or not. Needless to say, it is easy to cover up. Up until this year, I didn’t often disclose to people, because my seizures were well-controlled and I didn’t feel the need to talk about it.
One thing that I have learned during my years at university, is that disability encompasses more than the stereotypical image of a person in a wheelchair. People have mental health issues, learning disabilities, epilepsy, chronic pain, and the list goes on and on. Until I expanded my understanding of what a disability is, I never actually considered myself as a person with a disability, minus the fact that I have a learning disability. (That’s a whole other story, so maybe I will get to it in another post).
Anyways, during this class, there were a variety of people with disabilities, including a girl with a physical disability. (This is what would be called a visible disability, because it is visible to the eye). I was arguing that, despite having an invisible disability, I would not want to be viewed as solely for my disability, and I didn’t see it as a core aspect of who I was. The girl with the physical disability had a very interesting reaction, in that she loved her physical disability and she wouldn’t change herself for anything. I was dumbfounded by this response. I don’t hate epilepsy, per se, but I have never claimed that I was proud of having it. And I most definitely do not love it. What’s interesting to me is that, here are two people with disabilities, and the one person who cannot hide her disability is open about loving it, and the other person (me)has the option to hide it but does not like it at all.
Since my seizures are unpredictable and I have little to no warning before one is going to happen, it has become mandatory for me to give people a quick heads up. As a result, I have found myself thinking and talking about my epilepsy with other people on a more regular basis. I have been struggling with this though. How much can I talk about my epilepsy without having people box me in as simply that: a person with epilepsy? Also, how much is too much? I don’t want to be the friend who talks about her seizures all the time, but I’ll be the first to admit that I need a lot of support, and I see my friends and family as my little group that helps to keep me sane.
But what is the line between a chronic medical condition and identity? As described above, my peer saw her disability as central to who she was as a person. Even though her disability posed many challenges in her day-to-day life, she wouldn’t want to trade it for anything. When thinking about it, I know this much is true: my epilepsy has made me a very strong person. I mean, we all have to play the cards we are dealt, but I have learned to persist and pursue my dreams, even if it’s through a different path. I also thank my epilepsy because I believe it has made me a very positive and optimistic person. I mean, there’s no other way even though I’ve been having seizure after seizure and it seems like there is no light at the end of the tunnel. I just have faith that everything works out in the end. I’m not sure how, but I know it does.
Anyways, these days I see my epilepsy as closer to my identity than I did before, because it is a condition that takes control over my body at unexpected, and sometimes dangerous moments. The body that has seizures is the same body that dances, hugs, and moves from point a to point b.
Even though I would love to erase it from my life, I have found that it has become a way for me to relate to people. Sometimes when I tell people who I have epilepsy it starts a dialogue about what it is and how it affects me. It also stimulates conversations about other people’s disabilities and mental health issues. I think it helps people to see an aspect of myself that is ‘real’. It is a testament to my own struggles, and that I can empathize with their difficulties as well.
I’m still struggling with figuring out a happy medium of how much to talk about my epilepsy and seizures. I know my friends are concerned about my health, but talking about it too much can be depressing, especially when you feel like your health was getting ‘back on track’. I also fear that they think that I am making the conversations all about myself. I just try to be honest, and be upfront about my health when they ask. Friends extend themselves to support me when I need it, and although I am good at asking for help, I am still learning how to seek support when I need it.
Thank you to all of my friends who are helping me through this period. No kind gesture goes unnoticed and I am grateful for every single one of you.
Thanks for reading and I would love to read any comments or questions that you have xox.
There is something that has been lingering in my mind the past few days. I’m not sure why, but I keep coming back to one of my best friends, and how much of an inspiration she is to me.
This blog post is part of a new series entitled Inspiring People Who Have Made an Impact. Through these blog posts I will talk about various people who have made an impact in my life and how they truly inspire me to be a better person. I hope they inspire you too!
My friend Rachel (as described in Turning up the Volume on Body Image and Self-Esteem) is one of the most amazing people that I have ever met. We have been friends for about 5 years now, and it was amazing that we even became friends at all because she was in “advanced academics” while I was in the ‘regular curriculum’. None of our classes were together, and from an outside perspective you might not think that we would have any common interests or personality traits that would help keep a friendship going.
Maybe it has something to do with how well our personalities combine, or how talented, intelligent and humble she is. But without a doubt, she has always stayed by me, regardless of the situation.
My final year in high school could be described as a Fantastically Depressing Success. I was going through a lot of personal stuff, and while some friends suggested that I was needy and that I needed to see the school counsellor, my friend Rachel just stayed out of the drama and continued to be my friend. I felt alone, and like everyone had their place but me. Everyone else had their group of friends that they hung out with at lunch, while I just kinda flitted back and forth from group to group, doing my thing. Despite all of that, I graduated from high school with graduated honours with distinction, and received the Writing 12 Award along with the Spanish 12 award. It amazes me how I was able to excel, despite the fact that my mental and emotional states were in the toilet.
Anyways, back to Rachel: even though Rachel and I are unable to get together on a regular basis, we still hold the closeness of a tightly knit friendship. You know those friends that you only see a couple times a year but it’s like there was no time apart? It’s like that. She is so open, and I know I can tell her anything. She also has interesting things to say, such as how her work is going, how a new craft project is progressing, and how things are going with the guy that she is seeing.
One thing that I always admired about Rachel is how willing she is to try new things and have new experiences. As she has been living in Toronto for four months this summer, she has had to completely open up to new experiences and meet new people. As mentioned above, this is not a problem for her. Even though through our Skype conversations I could tell that she didn’t feel entirely grounded in her new job, she was making the best of it by going out to Swing Dancing Clubs and reaching out to the other people around her. She is an amazing person because what you see is what you get. I never feel like she is hiding anything from me, and I know that she feels free to be herself when we are together. Also, if you become her friend, she will be loyal to you and be there for you as much as possible. I think people can sense this about her, because she attracts amazing people into her life, and (from where I stand) it seems that people don’t just drop her as a friend. When telling a friend about her before I introduce them, I can’t help but say that she is one of the most amazing person that I have ever met, and it will take meeting her to understand.
I have been steadily placed in the same location for the last four to five years due to schooling, but when that next big change comes up, I am going to rip a page out of Rachel’s book and treat it with excitement and awe. I am going to see what the new situation has to offer, (whether it be a new job, or living in a new city) and soak up all the excitement with a fresh pair of eyes just like my friend Rachel has done so well. Even though I don’t get to see her that often, I still feel that pang of excitement when we get together after a long period of being apart. She knows not only me, but my heart, which is truly priceless when it comes to friendship.
Who inspires you in your life! I would love to hear in the comment section and stay tuned for our next inspiring person!! xox
I signed off from my last blog post with such enthusiasm that I felt as though I was untouchable. A new sense of hope and optimism were here to stay! The truth about chronic illness though, is that it never really disappears. Even when it is well-controlled, the chronic illness is still there, at the base of your physical being.
Those of you who live with a chronic illness know how frustrating it can be when people try to offer ‘tips’ with regards to how you can possibly improve your health. These tips range from “are you getting enough sleep?” to “Maybe drinking more water will help”, and “Maybe changing your diet can improve things.” I know that people mean well when they give me suggestions with how to manage my epilepsy, but it can be somewhat frustrating when they do not understand the nature of the condition and how it affects me. One thing that really frustrates me, even though it comes from the goodness of people’s hearts, is when people ask me if my seizures have stopped. This is a completely valid question, because as a friend of someone with diabetes, and as a friend with other chronic conditions, I want to know that that person is safe and has everything that they need. On the other hand, it feels less pleasant when someone asks me that question simply for the peace of their own mind. It is also frustrating when it seems as though the person expects the answer to be ‘yes’ every time they ask it.
The truth is, folks, sometimes I can’t guarantee a ‘yes’ to that question. Trust me, I would love to, but when asked simply for your own peace of mind it makes me feel even worse that something that is uncontrolled and ongoing is not in control. It makes me feel even worse about it. Also, let’s face it: I am a bit of a control freak, so having a condition that I can’t control drives me bonkers! Also, being asked why I’m still having seizures drives me up the wall! If I knew, I would tell you! If I could, I would have a brain surgeon look into my brain and magically make everything all better!
Anyways, one thing about epilepsy, along with many other chronic illnesses (and life in general) is that you have to constantly calculate your risk of doing certain activities. Essentially, every activity has some form of calculated risk involved. Some activities, such as sitting on the couch, are pretty low risk, whereas other activities, such as driving a car, are high risk. Lately, I have had to decide what kinds of activities I can partake in, based on whether they are low or high risk. Just yesterday (Wednesday, July 1) I was taking my dog out for a walk. Even though it was a pretty warm day, I was cautious and made sure that my dog, Zoom wasn’t too hot or uncomfortable. It was my favourite walk, and even though I felt a little tired when I woke up in the morning, I have this thing where I absolutely have to exercise every single day, even when I’m a bit tired. Some call me disciplined, others call me crazy.
I was starting to show signs of exhaustion, so I decided to cut my walk short. As I was crossing a small road (not a lot of traffic) so I could walk on the shouldered portion for pedestrians, I started to feel a little funny. All of my limbs went completely rigid, and even though I tried to break my fall, I fell face forward on to the gravel. What was worse was that there was a lady with a small child standing nearby, and I could tell that she was debating whether she should come help me. I was listening to my ipod and had giant hipster sunglasses on, so it was hard to make out any emotion on my face. Plus, my breathing was a little heavy and probably sounded a little weird to an onlooker.
I managed to gather myself up, but I was angry. I was angry that the onlooker just stared at me while I continued to seize. She could at least look away. Later I told my friend about that, and he told that not everyone has the instinct to help. Some people will dive in right away and try to help people when in need, while others draw back and walk away. Ultimately, I made it home safe, but the seizures continued. This part of ‘chronic’ illness is the real kicker: it never really goes away! Needless to say, my energy dropped to an all-time low and I couldn’t believe that I am still the same person who climbed to a lookout on a mountain just a few days a go. Even though I am still exhausted from the seizures, I know that the positive and optimistic person is still inside of me, and I am doing what’s best for me to get better. I am just trying to be mindful, and stay in the moment of how I’m feeling and where I’m at in my recovery. I know that my body is thanking me. It also helps knowing that people can connect are relate to my stories.
Thank you for reading my stories, and please leave a comment because I would LOVE to hear your thoughts! xox
Also thanks to http://www.psychologytoday.com/blog/turning-straw-gold/201208/more-what-those-chronic-pain-or-illness-don-t-want-hear-you-say on thoughts about chronic illness!
I have been diagnosed with Epilepsy for twelve years. (for those of you who don’t know, Epilepsy is a brain disorder that causes you to have seizures). When I was a kid, I was pretty much the poster child of someone who lived with well-controlled seizures. My seizures only occurred about twice a year, and even then they were in my sleep and the worst that would happen is that I would wake up with a bloody tongue. I never felt affected by this medical condition; I just felt like I was an ordinary kid who took medication twice a day to help control these mysterious seizures that only presented themselves on a rare occasion. My neurologist (a doctor who deals with epilepsy and other brain disorder conditions) was in awe. I was going to be graduating from high school soon and I was heading off across the country to start university. She seemed to think this was a big deal! At the time I just kind of shrugged my shoulders. Wasn’t everyone expected to graduate high school and go to university? I mean, my parents never said that I had to go to university, but it was something that I wanted, and I didn’t know why it was such a big deal.
Adjusting to university life was a bit of a struggle, as I tried to balance the stress of work and becoming more independent. The seizures still occurred from time to time, but I was never really in serious danger, as they usually always occurred while I was in bed or in my room. Well, except for the time that I did a face plant because I had a seizure while running. Other than that, the ride was pretty smooth.
January of 2012 is when things got out of control. I had a couple of minor seizures, but as the months kept coming more seizures came too. It got to the point where I feared going to school in the event that I would have a seizure and smack my face on the floor. Even worse than the physical harm to my body was the shame and embarrassment I had about the seizures. If you have ever witnessed a seizure, you will know that they look a little bizarre. I started to become very worried, and ultimately became very depressed. At the time I wouldn’t have told you that my anxiety was up the wazoo and I was so far in the depression hole that I couldn’t find a ladder. I was pretty much unaware of both. Even then, I am good at putting on a good face when I have to. I didn’t want to burden anyone. Plus, I figured that I was just a tired out student. I mean, no one wants to get out of bed on a Monday morning, and sometimes it’s sometimes hard to focus in lectures. Also, students are busy, right? We don’t always have time to eat properly, or at all, which is what happened to me as I found myself less hungry for food, and less hungry for the things that used to bring me joy.
I was pretty much in extreme denial. I just saw depression as something that happened to other people. Oh boy, was I wrong. The interesting thing about depression and epilepsy is that they work together in a happy little cycle. The more seizures I had, the more depressed I became, and the continued depression would cause more seizures. I was afraid to go anywhere on my own, even to meet a friend for coffee nearby. The seizures were so unpredictable that they happened at unexpected times, which left me little to no time to get to a safe place.
This left me feeling trapped in my apartment. I hated to make plans with my friends in case I had to bail at the last moment, or I was afraid of having a seizure while I was out. I started to yearn for the days where I could leave my apartment by myself and just go for a walk without any worries. It sounds so trivial, but when I was unable to go anywhere by myself without extreme anxiety, it seemed like a distant life that was no longer mine.
Slowly and painfully, things started to get better. The seizures started to calm down a bit, and the depression started to ease off. I still remember to this day how liberated I felt when I was finally feeling well enough to meet my friend for brunch. I walked along in the beautiful sunshine, smile plastered on my face, ipod blasting in my ears. It was amazing. I was finally back in my element! I was me again! I was out into the world, no longer cooped up in my little apartment.
This experience taught me a very valuable lesson. Never take anything for granted. Even though being able to meet up with people and enjoy time with friends sounds so trivial, it is essential for ones well-being. I can’t be alone all the time and I need my friends to help maintain the richness of my life.
Also, I’ve learned that, despite this year, I have it pretty good. Other people who live with epilepsy are unable to work, go to school, or are behind in their schooling. Some people even need to wear head protection all the time to protect them if they fall. Four years later, and I finally see why my neurologist was in awe of my accomplishments.
If there’s anything that i believe in, it’s that I believe that everything happens for a reason. (To a certain extent at least). I think this experience has taught me that I need to live in the moment, which I am working on. This is a key component of mindfulness, which is the idea that you are fully engaged in the moment that you are in, and every moment is ‘now’. I find it hard to be in the ‘now’, but part of me believes that the universe was trying to teach me a lesson when all of this was happening. I can’t skip over parts of my life. I have to live them, no matter what is happening. Additionally, many of these past few months have been very low-key for me, just to improve my health, so I have learned to find meaning in this ‘non-doing’. This means finding meaning in what I’m doing, even if it appears to be non-productive.
This story might have been a little heavy, but things are improving and I feel like my old self again.
I find that telling this story to people is like ripping off a bandaid. The more I do it, the easier it becomes, and the easier it is to move on and gather strength, regardless of the situation. xox
For more information about epilepsy, visit http://www.epilepsy.com.
For more information on Mindfulness, check out the book Full Catastrophe Living by Jon Kabat-Zinn, PhD.
I never really knew who to talk to about my body image issues. It seemed like the issue was everywhere, but since no one talked about it I felt all alone. Was I the only one who hated the size of my thighs, wished that my stomach would become a bit flatter, and my hips a little less pronounced? Every time I tried to talk about it with someone, it became the catalyst for the commonly known “fat talk” which engaged other people (generally women) in lamenting about their bodies. It was interesting, too, because even the people that I was sure had no issues with their bodies, found perfection in mine and faults in their own. Take for example, Rachel. She’s 5’11 with not an extra pound of fat on her body to be found. I saw her body as sleek, and her legs were perfect for wearing shorts and she didn’t have to worry about extra jiggle from her thighs. Her breasts might have been on the smaller side, but it balanced out her overall thin frame. When I lamented to her, she told me how she wished her body was more like mine. “You are perfectly proportioned!” She would tell me. I was kind of thrown off the first time she said that. Me? Just your average looking girl is perfectly proportioned? I took it for what it was worth, but it was strange because I never saw it that way.
Now I guess some people might say I have no right to complain about the way I look: I am 5’5” weighing in around 137 lbs. I carry my weight in my hips and thighs, so I would be what they would call “pear shaped”. Like Rachel said, I am pretty equally proportioned, and I am fairly fit because I enjoy working out. Even then, sometimes I feel like people think I am searching for compliments when I tell them about how I feel unhappy with my body. That’s never a good feeling.
About 3 years ago I got into my first serious and long term relationship with a guy. Let’s call him Bobby. Anyways I generally told Bobby everything, but at that time my body image issues were at an all time low. I remember lying on my side in my bed and I would feel how deep the curve was from my waist to my hip. I would cry to him, saying I wish I was skinnier, and how I felt like clothes didn’t look good on me. He was always trying to get me to wear jeans, but I outright refused and just told him that I wasn’t a “jeans kind of person”. The real truth was that I was mortified of wearing any colour on my lower half that wasn’t black. So I spent about two years only wearing lululemon pants, dresses, and leggings. Looking back on it, it seems kinda silly, but I wasn’t comfortable enough with myself to try something that could potentially expose my flaws. I didn’t care how sexy I could look in jeans. It just wasn’t safe.
Anyways, back to the story: Bobby was reassuring and told me that all of this nonsense was in my head. I mean, it was to a certain extent. I was a little bit less fit back then, and my body had more curves. (Curves are totally awesome, by the way, but at that point in my life I rejected them as being even remotely sexy or attractive. Maybe if I’d had a broader sense of what beautiful was back then, I wouldn’t have been so far in the body image gutter). But anyways, even though he was supportive, it came to the point where I needed him to tell me that I was good looking and pretty. My own approval wasn’t good enough. If someone were to ask me what I would do differently, I would definitely not recommend depending on someone else for my own positive body image.
Why you ask? It places your own self-worth on someone else’s approval. Your own opinion isn’t good enough. Also, your boyfriend (or girlfriend maybe) starts to notice these little “imperfections”, such as those tiny little stretch marks on your hips that aren’t actually very noticeable, how your thighs jiggle a little bit when you run, and how your legs aren’t straight as an arrow. Or perhaps, they only saw these “flaws” as parts of you that they were completely attracted to, but then after all the lamenting and complaining, they begin to second guess themselves.
Over the years, however, I have learned to base my self-worth on something more than my body weight and shape. Am I cured of having body image issues you ask? Hell no. Do I still feel self-conscious about the size of my thighs? Well, duh. Do I wish I had a six pack of abs? Who doesn’t! The point is though, that I’ve learned to see what my body is capable of DOING, instead of how it looks while doing it. I am proud to say that I have successfully completed two 5k races, I go to the gym at least 4-5 times a week, and I am conscious of the foods that I put in my body.
I’ve also learned that some guys love women who have a little bit of curve to their body! Fuck me, why didn’t anyone tell me sooner? Maybe because curvy women aren’t really portrayed in magazines and tv shows. I just kind of assumed that my body type was undesirable because it was unrepresented in magazines, on television and in movies. Thankfully I found Women’s Studies during my academic career, and learned that that being bombarded by images of certain body types can really do a number to one’s self-esteem. And the other thing I learned? I wasn’t alone! There is an entire society of people who are unhappy with their bodies! I wish I’d gotten the memo.
At this point, I am tired of trying to be something that I am not. I am tired of dwelling of my so-called flaws. I want to be strong and a positive role model for others, in teaching them that they can be happy with themselves, no matter what their size. I want to talk to young girls, as well as my female friends, and have them know that I support them. I still feel a bit uncomfortable talking about these issues, because its something that I avoid as much as possible. But there’s a good quote that says, you really begin to live when you start living out of your comfort zone. Well, I’m going to try and keep moving out of my comfort zone, and continue to live a healthy and active lifestyle. I never want to feel like I wasted years not appreciating what my body can do for me, and I’m not going to let issues with my body image stop me. xox
You’re probably wondering, why Life at Full Volume? I want to look at many different aspects of life, and to the best of my ability. This blogging thing is new to me, so let’s see where it takes me! xox