Tag Archives: Family

My Biggest F*cking Aha Moment

Today I had the biggest fucking aha moment. I was standing in the kitchen with my mum, after a dinner that my dad had prepared.

I have been going through a rough patch recently, with constant low mood, which has put a damper on my every day quality of living. On some days it is an accomplishment if I make the 15 minute walk to the Starbucks near my house. The depression feels like it eats me alive sometimes…and although I don’t lie in bed and cry, my body feels numb. I can’t feel anything. I tell people that the mental health aspect of the epilepsy is harder to deal with than the epilepsy itself. I have burnt myself with hot tea due to a seizure. No problem. I was able to rise from the ashes like a phoenix with four months of bandage changes, and a period of time on morphine and Tylenol Arthritis. The physical pain was awful, but I could still get through my every day life.

I have gone into a tail spin when I saw that a peer has gotten their Master’s degree in Social Work. As I told my mum so many times, “This wasn’t supposed to happen!” I wasn’t supposed to have my diagnosis changed to Refractory epilepsy. I was supposed to be normal, able to go out without worrying about what people will think when I ask for the disability seat, and not feel like my soul is drowning in depression on the really bad days. You can tell it’s been a bad time when you see me in the same outfit multiple days in a row, or when I need to put clothes on the floor near my bed so I can easily reach them when I have zero motivation to do anything.

Regardless, while we were in the kitchen, my mum put her hands on my shoulders and said “You are doing so, so, well. For someone in your situation, I am so impressed.” I was flabbergasted. What? I was doing well? ME!? On the days that I hide under my covers? The fact that I am not independent? “Yes,” my mum said. “You still get out there and socialize, and you ask for help when you need it. You could just be in a hole, but you make the effort not to be.

WOAH. My mum is right. I could just hide and be in my own little world. I’m not though! I am taking a pre-requisite at a community college, am an active co-organizer of a queer women’s Meet Up group, see friends, practice yoga, ask for help when I need it,  and spend time with my family….to name a few things.

Holy shit guys, I’m not letting life pass me by! I am living it- chronic illness and all!! I am not a failure!!

Love,
Sita and JoJo xox

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Travelling Alone with Epilepsy

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Hey friends!

As you may have noticed I have been MIA this past little while. That’s because I have been on a holiday to Montreal, Ottawa, and Toronto. My friend was getting married, so I decided to make a whole trip of it.

I have been staying with friends my entire trip, so I have no Mom or Dad to run to if something goes wrong. Fortunately, my friends are very supportive of my Epilepsy and know what to do in the event of a seizure, but I have been working hard to avoid my seizure triggers. Today was a particularly seizure-filled day. I ended up having a cluster of 5 seizures within five hours. Yikes! Thankfully my friends were supportive and actually managed to catch me when I was close to falling.

I also have SUPER exciting news! As of July 29, 2016- Life at Full Volume has been running for 4 years!! I am so grateful to you, my reader, who has been able to help me keep this blog going!

I hope your summer is going AMAZING!! Love you lots xox

Why It’s Hard for Me to See People in Hospital

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Hey friends, I have seen my fair share of hospital beds. Due to uncontrolled seizures, accidents, on going tests. You name it. It almost feels like I have the “Hospital corners” in my stories with family and friends.

I need to remember though, that when I have had family and friends in hospital- it is not about me. It is about them. My brother has been in hospital for some very serious surgery. One of these times it was when he was visiting me in Ottawa, and I couldn’t bare the thought of seeing his usual self reduced to a weak and hurting person.

I told my cousin that I couldn’t come to the hospital and he reminded me that we need to “show up for family”. He couldn’t be more right. Me not visiting my brother in the hospital wasn’t about me, but  about him. I needed to be there for him. I remember my own countless hours in the hospital where I anxiously anticipated someone coming to visit me for a couple of hours. It was the highlight of my day.

When I visited my brother….was it painful? You bet. Was it worth it? Hell yes. I still remember a weak smile forming across his mouth as he asked to try on my winter hat (Which he had previously made fun of me for.) I let him try it on, and we walked slowly
around the hospital halls, with all of his IV’s and machinery attached to him. I told him slowly about my day and how my university classes were going.

My brother and I have never talked about this experience, but it was this one situation that taught me that you really do need to show up for friends and family- regardless of how uncomfortable it makes you feel.

Ultimately, showing up through a visit, phone call (visit is ideal if you are close by) says to the person “I love you. I care about you. I hope your health gets better really fast!”
It makes the person in the hospital feel less alone, which is essential.

Lots of love! xox

Let Me Tell You About The Best Day of My Life

joyousAh. The best day in one’s life. It is hard to narrow down. If you ask Moms they will generally say when they gave birth. If you ask newlyweds they will say The Best Day of their Life was their wedding. But I am neither a Mom or a newlywed, so I have a bit of a different answer.

When I tell most people what The Best Day in My Life was, they are often surprised. It doesn’t seem like something that one would put on the Top 3 List. But alas, The Best Day in My Life was my convocation (graduation for university). I was receiving my Bachelor’s in Social Work with a minor in Women’s and Gender Studies. Wait, was it a Masters degree? Nope! Even a PhD? Nope! Did I win any awards? Nope, so this is why people are often so sceptical.

My convocation was the best day in my life for one big reason. I made it through my undergraduate degree, despite the fact that in my final semester I had a terrible injury due to a seizure which made working at the library (or working at all!) very challenging due to the pain of the accident. Thankfully, I have a computer desk (basically a hard top with a soft cushion that you can use in bed) so I lay in bed with my laptop on my lap, typing furiously away. It’s kind of ironic actually, because I was also an academic mentor during that semester, and I told my students that it is not useful to work in bed. I didn’t bother to mention that I didn’t adhere to that rule.

happy balloonsOn the day of my Convocation my excitement was high and I couldn’t believe it was finally happening! I wanted to look my best (call me vain) so I booked a hair styling appointment weeks in advance. The height of my excitement didn’t help, because sometimes extreme emotions (such as excitement or depression) can trigger seizures. I don’t really remember super clearly how it started, but I was waiting in line with my peers, waiting to be called into the convocation ceremony and boom! Suddenly I was outside sitting on a rock talking to a person from the registrar’s office. Thankfully my  Mom and  friends were quick to figure things out and dashed to find where I was. I said I wanted to go into the ceremony, despite the fact that I wouldn’t be able to sit with my peers. According to my friends, the seizures continued throughout the ceremony so I sat backstage with a friend, so I could walk across the stage when my department was called.

When it came close to walking across the stage there were many concerns. Would I fall and hurt myself while walking across the stage? Should someone accompany me? Did I want to be in a wheelchair? I said No, No No! I earned it and I wanted to be on the stage, just me, myself and I. So finally I got in line to go across, and when the announcer called my name I stood on the stage for a full 10 seconds (which is long at these events!) while I heard my friends and Mom cheering from the audience. It was a pure 10 seconds of bliss.

I had finally made it, through all my trials and tribulations. All the seizures during the convocation and beforehand. Even though I had injured myself I still pushed through. This experience has taught me that I can do anything, if I just put my mind to it. It has also taught me that I have an amazing family and friends, as they supported me (and continue to support me) throughout this journey.

pugSo even though The Best Day of my Life was riddles with seizures, that doesn’t matter to me. I had reached a HUGE milestone and was finally going to be taking the next step in my life.

What was The Best Day in Your Life? What is your Ideal best day? I wanna know!

Lots of love xox

We Really Need to Be Nicer to Ourselves

67299-Too+late+love+quotesHey guys! Sorry I’ve been a little MIA, I’ve just been busy with other things.Last week I had a very deep and meaningful conversation with a friend who I haven’t seen in a year. This is a friend who contemplates the world, has a thirst for adventure and connections with new people. Since I have known him for 5 years, it was easy to dive back into conversation, just like old times. We know how to speak to each other on a vulnerable level, and we trust that all emotions are seen as simply that: emotions.

Our conversation slowly came to the topic of “we need to be nicer to ourselves”. It is so easy to get into a mode of self- deprecation, and that everyone else around us is stronger, smarter, and more pretty or handsome. We also noted that people don’t take the time to tell one another how much they appreciate, care and love them. Why waste your whole life never telling your friends and family what you love about them? It seems so pointless to wait to state a person’s wonderful qualities once they are gone, because they can no longer hear about the impact that they have had on the people in their lives.

So, true to that way of thinking, I told my friend how I so admired his spontaneity, adventure, and thirst for learning new things and meeting new people, despite the potential challenges. He also gave me sentiments of how he admired my strength and caring for other people. His words truly touched my heart.

The take away message from all this is quite simple: we need to tell our friends and family the qualities that we appreciate in them. In turn, we need to see our own strengths and be sure to add them to our inner self-dialogue. It sounds easy, but pick one quality you really love about yourself, such as “I am a good listener”. In addition to having positive reinforcements from your friends and family, you will have them from yourself-which is the most important of all.

Hope all of you are well!! Love you lots! xox

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

Living with Epilepsy: Daily Challenges

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So since I’ve been back at school, I’ve been super busy. I’ve been busy with school, adjusting with living a more independent lifestyle, and living day to day while having seizures in between the mix. I love what I am doing at school, and it makes me feel like I’m on a good path, career-wise.

But, I’m not going to lie: I tend to put on a good face even when I feel like crap. It just feels second nature to me. It’s easier to get through the bad days when I put on a good face because I hate burying my face under the covers for days at a time. Also, lets face it: I hate throwing myself pity parties. Also, I feel like I will feel like I am doing better than I am if I put on a good face. It’s kind of a mental mind trick. And I don’t like to focus on all the negative things that are going on in my life all the time. It’s just not fun.

But, since this is my blog, I can write about negative things all I want because I feel other people can benefit from it too. I also feel like it’s cathartic, because I’m actually a pretty private person, and don’t actually let on how much things are affecting me. I don’t know why. Maybe I just don’t want people to worry? Maybe I just don’t want people to see seizures as to completely encompass who I am? Mostly I think I don’t want people to pity me. I hate pity. Mostly I’m trying to understand what’s happening, because it’s very confusing and frustrating. I’m still having seizures every other day, whether in my sleep or somewhere on campus. It’s pretty stressful because besides the stress of being back at school, and the stress of increased seizures, I don’t know what is causing them. I also worry about hitting my head and getting a concussion. I had an incident last week where I came very close to getting a concussion, but thank god I had a Guardian angel who put her hand under my head as I fell during my seizure so I didn’t hit the tile during the seizure.

I find though, that being social helps me take my mind off my worries. Last night I met up with one of my friends and we went to the mall and tried on clothes. We chatted and laughed and then we went out for dinner. Just by socializing and laughing made the stress go away. Since I know that I always feel better when I see my friends (plus I love my friends!) I always make sure I see a few friends every week. That prevents me from feeling isolated, which makes me focus even more on the seizures.

Take away message: I am still doing everything I want to do despite these silly health problems. Some days I feel pooped, but that’s what tea is for. Or sometimes I go to bed early. Or, if I have a seizure mid-day, I just have to cancel plans and go to bed. It’s reality. I’m not giving up, just working at my own pace until things are under better control. I am so thankful that my University is so supportive and I have a network of supportive friends and family, plus an amazing boyfriend. **Deep Breath**. I feel better already. I hope you’re having a great day. If you’re ever having a tough day, look around you and remember your support networks, or the little things that make things beautiful. It helps to make life better. Hope you’re all doing well! Love you all! xox