Tag Archives: disability

Dear Diary: Confessions of a Millenial

Hey bb’s,

20180204_155752.jpghave run into a problem recently and I feel it needs to be addressed.

I was talking to my mom on the phone today, and she said it was fine that I quit doing something that I was pursuing. But here’s the thing: Why did I need HER permission to do something?

First of all, I am a 27 year old woman. Why do I need to ask permission to do something in life? I feel as though we need to hear  voices of others before we proceed in life. (This is not everyone, but I have noticed it in life). Why do I need permission to take a self care day? To not go to something I was invited to? My friend pointed out that it has to being good, being a woman, and to not trust yourself.

This is stunting us from becoming adults here! Especially as an individual with a disability, I need to be an adult so I can advocate for myself. My parents aren’t going to be around for me forever, and my partner can’t be there for me at every beck and call.

If we constantly ask for permission for something that we need to do, there is going to be an entire generation of people running around needing permission to make the next move in their lives.  I am not saying every person in the Millennial generation is like this, but I feel that it is prevalent!  When I was a teen, and still sometimes today, I will sit down with myself and give myself pep talks. When I was 17, I sat myself down in my room and said”okay, go away for university. All of your friends are leaving. It is better to have left then be left”. What happened to me giving MYSELF permission?!

I am going to work on it…if it’s an issue for you too, work on it with me too.

Peace.

Love,

Sita & Jojo

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That Awkward Moment When People Ask Me What I do for Work

Happy-at-work

Hey friends! How are you doing?? I hope you have sunny weather, depending on where you are in the world. It has definitely been heating up where I am.

So, whatever your disability is, I am sure you can relate to this in some respect. I am currently not working, and wherever I go people ask me what I do for my job. Why, people, why?! Why are we so obsessed about work and jobs? I guess it’s because we spend five days a week, 40 hours (or more! Or less, depending on whether it’s full time or part time) at our jobs. Our jobs sometimes become our lives. We can become immersed in our work.

I can get that. People go into their professions and are highly passionate about it. I have friends who are in an interesting melange of professions: IT, Social Work, Counselling, Environmental Engineering, Midwifery, Business and so on and so forth. I don’t think my friends just stumbled on to their professions and decided to roll with it. They found something amazing and interesting about that profession that made them want to pursue a career in it. I totally believe that having passion for your work (whatever it is!) is key for enjoying it, and constantly challenging yourself. So, since I am not quite healthy enough to work full time, it can be awkward in these social situations. I have thought long and hard about what to say when someone says “What do you do??”

I tell them I am working towards a Masters in Social Work, and would ultimately like to work with individuals with disabilities. I tell them about my interest in Women and Gender Studies. It is not something I am doing right now, but they are all truths. I will be better, so I will be able to fulfill these dreams and goals. This isn’t wishful thinking, honey. I am already getting better! My resilience has gotten me far, as well as my sheer determination to never give up.

So will I have another awkward conversation like this again? Probably. Is that okay? Absolutely. It’s only awkward if you make it so.

The Challenges of an Invisible Disability

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Firstly, this is only meant to be from my experience and about living with Epilepsy. It is not meant to be a compare/contrast piece about physical and invisible disabilities. Everyone has their own experience and I can only speak from my own experience,

The challenging thing about living with epilepsy is that it can’t be seen on the body. Except for some bruises that I’ve gotten from falls due to the seizures, you can’t tell that I have a seizure disorder.

When I was a child, my epilepsy was not something I needed to share with people because my seizures were well controlled and I never had a seizure in public. Only my family and very close friends knew that I had epilepsy, but I could hide it and be seen as more than just “Sita with seizures”. As I’ve gotten older, I’ve needed to learn how to disclose, and tell people the appropriate first aid. It can be awkward to talk about, as seizures are not tangible and I’m scared with how to the other person will respond. On the other hand, I try to take the approach of being really calm and relaxed about having seizures, with hopes of the other person will feel relaxed as well.

I hate having an invisible disability because I can look like I’m doing well while in reality I can have a headache, and feel like I’m going to have a seizure because I’m feeling triggered by hot weather. The other thing about having epilepsy, is that it’s not obvious. For example I was waiting for the skytrain (like a subway), and I felt a lightning bolt go through my leg (not an actual lightning bolt). My leg started to shake and was rigid at the same time. I tried to stay calm and at the same time I managed to hop sideways to prevent myself from falling over, but to an onlooker this behaviour probably looked ridiculous. Most seizure activity to a person unfamiliar with seizures looks bizarre. This is frustrating because seizures can be mislabelled as “drunk behaviour” or being on illicit drugs. Also, since there are so many different types of seizures, people don’t always think to respond or they’re not sure how to help. Some of my seizures can look like anxious fiddling (clenched fist, tapping fist, rigid leg) so I can have a seizure and people won’t even notice. Although it is more obvious if I am standing or on a chair where the seizing causes me to slip out of it. Sometimes I just collapse, which causes people to assume I’ve had a heart attack or stroke. I am so thankful that my seizures are short.

Thankfully I have had people help me when I’ve been in tough times. Don’t get me wrong, there have been many people who have rushed to help me when I have been alone and had a seizure in public. One time when I was on a bus I was sitting on the aisle seat. I started to have a seizure and started to lean towards the aisle close to the woman who was in the row across from me. She didn’t know what was going on but she grabbed my shoulder and yelled to the driver “I think something’s happening here!” The seizure lasted only 15 seconds or so, but I thanked the woman for grabbing me. “I wasn’t sure what to do, I hope I didn’t hurt you!” The woman said. At that moment a hurt shoulder was the last thing on my mind. I was so grateful for the woman’s quick reflexes. Even though she had no idea what the hell was going on, she saved me from doing a nose dive into the aisle of the bus.

I feel like there’s also not enough public knowledge about epilepsy and seizures in general. This is partly why I started this blog. I wanted to get more information about epilepsy into the public, and if I could at least get more first aid information into the general public, I could feel more comfortable living as a person with epilepsy on a daily basis. Since my seizures are more frequent, I feel the label of being a person with epilepsy more so than I did when I was a kid. This is very difficult. I hope that having epilepsy doesn’t shut doors to different opportunities, due to stigma or misinformation about seizures. I am just going to continue on, as I would without this condition, and explain to people that having seizures isn’t a big deal. I just can’t let them stop me in my tracks, because I’ve done too much work to not keep going.

epilepsy care bare