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Andrew
Andrew
When I was around one or two years old, people around me noticed that I could not stop eating. My parents thought nothing of it at first, but eventually took me to the doctor. Similarly, my doctor too thought nothing of it, chalking it up to just “impulsivity”.
After my 9th birthday, my family noticed I was angrier - often lashing out and inexplicably ticking.
Eventually, my parents took me Sick Kids in Toronto, where I was diagnosed with Tourette syndrome along with severe obsessive-compulsive disorder, attention deficit disorder, extreme learning disabilities and autism.
Learning of my diagnosis left me feeling quite ambivalent - scared because I wondered why I had I, yet relieved to know that my condition had a name. In a way, it humanized the condition to me, as it didn’t seem like I was alone in having Tourette’s.
But I was often left afraid of falling back into the darkness that engulfed me prior to my diagnosis. I worried what people would think. Would girls look at me differently? Would people treat me differently at school because of my condition? Would I have any friends?
However, people were nonetheless kind to me. I was never attacked or bullied due to my condition, and I was treated with respect. Of course, there would be the odd question like “why can’t you stop?” or “can you quiet down?” But I would always explain to them “I can’t, I just don’t have control over it”.
Luckily, at the age of 17, my Tourettes syndrome began to improve, and my condition steadily got better.
With my condition steadily improving, I applied and got accepted to my first job in 2007, as a cashier at Loblaws. I continued to work there for 8 years, and afterwards left to work for the Toronto Police Services. After a short stint there, I applied and was accepted to my dream job at Rogers working in IT Operations.
I can say with pride, that I have never missed a day of work due to my condition. It is an empowering feeling to know that my condition has not come in the way of my profession.
More recently, I have just purchased my first condo in on Yonge Street in Toronto, with a great view of the city.
When I think back at my life, and my journey battling Tourette syndrome, I can without a doubt say that I feel proud of myself. That isn’t to be cocky, but more so to remind myself that I was able to fight through my condition and persevere. I am proud to be in the position I am today given my condition. But most importantly, I am proud to not be defined by my condition.
Although I have made immense progress with my condition, I still occasionally struggle. For instance, I have an impulse to complete things as soon as possible and not getting something done right there makes me feel anxious. I also often take things quite literally - one time asking, “where is the stone” when someone told me “the rules are set in stone”.
I have been blessed with a loving family that has supported me through every hardship through my life. I can quite definitely say that without their love and support, I would not be where I am today. Being around my family is when I’m at my happiest (apart from watching the Jays play). Watching baseball, especially live at the Rogers Centre, is an experience that takes me out of my body. As an adolescent, I was glued to the diamond every time I went to watch a game. Watching the Blue Jays play kept me calm for three hours - I was solely focused on the game and nothing else.
I’ve interacted with doctors quite a bit throughout my life and something I believe that is important for them to know is that each individual is unique. Their condition, diagnosis and treatment are all different and it is rarely a ‘one-size-fits-all’ type situation. I believe it is important for them to understand that they cannot treat all Tourette's patients the same. Every individual has a unique way of combating their condition and what works for one individual may not for another.
At the end of the day, I want people to see me as Andrew first foremost - a kind and caring person who is empathic towards others and does not want to be defined by his disabilities. As a leaving piece of advice, I want everyone reading this to be proud of who they are, irrespective of their disabilities or imperfections, and embrace their individuality.
Emily
Emily
As my family and I crossed the Gulf of Mexico to get to Cuba, I felt extremely sick on the plane. I remember not eating at all and throwing up. After coming back home, I still felt sick and was not able to go to school. And that's when it happened.
February 25th, 2016, I had my first tonic clonic seizure. I had no idea what happened to me. All I know is that I blacked out, and woke up to my family in a panic.
My family took me to see the doctor, to find out what was wrong with me. I was just told that my seizure was due to a lack of nutrients. However the doctors did believe that I had a long QT wave at the time. Throughout the next few months they ran many tests before a cardiologist said it was probably a one time experience. This explanation eased us, and we did not think too much about the seizure after that.
A few years later, while I was in the 9th grade, I had my second seizure. Something had to be wrong with me this time. It could not have just been a lack of nutrients. I thought it had to be epilepsy. My family rushed to Sickkids Hospital, where I first met with a cardiologist.
The cardiologist told me the seizure was likely neurological, as my QT wave was still normal. I was then referred to a neurologist who annoyingly told me that I couldn't be diagnosed with epilepsy, as my second seizure occurred a few days after the two year mark since my first seizure. I had to have had my second seizure within the two years.
I wasn’t officially diagnosed with epilepsy until a few weeks later when I had another seizure. Since then, it's been a guessing game for medications, seeing what works and what doesn't.
My diagnosis scared and confused me. I didn't even really know what epilepsy was. I had probably heard the word epilepsy a few times in my life, but I never paid it any real attention. The research my family and I did on the condition overwhelmed me. It was a lot of “this can happen, watch out for this, don’t do this, don't do that.” It was just so much information at once.
The scariest part was knowing a seizure could happen at any time and place. Usually, a few minutes before a seizure, I will black out. There are no warning signs before a seizure, nor do I have any control over it. That’s what scares me, the unpredictability.
I am never allowed to be alone. I always have to be with at least one other person. At home that means that I am either with one of my parents or my grandma or my cousins, just in case I have a seizure.
I had to explain to friends and teachers after getting the diagnosis, because I could have a seizure during class. I had to explain to my teachers what epilepsy was and what the emergency protocol was. It was tough because I was trying to learn about it myself.
My friends wanted to know what they could do to help out. They were extremely supportive and very worried about me. All they wanted was for me to be safe. Some of them have seen my seizures before. They were there for me, helping me catch up with school work if I missed a class. My friends made sure they always had my parents' numbers, in case I have a seizure. This one time I was with a friend while we were at the library. I had a seizure and my friend knew exactly what to do. If none of their phones worked or they didn't have a phone, my friends knew my phone password, so they could get into contact with my parents.
The unpredictable nature means plans may get cancelled at the last moment, because I might have seizures in the morning and I need to rest afterwards. But I do my best to avoid the common triggers of seizures such as lack of sleep, dehydration, flashing lights.
I didn’t want to be limited by epilepsy. I grew to develop this can-do attitude. There may be things I can’t do anymore like staying up late with friends, but I still want to live my life. By making sure I was careful I could still do the things I cared about.
Even after being diagnosed with epilepsy I still did kickboxing. I also joined my high school wrestling and archery teams. I was always aware of my limits and stayed within them. I avoided the triggers of seizures like dehydration and lack of sleep, and was careful about avoiding head injuries. I was also in the regional strings program, and played violin. Before my performances, my teachers would speak with me and together we decided that there would be no flashing lights on stage. With the support of my friends, teachers and family, I was able to do so much in high school. Along with journaling, and talking to a therapist at Sickkids, these activities gave me an outlet for my frustrations.
I am inspired everyday by seeing my loved ones dealing with their own challenges and finding a way to live their lives as best as possible. For example, my grandmother is 86 years old. She lives in our house, which has a lot of stairs. Despite this she walks up and down the stairs with laundry. One of my really close cousins has a mental illness and seeing how she gets through the difficult moments is really inspiring.
And then there are my parents. They didn’t expect to have a child with epilepsy. Now they have to adapt to life and work. For example, if one of us around the house makes a loud noise, we all yell out “I’m good.” This is so my family doesn’t panic when they hear a loud thud, and think that I collapsed.
My mom in particular has always been there for me. She gets upset when I do something dumb that puts me at risk, because she is worried about me. My mom has always been there when I have had seizures or emergencies. She knows if I have a bad headache or nausea.
Personally, I panic after I have a seizure. That's because I feel sick. It reminds me of how I felt the first time I had my seizure, and I don't know what's going on. The fact that my mom is there, as a calming figure, even if she is afraid on the inside, helps to calm me down.
My family inspires me everyday. Because of their support I got accepted into 5 universities this year for a bachelors in arts! Finding out I was accepted was the happiest moment in my life since learning I had epilepsy. I originally wanted to be a lawyer one day, but after taking a class on law in school, I decided that I wanted to do history instead. I love learning about history, especially about ancient civilizations and it's what I want to pursue in university. I have loved that since I was a kid, because I enjoyed reading about mythology. While I am not sure what I want to do with my career, I am excited to get started.
Still though, there are moments when epilepsy frustrates me. For example, I got into my dream school, University of Windsor, but I can’t go because I would be too far from my parents. Getting in was a huge thing, because it showed me that while I couldn’t go, it still meant that my marks were good enough to get me into the program. It meant the world to me, because I was diagnosed with epilepsy at the start of 9th grade. Despite that, I still did well, I got excellent marks and now I got into my top choice. It was a huge confidence boost. However now I will be attending McMaster University in the fall. They offered me a scholarship, the cousin I have known all my life goes there, my friend is going there, so I am really familiar with the university.
I want the world to see me as someone who is determined. Someone who never gave up despite the challenges. I never want to be viewed as being weak. I never want to be told I can’t do something because of epilepsy. If I was told that, I’d probably do it out of spite, (so long as it wasnt dangerous). Telling me that I can’t do something because of epilepsy is like telling me I can’t do something because I am a girl.
One of the things I am passionate about is raising awareness about epilepsy. This is because everyone I have ever talked to about epilepsy, had no idea what it was before I spoke to them. I want to contribute to improving public knowledge. My therapist at sickkids gave me the idea of going to Epilepsy Toronto to contribute to raising awareness. I was even on an episode of Live with Lily to talk about living with epilepsy.
In my efforts to raise awareness about epilepsy, I want people to understand that everyone’s experience of epilepsy is different. There are different types of seizures with different triggers. The treatment for one person may not work for someone else. At the same time I want people to understand that just because I have epilepsy doesn’t mean that I am all too different from them. I am pretty much the same person I was before I was diagnosed, seizures are just something that happens occasionally.
I also want doctors to treat me as if I know what I am saying and hear what I am saying. The first neurologist that saw me did not listen to me at all. The neurologist did not listen to me when I spoke about my feelings, or when I said the medication wasn’t working, or was experiencing really bad side effects. One medication that I took kept putting me to sleep, even if I wasn’t trying to sleep. Even if I was just sitting in a chair, I’d fall asleep. To make matters worse, the seizures didn’t stop anyway. What good is the medication, if the medication is not allowing me to live my life? But still, the neurologist did not listen. I know I may not know the medical term, but I do know what I am feeling. The doctor brushed off what I said, because I was still a kid. I really want that to change. Physicians and other healthcare professionals need to take into account how someone feels when thinking about what medications to prescribe
Dalia
Dalia
I remember the beginning well.
I had just come home from having dinner with a close friend, and decided to go to bed. All of a sudden, I realized I could not completely feel my abdominal area. Startled at the lack of sensation, I tried to rationalize the situation; thinking it was probably a pinched nerve. Yeah, that's it, I thought. Definitely a pinched nerve, from exercising earlier. I fell asleep not thinking too much more about the incident.
However, soon after, the issues persisted and slowly became harder to ignore.
My right leg went numb.
The right side of my face began to droop.
I couldn’t hold my makeup brush. It became hard to do the fine details of my makeup.
My left foot dropped.
I was terrified. My then boyfriend, Michael and I rushed to make an appointment with my General Practitioner.
April 25, 2018. That was the date of my diagnosis. My General Practitioner carefully reviewed my case and suspected multiple sclerosis. An MRI all but confirmed her suspicions, with my new neurologist cementing my fate. At first, I was elated. I even told my boyfriend I wanted to go out for a beer and celebrate.
However, Michael, who is a doctor as well, helped me to fully understand why it wasn't something that we should be celebrating. He had every reason to be anxious. Michael’s father also had multiple sclerosis, and so he had seen the effects the condition has on someone first hand.
Michael knowing about multiple sclerosis made it all the more meaningful, when he told me that he wanted to stay with me and face the future together. Despite knowing that it was a progressive disease, he was determined to stay with me.
Day to day, the fear of what will happen is still there. Since multiple sclerosis is a progressive disease, the uncertainty, the fear of the future is always somewhere in the back of my head. I do not know when my condition will get worse. Will I need a wheelchair? A walker? What if I have kids? Will I be able to take care of them?
Still, though for the most part I am feeling good. I try my best not to dwell on multiple sclerosis. I like focusing on the day to day and having the best day possible. I know that dwelling on fear can really mess me up, prevent me from doing the things I want to do and lead to spiralling. I am feeling better as my physical symptoms are not progressing.
As a woman, I feel that we are expected to do a lot and get it all done regardless of the situation.
I had to learn how to adapt after my diagnosis, so that I could continue to live my life and work on my goals. For example, I made sure I was eating healthier and getting enough vitamin D every day. Also, because I wasn’t able to tolerate crazy heat, I made sure that I always exercised in cooler environments.
I also had all the help in the world from those closest to me. The happiest moment of my life since being diagnosed was marrying Michael. He has been incredibly supportive. Seeing him so dedicated to his work as a physician, but also being there for me as a spouse has always influenced me in a positive way. My father in law has also been a big help. Since he also has multiple sclerosis, he is always willing to be a great resource for me.
I was also able to meet a lot of friends through the multiple sclerosis community. We are a tight knit group, always there for each other, with advice or kind words. I know that after getting a multiple sclerosis diagnosis, some people are shunned by their families, friends or communities, but I can honestly say that I have never experienced that. I am really lucky.
These sorts of changes really helped me to work on my goals. I did not want to just be seen as a person with multiple sclerosis, I wanted to contribute to the world in a positive way. I might have multiple sclerosis but multiple sclerosis doesn’t have me.
One of my most important goals right now is to start a family. I really want to have kids soon, because I know I can’t take harder multiple sclerosis medications until I have children. My doctors, my husband and I are worried that if I take the harder drugs while pregnant, the medications may harm the pregnancy. This is another point of anxiety for me because what if my condition progresses soon? I will have to take the drugs to halt the progression, but that might affect the pregnancy.
My other immediate goal is to finish my masters of science in clinical mental health and become a registered therapist. I want to focus on helping the adult population through times of trauma and crisis. I also want to use my own experience with multiple sclerosis to help those who have chronic illnesses, because i know it can really affect a person’s mental health.
Psychology is really something that I fell in love with in my undergrad, as I studied therapy during my bachelors. However, my road to doing a masters was kind of strange. After my undergrad, I did a diploma in public relations, and worked in marketing. I always knew that I wanted to be in therapy, but I was worried about the time and cost of further schooling.
It wasn’t until Michael and I moved to Virginia that I decided to go back to school. We moved here, because Michael couldn’t find his ideal medical position in Canada. Since I couldn’t work in Virginia, I had to find a new way to be productive. It was a difficult transition for me as it was the first time in 15 years that I wasn’t actively working. But I am really proud of myself for being able to go back to school and working to become a therapist one day.
There are still challenges that frustrate me. Virginia is super hot in the summer, and I can't handle it some days. I get sick from having to deal with the climate here and it's scary. I am always on edge about the heat. It is always something this is in the back of my mind.
Still, I find things to inspire me on a daily basis, that helps me get through these challenges. For example, I absolutely love what I am studying. I am passionate about my schoolwork and I can’t wait to become a therapist one day. Also, I love being able to contribute to the household, and helping my husband. He is pretty busy, and knowing that I can be there for him is something that motivates me.
That’s along the lines of how I want the world to view me. I want the world to see me as someone who was diagnosed, but thrived in spite of it. I want everyone to see that I can contribute in a positive way. I want the world to see that I am genuine and empathetic. I am more than my diagnosis.
If there is one piece of advice I could give to the public, it’s that people are all different. Everyone’s journey is unique, and no two stories are the same. Because of this, you can’t assume people are okay if they just look ok. Many people may have invisible symptoms or cognitive things going on, and you can’t automatically assume that they are fine. On the flip side, you can’t assume people who have multiple sclerosis are damaged goods. We are all doing our best to make sure we can still have the lives we want, and also contribute to the world in our own ways.
If there is one piece of advice I could give to doctors, from my own experience, it's that I know as it's easy to get caught up in the list of appointments and just trying to get through seeing all the patients. But it's important for physicians to really understand that all patients are anxious. Even if they are seeing the doctor for something that may be simple, they are still worried on some level. It means so much if the physicians can take the extra time to focus on the human experience, and really listen to the patient’s concerns and fears. My own doctors did this and it made all the difference in the world. A little kindness goes a long way. Be patient with your patients.
Isabel
Isabel
“I first became interested in neuroscience during my first year of undergrad at McMaster University where I took an introductory psychology and neuroscience course. This course covered the basic neuroscience of the five human senses (smell, taste, touch, hearing, and vision). I remember sitting at my desk studying how our brain allows us to see when I realized that a three-pound organ within my head has the ability to control my entire existence. This concept completely baffled me and is what led me to specialize in psychology, neuroscience and behavior for the duration of my degree.
One of the things that I loved about neuroscience was that it fit my personality pretty well. Neuroscience is a challenging field and I am most definitely up for that challenge. What is so fascinating about neuroscience is that the brain is like a puzzle. All the different regions of the human brain are responsible for different processes, but they have to all work together in order to allow us to function on a daily basis. As a person who loves a good challenge and to solve a good puzzle, the field of neuroscience really spoke to me. I also love the fact that there is still so much that we do not know about the brain. Regardless of how far we have come in terms of scientific research and discovery, so much of the brain is still a big unknown.
Although I loved neuroscience, I struggled immensely during my first two years of undergraduate. I found the adjustment from high school to university very tough. Living in a new city, not knowing many people, and having an intense workload, I struggled to get good grades and find extracurricular opportunities...."
“I was lucky enough to have a professor who really helped me along the way. I’ll never forget how Dr. Hongjin Sun, my neurobiology professor, took a chance on me based on the passion for neuroscience I displayed, by giving me a volunteer research assistant position in his lab. This allowed me to discover my niche and passion for research, which ultimately propelled me to work harder and discover my long-term career goals. It was my supervisors ability to identify my passion, while overlooking my poor grades at the time that allowed me to develop my identity as a researcher.
My best friend Rehona Zamani, has been a big influence in getting me to where I am today. She has played a huge role in helping me to identify my interest in STEM and has consistently been a positive reinforcement in pushing me towards pursuing my goals. I was unsure as to what it was I wanted to do and found myself constantly comparing myself to other very high achieving students. I believed that I wasn’t intelligent enough to succeed in a STEM degree. Rehona, who is a medical student at the University of Toronto, always told me that I was smart enough and capable. She played a huge role in boosting my self-esteem and self worth, which ultimately led me to take a chance and pursue a STEM degree. I am extremely thankful for her unwavering belief in my capabilities and for acting as a never ending support system. As a first-generation immigrant from Afghanistan, she has also been a huge inspiration in terms of her work ethic and drive towards science and medicine. Watching her grow and how hard she has worked to obtain her goals has been a huge inspiration for me."
“STEM careers are competitive to get into. For the most part, STEM careers require some form of higher education, whether that be a masters, PhD or medical school. Something that continually struck me throughout my undergrad was the level of competitiveness put in place just to enter these programs. For instance, the programs of which I have applied to have on average a 3% acceptance rate, which is very similar to medical school and other graduate programs.
This realization hindered my motivation for a long time and led me to believe that I didn’t stand a chance in comparison to all the other highly intelligent and self-motivated individuals in the field.
However, I am a strong believer in the notion that if you want something enough, and are passionate about it, you can achieve it through perseverance and hard work. With time I learnt that passion overrides all else. Push forward with tenacity and believe in your own potential because at the end of the day your drive and passion is what will make you stand out amongst the crowd. My own perseverance soon began to pay off. "
"This led me to my current research project in the field of mental health, which I am extremely proud of. I am working on a review regarding the efficacy of culturally-adapted cognitive behavioral therapy for the treatment of racial-ethnic minority mental health in Canada. My work over the past year on racial-ethnic minority mental health has been an utterly amazing experience and has helped me to discover my research passions.
I ended up taking a course on mental health and illness. In learning more about mental illness, I came to find it unbelievably fascinating that mental illness is the one form of physical illness of which we are unable to visualize or diagnose with complete certainty. For instance, you cannot simply put an individual into an MRI machine and provide a concrete diagnosis of schizophrenia or bipolar disorder. From here I grew to learn more about the stigma surrounding mental health, a concept that has always baffled me. Simply because mental illness cannot be seen with the human eye (be it under a microscope or not), does not diminish the fact that it is an illness, as is any other physical illness. This is what really propelled me into wanting to foster a career in the field of mental health in hopes of raising awareness regarding the stigma surrounding mental illness and educating youth on the notion that health is health, be it physical or mental.
This led me to my current research project in the field of mental health, which I am extremely proud of. I am working on a review regarding the efficacy of culturally-adapted cognitive behavioural therapy for the treatment of racial-ethnic minority mental health in Canada. My work over the past year on racial-ethnic minority mental health has been an utterly amazing experience and has helped me to discover my research passions.
I want to continue this kind of research into my graduate studies in Clinical Psychology this coming September and eventually work as a clinician with underrepresented Canadian populations. I am not just proud of my work but of everyone else in the field of cross-cultural clinical psychology for the amazing and extremely important work they do."
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