oliviawithFA.com

Hi, my name is Hasitha and I am a FA’er in India. I was diagnosed with Friedreich’s Ataxia when I was 10. This diagnosis took a mental toll that lasted all of my childhood but, it shaped me into a beautiful young adult. FA is a genetic disorder that basically affects our balance, coordination, and movement. To know more about it, I repeatedly write in my blog, Lifewithhasi.com.

I’m a graduate in Biotechnology and looking to do my PhD in neuroscience or genetics even. After the pandemic, all universities have been shut and I thought of following my interests during these times. My passion for writing led me to start a blog at Lifewithhasi.com and courageous personality made me start a youtube! I use both of these platforms to raise awareness not only about FA but, disability in general!

Youtube link: https://www.youtube.com/channel/UC_uhC5nYOxYQefcIwZpfxeg

Social Issues for people with disabilities in India

As a wheelchair user living in India, I feel that more than the disease itself, the problem lies with the environment that surrounds us and the society we live with. I am pretty confident and experienced now but, initially, I had a tough time dealing with my inner battles as well as the nosy Indians.

Human Etiquettes

In India, people often have their own notions about people with disabilities. Apart from their constant, sympathetic stares, they believe that disabled individuals have zero potential. They often discriminate us and some even rudely deny us to enter their place! I understand that the human brain is constantly curious. But, it is not polite for a random stranger to come up to me and ask me, “What’s wrong?” If I would get a dollar every time a person questioned me then, I’d be a millionaire!

Environment

It is not at all accessible in India. As a girl who loves to travel; I’m disappointed by most of the accommodations and I would end up being carried anywhere that I need to go. The wheelchair makes me independent but, the environment is making me more dependent on my fellow Indians. Some places are accessible but, they are mostly expensive places like 5-star hotels, malls, and airports. Man, it is expensive to be disabled!

Apart from that, the accessible washrooms tend to not work or be occupied by abled-bodies which is so insensitive!

Employment

India is overpopulated and has billions of people living in this country. Due to the competition, it is difficult for an average Indian to get a job. People with disabilities tend to get rejected as soon as they come to know about their condition. However, some companies are working toward diversity and inclusion but, most are left unemployed.

Treatment

India has a range of medicines. Apart from allopathy, there is homeopathy, Ayurveda, and many more which I have tried. All are nothing but false hopes. Indians are deeply connected to god and they believe mantras and all which can cure FA. All of these drive me nuts, but my hope is only toward the research happening in the USA on gene therapy.

The main problem is a disability is a spectrum and many fail to acknowledge that FA has a genetic cause. Anyway, these multiple trials and errors have taught me the importance of expectation. To know more about that, I’ve written about the bitter truth behind hope here: https://www.inkspiremag.com/2020/03/creative-non-fiction-renovating-meaning.html

The FA Community

What makes me envious about the USA is that they made a community for FA, there are activities they do and together they spread awareness. There is nothing of that sort in India. All the people that I’ve met online and some I became close enough to meet. I really wish to meet the community when I do travel to the USA.

Conclusion

I always wished for India to become more like the USA (As I spent most of my years there) in terms of inclusion as well as accessibility. I’ll be posting Olivia’s version of living with FA in the USA at lifewithhasi.com so please check it out!

I have youtube and Instagram where I actively spread awareness on the difficulties we disabled individuals face. Please support me. Thank you!

IG: https://www.instagram.com/turning._.point_/

Youtube: https://www.youtube.com/channel/UC_uhC5nYOxYQefcIwZpfxeg

-Hasitha

COVID-19 and Me

As you all are aware, the major epidemic of COVID-19 has occurred and came to halt just about everything.

Myself, have been in my house for approximately 5 weeks. I cannot risk getting COVID-19, as my risk for severe complications is much higher than the average person. Having a general cold makes me almost unable to walk and also affects my vision and overall it feels like I’m dying, no joke. The average could just get the sniffles and cough but not for me, unfortunately.

Precautions have been taking place in my house. We disinfect everything, shower every day thoroughly, and try not to be super close to each other. We do not wear masks or gloves inside UNLESS if we have visitors.

 

Social Life

I hate being at home. College was moved completely to remote instruction, for the summer semester also. I never thought I would miss going to class but I really miss it now.

Thank goodness for current technology and Facetime but it is not the same as seeing my friends in person and going out.

Honestly, I am so bored but I am taking this as an opportunity to better myself. I have been focusing way more on school, self-care, going outside more, my health and fitness.

I’ve been contacting my friends every day to check in on them and see how the quarantine life is treating them. Where I live, COVID-19 cases have skyrocketed and I think we are almost at 20,000 cases. Many are not listening to the whole “social distancing” thing and it makes me annoyed. Why do people have to be selfish? They are putting individuals in grave danger and if they would tough it out and stay home, this outbreak will get much better and the cases will reduce faster. The sooner they listen… the sooner we can start easing the restrictions.

 

Conclusion:

I haven’t posted in a while due to all the chaos going on in my life. I apologize. I truly hope this whole pandemic gets better sooner than later.

Stay safe and inside PLEASE!!!

~ Olivia

Introduction

For those that do not know, I recently started college PHYSICALLY, which is a huge deal for me as I’ve been homeschooled through my whole high school career. During my first course, I got to write a report on any social issue and present it to the class. Nobody truly understands the social issues, us with impairments or injuries, struggle with almost daily. Therefore, I decided to write and share my report on people with physical disabilities. These problems are big and deserve to be resolved so here’s my outlook.

Social Issue report on: People with Physical Disabilities

   In today’s society, people with disabilities are often treated much differently than healthy individuals. As a disabled individual myself, I have firsthand been a witness and victim to this issue. I have a rare degenerative neuromuscular disorder/disease called Friedreich’s Ataxia. Having a major health issue such as this causes Florida insurance rates to rise. This has been a particular issue with auto insurance. According to npr.org, “Countries should guarantee people with disabilities the right to the highest possible standard of health without discrimination.” When strangers encounter someone who is impaired, there are often a variety of reactions. They may stare distinctly at us or even treat us like we aren’t human beings just like everyone else. Sometimes they whisper to each other, thinking that we cannot hear or see them. It is human nature to have curiosity, but this can be rude.

   First off, the public needs to learn proper etiquette when seeing a person with ailments or injuries so they can understand how to better interact with us. My health issue is physical, not mental, and yet I notice that people like me often endure stares and whispers, which really takes an emotional toll and I don’t think people understand that. I serve as a FARA Ambassador for my disease/disorder, to help newly diagnosed kids/adults go through the major emotional toll the diagnosis takes on them. I also help them achieve a better mindset when entering society publicly and work towards changing society’s negative attitudes/behaviors. Finally, I spread awareness to help raise money towards a cure.

   Another issue I have noticed as a member of the disabled community is that many people with this specific disability or other impairments are in wheelchairs and require ramps when driving or going somewhere. Often, ramps are broken and/or crumbling, and it tends to be very hard going up one in a wheelchair, especially if you’re alone and no one can help push the chair. This leads me to another social issue, public restroom stalls for the physically disabled. Perfectly healthy individuals use the stall for a bigger space when using the bathroom instead of thinking that someone with an incapacity may actually need it.

   Employment is also an issue for people with physical problems. Many businesses may not want to hire us because we can’t do the things that normal people can do. “Only 18 percent of 193 constitutions guarantee the right of people with disabilities to work” (as stated on npr.org) which is a big problem for us, as we need to make money for our medications, health tests, insurance, housing, food, etc. If jobs are really hard to get, then it will be very hard to stay as healthy as possible. Today, this world revolves around money and you need money for almost everything you do, particularly as a person with a disability.

   In summary, society today needs to learn how to help the physically disabled instead of just pushing us to the side. There shouldn’t be discrimination or additional limitations for us. We need to be given the opportunity to perform to the best to our abilities and not always be reminded of the disabilities we did NOT wish to have in the first place. Knowing all of these issues exist in society, I am motivated to become a better advocate for people like me so that these issues can begin to be resolved. We are normal people, just with some abnormalities and society needs to realize that and help us out.

 

SOURCE:

– https://www.npr.org/sections/goatsandsoda/2016/12/18/504964701/how-is-the-world-treating-people-with-disabilities

 

Conclusion

As you can see, we tend to suffer from some major issues such as: employment struggles, how people approach others with disabilities, disabled bathrooms, and some others that I may not have included in my paper as they were not top priority. Hopefully soon, these problems will be resolved somehow, someday. Thank you for reading!

 

~ Olivia 🙂

 

Introduction

Like Forest Gump once said, “life is like a box of chocolates… you never know what you’re going to get.” No one knows everything we have, or are going to get, but we all have something or eventually get something. I guess that’s why we’re all here. Here’s my story.

Ever since I could remember, I loved to run, fish, play sports, catch lizards and butterflies, ride my two-wheeled bike, play games outside with my friends, and many other things. All of my favorite activities and hobbies started getting harder over time, from about age 6. I started feeling extremely out of breath, my feet kept crossing in front of each other, and my balance started to become unstable. My family and I didn’t really understand what was happening to me, but we knew there was something wrong.

By the end of sixth grade, I was diagnosed with severe scoliosis. Four and a half months later, I underwent a surgery, known as a spinal fusion with full back equipment to correct my scoliosis. In a spinal fusion, “the joints between the vertebrae are removed to loosen them up. The vertebrae are roughened up so that the body responds by producing new bone. The new bone eventually bridges the gaps between the vertebrae and makes them fuse together. Metal implants such as rods, screws, hooks, or wires; are put in to hold the spine still while the vertebrae fuse.” In my surgery, I got 2 rods and 18 screws put in my spine. After my surgery, it was a long road to recovery, I basically had to learn to walk and use stairs again. It honestly was a painful recovery, but thank goodness I had my surgery because I was done with the constant back spasms and being stared at by others because I was tilted to the side.

I didn’t completely understand why people kept staring at me and asking me why I don’t walk like a normal person after my surgery. I felt so down on myself because I didn’t feel like the average teenager. People cursed at me, told me I was anorexic, threw things at me, treated me like I was invisible and worse of all, they told me to hurt myself. Almost all of elementary school and middle school, I got treated like this by others. Mentally, I never felt like I mattered. I felt very alone, but I would just keep my emotions trapped inside of me. Yes, I had my family and my very close friends but I still was not emotionally okay and I barely talked about my problems and the bullies at school to my family, even though we always tell each other everything. I just kept everything in.

Freshman Year of High School

Freshman year of high school was especially difficult. I started realizing I needed to hold onto someone when I was walking, as I did not want to fall and embarrass myself. During classroom breaks, I tried to make new friends but they ignored me and were rude to me. In my head I knew it would be the same as my past 2 schools, so emotionally, I was still not okay and not treated as a regular teen, either. When I finally thought I had a friend, I asked my “good friend” if I can hold onto her arm for my balance and gait, she replied with “No. I don’t want people to see me with you and I don’t want people thinking I am gay.” When she said that, I walked away from her and cried.

One day before class started, I dropped my breakfast on the way to the first period and when I bent down to pick it up, I lost my balance and went headfirst into the corner of the concrete wall. After I woke up from my 3-second blackout, I was surrounded by guys that were laughing, pointing, and recording me. Thankfully, 3 girls broke through the crowd and told them all off and then picked me up and rushed me to the nurse. There, I could barely see out of my left eye and my hearing was very muffled. My mom and dad ended up picking me up and taking me home. At home, I was laying down in bed but I felt so extremely dizzy, so I ended up throwing up. That was alarming to everyone because a concussion can cause a brain bleed. Therefore, I ended up going to get immediate scans of my brain. Those tests said I did not have a brain bleed. My family and I were so grateful. The doctors did tell me I had a severe concussion and they ordered me on bed rest for at least a week.

Getting Diagnosed with Friedreich’s Ataxia

A few days later, I went to a neurologist. She noticed my gait and balance were off and knew it wasn’t normal and it was not because of the concussion. So, she ended up running all sorts of tests, including a genetics screening. A month and a few days later, I was officially diagnosed with Friedreich’s Ataxia (FA). FA is a rare, inherited disorder that causes progressive damage and movement problems. Usually, it begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time. Currently, there is no cure or treatment, but there currently are ongoing clinical trials. FA occurs in 1 in 50,000 people and I happen to be one of those lucky people that got it.

When I researched it, it was so much to take in. It took me almost 2 years to accept that I had FA. It just made me so down on myself than I already was. I ended up leaving school to focus on my health and cope with everything.

Sophomore Year of High School

I started school again sophomore year (when school started) but I didn’t physically go to school, I started participating in online school. It became so much better and I could work at my own pace and not be super stressed out. A few weeks after school started, I was diagnosed with cardiomyopathy (thickness of the heart) and pre-diabetes, conditions that are progressive results of Friedreich’s Ataxia

Middle of Junior Year of High School

I started having these very strange episodes where everything was so out of focus, I couldn’t hear anything because it was too muffled, I couldn’t stand up at all, my body tingled all over, and my body was basically completely limp. I think they were “mini-strokes” and I had 3-4 of them at separate times. (This has still not been medically proven, so don’t quote me on that.) A few weeks later, I was getting out of the bathtub and I totally lost consciousness and fell back in the bathtub. All I felt is my body shaking viciously, therefore, it was most likely a “seizure.” (It also was not medically proven.) I ended up going to the hospital to see my neurologist and she admitted me to the hospital so they could run all sorts of tests, such as a 24 hour EEG of my brain (they found nothing), an EKG of my heart (nothing was found), and a complete blood screening for diabetes (they also found nothing). The last option was an implanted heart monitor. I ended getting the procedure done. Ever since I got the implant, I never had another episode, so we still do not know what caused the events.

The FA Community

March of 2018 I became involved in the FA community, thanks to my very good friend Shandra who also has FA. Let me just say she’s absolutely amazing. She brought me into a community of amazing people that are almost all my best friends *cough* *cough* Mekayla and Kyle and many more.

I am beyond grateful that I got to meet all of these amazing people that understand me way more than anyone else does. I just let go when I am around them because I know I won’t be judged for the way I walk or the way I talk and everything else that FA has done to me.

Yes, I want a cure, but if I never had FA I wouldn’t have EVER met the amazing people I have today.

Now

Friedreich’s Ataxia will never define me.  I may have FA, but FA doesn’t have me. We are still normal people just with some disadvantages.

My brain works perfectly fine and will always work fine.

FA is not me, it’s just a part of me.

Together we will cure Friedreich’s Ataxia once and for all. Thank you for reading.

~ Olivia 🙂