Video Project Free-Write
Word count: 831
For my video project, I want to help bring awareness to Lyme
Disease and Dysautonomia (POTS) and the isolation that they and many other
chronic illnesses can bring to a person’s life. I will use my own personal
experience with Lyme and POTS to raise this awareness. I’d like to center it
around the isolation and the role that music played in my journey.
So here is the basic story (I might need some help on figuring
out which details I should leave out/expand on):
When I was 11 years old, I got sick with Mono and missed the
last month of fifth grade. Even though the Mono went away, the extreme fatigue
never did and I even started getting psychological symptoms out of nowhere
(depression, anxiety, even suicidal thoughts and tendencies). I spent all of 6th
grade in and out of outpatient therapy programs all the while dealing with
increasing fatigue and weakness. The psychological symptoms started to subside
by the end of 6th grade and then the physical symptoms came to the
forefront. I spent the first half of 7th grade going from doctor to
doctor and was diagnosed with Chronic Fatigue Syndrome. That diagnosis was good
enough until I woke up on February 14th, 2011 and was too weak to
stand up. I ended up staying home for the day, not knowing I would end up
bedridden for the next 3 years.
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| My bed. Fun fact: It's actually a hospital bed with a remote to make it sit up and everything. |
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| The view |
After the first month of being bedridden, I went to a
diagnostic specialist who diagnosed me with a form of Dysautonomia called
Postural Orthostatic Tachycardia Syndrome (POTS). This basically means I had a dysfunctional
autonomic nervous system; my body was struggling to do the basic tasks that a
healthy body does automatically (heart rate regulation, blood circulation,
blood pressure regulation, etc.). The main concern was that the blood vessels
in my legs that were supposed to constrict when I stood up, in order to keep my
blood pumping to my head and my heart, weren’t doing so. This caused me to
nearly pass out every time I stood up. I would get extremely dizzy and lose my
vision and hearing for a few seconds, but luckily my body would adjust just in
time for me to not faint. I used a wheelchair whenever I left the house to
avoid standing too long and was told by my doctors that I would hopefully just
grow out of this disorder.
Two years passed and my symptoms were as worse as ever so I
went to get a second opinion from a Lyme Disease Specialist who we heard had
helped many patients with POTS. Through extensive blood work she found that I
had Lyme Disease as well as multiple co-infections and parasites and this is
what was causing my autonomic nervous system to shut down. After six months of
high-dose IV and oral antibiotics combined with holistic medicine to mend some
of the damage, I was Lyme-free and returning to school halfway through my
sophomore year of high school.
So that’s the basic story, but the part that I want to focus
on in particular is the isolation of being sick with chronic illnesses.
Obviously people may assume that it’s isolating being bedridden for 3 years. That’s
a given. But it has many layers that no one really looks at.
For one, chronic illnesses are not widely understood. People
don’t treat their friends with chronic illnesses the same way that they treat their
friends with cancer. Chronic illnesses are often minimized and treated as
less-than or nothing to really be concerned about. In the 3 years that I was bedridden,
I got no visitors. People just forgot I existed. The stigma around chronic
illness painted me as weak and lazy. People even told me that my illness was
not a real and I could get out of bed if I actually wanted to. This lack of
support from friends and family adds to the initial isolation of just being
alone in my bedroom.
On the other hand, that isolation was the reason I became a
musician. My brother taught me how to play guitar the same year that I got
sick. When I was feeling up to it, I used my seemingly never-ending free time
to practice. I used to post covers on Facebook when I felt like I was too
detached from everyone in the real world because that was my way of reminding
people that I was still there.
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| A screenshot from a recent video that I think captures the ambiance of my room pretty well. |
In my video, I’d like to do something similar to what they
did in “Midnight Three and Six” where they focused on the quiet stillness of
the house. I want to find a way to show how quiet my house was when I was
bedridden, despite the music I was playing. I might use some of the videos I
used to post on Facebook (if they aren’t too cringe worthy) but mostly I want
to focus on my bedroom and the isolation I still feel when I’m in there.
First off, you're my hero. Second, I'm so stoked to see this finished and winning awards.
ReplyDeleteDude, THANK YOU! I'm so excited for yours too but you know that already.
DeleteWow, just wow. You are amazing.
ReplyDeleteLooking forward to seeing your video!
Wow, thank you so much!!
DeleteDear Alexandra,
ReplyDeleteI like that you have done a few things really well: you've narrowed your topic to something compelling, you have an insider's experience that can offer an unique insight, and you're willing to reveal something about yourself that others might keep inside. You're ahead of the game already. I do like the idea of keeping this in the domestic sphere and showing the day to day of an illness that (as you mentioned) is not widely understood. Keep in mind that in that video, they also used humor and ordinary objects rather than over-dramatizing the experience. What made it powerful were the things that were left out, such as the pictures of the children who had died.
Your challenge here will be to offer some insight and reflection about what this all means. So, you'll have to spend some time looking at the illness and how it's shaped who you are, for good or for not so good, in real ways. Be careful of creating either a triumphant narrative that shows you as the heroine despite your obstacles, or a tragedy that shows you as a victim. I'm not saying you would do either one of those things--just that what makes extraordinary struggles like yours powerful is in seeing them close up, for real, in a way that we can't get in any other form. It might also help to acknowledge that this is an on-going struggle--no one expects a person in their late teens or early twenties to fully understand the long term impact of this, so you consider stating exactly how you feel--particularly if those feelings are unresolved or slightly ambiguous. The other thing you might do is to figure out the connection between your illness and your music as you've also started to do here. One way around the straight forward illness narrative is to start with the music and then slowly reveal to the viewer why you're so passionate about it--it was a form of solace while you were struggling with isolation. Just some ideas. I hope this is helpful. Push yourself on this, as I know you will.
This is super awesome that you are able to tell your story through this project while also educating others. I personally know very little about the subject and look forward to being educated. I really like how you are getting personal on an emotional subject because I feel as if it will make the piece stronger.
ReplyDelete