From Patient to Health Care Provider in the Same Hospital

Caroline's Story

Boston, MA

Age: 16-24

A little bit about my journey:

My Diagnosis

hEDS, Seizure Disorder, Neurological Disorder, Hearing Loss

Time to Get Diagnosed

hEDS - 18 years, Hearing Loss - 7 years, Neurological Disorder - 8 months, Seizure Disorder - immediate following presentation of symptoms

Year I was Diagnosed

Hearing Loss 2007, Neurological, seizure & hEDS - 2018

Sending Love to

All the PT, OT, and SLP's that I have worked with to get me to where I am today!

Hospital I'd Recommend

Spaulding Rehabilitation Hospital

This is my story:

It all started in September of 2018 when my health went from bad to worse in just a matter of days. I went from being an extremely actively involved high school student to experiencing a whole host of symptoms after a bout of mononucleosis. I spent my summer going doctor to doctor, but no one could figure out what was wrong. Then on my 3rd day of my senior year I got super dizziness in class and my world as I knew it started to spin – literally and figuratively. In just a few short days I couldn’t walk, write, or remember things – basically all bodily functions a person needs to complete ADL’s (activities daily living) where lost. Just like the slate was wiped clean. 2 hospitals, 1 ambulance ride, and many tests later a doctor sat at my bedside and told me I had a rare neurological disorder that science isn’t there yet to know much information on. I was left reeling after getting this news – feeling relieved to be able to put a name to all the symptoms, but concerned for what the future held. I was a bright eyed high school senior full steam ahead on the pre-med track. Suddenly my goals weren’t what college will set me up for success in med school, it was what can I do today to learn to walk. I made a promise to myself that I won’t give up. I spent a month in a rehabilitation hospital spending 3 hours every single day in PT, OT, and Speech therapies learning basic tasks all over again. Every single morning I would wake up and change the quote on my board that sat on my bedside table to set the intention for the day. Only 2 months after getting discharged I found myself back at same hospital again after seizures deconditioned my body greatly. It was upsetting to be back there after only such a short period away, but it ended up being a blessing in disguise. During that admission I took my first steps without any medical devices! A stepping stone some said would be impossible. With this milestone reached I found a renewed sense to continue to fight for my dreams. I was told “You can’t, You won’t, You will never be able to” to so many things. However, that’s not how my story went. Instead it went a little something like this: hospital home bound schooling and many hospital admissions my entire senior year and I still graduated on time and in the top 20 students of my class. Completed a year of multiple weekly appointments for PT, OT and Speech therapies and was declared in remission from the neurological disorder that started this whole journey. Got accepted and will be attending my top choice college in the fall to presume a career as a Physicians Assistant – my dream job. Lastly, I was able to enter back into the workforce landing a dream job working at the bedside taking care of patients in the same hospital that diagnosed me. Everyday I walk into work grateful to be where I am and I take everything I have learned in my experience a to be the most compassionate, empathetic, and caring caregiver I can be.

Let’s play 20 questions:

The song that keeps me going is:
"Fight Song" by Rachel Platten
I never leave home without my:
My phone
My go-to feel better movie is: 
Miracles From Heaven or anything on Hallmark
If I was in the hospital, the celebrity I would most love to visit me would be:
Rachel Platten or Thomas Rhett
When I need to relax, I:
Do Yoga
My favorite food is:
The quote that keeps me going is:
"I'm not just surviving, I'm thriving" or "Use your smile to change the world, don't let the world change your smile"
When I need a laugh, I:
Watch an episode of a comedy show like Golden Girls or Fuller House
Meet my pets (or favorite stuffed animal):
Don't own any pets, but I really want a husky someday!
My hero is:
My Little Sister
When I’m having a down day I binge watch:
My favorite gymnastics movies
My favorite book to get lost in is:
I can't pick just one! Probably anything by John Green
I want to be best friends with:
Simone Biles (I grew up doing gymnastics so: once a gymnast, always a gymnast!)
The thing I’m most proud of:
Running my not for profit program/organization Little Boxes of Sunshine
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
The people that I have met and the impact that those individuals have had on my life
The most hilarious thing that has happened to me is:
My sister, who is 3 years younger than me, were mistaken as twins and where asked what living as twins was like
It really means a lot when someone does this:
Goes out of their way to do something kind
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
This quote states it perfectly: "I'm not saying it's going to be easy, I'm saying it's going to be worth it"
Words of encouragement that I’d give to my fellow warriors are
No matter how out of reach a goal may seem, if you truly want it go after it. Hard work, sacrifice, and determination will take you so far in life
Follow my journey:

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