In our lives, we are fortunate to run into individuals that are able to shed light into darkness and, at the same time, bring hope. As the President of AADMD, I am asked to talk about various health issues that surround those with IDD. In one of my events that explored healthcare disparities, I met a very powerful advocate and a voice for inclusive healthcare. Meet my friend, Amanda Harrinauth. – Dr. Allen Wong (AADMD President)
We Are All Here for a Purpose
BY AMANDA HARRINAUTH
A s a person with many disabilities, I am no stranger to staying in the hospital. Born with hydrocephalus (water on the brain), I've had my head shaved bald a few times. My body has been plagued with illness from the time I was born until now. I learned to fight my health battles with prayer and an endless supply of laughs. I kept the medical staff in good humor even though I was afraid to be poked with needles, frightened of that giant CT scan machine, and was opposed to taking gross medicine.
We are all here for a purpose. The struggles faced in life may help to console someone else. My health is my cross to bear. I remember a time back in 2001, I was 11 years old, and my shunt (the tube that allows the fluid to be diverted away from my brain) failed. I was really sick. I was having seizures, vomiting, and sleeping after the medical team wanted to try a new kind of shunt.
I am so grateful for wonderful parents, a supportive big sister, and good medical care. Who knows where I would without them? The importance of healthcare for those with special needs is that many of us have co-existing conditions. Many years ago, I was diagnosed with a low-grade form parotid gland (salivary). I made it through successfully. In 2018, I dealt with retinal detachment; I lost some vision, but I can't complain. I had one of the best doctors in the world taking care of me. I am so thankful for my medical care. I am currently experiencing health challenges. I have been in pain for almost a month. I have headaches, chest pain, stomach pains.
As an Athlete Leader, Health Messenger and self-advocate, I believe that all Athletes should have access to free health care. NO one should be turned away because they are unable to pay for basic health care. •
ABOUT THE AUTHOR:
Amanda Harrinauth is a proud Special Olympics (S.O.) Athlete in Northern California. She has been competing in Bocce ball and Bowling and has enjoyed writing for five years. Her passion is to bring joy to a broken world and help advocate for inclusive health. As a S.O. Health Messenger, she encourages health to the Athletes and the community about disparity of care. Amanda grew up in the Bay Area and is looking forward to sharing her writing with the world.
Trapped
By Amanda Harrinauth
Trapped in a place where I don't belong,
these four walls contain my present and my future.
Doctors exclaim "she needs surgery right away."
My brain is acting up again and there's no time to wait.
I am a child,
who should be off running, playing and skipping with her friends.
Instead, I am victim to a condition for which there is no healing.
I spent birthdays, holidays being a slave to an IV pole, laying in a bed with bars so crippling.
Doctors and nurses come in and out some of them shout
"she has an infection, let's get it out."
Here I am speaking from my 12-year-old InterVoice,
"I wish I could be normal, and not let the hospital be my second home."
I look out the window to see another ambulance arrive.
I'm in the pediatric unit, just wondering if we will both survive.
