Adventure of A Normal Life
I have long forgotten about my Hubpages account ever since I decided to embark on my lifelong 'adventure' as a normal person. So... Why do I say as a normal person?? In some of my old articles, I had written about my long term health condition - Lupus. I have this condition since I was twelve years old. Despite living in the same world, as a patient, our world is different. Very different. Well, for me, at least. I always dream to be a normal person where I can play like all of them, think like them, do whatever things like them. After so eighteen years of struggling,surviving and living with lupus, I slowly see some lights, my health started to improve... I decided it's time to start on my new life journey as a 'normal' person.
Every life journey is never the same even for a normal person. When I decided to be one, it is really an adventure for me. The world I used to stay in is totally a different one. Medicine is my supplements and my daily life booster. Without these daily boosters at the start of the day, I can't function at all. They are renewable batteries to keep me moving and living. It's just part and parcel of life, isn't it. I never have a sustaining job the moment I stepped into the workforce. Have a full time job and working for years is a dream of mine and so difficult to fulfil. Not going to go back about my past work experience. Past is past... No point dwelling upon the past and reminding myself over and over again.
A newborn starts when I embarked on my adventure as an allied educator. This is where I first truly experienced working as an adult despite I am one but I don't know how to live like a normal person. I never have real life social skills for my family and friends always protect me from being to get hurt. Those who didn't understand me, gave up on me. These eight years of being one normal person working in a school, learning to be a 'normal' person, is one hell full of challenges! Those 'normal' people never understand what you have been going through in the past. To them, able to work for long hours, knowing and having the art of communication is innate, common sense is one essential element which you should have. All these are things I have never experience before since twelve years old which was why I was labelled as a weirdo, a loner or even a troublemaker.
My acceptance of my condition, health and life came much slower. I used to explain what I had gone through, how my condition affecting my thoughts, behaviour, why am I behaving like this... which I don't do that now. For a normal person to understand what you have gone through, it's just quite impossible. It's just like I won't know what is reality until I stepped into it which is what I am doing now. For a normal healthy person to understand what I have gone through, it's just like playing music to the cow (in chinese is what we used 对牛弹琴). It means they will never appreciate or know music unless they learned it. It's just like though despite I am a patient myself, I might not even be able to understand the amount of pain and agony of a cancer patient has gone through.
From the past of not knowing my limits till slowly expanding and pushing mine to be like a normal person, took me eight years and I am still learning. I am still adding on to the list. Earning a salary like them is my achievement and being able to communicate with them is my learnt skills now which still needs improvement. I stop explaining why I am like this, who I am or why I behave this way or think this way - weird, stupid or lazy... For I know, they will never understand cause it's a path they never step in before.
Cystic Fibrosis: Living With a Terminal Illness (With Claire Wineland)
And... I came across Claire Wineland who has cystic fibrosis. Mine is not exactly a terminal illness but she explains perfectly of the life we are going through now.
At the end of the day, I tend to ask myself... What do I want actually? Understanding, empathy or pity?? Neither. I want to live like them eventually, on par with them. What all healthy normal people can do, I can too. It's ok even if it is not perfect but at least, I tried. I am not healthy but not weak. I tend to go on medical leave, unwell but the days when I am around, I can work harder. I don't want empathy cause all patients may not be healthy, we have our dignity and the ability to be like a normal person or even better than them. That's the beauty of it. We have the best of both sides and I am glad I can be like a normal person and enjoy the life of a patient. I won't know when I will die but I know I will live my fullest of it.
Life With a Traumatic Brain Injury: Finding the Road Back to Normal
Winner of the Midwest Book Awards in the "Health" category receiving a silver medal in May 2016.
In February 2014 Amy Zellmer slipped on a patch of ice and fell, forcibly landing on the back of her skull. The impact briefly knocked her out, and when she started to get up, she immediately knew something was very wrong.
Amy had suffered a Traumatic Brain Injury (TBI) and was about to start a journey unlike anything she had ever experienced. Her life had changed in literally a blink of the eye.
This book is a collection of her short articles, most of which were originally published on The Huffington Post.
Learn about what it means to have a TBI as you read about her struggles and frustrations, like the days she can't remember how to run the microwave, or how she gets lost driving to familiar places. Understand what it's like to suffer fatigue and exhaustion after doing a simple task that most take for granted.This book is perfect for TBI survivors, their caregivers, friends and loved ones.
It is a great book for survivors to give to their supporters so that they, too, can understand what those with TBI are dealing with on a daily basis.
"Amy's book not only offers insight and details on brain injuries, but it also sheds light on an often-over looked and misunderstood issue. As a traumatic brain injury survivor, it gives me hope that one day the traumatic brain injury community will finally get the recognition and help it needs."
★ Ali Wallace, Miss Oregon 2015 & TBI survivor
"I wish this book had been available when I endured my traumatic brain injury. I had no idea what to expect. Amy realistically describes many of the problems or situations encountered, and has allowed me to see how much progress I have made. Thanks, Amy." ★ Sherrye G., TBI survivor
"Often invisible, TBI takes a toll, not just physically and cognitively, but emotionally and socially, as friendships and empathy are tested "to the max." Amy explains TBI so vividly that the TBI-er feels exonerated, understood, and no longer alone. Those whose loved ones are touched by TBI are given a glimpse and better understanding of their world."★ Marlene, Kansas, caregiver-
About the Author
Amy sustained a traumatic brain injury (TBI) in February of 2014 after falling on a patch of ice and landing full-force on the back of her skull. She is still recovering and understanding the full scope of her injury. She is an author, professional photographer, and creative coach located in Saint Paul, MN. She is a frequent contributor to the Huffington Post, and a loud and proud advocate for TBI awareness. She travels the country with her Yorkie, Pixxie, and brings awareness everywhere she goes! She believes that the healing process begins with the telling of your story, releasing everything that you’ve been bottling up inside. Her goal is to tell other survivors stories, and share their images. TBI is an invisible disability that many don’t understand. She wants to bring an awareness and understanding to the world, and hopes that people will have more compassion for those who look seemingly fine (but inside are struggling with memory or cognitive issues, such as herself). She is addicted to Starbucks, Miss Me jeans, and all things pink and glittery.