Note: the following post may be read offensively by some, as categorizing the disabled and fully able-bodied. The intent of the author is not this at all. This post reflects the view of the author as she came to terms with her diagnoses, and she is not trying to imply that the disabled aren't like everyone else, or that they are controlled. Everyone has their own life. The perspective offered in this post was directed for the author, so please read it within context.
Jeremiah 29:11 NIV - "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."
As a young child, I had all the usual curiosity as any other child does, Kindergarden age. I explored my world with just as much enthusiasm and ignorance as the others my age, wanting to try things out, see how they worked, why things were the way they were. I was very bold growing up, assertive, and always wanting to do things myself, no matter what the mess. I saw myself and my world identical to that of my friends, my brother and my parents. But it wasn't until I was 10, that the differences between me and other kids came to my attention. I was sitting in my wheelchair on the paved walk leading down to the school playground, watching my classmates and the other students play games and laugh. I suddenly realized that I couldn't do what they were doing. It wasn't like I had just uncovered the truth about a lie, because I knew somewhere in my heart that my CP made me different. But up until that moment on the playground, I thought of myself as a little slower on the feet, maybe, but not nearly as affected as my diagnosis claimed.
My parents always encouraged me to try at whatever task or game I wanted, and to not let my diagnosis take root in my life as much as possible. But in that moment, at 10 years old, a dawning swept over me. It was there all along, sure, but it just surfaced right then. I felt sad at first, then mad, then confused, then tired of all the new thoughts rushing through me all at once. And ever since then, my diagnosis has hovered. But for the next 4 to 5 years, life moved on as it always had, being filled with laughter, victories, lasting memories and friendships.
When high school started, I was suddenly faced with a whole extra layer of anxiety, awkwardness - the type of layer that only comes with an inevitable condition, that begins to make itself a part of you and begins to heavily influence your decisions. When I was 15, I lost a very dear friend of mine, and my convulsive disorder (that I had had for the past 3 years) grew worse.
I started having nightmares, frequent and daily, that would often leave me in a phase of sleep-paralysis. These nightmares weren't from movie scenes or ghost stories around the camp fire; they were my deep-seated, unconscious fears coming to light. The nightmares would shake me, terrify me, and often stayed with me like a soap residue, lingering, always in the back of my mind, slipping into my view when my mind wasn't kept busy by teenage life. The nightmares were so reoccurring that I would sometimes wake up thinking that it really happened, thinking I should get up in the night and tell my mother a buried, burdening secret of mine.
In my counseling sessions, whenever talk came around to the nightmares, like a child hides from an unfamiliar face, I retreated in my shell, actually embarrassed sometimes by the dreams, as if someone could and was reading them. It was when I grew abruptly silent and distant, reserved and red-cheeked, that my counselor knew she hit a rut in the road. She would wait there in front of me, pen and pad in hand, so annoyingly patient. Then one day she managed to coax it out of me - all of it. In the enclosed little office, dimly-lit and filled with the usual awkward silence, I broke that stillness and poured out before her, every scent, every image, every thought, every feeling that had ever crossed my mind in the dreams. It was like a dam broke. My mouth opened wide and out roared all the details, and as I slowed, I made sure every 'I' was dotted, every 'T' was crossed. At first she remained quiet, blinking at what had just been thrown at her, as she registered the significance of every word, every pause expressed. I hoped, and actually half-expected her to name the cause of my nightmares as blatantly as a doctor can point to a problem and fix it with this medicine, or that surgery, or perhaps this long of some therapy.
Instead, shifting in her seat, she caught me off guard, by asking, "how much control do you have in your life?" I did not know what she meant by that, exactly, and she said, "how much say do you have in how you live your life? How much say?" I immediately assured her that my family did not control me in ways they did not need to. My parents, of course, told me yes, no and boundaries that they expected me to adhere to, and they gave my brother and me relative bedtimes according to our age, and gave us chores for Sunday church preparation, but I was always given a voice. Always treated with respect and decency... love. They were my parents, and I, their child, and when I turned 18, more freedom would be given because I'd be a legal adult in the eyes of society. My counselor shook her head, explained that wasn't what she meant. She said:
"Think about it, you've never had complete control over the way you've experienced your life. You always have the varying need of someone to dress you, bathe you... be with you. With every waking moment, you've had to take into consideration your diagnoses and the way they affect you. When you want to go out with friends, you can't just plan a time and place to meet up, you need to consider your equipment and go places that can fully accommodate such equipment. When you want to date, you need to consider this as well as your convulsive disorder. You almost always need an aid with you, practically everywhere you go, simply because of these conditions. And because of this, there is always the chance that this aid will hear everything you say and see everything you do, and will no doubt, have their own opinions about what you are doing or saying. Because of this, you have never truly felt like you've been your own person, because you can't just 'get up and go' where Sarah wants, or when Sarah wants; it's usually when Sarah's body wants to, or when someone is able to help you. You're a student in high school, and are still having to be touched - whether by caregivers or doctors - to take care of your personal needs, to stretch you in physical therapy, or to pick you up after a fall. Though you do wholeheartedly consent to this, because of your diagnoses, right now, you have no choice. When it really comes down to it, you're true desire would be to live without these diagnoses hovering over you, to live without having to have aids be constantly with you, to live without the added need to make sure a place accommodates your equipment. Deep down, you feel like you have very little control in your life, very little say in how things are done. You don't feel this way because of people, but because of something completely out of your control: the fact, the reality, of your CP and convulsive disorder."
I needed to take a breath, but was so shocked. Wait, there was more. She expanded on it further, but the rest was quite personal and private. In the end, I just sat there, feeling as if she had just found the irritating tick that had been feeding off of me and was holding it up for me to see... The culprit. I felt my chest heave and my eyes smart with tears, but choked them down my throat. I willed myself not to sob in front of her. If I had though, they would have been tears of relief, of realization. A mystery solved, years of subconscious uneasiness explained so plainly, so matter-of-factly that it took me a minute to accept it.
After a couple minutes of silence, my counselor asked what I was thinking. I shook my head, disbelief. She had just analyzed my heart - and not only my heart, but my entire subconscious - in less than 3 minutes. No joke. I didn't know what I was thinking, honestly; there was so many thoughts swirling. But the clarity that was given to me, a new way of understanding myself, a whole new layer of confidence took shape in the wake of her words. I suddenly knew why I was having those nightmares. Ever since then, the nightmares have gone.
MY TIPS FOR TAKING "CONTROL" OF YOUR LIFE AND WHY:
Click here to read: Working With Aides: Steps To Successful Teamwork
1.) Understand God's Will for your your life - 3 John 1:2 and Jeremiah 29:11 are great first verses to start with. God WANTS to bless you, prosper you. He is in tomorrow, before you even get there, fighting for you.
2.) Do what you can, when you can - this can be applied/interpreted in three different ways. One, get out and have fun, while being thankful for all you do have, and two, give back to those that help you. Nothing will bless you more, than giving out of a grateful, joyful heart. It shows you appreciate those in your life, are thankful for their contribution. Thirdly, attempt or complete tasks you know you are or may be capable of doing. This will help you be as independent as possible.
3.) Initiate as much as possible - be the one to suggest activities or get togethers. Be the one to start conversations. By doing this, you are proving to yourself and to others that you are confident that what you have to say is important. You'll be more at ease around others, too.
4.) Thoroughly direct - this is tied to step 3. By thoroughly, peaceably directing those assisting you, you are clearly, calmly making known your needs and desires. You are asserting your authority (making sure it is within boundaries and done respectfully) over your body and personal care. Take the aid(s) aside and one-on-one, thoroughly and plainly explain various methods of preferred care. When all are on the same page, teamwork will take place, and with teamwork comes a sense of incredible, vital trust and friendship
5.) Let caregivers be your friends - everyone works best around people they trust and are fond of. That, and the awkwardness of being exposed to your caregiver(s) won't be an issue once true trust and bond is established, because you will be comfortable around them. The sense of security that comes with knowing your aid deeply respects your privacy is crucial to have if you want to have "control" over the parts of your life that are otherwise less than ideal.
As a young child, I had all the usual curiosity as any other child does, Kindergarden age. I explored my world with just as much enthusiasm and ignorance as the others my age, wanting to try things out, see how they worked, why things were the way they were. I was very bold growing up, assertive, and always wanting to do things myself, no matter what the mess. I saw myself and my world identical to that of my friends, my brother and my parents. But it wasn't until I was 10, that the differences between me and other kids came to my attention. I was sitting in my wheelchair on the paved walk leading down to the school playground, watching my classmates and the other students play games and laugh. I suddenly realized that I couldn't do what they were doing. It wasn't like I had just uncovered the truth about a lie, because I knew somewhere in my heart that my CP made me different. But up until that moment on the playground, I thought of myself as a little slower on the feet, maybe, but not nearly as affected as my diagnosis claimed.
My parents always encouraged me to try at whatever task or game I wanted, and to not let my diagnosis take root in my life as much as possible. But in that moment, at 10 years old, a dawning swept over me. It was there all along, sure, but it just surfaced right then. I felt sad at first, then mad, then confused, then tired of all the new thoughts rushing through me all at once. And ever since then, my diagnosis has hovered. But for the next 4 to 5 years, life moved on as it always had, being filled with laughter, victories, lasting memories and friendships.
When high school started, I was suddenly faced with a whole extra layer of anxiety, awkwardness - the type of layer that only comes with an inevitable condition, that begins to make itself a part of you and begins to heavily influence your decisions. When I was 15, I lost a very dear friend of mine, and my convulsive disorder (that I had had for the past 3 years) grew worse.
I started having nightmares, frequent and daily, that would often leave me in a phase of sleep-paralysis. These nightmares weren't from movie scenes or ghost stories around the camp fire; they were my deep-seated, unconscious fears coming to light. The nightmares would shake me, terrify me, and often stayed with me like a soap residue, lingering, always in the back of my mind, slipping into my view when my mind wasn't kept busy by teenage life. The nightmares were so reoccurring that I would sometimes wake up thinking that it really happened, thinking I should get up in the night and tell my mother a buried, burdening secret of mine.
In my counseling sessions, whenever talk came around to the nightmares, like a child hides from an unfamiliar face, I retreated in my shell, actually embarrassed sometimes by the dreams, as if someone could and was reading them. It was when I grew abruptly silent and distant, reserved and red-cheeked, that my counselor knew she hit a rut in the road. She would wait there in front of me, pen and pad in hand, so annoyingly patient. Then one day she managed to coax it out of me - all of it. In the enclosed little office, dimly-lit and filled with the usual awkward silence, I broke that stillness and poured out before her, every scent, every image, every thought, every feeling that had ever crossed my mind in the dreams. It was like a dam broke. My mouth opened wide and out roared all the details, and as I slowed, I made sure every 'I' was dotted, every 'T' was crossed. At first she remained quiet, blinking at what had just been thrown at her, as she registered the significance of every word, every pause expressed. I hoped, and actually half-expected her to name the cause of my nightmares as blatantly as a doctor can point to a problem and fix it with this medicine, or that surgery, or perhaps this long of some therapy.
Instead, shifting in her seat, she caught me off guard, by asking, "how much control do you have in your life?" I did not know what she meant by that, exactly, and she said, "how much say do you have in how you live your life? How much say?" I immediately assured her that my family did not control me in ways they did not need to. My parents, of course, told me yes, no and boundaries that they expected me to adhere to, and they gave my brother and me relative bedtimes according to our age, and gave us chores for Sunday church preparation, but I was always given a voice. Always treated with respect and decency... love. They were my parents, and I, their child, and when I turned 18, more freedom would be given because I'd be a legal adult in the eyes of society. My counselor shook her head, explained that wasn't what she meant. She said:
"Think about it, you've never had complete control over the way you've experienced your life. You always have the varying need of someone to dress you, bathe you... be with you. With every waking moment, you've had to take into consideration your diagnoses and the way they affect you. When you want to go out with friends, you can't just plan a time and place to meet up, you need to consider your equipment and go places that can fully accommodate such equipment. When you want to date, you need to consider this as well as your convulsive disorder. You almost always need an aid with you, practically everywhere you go, simply because of these conditions. And because of this, there is always the chance that this aid will hear everything you say and see everything you do, and will no doubt, have their own opinions about what you are doing or saying. Because of this, you have never truly felt like you've been your own person, because you can't just 'get up and go' where Sarah wants, or when Sarah wants; it's usually when Sarah's body wants to, or when someone is able to help you. You're a student in high school, and are still having to be touched - whether by caregivers or doctors - to take care of your personal needs, to stretch you in physical therapy, or to pick you up after a fall. Though you do wholeheartedly consent to this, because of your diagnoses, right now, you have no choice. When it really comes down to it, you're true desire would be to live without these diagnoses hovering over you, to live without having to have aids be constantly with you, to live without the added need to make sure a place accommodates your equipment. Deep down, you feel like you have very little control in your life, very little say in how things are done. You don't feel this way because of people, but because of something completely out of your control: the fact, the reality, of your CP and convulsive disorder."
I needed to take a breath, but was so shocked. Wait, there was more. She expanded on it further, but the rest was quite personal and private. In the end, I just sat there, feeling as if she had just found the irritating tick that had been feeding off of me and was holding it up for me to see... The culprit. I felt my chest heave and my eyes smart with tears, but choked them down my throat. I willed myself not to sob in front of her. If I had though, they would have been tears of relief, of realization. A mystery solved, years of subconscious uneasiness explained so plainly, so matter-of-factly that it took me a minute to accept it.
After a couple minutes of silence, my counselor asked what I was thinking. I shook my head, disbelief. She had just analyzed my heart - and not only my heart, but my entire subconscious - in less than 3 minutes. No joke. I didn't know what I was thinking, honestly; there was so many thoughts swirling. But the clarity that was given to me, a new way of understanding myself, a whole new layer of confidence took shape in the wake of her words. I suddenly knew why I was having those nightmares. Ever since then, the nightmares have gone.
MY TIPS FOR TAKING "CONTROL" OF YOUR LIFE AND WHY:
Click here to read: Working With Aides: Steps To Successful Teamwork
1.) Understand God's Will for your your life - 3 John 1:2 and Jeremiah 29:11 are great first verses to start with. God WANTS to bless you, prosper you. He is in tomorrow, before you even get there, fighting for you.
2.) Do what you can, when you can - this can be applied/interpreted in three different ways. One, get out and have fun, while being thankful for all you do have, and two, give back to those that help you. Nothing will bless you more, than giving out of a grateful, joyful heart. It shows you appreciate those in your life, are thankful for their contribution. Thirdly, attempt or complete tasks you know you are or may be capable of doing. This will help you be as independent as possible.
3.) Initiate as much as possible - be the one to suggest activities or get togethers. Be the one to start conversations. By doing this, you are proving to yourself and to others that you are confident that what you have to say is important. You'll be more at ease around others, too.
4.) Thoroughly direct - this is tied to step 3. By thoroughly, peaceably directing those assisting you, you are clearly, calmly making known your needs and desires. You are asserting your authority (making sure it is within boundaries and done respectfully) over your body and personal care. Take the aid(s) aside and one-on-one, thoroughly and plainly explain various methods of preferred care. When all are on the same page, teamwork will take place, and with teamwork comes a sense of incredible, vital trust and friendship
5.) Let caregivers be your friends - everyone works best around people they trust and are fond of. That, and the awkwardness of being exposed to your caregiver(s) won't be an issue once true trust and bond is established, because you will be comfortable around them. The sense of security that comes with knowing your aid deeply respects your privacy is crucial to have if you want to have "control" over the parts of your life that are otherwise less than ideal.