When you grow up in a reality that - for the most part - hinders your ability to experience new things as easily as other children because of a disability that leaves 3 limbs mostly useless, you will naturally begin to fantasize about the things you wish you had in life.
Growing up, my imagination was what kept me going, other than my loved ones and God. Imagination brought me a power of creativity I couldn't have as a child due to limited mobility. I could make up a world that was perfect. I could walk and run and jump... I could play tag or hug easier. Eventually, I learned how to imagine even with my eyes open. I would day-dream and learned to pick things out that would prompt good thoughts. For example, I love white dress shirts and black vests because they remind me of a simpiler, more "proper" way of life. This is an image I focus on that brings me peace.
I cherish my bedtime. It's a time that I get to be alone and private. It's a time that I use to journal, read or blog, but also my time to imagine. Since I was little, I have been a very visual person and have no difficulty picturing things in my mind. I am able to see my imaginations clearer with my eyes open, than if they were closed. I picture every detail: scents, facial features, settings and weather so vividly that it's almost like getting lost inside a piece of good music or writing. I always look forward to when my bedtime comes. I am grateful to have my dreams be realistic and in color all the time too, which is a true blessing. At night, through my dreams, I am able to take a break from the stresses and sometimes jealousy of reality. I wake up feeling reenergized and ready to face the new mountains.
I have also found being in the moment to be incredibly helpful too. At night especially, to prepare myself for sleep, I think about 3 things: God, my bed and the next day. I thank God for my bed and focus my mind on how safe and comfortable I feel in it. I measure my breathing and imagine the air swirling through me, giving rest to all of my organs and then I think about how tomorrow is an absolutely brand new day that holds incredible blessings and opportunities to learn more about myself and a new day to strengthen my relationship with God. All these thoughts calm me and help promote good thoughts that may carry over into my REM sleep.
MY TIPS FOR LEARNING TO IMAGINE AND DREAM WHAT YOU WANT AND WHY:
1.) Relax - relaxation greatly reduces stress and no one wants to have stress carry over into their fantasies or dreams. Focus on your breathing and feeling peaceful
2.) Pick a general feeling / situation that you want to achieve - being very specific with your desired dream will just disappoint you, as dreams tend to be a mixture of feelings and thoughts. Generally, if you focus on one emotion, you will dream about things relevent to what you are feeling. Positive affirmations can help with this. With imagination, you are able to consciously decide what you want to experience, so you can be more specific.
3.) Repeat a happy thought in your mind - positive affirmations are short, profound statements that express a desire as if it has already been achieved. Use these to help keep your mind focused even into your sleep. These may help with imagining, but once again, imagination is done in your consciousness and has more chance of being what you want
4.) Don't get discouraged - it is easy to become discouraged when you wake up from a dream you did not want, especially of you had been hoping for a certain one. If this happens, figure out what might've caused this (a past stress, etc) and turn it around with a positive thought. The more you think about something, the faster it becomes habit
5.) Get a restful sleep - being too hot is always uncomfortable and can make you sweat. Our core body temp has a lot to do with how well we sleep (click here for more info). When we are relaxed and our rem-sleep will be deeper, which promotes more dreaming
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Note: Always CONSULT YOUR DOCTOR for medical treatment. Everyone is different and you will need and individualized treatment plan and tests for seizure-like conditions. The author's purpose is soley to offer advice for coping with convulsive disorders, such as PNES or NEAD.
A good friend of mine said once, "your true colors are starting to get loud." This got me thinking and I began to interpret this in my own way. Two words stuck out to me: colors and loud. I thought about individuality and my own personal journey to find out who I was and what I was meant to do. This journey was rough, but once I discovered my passions and learn to work with the abilities I did have to accomplish realistic dreams, I started realizing my worth and how to shine my light. Something that is my biggest passion is serving God and sharing my testimony, and through my service, I get to be a light in other people's lives. People are drawn to authenticity, and until I understood that I wasn't entirely comfortable being on the cover of magazines or being photographed.
My true colors were not showing as a little girl because I was too shy to speak up for myself or to people I just met. My true colors weren't showing because I kept trying to fit a warped idea of what was beautiful and eventually gave up thinking I was just "not so lucky". When I think about what this quote means, I think about the uniqueness of color and how many shades there can be. That's why it's important to accept who we are as individuals and realize that we all have different talents to contribute to the world. I believe that we need to step out of the crowd and let our colors and light inside be as bright and obvious as possible... Have them be LOUD. Make a statement. Leave a mark that says you've been there, done that and were not afraid to try something different or out of your comfort zone. MY TIPS FOR MAKING YOUR COLORS LOUD AND WHY: 1.) Smile - a smile says you are confident and it is a light that everyone is attracted to. Smiling lowers your heart rate so you stress less, and stress causes insecurity. 2.) Surround yourself with things that bless you - we all tend to feel more comfortable when we feel accepted, and being around loved ones and friends that can influence us in a positive way will help you in your journey of self-discovery. 3.) Discover your passions - finding interests and hobbies will help make you feel more confident in your abilities. Your talents can bless others and you can make a positive difference. 4.) Create a vision board - this is simply a large collage of your dreams and goals that you can display on your wall where you can see it every day. These help you stay focused and on track 5.) Get out in the community - share your talents with others. Become a member of clubs that interest you. Volunteer and make a positive difference Scripture says in Matthew 12:34, "...out of the abundance of the heart the mouth speaketh." Whatever is in your heart, will verbalize. Whether you are thinking about happy, sad, jealous or scary things, you will always express those thoughts doing what you say and how you speak to others.
For 15 years, I was verbally and emotionally degraded by one person in particular. I especially know how words can hurt. Almost every day this person would find something to tease me about or do something that would upset me. They were good at reducing me to tears, and there were times that I would find myself actually screaming at them. I didn't know this person had against me. Sometimes they would make "cripple jokes" or shake their head at me out of the blue for no other reason but to upset me. The names they called me and their insensitive remarks began to stick by the time I was 12. Without knowing I was doing it, I was labeling myself with what they said. I began defining who I was based on their opinion of me, and little by little this ate away at my heart and emotional health like acid. The adults in my life could only do so much, as it was unavoidable to be in the said person's presence everyday. Eventually, when it was certain that my physical safety wasn't at threat, I was told to "just ignore". How can you ignore something that is literally in your face everyday? I was encouraged to "let it go" when the person upset me, but the truth was, everything they said soaked inside me like a sponge. Even if I did ignore them in the moment, the words would surface in my mind when I wasn't distracting myself. I often said, "but they made me..." It felt like my thoughts and feelings were being controlled by the bullying. Truth is, no one can "make you" feel a certain way or do a certain thing just by saying something; you have to make the decision to accept or obey. Most of the time, our decisions are made in a split second, meaning we do something without thinking, while in reality, we are thinking to do that. That's why it became incredibly necessary for me truly be aware of every thought that crossed my mind. I had to make a concious effort to be ready to combat negativity, and when something did come, I forced myself to step back and chose my reaction in the moment. I needed to realize that there was always a reason behind someone's actions, no natter how noticeable the reason was. It is pretty fair to say that people who tebd to bully others feel insecure about themselves, and that by putting others down, they feel they are gaining power - they feel as though they don't have control in their life, so by being mean to others, they have control. And it doesn't matter what kind of control either, just as long as they have it. I liken bullying to a tennis match in that both the giver and receiver might throw negativity back at the other; the bully for power; the victim for defense. So long as both are shouting or fighting back, no matter what their reason being, the game isn't over and no one wins. In this case, the bully should never win, but in order to ensure this, the victim must keep the ball in their court. MY TIPS FOR DEALING WITH BULLYING AND WHY: 1.) Understand why - without knowing why something is the way it is, you can never make it better. Know the probable causes behind the bullying so you know how to defend yourself. 2.) Keep the ball in your court - the urge to verbally or physically "defend" yourself will be high. As hard as this may seem, don't lead on that you are upset. 3.) Filter and Choose - the moment a thought enters your head, assess it's truthfullness. If it is simply an attack from the bully or self-condemnation, turn it around with the truth. Consciously choose how you will react in every situation, because in the end, you're the tougher of the two for standing strong. 4.) Distinguish between defense and acting out of vulnerability - the proper defense to take against a bully is to tell a trusted authority figure right away. You can do this discretely and sometimes ananomously. Acting out of vulnerability means you are not assessing the pros and cons of your decisions, and this could weaken your case if you decided to report the situation later. It's better to not fight back, because an authority figure will know that the treatment was against your will completely. 5.) Forgive & Forget - this might make you cringe, but this is the first and most important part of the healing process. To forgive does not mean you are being too passive, it shows humility. You may not literally forget what happened, but the forgiving part of this mostly means you are willing to never bring it up again. You are willing to give the bully a new slate, a second chance. By forgiving and forgetting, you will be a great example of how others should act. (For more on this, click here) It is natural for siblings to compete, to be jealous of each other and to fight, but this can be a bit harder if disability is added into it all. My friends and family joke and say that my brother and I "balance each other out". My brother was an only child for a while following his adoption, and then I was adopted. My brother was a really spirited, somewhat outspoken boy growing up, while I tended to be more delicate, but talkative. He needed to learn to be more gentle, while I needed to get a bit tougher.
When I was younger, I had much less mobility which meant that my mother and caregivers needed to be with me much more frequently and able to drop everything at a moment's notice. It is completely understandable why my brother, being so young, might feel ignored. It was tough for my parents to explain the situation to him, and he would tease me. I was easily offended when I was younger, and quick to yell at him, which added some stress on my parents, because I needed to learn to "pick my battles", and my brother had to realize that words can hurt, but also stick. However, as we got older, we tolerated each other more. There were times that my brother felt I could've done more for myself, that sometimes it felt like I was taking advantage of my caregivers. This would anger me, as I felt I was doing the best I could with what I had been given. It's hard to explain your disability to someone you just met, but in some cases it can be even harder with those you love. That doesn't make sense, you say, but actually it does. The more you are around someone the more you learn about them: their pet-peeves, their interests, their habits... You learn it all. You also learn what they are capable of. When you live with a disability, it never affects you the exact same way every day. For me, though I use my left arm for everything, there are some days that I cannot use it as well, and I have to rely more heavily on others, especially loved ones. And because they've known me so long, it is easy for them to think that maybe I'm "milking it" or something. It's always difficult to truly step into someone else's shoes. Growing up, I often got jealous of my brother because he could do things I couldn't. From his perspective he'd sometimes be jealous that I got to drive a power wheelchair or have someone carry books for me at school. We had to learn to understand each other first before we could really help each other. MY TIPS FOR FORMING A HEALTHY BOND WITH AN ABLE-BODIED SIBLING AND WHY: 1.) Attention - sometimes it can be difficult for an able-bodied child to distinguish between necessary attention and favortism. Try to show them as much attention as possible and offer modified activities that both siblings can agree on. Also, if you're a parent, when your disabled child is with a caregiver, give the other child undivided attention. 2.) Modify - offer activities that interest both parties, and modify them a little to include a disabled child when needed. It is important to compromise. 3.) Helping hand - especially with younger children, it is important for them to feel helpful and included. Have an able-bodied sibling help out as much as possible with their disabled child. This could mean letting them help push a wheelchair, carry things, open doors or entertain the disabled sibling. 4.) Accept differences - the able-bodied sibling might be able to do much more than their disabled sibling, and by explaining the situation to the able-bodied child, they will be able to compromise easier. From the other perspective, the best thing to do is be grateful for what they can do. Share in each other's happiness, allow space when needed and offer each other support when able. 5.) Realize normal sibling rivalry - all siblings will pick on each other at some point, some more than others. Understand that an able-bodied sibling might not be making fun of their disabled sibling, but if it seems as though they are, address this appropriately and right when it happens. From the other perspective, ignore, no matter what type of teasing it is. Don't tease back, because you'll be keeping the ball in the air. Drop the subject and switch to something else. Throughout my childhood, my CP affected me in such a way that I needed caregiver assistance or supervision 24 hours a day, seven days a week. This situation was – the most part – find with me until I reached my teens. It's a nauseating experience, if you will, to know the even though you are in high school and are old enough to have a boyfriend, you still have to be followed into a restroom. And, I don't know if you've ever tasted public wall before, but it's definitely not sautéed shrimp. I've always hated those moments when I have purposely squish my face into the tile squares of the girls' stall just so I can stay upright and pull up my pants without letting go of the only available grab bar. It's a very difficult thing to face, and there were times that I was embarrassed to ask for help because I didn't want others to notice. I wanted people to think that I could do it all on my own. Trouble was, I was also suffering from convulsive panic attacks. I started to have them around the time I was transitioning to a new school, and trying to accept that I wouldn't see my former aids again. The attacks would leave me so disoriented and exhausted that I could be non verbal for up to 2 hours. During the attacks, it was hard to communicate and was very frustrating at first for my new aids to know how to best help me, hence the rule that they had to be with me at all times for safety. Because they were around me so much, it was easy to feel like my privacy was being unintentionally invaded. They heard everything I said, saw everything I did and some even would pipe in their two cents about something that did not concern them. When this happened, I would often feel out of control. I had to learn very quickly how to get my needs known without being offending or coming across as being egotistical. I always had a deep respect for my teachers' authority, but when I felt like I was being controlled, it was incredibly difficult to speak up myself. My Junior Year taught me a lot. I learned that frankly, "if you want something done right, do it yourself." In my case, this meant that I am the only one ultimately in control of myself and the life I lead; other people can only do so much. I have had incredible bonds with a majority of my caregivers and aids, and have maintained my friendship with them even after they were no longer working with me. I know exactly who I would reccomend for someone in a similar situation, and what qualities I want when hiring my own staff. Here are 5 of the most important steps, that I feel will always yield memorable and fruitful teamwork. Even in not so ideal relationships, I have been able to apply these steps to my own perspective to help me personally keep positive and stay grateful for what services someone gave me. MY TIPS FOR WORKING WITH CAREGIVERS AND WHY: 1.) Become close friends - everyone, no matter who they are, work better with people they know than people they don't. Especially in the case with caregivers, you will be working with your aids on a very intimate level, and maybe all the time, and so by becoming close, the trust between you can be strengthened and it will feel less awkward on your part, and less of a job on theirs if your bond is tight and cherished. 2.) Know boundaries - always know what the exact job of your caregiver is. In my case, it was simply as a physical assistant, so your caregiver should know when to assist and how. If they are there strictly for physical aid, make it just that. Once you establish a close enough bond, you might feel more comfortable including them in other non-related things, which can also be a blessing, as it would help them feel more appreciated. 2.) Code talk - code is beautiful. It allows you to communicate with your aid discretely, so as not to draw too much unnecessary attention to you, which can be stressful and sometimes embarrassing if it's a very personal matter. Some signals I've used: Bathroom: American Sign for "toilet" Panic Attack: power button on wheelchair Menstrual Issue: simply, "sanitation" Need Space: Caregiver will literally step back and put "surrender" hands up for a moment if it is clear I am feeling overwhelmed by their care. When I'm relaxed, I nod and then my caregiver proceeds as usual Feeding Difficulty: American Sign for "I'm hungry" or sign for "water" if I am thirsty 3.) Be Clear - the way you communicate has the most impact on the bond you will establish with your caregiver. Be confident, polite and straight to the point. Be appreciative of their aid. 4.) Prepare, Anticipate - it's always easier to work as a team if you know what to expect. Whenever possible, try to inform your caregiver of what you will need in advance (ex: books, notes taken, water bottle). Also, it is equally important to anticipate. There will be times when you and your caregiver will not do as the other expected and this can strain your bond for a bit. Come up with a "Just In Case" plan to ease the potential tension. In personal experiences, I've encountered miscommunication especially during my attacks, and so I created an info card on which I list DOs and DON'Ts as well as medical information so my team is on the same page and can better care for me and support me. 5.) Be Appreciative - always try to show your gratitude. This will help your caregiver know that they are doing what you want and being what you need in the most effective way. Even if you personally hire them, be grateful. Working with your caregivers shouldn't be like pushing a 32-ton train alone. Working together will help strengthen your bond and get things done that are thought to be impossible to conquer. |
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