When this question appeared in my inbox, I thought that it was a bit of a strange question, because I’m an honest person. I’m honest with myself about what I can and cannot do, or perhaps aspire to. I know what I think, feel and experience.
My sister once said I’m an open book as I don’t hide my feelings. I was bought up to believe that it wasn’t good to hide my feelings. I admit I did this sometimes for fear of punishment, like someone answering me angrily, or having something taken from me.
I always try to smile, no matter how bad things get, because we all need endorphins, and I feel a burst of joy inside my stomach when I do, like butterflies, but much, much larger. I am used to putting on a brave face even though deep down I am scared or uncertain or nervous or in pain. I’ve heard comments like ” but people with disabilities are always happy.” This is not true, we have good days and bad days just like anyone else.
I have happy days, but I also have my frustrated days, my sad days, my “I don’t know how to solve this” days and my completely inconsolable moments when I am at a loss as to what to do about something. I have my times when I miss my friends from home who are still in contact.
I have my fed up, overwhelmed moments or the moments when I seem to be lost in my thoughts. Some people have confused these with being “bitter” or “angry at the world.” I am none of these.
Doctors were concerned when I was little that my premature birth, losing my twin sister and having the disabilities I do had made me “emotionally immature”. We moved a few times before I was 4 and a half.
This was back in the 80s and when I came across this, my heart ached for myself back then. I know I have always shown distress by crying and being withdrawn.
They said that I am best around people who will accept and understand me. I always gravitate towards those kinds of people.
To give myself confidence, I’d act more confident than I felt, and this helped me through situations. People did not know this way of acting was not the “real” me, and I found it worked in my favor, in terms of people who did not notice me before noticing me, and people talking to me more.
I always take the good from the bad: try to change things, or think differently about them. I won’t lie about having felt lonely or shut out at some points. Or feeling completely out of my depth. Or vulnerable, I know I am. Some have said “but you’re intelligent”.
Sure, CP or hydrocephalus does not affect my intelligence, but I am vulnerable. The amount of red tape you have to go through to get things is shocking and has left me feeling bored and more than a little confused, I won’t lie about that, but for the most part, 2 heads think better than one and that’s another reason I’m grateful that my husband can help me with things. We have realized that if you don’t do the paperwork or admin procedure, you won’t get what you are fighting for.
Society has so much to learn about being truly inclusive, and I am sad and disappointed about that. I know my fight for something in life will be more than someone else’s because of this. Sometimes I feel tired of fighting, I won’t lie about that and some things seem monotonous and I don’t like monotony. But something in me makes me keep going, because sometimes that’s the only choice I have.
I am glad to be with my husband. He says we are in this fight together, And he’s right. Whether it’s paperwork, or trying to get something I or he needs or just daily life, we are in it together.
When people ask how I am or feel, I tell it how it is, no matter how uncomfortable the truth makes them feel. Because my life is my truth. So the answer will sometimes be filled with the words “pain” “tired” “exhausted” or “uncomfortable” depending on what the day brings. “Happy” “proud” “accomplished” are also other words. I use.
I practice gratitude and pray silently daily. I thank Karin for this. I find practising gratitude daily positive and liberating and it always puts a smile on my face.
I am forever grateful to Maureen Sharphouse, a certified life coach who I have told things to that I tell very few. I am grateful to her for the breathing exercises that are calming.
I have my personality and am proud of myself and who I am. I can make my thoughts and feelings known in both English and Spanish.
I guess maybe the lie I tell myself is that things are OK when they aren’t. Or that things will be OK when I don’t know if they wil or not. This gives me faith and helps me through adversity.
There is a truth that I will always know: that I am strong and I am strongr than I ever thought I could be.
What’s a lie you tell yourself?