Maya Angelou hit the nail on the head when she shared a bit of her philosophy in life.
“I did then what I knew how to do. Now that I know better, I do better.”
It seems like, for the most part, we do the best we can until we know better, and then, we do better. It’s not linear and it’s not always that way for every person, but generally speaking I think we could agree that most people are trying to make a better life for themselves the best way they know how. It hit me like a ton of bricks the other day, as females we are taught from, well, forever, to be better or ‘do better’ is to look or ‘appear’ better. At least that’s the way it was in my home, to a degree. I was given rules my male cousins were not. I was to ALWAYS sit with my knees together and usually not allowed to speak to adults, except my mother, unless spoken to.
Wonder why I’m so shy!? Additionally, I was taught rules about the corresponding colors of clothes and seasons, to always smile politely, to never disagree, but instead keep my opinions to myself. Basically, I was to sit quietly, properly, and keep my mouth closed and my eyes wide open. My male cousins on the other hand had none of those rules. Jeans and a t-shirt and the rest was ‘boys being boys’. I respect that my mother was trying to raise a proper young lady on a cattle ranch, god bless her, she tried. She grew up in another time, another place, another world from where we were. There were many other rules for me to abide by, but I guess my point is for me to a better person in her eyes had almost everything to do with appearances, whereas my cousin’s devotions to success were more aligned with fishing or motorcycle riding, physical achievements if you will. So where am I going with this?
When you’ve been taught that appearances are everything and it’s so deeply ingrained in who you are that you don’t know where that ends, and you begin, adding a chronic illness to that can be an added level of shame that people don’t often discuss. In the community we call MECFS an ‘invisible illness’ but truthfully, it’s not invisible. At least not for me. I’ve aged dramatically in four years. My idea of what my appearance should be has gone out the window. I don’t recognize myself in the mirror and I don’t know if I ever will. Thankfully, since I’m mostly homebound, my dog and kitty cats don’t care that my hair is different shades of grey or that my face is wrinkled, they don’t even care that I move at a snail’s pace, they just want to cuddle and eat food (Now that I think about it, that’s a good plan!). It’s when I go out in public that reality sets in, that I feel ashamed, when my gait is off and slow, that I appear drunk when I don’t even drink, when my hair looks disheveled because I don’t have the energy to keep up with it, when I can’t make simple decisions or fumble over my own words, when not wearing makeup shows the world I don’t care if they care, when I have all these unspoken expectations bouncing around in my head trying to make me feel less-than, it’s then that I feel like I failed myself. I don’t know if men with this illness feel this added layer of shame or not, but I can tell you that acknowledging it, accepting it, and trying to be okay with reality has helped set me free a bit.
Much like raising a child, it started off small. In the beginning it was mostly my gait, slow movements and mental processing time. So, I learned to follow the thought process of, yes, my gait is off and I’m slow as molasses, but look at me, out of the house today…you go girl! And then as the chemical sensitivities set in it graduated to, yes, I have no make-up on and my hair is a hot mess of colors, but I do have a smile on, that’s more beautiful than any make-up. And now I’ve reached, yes, today is a wheelchair day, but I’m here and I’m fighting so hard to be here that even though I didn’t have the strength to walk I still showed up. The funniest part of it all is that I’ve never really cared much about fancy hair and lots of make-up preferring to keep things very simple. I’m a self-proclaimed plain Jane who’s always tried to pull attention away from me instead of toward me by absolutely blending into the crowd. Despite that, it’s still a struggle, I think in-part because looking out of place does pull attention my way, and I cannot just blend in as I once did.
I’ll leave you with this. I once had a very wise boss tell me, “Don’t come to me with problems unless you’ve thought through solutions.” So, it’s a little like that. Yes, my appearance or how I appear feels problematic but the solutions or the reality is that what you see on the outside isn’t the whole story. And I need to own my truth, despite what others see when they look at me, I’m fighting for my best life. I’m combatting those thoughts as best I can, and in Southern California of all places, where looks and appearances are
really important to other people, it’s a steep hill. At the end of the day though this is my life to be lived as best as I know how and right now, my ‘doing better’ has nothing to do with appearances and everything to do with physical achievements. I guess me being a ‘Tomboy’ is finally paying off. 😊
Thank you for stopping by for a read! I appreciate that you took the time. I hope I didn’t ruffle any feathers I was just sharing from my personal experiences. I know it’s a touchy subject. Hoping today brings you reasons to smile and laugh.