We are a naturally evolving ever changing species. We start as these “perfect” tiny little creatures that are supposed to be everything that is perfect in the world and as we grow with a curiosity to learn about all that is around us we develop a personality all our own. The seasons change from fall to winter, winter to spring, leaves turn color and maybe we are going through some metamorphosis of our own each season. Flowers bloom skies become brighter and, all too soon children run wild and the first belly flop at the local pool erupts with a huge splash. The lemonade stand on the corner with a hand painted sign can only mean one thing; it’s Summer. The splitting rays of sunshine come to a close along with the cheering of children all day as Summer becomes Fall. The seasons go on and on and people change. We change, and we grow, and we dream of all the things we ever wanted to be. Dream of all we can be and all there is do in this life. We grow, we grow up, we grow old and then finially more change on this physical earth.
Naturally our bodies change, age, get older and eventually weaker. Eventually we may deal with achey joints, a paining back, arthritic knees, and maybe even more serious ailments. But what about all those who see many of these changes much younger than we expect. I am a chronically ill person and I face this every day and I am not alone.
As someone with a body that is constantly changing, constantly deteriorating and constantly surprising me, I must deal with many changes and losses to my body that can be emotionally devastating. In many ways it is as if I am aging quickly. Walkers, wheelchairs, adult diapers, feeding tubes, shower chairs and doctor bills sprinkle my bedroom as if I am living in a hospital. However, it is so much more than the aids needed to keep a chronically sick body functioning. It is how disability culture, society, beauty and how I will talk about the changes to our bodies.
When, I first lost my ability to walk I was devastated. I went through a handful of differet assisted devices and medical devices from arm crutches, wheelchairs, power chair, shower chair, toilet chair etc.; and each one created an emotional response. When it was time for a more extreme device, that meant my body was failing more and that realization is scary. Change is scary. Will my body ever work again? Will I be my old self? Can I do what I want in life? Will I still be attrictive, and to whose standards? I felt shame in the loss of function, and independence. The loss of independence is emotional to say least, and asking for help is not easy (when you have that ability, and not all of us do). The stares, stigmas and shame from others does not make each change easier. Many of my devices, however, over time have helped me lead a more independent life when I would not have been able to otherwise. So, as a disability community, why are we so hard on ourelves, and as a society why do we patronize an entire community for devices they need to thrive and survive.
My most difficult change came just one month ago, when I was told just how much my body was failing. I was severley malnourished and needed a feeding tube. I was admitted and my tube was placed within days. I still have yet to adjust to my tube and have not been reaching my feed rates. It is incredibly hard to get used to not eating meals, looking down at my stomach and seeing a tube instead of my stomach and to dealing with the pain. It is a loss. This time, not a loss of my hands, feet, arms, or legs, but my stomach. I will not feel shame though, only greatfullness that my body continues to fight and the tubes that give my body the chance to do so.
Now I am asking society to make a change. We need to stop discrimating against the disability community for our ever changing bodies. I am also promising myself to stop shaming my own body and mind for things that keep me alive, and nourish my brain body and soul. Sometimes assisted device and medical are needed, or maybe they arnt, sometimes we look different, and maybe we don’t, sometimes we need accommodations and sometimes we don’t, sometimes we may “look” sick, and sometimes we don’t. Heres the thing disabled people don’t have a look, chronically ill people dont have a look, but when we are visable we are just as fierce, strong, awesome, and the last thing we want is shame for things out of our control. We don’t need your pity, but would love your friendship. Now I am asking the disability community to make a change do not forget your strength, it is okay to mourn the loss of, but never feel shame. Our voices will be heard and we are not less than, and do not stand for discrimination. There is nothing wrong with change or loss, growth, or age, but always be proud of the body that fights for you because I am proud of you.