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The following post was written by Ali Ingersoll as a simple Facebook post that I absolutely loved because it describes the life of a person with a disability better than I ever could. She is an outstanding disability advocate and blogger you can find more of her work on her website Quickly Quad Diaries
This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village – caregivers, family, friends, agencies, medical professionals, etc.
I need to first start out by saying that anyone willing to help me, paid or not paid, physically live my life each day is such a beautiful gift and I appreciate every single human who takes time out of their life to make my life possible.
However, there is a side of life many of you who do not live with a disability cannot possibly see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.
I have to be mindful of those who take care of me. I have to make sure they feel safe, compensated, loved, taken care of, and appreciated. This is important. Anyone who is helping me is responsible for making sure I physically stay alive each day. While I might direct my life I don’t always have control at the same time. This can be emotionally crushing at times.
How so? Well, if I am not carefully managing the multiple emotions of people in my household to make sure they remain happy and healthy then they either will not be able to take care of me or will not want to. Many people feed off my positivity and determination. This is not to say I don’t have my hard days, but who wants to the care of a person who is grumpy or angry or running a drill Sgt. type of life each and every moment?
If I want to snack at nighttime I have to ask someone for it. I can’t simply get up and get it myself. However, if I just asked that person to do four things in a row for me by getting up and down they might get a little bit annoyed with yet another thing I ask them because they have been running around for me. I have to strategically think about how and when I ask for things.
At times I feel like I have become my own emotional hostage. I have to push down many of my personal emotions to make sure others around me are emotionally taken care of before dealing with my own personal emotions at times. This is hard. This can feel so lonely. Often times, I feel more emotionally disabled than I do physically. However, this is my choice. It is a decision I’ve made.
My life hinges upon the way other people feel. Think about this. Critically. If you are able-bodied and you want something, you simply get up or go out and get it. I can’t do this. Sometimes I sit and cry to myself at night after a long day because everyone else around me is having a hard day, so I need to take care of them, so they will take care of me. It’s a give-and-take, back and forth, and it can be utterly emotionally draining.
I know this is my life. I don’t often complain. I keep pushing forward, but it can be devastating at moments. I’ve learned to live this way for the last 12 years, and I am strong, but even I have my moments. I do know many of my friends who have a strict line between church and state with respect to making sure people’s emotions do not bleed into their own lives when they are being taken care of.
I have tried this. It has failed for me. If I do not take care of those around me then those around me may not have the will or desire to help me.
People around me thrive on my positivity and go-getter attitude. This is great, and most of the time I compartmentalize many of my emotions. I’m not saying this is healthy. It is not. However, this is my life. This is how I’ve had to adjust and it can be utterly terrifying. Truly.
My biggest fear is being left alone and not having anyone to have my back so that I don’t physically die in a day. The simplest of things can kill me – my catheter getting clogged and overfilling, being alone, and having a stroke. It can happen in 30 minutes.
So, I have somehow willingly put myself in my own mental hostage situation. It is hard. It is life. It is my life. These are the compromises I have to make in order to have a household of people around me who want to be around me, and help me.
I only ask that the next time you get up to go get a cup of coffee or tea you think about how you are able to do that on your own. You don’t need help. Just take a moment appreciate your fully functioning body is all I ask.
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