VOLUNTARY HOSTAGE SITUATION
This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain, which I suffer from daily. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village of caregivers, family, friends, agencies, medical professionals, etc.
I preface what I’m about to dive into by first saying each and every person in my life who helps to take care of me, paid or not, Thank you! You physically help me live my life each and every day, which is the most beautiful gift I could ever ask for. I appreciate every single human who takes time out of their lives to make my own life possible. This, in turn, allows me to spend the time advocating for others who need my help. It also affords me the opportunity to live each and every day to its fullest and advocate for systemic disability inclusion.
Now, onto what is behind the curtain of my life that many who do not live with a disability simply do not 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.
Why?
Well, 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 it might appear that I am the cruise director of my own life, ironically, I do not always have control of the helm. At times, this can be emotionally debilitating and cause me to emotionally veer off my proverbial life course.
How So?
If I do not carefully manage 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, which is great albeit exhausting most days.
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? I know I certainly would not want to.
In conversation I frequently talk about people who are “psychic vampires.” These are people whose negative emotions bleed into your own life, which makes it challenging to be around them. Life is hard being paralyzed from the chest down. No doubt. With that said, I do not want to be a psychic vampire to anyone.
However, if I ask people around me to take care of me and I am constantly down all the time then they are going to get exhausted physically and emotionally. I exhaust myself at times in my own head. Again, this is not to say we don’t have challenging ebb and flow times emotionally in our lives, but if I live my life as a quadriplegic with the attitude of “woe is me” and expect people just to hop on my emotional bandwagon — I will be in for quite a rude awakening. I’ve been there. It doesn’t work for my life.
If I want to snack at night I have to ask someone for it. I can’t simply get up, walk to the refrigerator, and grab it for myself. What I need to be very conscious of is if I have just asked a person to do 4 things in a row for me by getting up and down constantly, I find they may get a little irritated that I asked them for yet another thing. Of course, they will likely do it, but micro frustrations build up over time and generally have a way of blowing up eventually. 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. Think about this. This is quite a powerful statement. This is where I have tremendous empathy for many people I know who deal with emotional challenges in their life.
However, this is my choice. It is a decision I’ve made. I choose to live with it. Therefore, I also choose not to complain about it, but rather shed light on it because I know so many others who can never find the words to express these feelings.
My life hinges upon the way other people feel. Stop for a moment and ponder this thoughtfully. 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 while I am strong — even I have my moments.
Relationships & Boundaries
I do know many of my physically disabled 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 respect this as we each have our own way of doing things, but I have tried this. For some reason or another 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.
In the past I did not want to build up a relationship with people, but then they would come in to work and it would just be a job. The caregiver/caregivee relationship is an extremely special one that many cannot possibly understand unless you’re in the situation.
One has to be careful though as with any relationship in life. Boundaries need to be drawn. It doesn’t matter whether it is a caregiver, husband, mother, friend, etc. You need to have very open and honest conversations about expectations otherwise lines can get blurred and people, not necessarily intentionally, can take advantage of one party or the other.
Attitudes & Fears
People around me thrive on my positivity and go-getter attitude. This is great, but most of the time I compartmentalize many of my emotions. I’m not saying this is healthy. It is not. I really do know that and I do have a therapist. 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. Anything in life can kill you in a minute, but there is a higher chance of it happening quickly when you live with a severe physical disability.
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. An internal back-and-forth of compromise. We are quite literally on this planet for a blink of an eye and while I respect that the way I choose to handle my relationships may not resonate with some; I absolutely NEED to be in a household of generally positive human beings.
They say you are or become who you hang out with. This is so true in my mind. If you surround yourself with people that are not going to build you up or generally remain upbeat, I find this bleeds into your own life. In my personal and professional life, I hang out with people who are quite jovial to be around unless they’re going through a hard time. I would expect people that are helping me live my life would like to be around the same type of person!
I only ask, if you are able-bodied, 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 to appreciate your fully functioning body. It is a gift that I suspect many do not critically think about on a daily basis.