Everyone wants to feel like they have control over their lives. Our longing to have autonomy and govern our own world is one of our core desires as people, and it has been for thousands of years. We want to feel like we have power over our lives. We exert our control by deciding what we want to do and when we want to do it. Losing this sense of autonomy is one of the most difficult things for people to deal with. Unfortunately, I know what that feels like all too well.
We all work to keep control over our world. We do this by making schedules to control our time, making lists to control our behavior, and even creating myths and legends to explain and control what we cannot understand. Feeling like we have lost some of our autonomy makes us feel threatened and uneasy. This is part of the reason that kids get so irritated when their parents say, “Hey, I need you to take the garbage out, now.” They probably are fine with taking out the garbage, but by saying to do it now, you have taken away their control over their time. They no longer have control over their time, and as a result, they reply, “In a minute, geez,” in an effort to regain that control. You go back and forth arguing until someone asserts their dominance and wins, leaving all parties involved feeling hurt and angry. This familiar example for many families may seem trivial, but it mimics how throughout your life you fight to maintain your autonomy constantly, and losing it can have major implications on your life and happiness.
Being disabled, maintaining as much control over my world as is humanly possible is something I focus on almost daily. Since there is so much in my life that I cannot control, I want to maintain what control I do have. At this point in my life, one of the main things I want to control is my time and schedule. This may sound simple enough, since I am single, work from home, and have no kids depending on me, but I assure you, it is anything but simple. I have to build my life, every day, around my medication schedule, my dietary needs, my nursing shifts, and my lifts into my wheelchair, as well as all of the typical things people schedule around like meetings, errands, and work obligations. I often visualize this careful balancing act as juggling chainsaws while riding a unicycle on a tightrope over a shark tank. I hope that imagery portrays how difficult this can seem at times. As I have gotten older and my life has grown more complex, I have had to give up some of my control over my time, in order to make my life function efficiently and maintain my sanity. Learning how to give up this autonomy has been difficult, and it is something I am still working on.
One of the ways I have surrendered some of my control to simplify my life is by the way that I have to schedule my nursing care. Every day I have 3 nursing shifts of 8 hours each. When it is time for a nursing shift change, I have to be home. If not, then someone is not going to be able to get to their vehicle before or after their shift. If this were the only time constraint, it would not be a major inconvenience, since only one shift change is at a time when I would likely be out anyway. On top of this though, I also have to schedule when my lifts into and out of my wheelchair will be, which adds 2 more time constraints. I could even deal with this fairly easily, if not for the fact that my nursing schedule must be made a month in advance to assure that I am staffed. This means that, for example, on the 1st of the month, I have to decide what time I want to get up on the 23rd. I am sure you can see how this can be difficult, and how it removes pretty much all flexibility and spontaneity from my day. In order to make sure that I have the nursing care I need though, this is the way it has to be.
In deciding to give up some of my autonomy and spontaneity in my daily schedule, I was faced with an incredibly difficult decision. Either I let go of my control and live on my own the way I want with nurses, or I retain my control and have to be dependent on family and friends in the event that the nursing agency cannot staff me on short notice. It was a situation where no matter what I decide, I was going to be giving up some of my independence and control over my life. After struggling with this decision for some time and trying without success to find an alternative, I finally decided that living the independent life I had worked so hard to create in a rigid schedule was better than relying on others and surrendering all of my independence. Although I am certain I made the right choice, it has still been very hard for me to deal with losing that control.
The initial feeling of loss after making this decision was the worst. I felt like I was a prisoner who is told when to wake up, when to eat, when to use the bathroom, and when to sleep. I thought that my social life was over because when friends would spontaneously say, “Hey, let’s go to happy hour after work,” I would have to decline to go do a shift change. I felt powerless over my own existence, and life had definitely hit me hard and knocked me down. Thankfully though, I was not done fighting. So, I put on my big boy pants, gathered my inner strength, and got back up for round 2. After trying out this new schedule, getting used to it, and experimenting a little bit with ways to add flexibility at times, I found that it was not nearly as limiting as I initially thought it would be. I also saw, after my emotional hijack ended and my blinders came off, that just because I scheduled a shift change on one day did not mean I couldn’t alter it with enough notice, which gave me back some amount of flexibility. Now, it is still enormously inconvenient sometimes, and yes I have had to turn down the occasional social invitation, but it has not ruined my life at all. I still live the happy, successful life I had always dreamed of for as long as I can remember even though I am stuck in a rigid schedule.
You will probably not have to give up this amount of your autonomy anytime soon, if ever. There are going to be times in your life when you are going to have to surrender some of your control though, and how you behave in these moments, and more importantly how you deal with the feelings of loss they bring, will have a large impact on your happiness. I hope my story will help you to put things in perspective, and that you will remember that with an open mind and some creative problem solving that you can often greatly improve your situation. Always keep in mind that your reality is skewed by the lens you use to view it, so make sure you choose a perspective that gives you the reality you desire. By successfully working through these attacks on your autonomy and power, you will allow yourself to live more happily, strengthen your relationships, and experience life more fully.