I would call myself a master planner.
I do not mean at planning big events, outings, or vacations. I mean I am a daily master planner.
As a disabled person, many moments of the day involve a plan, even down to planning how I will get up off a certain chair or into or out of a certain car. All of it requires thought and planning. It is mind boggling to think about all the minuscule details I must plan throughout each day just to get through one day!
A huge part of that planning involves careful calculation of preserving precious energy, too. I must make sure that I have planned down to the smallest detail to make sure I can make it to the end of the day. There are many nights where I will sit in the living room for an extra hour or so, just to muster up enough energy to make it to bed. Like an inner pep talk.
When my kids were small and I was working part-time, the energy planning was SO hard. I never had enough left into the tank, often not even being able to walk to my bed at night. My incredible husband, who I am sure did not have much left in his tank either, managed to carry me to bed many of those nights. Looking back, I am not even sure how we did it, but somehow, we managed together.
At that time, I was not using a wheelchair in my home, even though I am sure that would have helped me. I was stubborn in that way. Knowing I needed something badly, but I guess not wanting to really admit it to myself. That part was hard for me. Now that I have crossed that threshold, I wish I could go back and tell that young lady, “Don’t be crazy, accept the help! It will change your life.” In many ways, my stubbornness and pride made my life so much harder.
I am thankful that I have a good sense for time management. That quality serves me very well and helps me daily. I thrive on the planning, really. It is something I have learned to enjoy because I see how much that helps me. I just need to be better about how I react when things do not go according to the way I have planned them.
It’s not that I want to be rigid, but when that happens, I have to start from square one, often having to formulate a new plan very quickly. That can be super stressful for me. It can cause a sense of panic, depending on the nature of the change in plans. It is something that I am working on. I am trying to be better about controlling that internal panic when a change in plans happens.
If I tried to tell those around me what was going on inside my mind, they would think I am crazy. Most people do not have to give a second thought to many things that I have to spend a great deal of time thinking about. That part can feel frustrating and isolating to me. I share this because I know that I am not alone. Constant planning is just part of living with a disability. I never share to indicate that I have it so much harder than the person reading this. It is to help others become aware of what life with a disability looks like. Educating others on our different ways of life is so helpful in understanding one another. We all have those things in our lives that we struggle with.
The thing about disabilities is that it can happen to anyone. Maybe it is just temporary, or maybe it is not if that happens to you. One thing I do know is that if it does, it will turn your life upside down and you will find yourself having to plan the smallest of details, too. Constantly trying to adapt and figure things out – it is a full-time job in itself.
Many times, I have had people reach out after becoming injured. They want tips on how to manage. They are understandably at a loss for how to plan that much detail to just exist and do simple tasks for themselves.
It takes humble courage to rise each day, knowing the mountain to be climbed and what it is going to take just to get through an average day, even with no added special events. Accepting that as part of my life has made facing that each day a little easier. Even looking back on my childhood, I was doing this. It is the life I was given, and the older I get, the more thankful I am of this life. In my younger days, I often said, “I was dealt a bad hand.” But I was not dealt a bad hand. I was dealt a very intentional hand. I just had to learn how to play it.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.