Most of my life, I lived with a huge cloud of uncertainty hanging over me. Living with a disease that is nameless is a very heavy weight to carry. Not knowing, is hard. It’s frustrating. It’s hard to ignore. It’s pressing. It creates a huge sense of urgency at all times. The stress of carrying that weight is enormous. Crushing.
It is not like I had a handbook on how to handle all of that uncertainty. There was no one to tell me how long it would last, or how to handle the longevity of it. Forty-four years. Not knowing what was coming around the corner provoked a lot of anxiety. I would say that it’s scary especially as a child, but it’s just as scary living with that as an adult. It didn’t get easier.
Learning to live with that uncertainty while everything else around me was going on as normal was isolating. I was chained to this uncertainty, its grip like a vice. It held me back. It consumed me. There was not one person in the world I could talk to that would completely understand. I learned to keep it to myself because I was disappointed when I finally tried expressing how heavy this weight felt. I was met with an attempt at a comfort the person listening couldn’t possibly provide, through no fault of their own. It left me feeling more broken.
Perhaps you are in a space similar to the one I describe. You are living with uncertainty and directly beneath the surface is a sense of urgency that you can’t escape. You’ve also tried explaining this feeling to others who just don’t understand.
The lasting consequences of living with uncertainty that lasted nearly a lifetime, have been hard to reverse. It created a need within me to control everything else in my life. If something didn’t happen the way I thought it would, or had planned for it to, I fell apart. I felt like a failure. It was a vicious cycle.
To be honest, the need to try and control everything still lives within me. It is something that I have to fight every day. I now understand that is mostly a losing battle. Thinking we are in control of everything that goes on in our lives, is one of life’s biggest false senses of security.
Feeling secure is something I chased after. I never felt complete without a diagnosis, and therefore, internally, I constantly felt a lack of security within my own skin. It was silent torture for a very, very long time.
Now that I am not living with that uncertainty of living without a diagnosis, I feel lighter. I feel more complete. However, not much has changed as far as my disease. I still do not have any control of how it takes over my body as it chooses. There are things I do to stay my healthiest self, but they don’t fix things.
The grounding force in my life is my faith. It has slowly healed me, and leaning on it has taught me that life is full of uncertainty, but with faith you don’t have to feel lost or be undone by the uncertainty.
Life is uncertain. We are not in control of what happens next. We have to let go of the need to control everything in our lives. Letting go of that is one of the hardest things I’ve ever done. Like I said, it’s a constant battle, but as with everything, practice makes me better at it.
In a few days, I will leave my baby boy at college. The anxiety of the uncertainty of letting your child go into the big wide world without you there to pick up the pieces can be debilitating at times. It is scary to let go. The truth is, I never had control of exactly what happens to my children. I know that as their mom, I have done the best I know how to teach them independence, how to stand up for themselves and become their own person.
While I do feel sadness and definitely some fear surrounding his departure, I am excited for what the future holds and to see how he navigates this next chapter of his life. I hope that my life of uncertainty taught him that when he faces uncertainty, hopefully he will see it as a time of growth and cultivating resiliency. As I reflect during this time, I know that all of those years of uncertainty that I lived through taught me a lot about letting go.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.