Is it at YOU or at Retinitis Pigmentosa?
Anger. Frustration. Rage. Stress. Anxious. Loneliness. Despair. Negativity.
The emotions never cease to exist. As a blind, or going blind, individual, your life has all of these emotions and so much more. They come and go, day in and day out. They rise at inopportune times and have the power to take you down to a whole new level.
Through my journey, I have been depressed. I have been frustrated, to a point that I have never felt before. I have been angry. I have been lonely, even when surrounded by love. The journey to blindness is a dramatic adventure full of ups and downs. It has the ability to shift a good day to the worst one ever in a few seconds. That power is terrifying and managing the emotions can be quite the challenge.
Through the years, I have discovered many tools to assist me. Mindfulness being the most substantial and powerful assistance. Mindfulness, boiled down to it’s most simple description, is based on meditation, gratefulness and being present. The power of mindfulness was once silly to me but after nearly 4 years of practicing, the power of it is truly understated. Every one can take their own journey with mindfulness but I suggest it, to everyone.
While I continue to grow and learn more tools to assist in my feelings, I have wondered, what about those around me? How do they feel? Are they mad at me or the disease that is changing me?
Is it me?
The challenge of not seeing never stops. There are no breaks or days off. From the moment you get out of bed until you return again in the evening, the day is filled with challenges that lift you up and bring you down.
Through that day, whatever day it may be, I frustrate others. Whether I’m in the way, making an accidental mess or unable to help with a simplistic task, there is no doubt that my lack of vision creates frustration. My wife, who as you most likely have read, is my true rock and best friend, deals with it most. She is the one that has to kill the spider, which I no longer have the ability to see. She is the one that has to drive us to where we need to go. She is the one who sees spots on the mirrors and a mess on the floor, which I just can’t see anymore. She gets frustrated at times and I understand why.
My daughters feel it as well. Whether it’s my inability to read directions, help them find a small toy, or read them their good night book, they feel frustration. They feel the challenges and Dad just can’t help, they have to figure it out or ask Mom for help.. again.
These feelings are overwhelming and my family, who are closest and dear to me, feel it most.
When I step outside of myself and my immediate support of my wife and children, how do others feel? Are they frustrated with us because we move and handle ourselves uniquely? Are others upset with us because we say “no” to a situation we are simply not up for? Do they think about it? Do others attempt to put themselves in our shoes?
The truth of the matter is that I have lost friends, life long friendships have disappeared into thin air. We have missed opportunities to meet new people. We have chosen to not take a trip or make an adventure because we just weren’t up for it. We make choices for our family that are best for us, selfishly and knowingly. With each choice, we know that there is a reaction. With each decision we make, we know that we will disappoint someone.
We hope they understand. We hope that they can be empathetic to our situation and the challenges that we face, every single time we do anything. We hope that they would stop, just for a minute, to think about the day we live, every single day.