What Makes Going Blind So Exhausting

BelievingisSeeingUsherSyndrome-e1411488670549

Our senses are a gift to enjoy life, to take it all in, to inspire and be inspired. They remind us that we are alive, and affirm our belief in a real physical world. When one of these senses disappears, it changes that experience, it alters how we perceive our surroundings and ourselves.

The senses that remain learn to process information from the environment and compensate for the one that is compromised. One can feel the divergence and the adjustment taking place in their body. They feel limited in their participation with the world around them. They experience this condition physically, emotionally, socially … in every way.

As my sight has diminished, I feel it most when my other senses experience a sort of deja vu. They attempt to re-create a memory that is similar in all the ways it was experienced before – except in the way I see it.

There was a time when I didn’t have to think about sight. Unaffected, my sense of sight allowed me to appreciate the beauty of life effortlessly, patiently, naturally. I analyzed, perceived and learned in a seamless manner. I wasn’t conscious of it, but I enjoyed the advantages of it. I had challenges here and there with my hearing impairment, but losing eyesight, while knowing what it was like to have it, has made these challenges even more clumsy and awkward.

Knowing what that felt like to see things as they are, so effortlessly, is what makes going blind so exhausting.

I cannot remember the last time I saw things clearly, when an edge was an edge, not a fuzzy indication of one thing ending and another thing beginning. My vision has improved since my cataract surgeries and inflammation treatments, but it is always in a state of some form of blurriness. It’s the kind of effect you see when you look at a pix-elated photo. You may know the moment captured is compelling, but the details are lost in the blurry image. In their place, is the frustration of trying to re-create the image and the tangible moment it reflects in your head. Your sense of sight is replaced by a sense of sorrow and frustration, knowing you are unable to fully participate in this experience.

That loss can be isolating as you share the same pictures and moments with those who can see them, who can fully participate.

At times  my eyes just want to shut down and stay closed until things clear up again. The daily effort my brain makes to re-create the fuzzy images wears me out. My eyes physically become spent from the constant search for clarity.

I simply want to turn it all off. I don’t want to look through a dark cabinet and not be able to differentiate glassware from Tupperware. I want to stop the persistent squinting, zooming in and out while attempting to focus on the words in my favorite book. I don’t want to search the floor for 10 minutes for the pen I just dropped, only to find it right in front of me. I don’t want to be self-conscious and insecure in dark settings, when I can’t read lips to compensate for my poor hearing, when I can’t properly communicate.

These are not just isolated incidences that occur infrequently, they are a daily part of my life, a constant battle to be waged until my body surrenders and waves a white flag. These are times when I become angry and I lose hope in my ability to live the life I dream of.

I dislike being taken care of, depending on someone else. But when my eyes give up, I have no choice. As an adult, the psychological weight of this dependence digs at you. We’re brought up in a society where we are taught to be independent and self-sufficient. We value those things, derive happiness and self-respect from them.

When you are unable to function independently, those concepts gnaw at you. It is easy to lose your self-worth, to retreat, to avoid tasks as simple as folding my clothes. The mere thought of visually interpreting an item of cloth in my hands – after a long day of pix-elated view-finding – makes me want to pass out.

So you play mind games with yourself. To retain some sense of dignity, to assure yourself you are independently choosing not to perform the task, you berate yourself for “being lazy.” The white flag is always there, the trap door is always open. And the internal conflict rages on.

We are meant to enjoy the hue of vibrant colors, the repose of soft music, the spiciness of hot curry, the warmth of tight hugs and the smell of sweet incense … enjoy all of these things, without conflict. These are gifts we take for granted, so it’s natural for those who are denied any of these to feel cheated, incapable of living life to the fullest, undeserving of pursuing all it has to offer.

My biggest challenge, as I lose another of my senses, is to not equate my diminishing vision with being less deserving or less capable of pursuing a passionate life. I know that my dreams are achievable and limitless. I’ve accepted that I’m on a different path to these dreams. I realize I may have to ask for help.

But as I continue on this path, I have to take time to remind my heart I’m worthy of it. I have to remind myself as I close my weary eyes for the night, that my dreams are here now in the hue of vibrant colors, the repose of soft music, the spiciness of hot curry, the warmth of tight hugs, and the smell of sweet incense…

#USHAware
#RaffleforUSH

Share

6 comments

  1. Megan, your words spoke of how my soul feels. I have Usher’s too. You described every little thing so well. Thanks for sharing, it’s nice to be able to connect with someone like me. Keep up the god work.

  2. I stumbled upon your website today and was both impressed and inspired, Megan. I especially appreciated this article as it so eloquently put to words the frustration I have also felt with Usher Syndrome. I would never have chosen it for myself but have found that it has made me and others like me become much more able to empathize with others. Seeing what you have been able to accomplished with the Megan Foundation makes me want to try starting something like it up in Canada. Keep up the good work of raising awareness and fundraising.

  3. Meghan, once again your words have touched my heart. You are such an inspiration to all. I thank you, and send blessings your way.

Leave a Reply

Your email address will not be published. Required fields are marked *