Accepting your fate is one challenging thing and with the disease Retinitis Pigmentosa, it’s a very large portion of working through the process of losing your vision. The little things that should and were once so easy have become challenging. The simple tasks that once took no time at all, suddenly begin to be quite the challenge and take much longer. It’s all part of it but man, is it hard.
Last night, my wife, daughter and I went out for some clothes shopping for our growing 3/5 year old. She has sprouted up out of no where and all of her clothes were beginning to shrink on her. After our shopping we went to Souplantation. Having not been to one in well over 10 years, I was interested to see what it had become and with a hungry family, it seemed fitting.
When we got to a normal “sit down” restaurant, I normally can’t see the menu without using a magnification tool or asking my wife to read it to me so I originally thought that Souplantation would be a fun change, no menu = no aggravation. I was dead wrong.
The loss of my vision is becoming more and more apparent to me in everything I do. Whether it’s walking at dusk or trying to pick up toys from my daughter, the smallest things are getting much harder to do. Last night at dinner, I was overwhelmed.
My daughter, who is the best helper a man could ask for, is aware of my vision loss and helps me constantly. More times than not, she takes preemptive moves to help me and at 3.5 years old, it’s quite inspiring. Last night was no different and when we walked through the dimly lit restaurant, she held my hand and make sure to not let go, she knows that I can’t see much anymore. We made our way to the “hot” portion of the buffet in search of soup and pizza. We found it and filled our plate. I wasn’t able to read the signs anymore but hey, who cares right? If you don’t like it, just don’t eat it.
The reality of my lack of peripheral vision hit strong as I turned around to not only grab Peyton’s hand for our journey back to the table, but to find a large gentleman holding a plate full of food. I ran right into the plate and luckily, his quick reflexes saved the food before it flew all over the floor. Felling embarrassed and immediate anxiety, I apologized profusely before P found my hand and we began our journey back to Mama.
The incident may not sound bad and in all reality, it wasn’t but the truth and fact that my vision is getting so low that I can’t easily navigate around a buffet shows me that it’s about that time. The time for the White Cane.
Now, I will only speak for myself about this but I am sure that many others feel the same way. When you see someone who is visually impaired using a white cane or a guide dog, isn’t there a part of you that just feels bad for them? Feels bad for their struggles? Feels bad that they can’t see well? I do. In fact, since my diagnosis, my wife and I have seen 4-6 people using either a cane, a guide dog or both and each time, we almost break down into tears, as our reality holds just that.
Pity is a word that I have always just disliked. I don’t want people feeling bad for me or expressing their sadness for my reality. I don’t want to hear how much it sucks or for their hope or “prayers” for a cure, because in all reality, until a cure is available, this is my reality. It’s the world that I have to live in, not by choice but fact.
Using a white cane is simple enough. You use it to navigate where you are stepping and for someone with RP, it allows the person to look ahead, instead of down at their feet. Not having any peripheral vision is very challenging and unless you are constantly “scanning” or “sweeping” with your eyes and head, it’s extremely easy to trip, fall or run into things that are outside the arena of your central vision.
Last night, I realized that I need to use a cane when we are out in new environments and public places. I don’t want to. I don’t want to be the “blind guy.” I don’t want to feel peoples eyes on me full of pity. I don’t want to be “special.” I realized that I need to embrace the use of a cane to let others know that although I may look normal, I simply can’t see well. With a cane, people may notice that fact and the fact that if I bump into them, it’s not on purpose, I just can’t see you.
No matter how much I don’t want this, it’s what is happening and the next step on my adventure in vision loss. I’m worried about it, in every possible way, but it’s a step that needs to be made. Soon I will walk using a white cane and soon I will be notably disabled to the world. Soon I won’t be able to hide it and mask it. Soon I won’t be able to play it off as “clumsy” or “moving too fast.” Nope. Soon I will be feeling pity from strangers that have their hearts in a good place, but have no idea what it’s like. No idea what it’s like to have to use a tool to walk. It absolutely sucks.
With this, I ask you of a favor. When you see someone who needs assistance, whether it’s a cane, a walker, a chair, hearing aids or anything else, don’t give them pity. Respect them. Respect that they aren’t letting their impairment keep them at home, they are enjoying their life, out and about. Respect that they have learned to live with their challenge and have (most likely) mastered their way of life and although it may be different than they want or deserve, it’s their reality.
I don’t want pity. I don’t want apologies or empathy. I just want to feel better about being out in public and hopefully, not running into people and things. I want to feel a bit more freedom to look up while I walk and to let others know that, although they can see me, I simply can’t see them. I want to find the highest quality of life that I can with this visual impairment and for me and my family, that isn’t staying at home every single day.
As our adventure continues, try and show others a bit more respect than yesterday. Maybe a bit more compassion for the elderly couple walking slow in front of you. A bit more understanding for the man trying to read the signature pad at the grocery store. Just for fun, let’s all try it.