touch my arm to engage with me
My vision loss is a painful experience that is hard for me to share. Sharing requires me to admit that I am a patient, and there is something heavy about being a patient. I am not a stranger to the healthcare system, nor being admitted to the hospital, nor navigating through it. But when my brother had brain cancer and my mother, sisters, and I had to coordinate our family dynamics to provide adequate care for him, it made me witness another level of patients in the hospital. Hence, my vision loss is nothing compared to losing my brother to cancer. By no means is comparing my vision loss to his cancer comparable. It’s different. But when confronted by friends and family who are curious and want to know how my vision is going and how they can help, I feel shame. The shame of being an impostor. I can still see, but it’s limited. I can barely describe what I can’t see, and there are times when different lighting with or without clouds can change the same scenery instantly. My vision is limited, and if I didn’t see it, then how do I let others know that I missed it? It is hard to identify the missing information until someone points it out, and then my typical response would be “no, I don’t see it”. When you are short-sighted by an experience or object, it is somewhat blissful until you realize you have missed it.
The sadness lies in finding out what you missed and living in a reality where you are a patient. The biggest hurdle and source of anxiety is being in social situations. Every moment a new person walks into a room, you don’t know if that person is your friend or not. Or even when you are meeting new people, you cannot read the social cues to determine whether the person talking is addressing you or someone else, or whether they are still talking to you. Initiating and engaging in conversation that used to be easy is now as foreign as visiting a new country. So when I cannot engage in conversation, I would rather listen to my surroundings and feel the air around me. I’m sensitive to smells and sounds, so I spend more time sitting still to experience and enjoy the vibe. Hence, loud areas with a variety of noises make it hard to engage and hone in on a conversation. It’s because when people speak to each other, they engage through eye contact and are constantly reading facial cues for whether the person is excited and interested in the topic, I can’t do that. Without my eyes, I need people to engage with me through touching my shoulder or arm to let me know which side you’re talking from and that you’re talking to me. Even though I’m an extrovert, navigating this new world is exhausting, hence this began a creative endeavor to put together instructions, a manual, and/or tools to help other folks know how to engage and help me. So I’ve made a list for my friends so they know how to help me, and maybe it will help others in this journey.
Touch my arm to let me know you're speaking to me.
When giving directions, grab my hand and point it towards the direction while explaining to me how to get there or where it is. Verbally explain things step by step if you’re going through it with a kid, which helps me map it out in my mind.
When I’m out socializing, I ask that I be with you most of the time. I would prefer not to be left alone or with strangers. If you need to leave me, please leave me in a spot where I won’t need to engage with people. I cannot sense danger as easily, and being left alone with a stranger triggers a lot of anxiety for me.
I’m okay following you around, you don’t have to explain everything to me. But it helps me understand where things are, so I can create a mental map of everything.
If I am at an event where I might know a few folks, then it is helpful for me to know who is here and coming in.
I’m happy to meet folks and engage in conversation, and as long as I’m near you, I don’t have to be part of every conversation you’re having and vice versa. But I would appreciate being checked in during a conversation, maybe when you feel we need to transition, so I know you’re near. I can’t sense if you’re near, and that triggers anxiety for me.
Finally, I’m not sad that I’m losing my vision. But it’s disheartening to lose my autonomy (to understand this, I recommend reading “The Country of the Blind”. I don’t want to depend on you for every single thing, especially when I used to be able to do it myself before. But that is just a part of me that I have to accept and slowly turn that unique perspective into a creative endeavor.
