Sep 2, 2020


My name is Marlene Cust. I am a senior citizen, and legally blind due to retinitis pigmentosa (RP) and age-related macular degeneration (AMD). In my writing, I want to acknowledge both the challenges I face and the positive coping strategies I have developed over time. Blindness is experienced by individuals in unique and various ways. There is no ‘one size fits all!’ Always there is that hope for a cure sometime in the future. In the meantime, for me, hopefulness lies in acting with courage, competence, confidence, and decisiveness every day.  My blog entries present living with blindness ‘the way I see it’.

BRidging the gap

My inability to see the faces of my loved ones and of those with whom I interact is a major loss to me, which I grieve every day, and a daily reality which I have reluctantly come to accept.

In more intimate relationships, physical contact and closeness help to mitigate this loss: holding, cuddling (and smelling) that new grand-baby; hugging, touching the face, and holding the hand of a loved one or close friend, though none of this is possible during the current pandemic.

I habitually greet people I encounter casually in hallways or on the streets. I recognize many familiar individuals by their voices, by their habits, mannerisms, and routines, or by the way they walk or move. It is also helpful when people identify themselves to me, or I myself ask who they might be. Such interactions, although gratifying, seldom progress beyond an exchange of social niceties and chitchat.

I don’t have the ‘gift of gab’ or the ‘art of small talk’, nor do I find it easy to talk to anyone about anything. It is also a challenge for me to engage in unstructured group discussions, and I tend to be a listener rather than a talker in these situations.

Now I look for ways to alleviate the sense of isolation and distance, and to overcome barriers to social connection engendered by my blindness. I have found that engaging in one-on-one in-depth conversations – a meetings of minds – is one way for me to bridge the gap and to make meaningful connections. Such an exchange, in my view, has three essential components: non-verbal messaging, the content of what my conversation partner is saying, and my response to this communication.

Although I can’t see facial expressions, hand gestures, and body language, there are other non-verbal cues on which I can focus. I pay attention not only to the story, but how it is told, the particular use of language, tone and rate of speech, fidgeting, hesitations, long silences, sounds of affect such as chuckling, sniffling, and yawning. I also need to be aware of my own non-verbal communication. It’s a two-way street. 

Being an effective conversationalist entails far more than simply hearing the sound of another person’s voice and thinking about what I might say when it’s  my turn to talk. It is important, of course, to pay attention to what my partner in conversation is actually saying. I make every effort to listen attentively and respectfully in order to grasp what exactly she is attempting to communicate to me. I want to understand what is on her mind, where she is coming from, and what kind of feedback she is expecting of me.

Conversation is a give-and-take, a reciprocity, a dialogue, a sharing of memories, stories, thoughts and ideas. I believe one should listen more than one talks.  When I do speak, I keep in mind that this is an exchange, not a monologue, a debate, or an argument. I may offer empathy, express my agreement or a difference of opinion, answer a question, ask for clarification, give feedback, relate my own experience, or steer the conversation in a different direction if I find the content spiralling into mere gossip, negativity, argument, or nastiness. 

I consider a successful conversation to be one in which each of us leaves feeling uplifted in some way – recognized, heard, comforted, challenged, informed, inspired – and looking forward to future encounters.

– Marlene Cust

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