I have tried to deny the painful necessity of growing through my serious vision loss over and over. Denial takes a lot of work to dig up. Each bit you fling out seems the final one. Then another fear, another confusion shows up. But do you want to stay inside a little box with shrinking opportunities for your abilities, your generosity and your desire to be useful?
No one wants to be the person with the white cane; the person who has to have a helper at the grocery store; the person who doesn’t know when it’s her turn to speak; who has asked for too much assistance because she was lost to herself; who has allowed spiritual advisors, friends and relations to behave as if her boundaries can be invaded because she can see so little.
Once I could accept that I have very little sight, I could move beyond that limited idea. I could realize that all of us are way larger than our bodies and senses. I have had to battle and get a lot of help to find the strong sense of self that everyone, especially everyone living with a disability, must find and make their own.
You can’t have a strong sense of self if you still believe somewhere that people who see well are the real people, or have the real lives. I still shrivel up and become compliant sometimes, fear overcoming the steady sense of “I am,” instead of saying “I’ll have to think about that,” or “Do you really think so?” or just “Hmm!”
I expect you too want to avoid using your white cane – mine lived in my bag for years till I found how dependent I was without it. Relying on someone’s arm on one side only, is no substitute for the tip of your cane swishing from side to side checking the ground two feet ahead of your own two feet. It would have found that protruding front step that I fell over while holding the arm of my friend.
Perhaps you are letting your friends and family, the grocery store clerk, even the cab driver take decisions without consulting you? It took me a long time to speak up when I couldn’t see the other person’s face, to ask questions so I was taking the decisions.
Or you are allowing a spouse or your friends to tell you what to do so you can live in their sighted world in make-believe equality. I have had some years of therapy to value myself, know what I can and cannot do well, and set boundaries in my relationships. I have had painful conversations with close family and friends where I tried to state with love how they have to expect differences in a person who sees very little.
Each person has to find the right balance between doing things independently and letting someone else do it. The danger lies in allowing your daughter, spouse, aide or friend to slip into doing a lot for you that you could learn to do for yourself – to hand you the fish instead of the fishing pole.
If you allow other people to do things for you that you could do for yourself in another way, you are reinforcing incapacity in three ways:
- you are continuing in the belief that sight is central to a real life when you could be finding satisfaction in how much you can accomplish. Check June’s comment on Part 1 about the “a-ha” moment when you get it right.
- you are not learning and practicing new methods of making coffee, getting to the store, or visiting a friend, all of which will strengthen your confidence and belief in your abilities.
- you are letting someone who has sight take over a task from you – perhaps because he is afraid for you, as if you didn’t have enough fears of your own! Or she is strengthening her self-esteem by doing something for you instead of giving you the information that would allow you to do it for yourself.
Check out The Carroll Center, which serves people losing vision in New England and beyond.