When I talk to groups of people often seniors who live with vision loss someone almost always brings up the importance of grieving – and they are absolutely right! Here are two sections from Chapter 4 of my book: When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery.

GRIEF IS A MESSY BUSINESS. CAN YOU AVOID IT?

I remember wanting to have a funeral for my eye. It would admittedly have been tricky since the eye was still there. (My other eye can still make out shapes and colors.) But I might have lit a candle and grieved for the visual precision, detail, and power of instant doing that I had lost.

I did weep sometimes, but mostly I was just numb. What I wanted was to get back to work. It’s common to want to keep busy, and what you did before may not be available. Getting busy with practical tasks that help you manage your life independently can be therapeutic. (More in Chapters 2, 3, and 7.)

I never talked to a counselor or a mental health professional, and no-one suggested it. This plan had some merit compared with, say, lying on the living room couch tossing the empty whisky bottles over the back—the route that one person took to the Carroll Center—but it lacked the difficult journey to find out who I now was, or the discovery of dark locked bins in the back quarters of my mind, which held self-pity, resentment, and envy.

After a couple of years, you may (like me) have begun a different kind of life, with grief not showing up much. So you may not dig down into what lies under the surface. You can be buoyed up by the special status that people give you or enjoy learning the skills and astonishing technology of modern vision rehab. But at some point, the bewilderment, anger, fear, and feelings of uselessness can well up and get in the way of living. This may be the wake-up call. It’s time to grieve.

You may find yourself more accepting and compassionate after going through grief. As DeAnn from the Focus Group put it, “The challenge of vision loss can unlock some doors in your psyche you never knew you had.”

HOW DOES GRIEF UNFOLD?

Vision loss impacts each life differently, though it does often start with disbelief or numbness. The situation simply cannot be comprehended, cannot be taken into the mind and heart. One element of vision loss may hit hardest for a time; then another rises up. The loss of ability to continue with a job may be the biggest shock, or the loss of driving and the freedom it gives. Or it may be the actual loss of vision—that stream of bright images, which used to convey beauty, fun, and knowledge.

Grief for loss, and grief for loss of vision have both been studied extensively in the past forty years. Some researchers think that grief must be experienced in several stages before recovery can occur. Others think grieving can vary according to the culture and the times. There can be great resilience—meeting the loss with determination and energy. But there is some agreement that there is no script for grief. Emotions are not felt in a particular pattern or in neat packages.

Here is one short description of grief:*

• Numbness (mechanical functioning and insulation from society)
• Disorganization (intensely painful feelings of loss)
• Reorganization (re-entry into a more normal social life)

Researchers have also studied grief after vision loss. Here are the phases outlined in an important book by Dean and Naomi Tuttle:*

• Trauma
• Shock and denial
• Mourning and withdrawal
• Succumbing and depression
• Reassessment and reaffirmation
• Coping and mobilization
• Self-acceptance and self-esteem

The phase of mourning and withdrawal is the one I unfortunately skipped. This book misses another important element—anger. (One famous writer on grief understands the place of anger but misses out sadness!) *

None of this will fit your experience exactly, but it may be helpful to know what might occur and that the painful and uncertain process of grieving is almost certainly important to your future well-being.

Book: When You Can’t Believe Your Eyes: Vision Loss and Personal Recovery, Publisher Charles C. Thomas (2019) Available on Amazon in print, and Google Play Books accessible eBook, NLS talking books (#DBC11619) and on Bookshare. Apply for accessible free copy here.

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Winner of Outstanding Service Award, Bay State Council of the Blind, 2020

And the VRT Publication Award, AERBVI, 2020.