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By:  Jean Feeney, J.D.

Maxine Griffith introduced Ellen Morrow, whom she met through Vision Loss Resources of Minneapolis. Maxine said that those with PXE are the experts – we all have stories to share. We learn more from each other than we may learn from our doctors! Maxine said her vision loss still allows her to perform many of her former volunteer work, teaching reading to students of English as a second language, but found resources and now is trained as a counselor to others with vision loss.

Ms. Morrow said she agreed with Maxine’s statement that patients themselves are the “experts.” She simply hoped to provide a framework for what we already know. She observed that, if we live long enough, we will suffer many losses – the loss of a loved one, a serious illness, and so forth – and we will get through it. (She recommended a helpful book entitled, When Going to Pieces Holds You Together by William A. Miller).

Ms. Morrow said that her mentor, Dr. Ken Moses, a clinician in Chicago, has used some of the ideas of Elisabeth Kubler-Ross and put them into the context of medical illness. Ms. Morrow described these ideas in her talk.


Event Loss – Something that affects the rest of our lives, and which may get us some sympathy (such as receiving the initial PXE diagnosis).

Non-event Losses – The loss behind, the things you have to deal with: these are the most significant, and represent “the loss of what you thought the rest of your life would be like.” When the event is the loss of some vision, there is a long list of non-event losses: driving, reading, sewing, working, and especially a sense of autonomy and spontaneity. Now one must plan ahead for everything. Another non-event loss is the way people treat you differently, with kid gloves, being patronizing, avoiding you. To deal with these non-event losses, Ms. Morrow said one must reformulate and reconnect, as Maxine has done. A woodworking teacher who lost his vision retrained and became a chaplain in a hospital. Support groups are invaluable for non-event losses, Ms. Morrow said, because other patients understand.

Vicarious Loss – Feelings experienced by those who are connected to the patient. But remember they may be in different stages from the patient.

Anticipatory Loss – Wondering “What will happen to me?” This causes anxiety and grief.

Layered Loss – Several losses may occur at once, so that it is hard to figure out what you are feeling about what. For example, one may be dealing with the illness or death of a loved one while a child is going off to college.


Ms. Morrow described several common feelings experienced after a loss, and noted that the stages do not always appear in such neat order:

  • Denial, shock, and disbelief – These feelings buy you time to take in the loss and adjust.

  • Guilt – Wondering, “What if I had gone to the doctor sooner?” “Am I being punished for something?”

  • Anger – Depression – This is a spectrum from the outward expression (anger) to the inward (depression). People need to move along the spectrum. If you are angry; get in touch with your sadness, and vice versa. Ms, Morrow quoted a friend who said, “A grief expressed is a grief diminished.” Friends can help by saying, “I hear you,” and “No wonder you feel that way,” rather than by trying to cheer you up.

  • Adjustment – Acceptance, coping day to day. The event gradually becomes a part of you.

  • Physical reactions – These may include nausea, headaches, muscle aches. Take care of your body; perhaps a massage will help relieve tension.

  • Mental effects – Perhaps you can’t remember things; this is because your mind is attending to the loss.

  • Social effects – You may not want to be out with people, and become lethargic. You may become angry or depressed, as discussed earlier. These are normal and natural feelings, and self-healing.

  • Spiritual reactions – You may feel mad at God. Later, you may reconcile and your faith can be strengthened. (One attendee recommended two books on this subject by Rachel Naomi Remen, M.D.: Kitchen Table Wisdom and Grandfather’s Blessing)

Tools that one can use to deal with these feelings are inner strength (having a belief systems that your practice) and outer resources (clinics, assistive devices, and public or non-profit agencies).

Ellen Morrow offered a wealth of tools and encouragement to PXE’ers! Please see the NAPE website at www.napxe.org or call the NAPE office for referrals to some of the books or other resources mentioned.

By:  Jean Feeney, J.D. 10:1 (January 2003)