When Someone You Know “Goes Blind”

Vision loss is no picnic for the person who is experiencing it.  Rarely do people “go blind” over night.  Most experience a gradual decline and have up and down periods. Some people retain useful  RV (residual vision).  Eye conditions create many types of abilities and restrictions. Macular Degeneration causes loss of central vision needed to see detail.  Glaucoma can cause tunnel vision,and  reduced night vision.  Diabetic Retinopathy causes reduced vision, especially at night, and sensitivity to glare.   It’s a bleak day at the opthamologist’s office, when a declaration of ‘Legal Blindness’ is made.  A journey of change  and adjustment begins.   Feelings of depression and anger are common. New skills must be learned.  Everything seems difficult.  Me?  I thought my head would explode trying to remember everything.  I learned that multi tasking is best left to sighted people.  Patience with yourself is critical. It takes more time to do everything, it seems, when you are doing it with less sight. It frustrated me to ‘think’ about everything I was doing. I resented spending 20 minutes on a task that I once performed in 5 minutes.  Emotional support is very important for people experience vision loss.  Peer support groups can make all the difference.  Being able to share the daily frustrations with others ‘in the same boat’,  is very helpful.  I joined such a group many years ago. I continue to ‘chair’ this motley crew today.  People come together every second friday of the month. For some, it is one of the few social outings they will have that month.  Everyone relaxes and has a chance to share whatever is on their minds.  It’s a lot easier to laugh about an experience related to blindness outside of the ’sighted’ circle of support.  For example, people roared when I admitted that I had accidentally washed my hair with Vim (tub cleaner) instead of shampoo that morning.  OK, it was a few years ago and I tend not to do that kind of thing anymore, but it is the type of thing that is best shared with people who ‘understand’.  The most commonly voiced sadness and frustration with new group members, comes as a result of loss of a drivers license or car.  The family members and friends of the person who has lost most of their vision,  must also go through a period of adjustment.  I often hear people who are new to vision loss, particularly older individuals,  expressing that they “feel like a burden” to their family members.  Sometimes, an entire circle of friends seem to drift away out of the life of a man or woman who is experiencing significant vision loss.  There are professionals etc. who can elaborate on the whole ‘psychosocial dynamics of blindness’, but here’s my wise advice:  Do not smother your loved one who has lost their vision.  It is far more helpful to facilitate good skills and O & M (orientation and mobility) training with a service providing agency (like CNIB in Canada) than to adopt a “let me do that for you” attitude.  However, realize that this is a difficult time. Some people learn faster than others.  Some skills are just too difficult for some to master. There is the element of safety to consider.  It’s nice to believe that your brother or mother who has lost their vision, can ‘do it just like anyone’, but things like using a stove, chopping, navigating through a noisy, busy mall with a cane, are not safe to attempt, without good skills.  Every human being has a comfort zone and it is not fair to force someone into a situation where they are thrown out of it. I think there are unrealistic expectations for many people who lose their vision, made unknowingly by friends and family members.  I learned Braille. But only 15 to 20% of all blind adults ever learn it.  I have a Guide dog (Opal) who has changed my life.  Back in the ‘planning stage’ when I was applying to go to Guide dog school,  one of my peer group members reported that a family member had commented to them, “you should get one too, mom”.  The mom in question, did not know how to walk down the road with a white cane, did not go to any location without assistance, did not particularly like dogs, did not like going out on rainy or snowy days… My point? it made no sense.  It can be helpful to someone who is experiencing vision loss, for family members to help reorganize the home environment.  A big factor in feeling comfortable is the accessibilility of the home.  Whether the person with vision loss is living alone, or with others, reorganizing the environment is necessary. Simple things, like specific placement of household items (so they can be found), using colour contrast schemes (paint or non-skid tape on stair risers, coloured handrails, floor material),  installing good lighting (mostly incandescent) and  ’attach’ lights on underside of cabinets. Get rid of dangerous scatter rugs and keeping cupboard and closet doors closed, and keep shoes etc. out of the footpath.  It’s easier and more pleasant to get on with life, when your home is safe and comfortable.  I have friends in my peer group who have told me that their friends or family members are often more ‘distressed’ than they are about their vision loss.  This is an unfortunate and common occurrence. I’m not sure if it involves fear (of their own potential vision loss), misconceptions of blindness, social stigma of blindness, or feelings of inadequacy (“I don’t know how to help”).  All of this stems from lack of general public awareness, and total absence of knowledge of the facts.  If you have a family member or friend who is “going blind”, express your feelings (of inadequacy  or whatever),  get your supports in place (books, internet, organizations, service providers), but  for goodness sake, GET OVER YOURSELF!  The world has not ended for you, or your loved one.