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Wet Macular Degeneration – a Personal View

“The good news is that you will not go blind.
The Bad news is that you will not recover fullsightedness.”

The ophthalmologist I am consulting.

Over a two to three week period in August 2018, I completely lost the ability to read. For a life long reader and for whom reading on a daily basis is fundamental to life itself, this event led me to wonder at the reason for living were I never able to read again. I felt suicidal and explored all sorts of scenarios where I could take my own life. I had never felt this previously. In fact, life was full and joyful for me. I delighted in living and rose each morning to greet each day as offering always something new.

I do not recall how I discovered the nature of this affliction. However, extensive research found a programme called EyeCare America supported by the American Academy of Ophthalmologists. This led to a year long treatment with one of the leading practitioners in the US. This all he does. Examination comprised images taken of the macular generated by two different instruments which , greatly magnified, showed the damage to the macular and the beading taking place. The dmaage, the ophthalmologist, asserted, was severe as suggested by his prognosis quoted above.

There presently is no cure for this condition and treatment is life long to avoid the vision deteriorating further. Treatment is by injection into the eye. Since the macular is essential to vision, any damage causes a blurring. Closing each eye reveals a grey vertical band which restricts the field of vision to varying degrees, depending on the extend of the damage.

Depth of vision is particularly affected and high contract is required to have any sharpness of sight. And grey predominates the field of vision. Darkness is complete in the absence of street lights. Reading is insuperably difficult and a magnifying class has to be used under very strong light. The beginnings of sentences are impossible to see. Serif type is easier to make out than sans serif. The whiteness of the paper on which the text is printed significantly affects reading ability. Type faces of below 12 points are impossible to read as is print on any kind of colour background.

Disorientation was a notable result of the condition with a loss of recognition of the familiar. Simple tasks become tedious. For example, setting the timing on a microwave. Faces are obscured so that recognizing familiar faces cannot be done. Writing on a computer is not possible so emailing is out of the question.

There is an overall loss of confidence as a result of the diminution of abilities and restrictions. The development of feel becomes important so that, for example, screws can be located and unscrewed.

I have always been an active person, filling each day with activities and benefit from the company of others. When the restrictions of Covid 19 set in, especially the period where all shops and other places where closed and staying at home was advised, was devastating. I was stuck at home and lay on the bed in a mindless stupor, going to sleep at eight and waking late, sleeping for perhaps 12 hours. This state persisted until my wife encouraged me to try to read. Notwithstanding the difficulties, I devoured volume after volume with the result that, when movement in public once again became possible, I had read an enormous number of books simply by perseverance.

A great danger is to ask others for help, in reading a telephone number, for example. Should such help be requested, a loss of autonomy results. You tell yourself you are not handicapped but simply that you have an impairment of your vision. And you try not to tell others of your condition. Your objective is to conduct yourself such that no one will be aware that you lack of full sight.

In my search for treatment I found that web sites devoted to the condition were juvenile and the information sparse and repetitive across sites. The texts are placatory, “Everything will be all right.” Which, of course, it will not be. Literature on wet macular degeneration is impossible to find and the ophthalmologist with whom I am consulting did not provide any despite my request. Perhaps he felt his professional standing would be affected were I to have any knowledge and understanding of the condition.

Outside cancer, there are few remaining human ailments which are not curable. Moorfields hospital in London has developed a cure which is undergoing clinical trials at present. Under the EU Mark such trials take three years to complete. In the US, the NHS requites five years.

Your attitude, at the end of the day, is, better to spend one’s life in pursuit of a cure than not.

Malcolm D B Munro
Monday November 30, 2020

Filed under: art

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