Better Understanding Retinitis Pigmentosa (RP) and Tribute to My Father

     My son wrote a song called, Lesser Me You Gain.  One day I asked him what it was about.  He said it was about people putting you down or lecturing you, putting you down in the guise of advising you, only to make you feel less than and themselves feel better than.  I know what he means, but there are many versions to the same concept.
     People do all sorts of crazy game playing which you have to rise above, stay away from, etc., but in order to totally shield yourself, you would have to drop completely out of society.  Why?
The reason is that the world is full of lunatics and idiots and a lot of ignorant, thoughtless people who have all sorts of weird mangled sickly agendas.
     I realize this is judgmental especially after studying A Course in Miracles channeled through a woman named Helen and dictated by a guy named Bill in New York City during the '60's, supposedly Jesus coming through her.  I have discussed this channeling with my brother who has blogged about channeling in terms of Meher Baba, but he said this is not what he is talking about, so I am not contradicting Baba's teachings.
     A Course in Miracles is pretty much opposed to judging and yet judging is human nature.  It is why people feel self conscious and afraid to be oneself sometimes, because there is always going to be someone who does not approve of you or me.  Why do we need approval? Truthfully no one does, just think they do.  I think it stems from childhood.  Women want men's 
approval for a feeling of approval they may have wanted from their own father and the reverse I believe.  
     The truth is what others think is none of my business.  They can judge away, but information about myself, especially personal information like why my eyes are bad or why I wear glasses and what not is not their business.  If someone genuinely cares and wants to be helpful it is one thing, but if they are just being confrontation and an a-h- then it is not their business.
     I have a bit of a resentment because I have qualified for blind services my whole life and knew I had bad sight but did not know that part, because I was not told that I had RP, retinitis pigmentosa until I was twenty years old and pregnant with my first child.  RP is hereditary.  Contrary to myths and made up fabrications, it does not skip a generation.  It is very genetic.  Both my sons have it and they also carry it.  It is like carrying brown eyes.  If you have brown eyes you have a 50/50 chance to pass that gene.  If you have blue eyes, you only have genes for blue eyes and will only have a brown eyed child if your mate has brown eyes, but if your mate has brown eyes and gives the recessive gene for blue eyes, you will have a blue eyed child.  For example, I have brown eyes, my ex-husband father of my children had blue eyes.  I gave a gene for blue eyes, since I have lots of blue eyed people in my family like my mother, etc., and therefore my two sons both have blue eyes.  In other words if you do not have RP, like my brother for instance, you do not carry it, and the only way you would have a child with it would be to mate with someone with it, but since in the U.S. only one in four-thousand people have it, you would have to look for it, which would of course be a silly notion. The percentage in Switzerland is one in seven-thousand.
     There is no discrimination in this disease in terms of nationality or ethnicity.  It appears in every race and any country.  The highest percentage in any ethnic group however and oddly enough is among Navajo Native Americans in which the statistics are one in one-thousand.
    A person with RP unless totally blind, may appear sighted. This is because the central vision is the last to go and one eye may be worse than the other or be totally blind while the other may have partial sight.  A person with retinitis pigmentosa, may or may not have improvement from glasses, because other complications like nearsightedness, astigmatism, cataracts, etc. are unique in every individual.  The person with RP will have more difficulty at night, because night blindness is a big part of the disease.  The eyes will also be sensitive to light, making sunlight and bright lights uncomfortable, requiring filtering sunglasses for the visually impaired available through the Commission for the Blind or low vision clinic which is part of the Commission for the Blind, which a person would have to be transported to since not every city has one and it would require a case manager from the Commission for the Blind, which would entail complete records from your eye doctor.  Therefore, my friends it is impossible to fake being blind or having RP.  The doctor can see the atrophy of the retina, the pigmentation and bone spicules, none of which are present on a normal healthy retina.
     A person with RP can sometimes get around quite well in a well lit room or outdoors in a familiar surrounding, but may stumble over misplaced objects in their own home if someone else misplaced them because it is in one's own home where a person would relax and not have to try to get around because they would be accustomed and comfortable with the familiar surroundings.  If a person with RP seems to be managing alright without assistance, they are relying on residual vision which varies from person to person, spacial relations aptitude and other senses as well.  Some people, not many, have sharp central vision which makes it even harder for the onlooker to understand especially when the person is in their teens or twenties.  In fact if the retinas and visual field went unchecked, young men have actually gone to war with it and become truck drivers.  This is dangerous and came out of ignorance before more tests were used.  
     I am totally blind in one eye and in the other the doctor said the visual field cannot be measured because it is so bad.
     I hope you enjoyed learning more.  There is an RP foundation for fighting blindness, but no cures have been found or treatments, only protection from light and vitamin A to help decrease the progression, but no proof that even these will help.  It is only recommended.  
     My father went totally blind from this at the age of fifty.  His uncles were all totally blind as well, one of which was a lawyer.  Ironically my father was an artist, then writer.  He had a degree from Rhode Island School of Design.  He painted to the bitter end of his vision at which point he turned to writing books on a type writer and having them read to him for editing.  He painted hundreds of paintings, many of which are now owned by people and wrote a published book In Quest of the Face of God and an autobiography entitled, Journey Out of Darkness, some of which has been published in The Glow magazine.  He also has published poems in Steve Klein's book Poems to Avatar Meher Baba, a compilation of poetry by Baba lovers around the world.  His paintings have been used for covers of many books and albums including my own and Thomas Rain Crow's book of poetry in which he dedicates his title poem to my father, Lyn Ott.  
     Yesterday was the anniversary of the day my father slipped into the coma which led to his demise.  He passed away on April 22, 1998 in the neurological department of MUSC.  He was cremated in Myrtle Beach on April 25, his birthday, and a wake was held at Dilruba, standing room going out the door, due to the great love and admiration for a wonderful man.