Well, actually I should call this blog, What RP is Like for Me, because although symptoms are some the same for everyone with retinitis pigmentosa, each case is unique.
For example: the eyesight is always deteriorating due to the diseased retinas containing bone spicules and atrophy, pigment which the doctor can see with a light through a dilated pupil, and the person with RP will always have loss of peripheral vision and usually one degree or another of myopia, in my case extreme. Most people will eventually lose macular vision as well, but now with 15,000 IU of vitamin A palmitate daily, some adults have found less rapid vision loss, over a one-hundred year study. Cataracts are a bi product and often the doctors say it will not help to remove. This is too complicated for me to explain, except that the retina has already had so much death of cells, and also in my case, being totally blind except light in my right eye, it may be too risky to do surgery when a person only has one eye. All I know is the doctor told me it would not help, that it was just part of RP.
When I was a child, I was legally blind in the right eye, even corrected and legally blind in both eyes without glasses. When I was in my early thirties, the doctor said I could not drive at night anymore. When I was forty-seven contact lenses could no longer correct my vision, and I stopped driving. Also, my eyes started to get infected a lot, so I had to stop wearing eye make-up for a long time.
I qualified to go to the South Carolina Commission for the Blind, which I did for a total of about five and a half months. It was a good experience and I learned a lot, and I made friends with clients and instructors.
RP is very misunderstood, because the person may have some residual central vision and not seem blind. It is too complicated to describe the way I see, so I won't, because it would exhaust me. I have had rude things said to me for tripping on things, but also rude things said to me because I was getting around so well in a well lit room.
If I go out at night, I use a mobility cane. Sometimes if I am with someone who does not mind me holding their arm, like a date or a close friend, I will not bring my cane. In the daytime, I often do not need it, but have regretted not bringing it, when I have run into things or people. Still, I do not like to look blind. I am not blind, just visually impaired. I can see to a degree. On rainy days like today, it is hard to see, especially indoors. However, ironically, bright light and bright sun, both in and out of doors requires me to wear dark glasses given to me by the CfB, because the eyes of a person with RP are very light sensitive. We usually would rather watch television than go to a movie theater, because it is hard to see the entire screen and you end up turning your head from side to side. Also, the light of the TV helps to clarify it, because movies tend to be dark. When I went to see those crazy Saw movies with my kids, it was so dark I could not see well, but that is a good thing, lol.
Someone said to me, "I'm not blind, but I have other problems."
I said, "what are you talking about? Being blind is the least of my problems." In another article I might tell you ways in which this has been a blessing, but that will take some deep thought, which I am not in the mood for now. Love to all.
Note: I used the sexy cleavage picture just to show that visually impaired people can still be sexy...
Sometimes the karma ends, but until then it is as intense as it is meant to be. I wish it were otherwise. I really do. I wish we could all just be perfect, but we are not and never were.
I have been in a long term relationship in my past that was hard to end. It could not end until our karma was finished, but I did not know this. I spoke to a psychic who told me everything, but I just kept on playing out the karma until the karma was over.
For me, the karma ended when I truly fell in love with someone else, and by then I had a seven year history with the person I needed to end all ties to. Even now I wish I could ask for the money back I loaned.
Now, in poverty I have only appealed to those I thought may listen. They don't.
When Alan (a totally different man years later) died a few months ago, it was different. I think we would have gone year after year struggling with our differences, longing for each other in some ways and hating each other in other ways, like politics. That is part of why he reminds me of 'Charlie' in my novel. I think the thought of Charlie and Alan intertwined came when one of my son's friends came over and met Alan, asking him if he was Charlie's father, Charlie being one of David's friends. From then on I thought Alan looked like a fifty year old Charlie.
I was empowered the day I told the man I had had a cruel but long term relationship with, (his name I would rather not reveal, but is a big shot in certain circles as far as the Baba world is concerned), to never call again, ever. That was when I was finally free.
With Alan, it was different. Alan was never cruel to me. I think that, had Alan not died of cancer, perhaps we would have gone on forever off and on. Perhaps Alan's divorce would have finally been final. Perhaps I'd have gained the courage to move in with him or vice versa. I will never know. I do know, however, that our karma is done for this life, and the passion between us, made him dying the only way it would have ended in this lifetime.
In terms of some relationships with jerks like I described earlier though, it is when we as women ourselves truly do not want this anymore, that we empower ourselves. Until then it is very very hard. Since then people have marveled at my detachment and ability to walk away. We walk away when we have had enough, all that we could take. It is then that we walk away, when we have truly hit bottom.
In this 'out for oneself' world, there is still a place for kindness. As Jewel says in her song Hands, 'in the end, only kindness matters'...refrain.
Even in the worst, most dramatic situations of my life, there have always been at least one or two or three kind people who made a difference. There are also people with agendas, control freaks, power hungry people, people who just enjoy the suffering of others... There are all kinds of people in the world, but the kind ones are the ones I like to remember.
A Course in Miracles has shown me that I am not my story, even now. That is why I am not interested in telling my story anymore. I have told enough in articles. Perhaps someday, if someone sponsors me in terms of editing and so forth, I will write an autobiography, but it may come out too much like Rachel Brown's book, When All the Fishes Come Home to Roost, which I read and most Baba people condemn, as though they do not want to hear the story of a little girl. What is the harm in knowing someone else's inside experience? Will it make your illusions fall and that is too scary? I saw that girl when her name was Mani when she lived in India with her Mom, when I was there in '96. Even Baba's beloved Mehera, defended and cared for her. She was sad and lonely.
So many people are so caught in their own falsehood, that they will not look at the big picture or anyone else's experience. I know what it is like to grow up behind the scenes of a spiritual cult. I am not saying that Baba is not who he said he was, but technically in a textbook sense, it is a cult. In fact it is listed as a cult, but so is Jehovah Whiteness, Course in Miracles and Seventh Day Adventist for that matter. It is just a word.
Kindness makes a difference. In school, most people had some mean teachers and some kind or mean parent or sibling who could be kind sometimes. Are not the kind things the things to remember?
As long as I am alive there is no hope for redemption. Not the Christian kind, of which I have no interest, but not any, even for happiness or life, real life.
I have lost almost everyone I ever loved one way or another. Do not pity me. That is not what I want. I have the strength of mountains and oceans. I can see through the lies and into minds. I know the truth within me, but no one will listen, because they do not want to know, do not want to hear. And, so I stay alone.
But, on my death day or soon after, my ghazels will be found, my laments to God, to love, to life. And, then that day, someone will say, "she did love God. Leslie Sage was more than we thought. We thought she was a drunkard who danced in the street and sang in the tavern. We thought she was an enigma, who had no rules and no religion, who could not conform."
And, all will be true, for, she did not have rules, except not to break the law or harm anyone, but no one had any rules to not harm her, so she became frustrated and doubted. Still yet, she would not harm them, and she had no desire to.
She tried to take care of others, to give them their heart's desire, her husband, her mother, her children, but no one could she satisfy, and so she gave up finally, and let go.
Now, all that is left of Leslie, is her ghazels, in heaps and mounds, someday to be found.
If I could live anywhere, any time, it would be Paris, the left bank in the twenties. I would love to discuss art, music, acting dance and writing with those such as Gertrude Stein, Picasso, Hemingway, etc..
My parents were artists. My father went to R.I.S.D.. I think writing songs and books and movie scripts may be more powerful than painting. I realize my father captured Meher Baba, and was an amazing artist.
I see the beauty of ballet and modern dance which I studied in college. Still, when I see a film like The Green Mile, I am so astounded by the talent of the actors, as well as my favorite author Stephen King. Also, the film making is quite spectacular, an art in and of itself.
Having a brother who went to U.S.C. in Southern California film school, he may also appreciate this.
As much as I love Vincent van Gogh and other amazing painters and dancers like Isadora Duncan, I feel, looking over the words to songs I have written in my mind, such as 'Alan's Song', that people can hide, but when you write a song from the heart, there really is no hiding. The honesty of the heart comes out so strong and true. Can anyone really paint that? Dance that? Act that? Yes, act that, maybe, write that, for sure. I feel that writing songs, poetry, which also can be hidden behind as well as novels not from the heart, that writing, true writing of songs and novels and scripts, may be the strongest of all art forms. You may beg to differ and I would love to hear you.
As a musician and mother of a musician, I know the power of music itself. Still, how can writing be hidden behind? True painting and true acting and dance, as well as music probably cannot be hidden behind either.
I apologize, because as much as I wanted to write a book that was true and real in every sense of what life is for the average American who is not privileged, like my own family, me, my kids, my brother, his daughter, and some of my children's friends and their hardships, I ended American Boys on an unrealistically happy note. The reality of life would not even have been that good, even though there were still problems.
Being an avid reader and a patron of the state library for the blind, I was tired of reading about rich people with unrealistically happy lives. This is what led me to Stephen King, and historical fiction on things such as Auschwitz survivors and lynchings of black people in the twenties, while Theodore Roosevelt was president, although he of course was not responsible but according to my readings portrayed as a racist.
I named my first son Theodore, not really after the president, but the Greek meaning, 'gift of God.'
I think in reality things are worse than my book, American Boys. The saddest thing in my book besides Daniel and Nicolas's illnesses, and Lizzy's struggles to make ends meet and find the right man, was the death of Daniel's best friend Adrien in Iraq. My kids have had friends die too. They have also had friends join armed services.
There are other causes for dying. Lizzy's parents both being still alive and both as nice, to me is unrealistic, having had a father die in my youth and a mother very cold and in some ways heartless.
I wanted things to be happy and normal, but normal does not exist, unfortunately.
Many people in this world are really mean, hiding the meanness behind pretentious niceness, which sometimes leads to out and out rudeness. This is passive aggressive behavior.
People who practice this type of communication usually have low opinions of themselves, pretending they are someone important in some way or another.
They want others to feel less than, to make themselves feel better than. They cannot accept another, another's achievements, because everything is about them.
How do I know this? I encounter people like this in my life from time to time, and I know from the type of people who do this, that these people are extremely insecure, afraid and full of self-doubt.
My son wrote a song called, 'Lesser Me You Gain.' I asked him what it was about, and he said it was about "people putting you down, pretending to give advice, only to elevate themselves and make you feel inferior." I know both sides, like the Joni Mitchell song, Both Sides Now, "I've looked at life from both sides now..."
I have been accused of making someone feel bad to elevate myself, but at the time, I had no idea what this person was talking about, and I think if I did say something to hurt someone's feelings, it was innocent and never my intention in any way.
So many people are on ego trips of one kind or another. I realize perhaps I want to be an intellectual 'giant,' lol, but whether or not that would ever be, I know I am a writer and a musician, with no reservation. Ego does not exist in true art, confidence, not self consciousness.
Be brave, be strong, 'toot your own horn' and do not let anyone keep you down. Take heed from mentors like President Obama, Eleanor Roosevelt, Rosa Parks, Emily Dickinson, Gandhi, Chopra, Eckhart Tolle, Vincent van Gogh, Ann Frank, Winston Churchill, Stephen Biko, Nelson Mandela, William Wallace, Lyn Ott, Jesus Christ, Meher Baba, Dalai Lama and/or anyone who inspires you.
