|
I am deafblind, but not from Usher syndrome. I cannot imagine a cure being thrown in your face- that has never been an option for me, it has never been a temptation.
But I urge you, as someone who has seen far too many blind/vi people chasing fixes and cures... stop. The cure may never come. The cure that works for others may be useless for you. You might end up waiting 10, 15, 20 years worth of trials for the 'right' answer for you to become available- and in the mean time, lose substantial amounts of your vision.
Please, try and accept the fact that your RP will very likely continue to get worse... and if you don't change your perspectives about life with RP, if you don't prepare.. it's you who will suffer. It gets more and more isolating as you continue to lose your vision while lacking appropriate compensating mechanisms.
Meet with others who have RP, especially those with very advanced RP. Meet with a low vision specialist to discuss future options. Consider, especially for now and eventual night travel, orientation and mobility.
Your cure may never come. But the ability to love your disability- that can be worked on, developed, earned the hard way. It is something you can depend on, if you simply try. Don't sit around waiting for a miracle.
__________________
"She thinks... she can make people do what she wants or needs, what is right, by the sheer force of her own talent, not by forcing them... she can teach them and persuade them... that they'll catch it from her. This is still faith in their rationality, in the omnipotence of reason. The mistake? Reason is not automatic. Those who deny it cannot be conquered by it. Do not count on them."
|