I am so incredibly grateful and overwhelmed for the outpouring of care and support I have received since my last post. I am a lucky woman!
This has been a month of having my whole body poked and prodded and getting preventative procedures, but today I am finally home and done with all of it and wanted to write an update regarding my visit to the retinal specialist.
I will start by saying, it was a good visit. That said, it was an incredibly long day in which my eyes were put through hell, but I am a pro at this point, so I take it all pretty much in stride.
I won’t give a detailed account of the 5 hours I spent at the Eye Institute, but I do want to write a little bit about the research and gene therapy thing. Truthfully, I am still learning about the science of it all, and if it interests anyone, I will share information as I learn more, but I did learn a little yesterday, which leads me to more questions, which is I guess the nature of science, in some ways.
I have met others with RP who feel the way I do about following the research too closely and many who are very invested in following it closely. My experience at Jules Stein yesterday is a good example of why I personally haven’t chosen to follow the research. Part of it is emotion and part of it is trust and good fortune. I was in the waiting room (about half of the visit is always spent waiting) and started to think about this new FDA approved gene therapy, which led me to start thinking about what it would feel like to have the independence of being fully sighted, and I started to feel excited and hopeful. How cool would it be, after all of these years, to be able to feel the ease and convenience of a sighted life? Then, I overheard bits of a conversation; a patient and a research assistant were sitting near me going over release forms for the patient to be enrolled in a research study. During the conversation, the woman asked something about retinal diseases, other than her own, that were part of the study; the research assistant said something along the lines of,” there are other diseases, like Retinitis Pigmentosa, but they are much more difficult when it comes to genetic research”. I don’t know if this is true, but it was enough to knock me down from the heights of hope, and that fall is a long fucking way down. I started crying right there in the waiting room (yes, I am that person) and thinking of a way to describe the feeling of plummeting from hope into despair in regard to the research issue; perhaps it is like being offered something sweet over and over again and every time, you are left with a mouthful of bitterness. It was a good reminder for me of why I don’t keep up with research. I am not criticizing those who do; we all have our own ways of grieving and coping and we can only be true to ourselves in that respect. There is no right way to do it; there is just what works for us as individuals.
I was feeling pretty depleted, but I decided I would talk to Dr Sarraf anyway and get his take on it. I asked about the gene therapy I had read about in the New York Times, and about being referred for genetic testing; he told me that there is no existing therapy for me, that I have the most common form of RP and therefore the genes related to it are more difficult to pinpoint (this is not a direct quote). I felt thoroughly un-special. He said that he doesn’t recommend genetic testing right now, but let’s see what happens in the next few years and if there are trials that are looking hopeful, we can talk about it again. So, this is where the trust and good fortune part come in. Dr. Sarraf is one of the two leading researchers at UCLA, in the study of degenerative retinal disease. I am incredibly lucky to be one of his patients, and I trust that if there is a treatment for me, he will make sure I know about it and get in on it. I am lucky to be able to leave the research stuff in his hands, while I go about the life with RP stuff.
I think Dr, Sarraf was feeling bad about not being able to offer me anything in the realm of treatment, but, he gave me some really good news! He told me that given the fact that the RP hasn’t started invading my central vision, he thinks there is a good chance that I may never go completely blind. This is incredible; it means I will be able to keep reading and writing with the use of my eyes. It means I can look at my husband’s beautiful face and into the loving eyes of my pugs and my cats, for many years to come. It means I will be able to travel and see things I have never seen. It is not lost on me how incredibly fortunate I am.
Dr. Sarraf’s parting words to me were,” So, the good news is that your central vision isn’t deteriorating( with the exception of a very minor change in your right eye), and the bad new is that you have RP and very limited peripheral vision”. I already knew the bad news, and the good news, at this point, far outweighs the bad.
I am not particularly brave or strong; no more than anyone else and much less than many. I am finding my ways of coping with my personal journey through this crazy disease and through life. It is my way to look at and embrace the messy things that face me; I have learned that trying to escape them doesn’t work. Some days are great and some days seriously suck, but I choose to muddle through and write about it honestly. I try to keep my blinkered vision at bay and be as truthful as I can, as a woman and as an artist. I am grateful and I am so damn lucky!
Now, it is time for me to rest my eyes, and treat them with kindness, respect and gratitude. Thank you again for all of the amazing support. And, please please don’t hesitate to ask questions; I know I always inevitably leave stuff out.