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.
January 17, 2018 at 7:26 pm
Hugs and Kisses Susan 💙 glad there’s some possible future hopeful treatment x beautiful writing as always x
January 18, 2018 at 8:51 am
Thank you Beautiful!
January 17, 2018 at 10:26 pm
That’s great news. Hope dies last. The pros, as you said yourself, outnumber the cons and who knows what medicine is capable of a few years from now. You do your job, it will do its and let you know what it has found out, since you’re not doing research.
In the meantime, we’ll be here to listen to your stories and follow you on your journey, you strong, brave woman. Yes, you are.
January 18, 2018 at 8:52 am
Thank you Bojana!!!
January 18, 2018 at 9:48 am
I am so happy for you 💖 I wish you all the best in this journey 🌹🌻
January 18, 2018 at 4:45 pm
I just want to run on over and take you out to lunch!!! I’ll buy! (But you said you need to rest.) It sounds like your doctor is a darn good one to have. I would encourage you to sign up with Antidote. It is a “Match” program for medical research studies in your area. You may be presented with some studies you don’t want to do, you can decline. There may be other studies you find beneficial, you can say yes to those. I am just so happy to hear your news! Yay! Oh, I signed up for Antidote and it was so impressive, I put their trial matchbox on my blog! It’s on the right side, you will see it. I have signed up for a Fibro study and a restless leg study… I’m still waiting for anything coming up in my area. I think I’ll try for a ferritin study too (low iron). I just figured I’d give you the information, I want to see available treatments accelerated and that is what this company is doing, accelerating treatments by conducting research!!! Yay for us! ~Kim
January 19, 2018 at 6:06 am
Kim – this is terrific! I had never heard of them. And, thank you for your support and kindness. You are a seriously wonderful lady!!!!!
January 18, 2018 at 9:11 pm
I think you are so amazing and brave and I am very happy for your good news. As always Tha us for sharing it with us
January 19, 2018 at 6:09 am
Thank you Mandi! You are lovely. And, unrelated, but I have moved my eating away from my work space, just as you suggested and it has made a huge difference. You are the best!
January 19, 2018 at 7:00 am
That is wonderful news!!!! Your stories always force me to appreciate the small things so much more. What better news than to know you’ll be able to continue looking into your love’s face? I can think of no greater prize! ❤️❤️❤️
January 19, 2018 at 7:14 am
Thank you so much! I think that when we face the kinds of challenges that both you and I understand so well, we learn to see and appreciate things in a different way. Thank you for your support and kindness. You are, as ever, so lovely.
January 19, 2018 at 9:57 am
That is fantastic news, Susan! I must admit, as I read along since discovering your amazing blog, that I held a silent hope (maybe even a SUSPICION) that the worsening of your condition was behind you. I just never believed complete loss of vision was in your future!
Call it pattern recognition (your degradation was slower than normal, I believe you’ve said) or simple wishful thinking, but I’m glad to hear that I appear to have been right. Good for you, sister!
I look forward to your continued reading, writing, and … I believe now, improvement as the science gets better on this thing. I’m all about the hope!
And you’re absolutely right; the nature of science is to answer our questions, but every answer leads to more questions. Perfectly worded!
Now celebrate! You’ve earned it!
January 20, 2018 at 6:32 am
Thank you so much Tom!! You have just made my morning!
January 20, 2018 at 3:28 pm
Yay!
January 20, 2018 at 6:59 am
What a rollercoaster of emotion, Susan. Thank you so much for sharing the experience of this journey because it provides invaluable perspective. You remind me how vital it is that I NEVER take anything for granted. Usually, I do my best, but you have a way of keeping me in check. To know that you are going to keep your vision warms my heart and words can’t describe how thrilled I am for you, and how relieved I am. Fuck, such good news! You are a warrior, Susan, and I am so blessed and honoured to know you…never change!
January 20, 2018 at 7:08 am
Tanya – you are so wonderful! Thank you! I cannot tell you how lucky I feel to know that I may always have enough vision to continue to see the things that are most important to me. I am beyond fortunate, and whatever challenges RP continues to present, I will be forever grateful that it has not taken my central vision. You are a light in my world Tanya; thank you for all of your care and support!
January 21, 2018 at 5:50 am
Wow – this is fantastic news! You can still do so much with central vision! 😀
January 21, 2018 at 6:05 am
Thank you! It really is good news and it is not lost on me how lucky I am.
February 14, 2018 at 10:53 am
I agree with so much of this. Hope dies last, and I know hope is still strong with you.
February 14, 2018 at 11:21 am
It is, it definitely is, I just don’t rely fully on it when it comes to RP; I allow it to sit on a shelf so I know it is there but it can’t hurt me. I know that idea of hope hurting seems crazy, but I have felt it first hand. What I absolutely do is allow myself to feel the good fortune that I have even within the world of RP. Does that make sense?
February 14, 2018 at 11:33 am
It does…Hope cannot hurt. Loss of hope is what hurts and what most fear. That is why they’d rather not hope at all. Kind of like love. I don’t believe hope is for the foolish. It is for the brave…the courageous. And I can tell you I have met very few as courageous as you.
February 14, 2018 at 11:37 am
Ok, you are making me cry again. I don’t feel very courageous, but I do feel incredibly grateful!
February 14, 2018 at 11:41 am
Most brave people don’t feel courage, my dear. They feel fear and proceed anyway. THAT’s why they are courageous. ❤
February 14, 2018 at 11:45 am
I remember telling people that at some point I stopped trying to get rid of the fear, but took it with me onto whatever path was ahead. Thank you for reminding me that I am brave.
February 14, 2018 at 11:49 am
I’ll remember you when you need to hear it.