Tomorrow is my annual appointment with the retinal specialist. I used to suffer from at least a week of anxiety and fear leading up to the appointment, but I have been through it so many times, I now start getting anxious about it just the day before. I suppose I am lucky that I only have to go once a year, given that there is no treatment for my disease(that isn’t so lucky), but the day is always long, painful and exhausting.
The doctor who diagnosed my condition was less than pleasant (you can read about him in my poem, Diagnosis), but the doctor who took on his patients when he left UCLA, and who has been my specialist for the past 16 years, is absolutely wonderful! Although it is never fun to have my eyes poked and assaulted by lights, his kindness always makes it a bit less harrowing.
If I don’t have to have an ERG, which I thankfully have only had to have twice (you can read about my most recent experience here) the day is usually pretty much the same every year. I check into the clinic and wait about 20 minutes or so, then I get called in for the first phase of the appointment. This is pretty standard, I think, for most ophthalmology visits, regardless of your condition, and my doctor and his partner are specialists and researchers of a number of degenerative retinal diseases, not just RP. Anyway, I get called in and a tech checks my glasses and determines what I can see while wearing my glasses, then does a rudimentary peripheral vision test, consisting of asking when I can see her (it has always been a woman) two fingers as she brings them in from all of the outer edges of what should be my visual field. It is after this test that I get my first, “oh fuck” feeling of the day. It is the first big indicator of why I am there, which leads to feelings of self-pity and thoughts like, “I really don’t want to have this crazy disease”. I try not to feel self pity, and most of the time I don’t, but you gotta cut me a little slack on the actual day at the eye clinic. The last two things in this phase are asking if my vision has changed, to which I always reply either maybe or I don’t know, and then come the drops. Lots of drops. Drops to numb my eyes and at least two sets to dilate my eyes and sometimes contrast drops. Then I am asked to return to the waiting room.
For most people, having their eyes dilated is a bit unpleasant, perhaps results in a couple of hours of increased sensitivity to the light, maybe they have to wear sunglasses when they normally wouldn’t, but it doesn’t put their eyes out of commission for the whole day. At my stage of RP, having my eyes dilated is incredibly painful and leaves my eyes completely useless for the entire day. After my initial diagnosis, my eyes stayed dilated for almost an entire week, but that is another story. On a normal day, my sensitivity to light is so extreme, that if I don’t wear sunglasses, I experience what most people feel after having their eyes dilated. When I get the dilation drops, it is so painful that I can’t look at anything without tears coming to my eyes, even through the darkest lenses. So, not fun.
Anyway, back in the waiting room, drops doing their evil job, I wait. And wait. And wait, to see the doctor. At the least I have waited an hour, at the most it has been 3. These are hours when I can’t read or check my phone or look at anything. So, I listen. My doctor is lovely and very gentle with his patients, many of whom are elderly and have age related macular degeneration, and who also require him to speak a bit louder than normal. I listen to how patient and caring he is, how willing he is to explain things slowly and multiple times. I listen to people in the waiting room, of all ages and genders and races, some frustrated, some frightened. I listen to parents comforting children and patients telling loved ones about how hard it is living with blindness. I listen to receptionists placating difficult personalities. I listen for my name to be called.
I am ushered into a dim room; at least it is usually dim. Last year, I had to ask to have the lights dimmed, and I won’t deny feeling a bit pissed off. Shouldn’t they know how painful the light is for people like me? Don’t they deal with this every day? I got over it pretty quickly. When I finally get into the exam room, I usually wait at least another 30 minutes for the student to come in. There is always a student; UCLA is a teaching hospital. The student does the first of the in-depth exams of the day, which consists of the brightest light I have ever seen, being shined directly into one eye at a time, while I am asked to look right, left, up and down. The student will usually tell me a bit about RP and that I also have cataracts etc. I know all of this, but they are learning, so I just smile and say thank you. Then the student leaves and tells me Dr. Sarraf will be with me soon. It is never soon. It may be up to another hour before he gets to me. He is a busy guy.
When he finally arrives, Dr. Sarraf does another extensive examination of my retinas. He always says he is sorry, that he knows it hurts. Some years he tells me there is no change, others he tells me there is a slight change. RP moves slowly and in my case very slowly, which is a good thing. Then he tells me there are just a few more tests I need to have and says he will see me in a year.
Then it’s back to the waiting room. And I wait. And wait. In more pain that before my last stint in the waiting room. Still unable to look at anything. I may wait another hour or more for the tests, which I will write about (along with the results) on Tuesday, when the pain will hopefully have subsided.
January 13, 2019 at 9:55 am
I can’t imagine, Susan. I used to work for an eye doctor. I KNEW to dim the lights when we dilated eyes… SMH. Jeeze, and you go to the specialist. Best of luck with your appointment! (I still and will always hope for good news for you!) xo
January 13, 2019 at 10:00 am
Thank you, Kim. I really am so lucky that it is only once a year. You have so many harrowing stories about doctors and hospitals and I am so sorry you have to go through so much. You are one strong and amazing lady!!! And you write some damn good sci-fi as well!!!!
January 13, 2019 at 10:45 am
Ha! I think what you are going through is soooo serious! I knew my hospitalization would end. I could walk out the door of any doctor’s office. You are in this! You are amazing lady! And, yes, a sci-fi writer on top of it all! xo
January 15, 2019 at 6:55 am
xoxoxoxo
January 13, 2019 at 9:56 am
Good luck – I hope it turns out less uncomfortable this year than in previous visits. Xx
January 13, 2019 at 10:00 am
Thank you!!!!
January 13, 2019 at 10:33 am
Wish I could wait with you in the office through all that and regale you with stories that would distract you. xoxoee
January 15, 2019 at 6:54 am
Love you, ee!!!
January 13, 2019 at 11:04 am
You have an amazing ability to put moments/feelings under a magnifying glass. It’s impressive.
January 15, 2019 at 6:55 am
Thank you so much, River!
January 15, 2019 at 1:23 pm
You’re welcome.
January 13, 2019 at 12:14 pm
I say sing to yourself. Sing all your favorite songs, what the hell. Half the people won’t be able to hear it and maybe the other half will join in. Or, maybe they’ll shake their heads and think you’re in the wrong building. There’s a possibility you’ll get an unwanted referral out of it, but either way, you’ll be entertained. Ha!
Good luck, Susan. Sending love for tomorrow.
January 13, 2019 at 5:10 pm
I adore you!
January 13, 2019 at 5:38 pm
I adore you! 💜
January 13, 2019 at 1:06 pm
I’ll be thinking of you tomorrow, Sis. ❤️❤️
January 15, 2019 at 6:56 am
Thank you my sister!!! xoxoxo
January 15, 2019 at 7:01 am
Hope you are feeling good today!
January 15, 2019 at 7:08 am
Very good, actually. I am going to write about it in a bit!
January 15, 2019 at 7:37 am
Awesome!
January 13, 2019 at 1:26 pm
The best of luck tomorrow, Susan. I feel like I’ve gone through the whole ordeal with you.
January 15, 2019 at 6:57 am
Thank you, Steven!
January 13, 2019 at 2:35 pm
I’ve had a lot of serious eye issues in my life but nothing like this–I could really relate and feel your pain. I hope it fades away by tomorrow:-)
January 15, 2019 at 6:58 am
How do I not know that you have had serious eye issues? I think I must live under a rock most of the time. My eyes are back to their normal abnormal today!
January 15, 2019 at 7:25 am
I actually wrote about it a long time ago, in Week 66 when I had laser eye surgery, but I haven’t had occasion to mention it since then, so you wouldn’t have known, no worries. I’m glad you’re not in pain any more!
January 15, 2019 at 7:31 am
I didn’t discover you until well after week 66, but I am going to go and read it today!!!!
January 13, 2019 at 3:16 pm
I’m so sorry you have to go through this.
I still so admire the way you describe it all through your words! You’re so incredibly skilled Susan! Keep writing.
January 15, 2019 at 6:59 am
Thank you so much, Kat!
January 14, 2019 at 2:33 am
I used to be with a guy who had RP. (I won’t go into the details why I left him.) He never went through what you described here, just a (sometimes not so) patient wait for the total darkness which does take a great many years. What I took away from the relationship is the ability to listen to the radio; plays, news, documentaries, usually BBC. Also audio books, not enough of a variety for people afflicted with RP and other eye-related problems. He also took to writing, did it well enough and he was a guitarist too. I remember how he would be patronized by people meaning well. Avoid sentimental bikers whenever you can! Smiles. At the bank or any other official business they treated him more or less like a retard – a case of a person who cannot see must be stupid too and they would speak to me. It became boring having to refer the bank official or who so ever else back to him, saying in so many words he’s blind, not stupid! You probably have similar stuff. Self pity – go for it!! A good bout every now and again helps – works for me!
January 15, 2019 at 7:03 am
This may sound bizarre, but I always get a little excited when I meet someone who even knows what RP is, much less has known someone who has it. It is a rare occurrence. I hope that talking about it doesn’t bring up too many difficult memories, due to the break up, but I would love to hear more about your experiences on the other side of RP, if and whenever you would like to share. I have been pestering my husband to write a guest post for my blog about his side of it. Thank you so much for sharing!
January 15, 2019 at 10:03 am
Sure I’ll share. I left the guy because he punished people for his condition, especially those close to him. At the time I was with him his sight was still such he hardly needed a cane, but used it to let other people know he has difficulty. We lived in a congested area and the pavements were full of vendors selling CDs, vegetables amongst other things. He could see quite a bit from the side of his eyes, but couldn’t read or watch TV for instance, hence the radio and audio books. At home he’d use to walk on his toes in case he stepped or tripped over something. Neither of us were good housekeepers but he knew where everything was and could put his hands on anything he needed in a moment. He told me he was diagnosed as a child. His mother tried every alternative way of healing she could find. His father put a stop to it, them being Christian so he’ll never know whether the alternative healing may have helped. She found a spiritualist who worked with some spirit or something and apparently he was making progress. I spoke to him during last year and he says he finally lost all sight, but he did use to exaggerate a bit so I’m not sure if it is really all gone or whether it worsened a bit. As you said, it can take a great very many years. I do know he finally got himself a guide dog and used to complain about the poop he had to pick up all the time. I could put you in touch with him if you like? I’ll phone him and tell him about you. He does training for blind people so they can negotiate the streets, ATMs and so on. He’s easy to talk to and has a way with people. He’ll talk your head off! What used to infuriate him was people’s umbrellas over their stalls on the pavements. It was right at eye level and if one can’t see one can get hurt. I’ve seen people stop dead in their tracks when they see him coming along with his cane and do not know where to run or turn to avoid him – meaning well while being so utterly flustered at the sight of a blind person. Some just did a u-turn and went the other way or blocked up a doorway until he passed, too terrified to obstruct him. He told me someone once put a coin in his hand while he was standing at a robot waiting to be able to cross the street. There’s this whole aural thing of listening to the traffic so one judges when it is safe to go. Apparently he took a moment too long and the person thought he was begging. He said it was easier accepting the money and let it go than telling the person no, it’s okay I don’t need it. It makes other people feel better as well.
I write from South AFrica by the way – he once worked in the rural areas. They had to drive somewhere and all three people in the light delivery vehicle wore sunglasses while the vehicle had signage – I forget exactly the name of the organisation but they were doing training for blind people. There they’re driving and all wearing sunglasses! The driver said the looks they got were astonishing! Let me know if you want to be in contact with him and I’ll arrange it. I’m sure he’d be willing to speak with you. Phoning would be expensive perhaps but email will do well I think? I know here in South Africa one can phone for free during certain hours, even for calls to other countries and I think there’s a similar thing in England. Not sure where you are? I’m trying to remember other anecdotes – it’s been a while since we broke up. As soon as I remember I’ll let you know.
January 15, 2019 at 11:05 am
Thank you so much for sharing this! You don’t need to put me in touch with him, but thank you for thinking of it. It is interesting for me to hear about it from the perspective of a person close to someone with RP. It may sound strange, but talking to others with RP can sometimes become a woe is me fest and I am not into that. I also know a lot more about the experience of having RP, so it’s other experiences that I find interesting. Although, every case of RP is so different. My experience is very different from what you describe here. I am also really lucky as I can still read and write and although I should probably use my cane, I choose not to. Oh, and I am in California. I love how we can make these connections and be worlds apart!
January 15, 2019 at 11:26 pm
It does of course break one’s heart to know one’s sight will disappear at some point in the future. It seems you still have a long time to go and that is good. Okay, I won’t contact him then. I remember the last time I spoke to him now some months ago how guilty I felt for having sight and he didn’t. It’s true for any disabled person one meets on one’s journey. One ought not to but there it is. Keeps one humble these things. Be well!
January 16, 2019 at 6:39 am
Thank you, so much!!!!!
January 14, 2019 at 4:01 am
I can’t imagine having to go through this more than once a year. My Mom had macular degeneration and had to get shots in her eyes. The idea of that made my skin crawl. The reaction to what you just described is similar
January 15, 2019 at 7:05 am
My doctor actually treats a lot of patients with MD and I always feel so bad for them when I hear him say he will see them a bit later for the injection…..I guess it is good that they are finding treatments, but a needle in the eye just sounds awful.
January 15, 2019 at 7:40 am
I can endure a lot, but I think you would have to anesthetize me to have it done
January 15, 2019 at 8:11 am
Me too, no question about it!!!
January 14, 2019 at 4:34 am
Hmm, I have to do a dilation soon, but I haven’t made an appointment as yet…
Thanks for sharing your experiences…
January 14, 2019 at 5:55 am
I love hearing your thoughts on this. Having been on both sides of the bright lights, I understand. Wishing you luck and strength today.
January 15, 2019 at 7:05 am
Thank you, George!!!!
January 15, 2019 at 11:03 am
So, not fun at at.
How did it go?
January 15, 2019 at 11:07 am
I was just sitting down to write about it!
January 15, 2019 at 11:41 am
In that case, you should put the Don’t disturb sign.
January 15, 2019 at 12:12 pm
Please tell my dogs that!!!! Joe says having pugs is like having toddlers that never get past the toddler stage, and our babies are always wanting attention.
January 15, 2019 at 1:18 pm
That’s cute.
January 15, 2019 at 1:39 pm
Most of the time!
January 18, 2019 at 12:51 pm
You are a strong woman! XOXO 💛🌷
January 18, 2019 at 1:21 pm
Thank you, my friend!!! So much!