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.