“No one’s gonna eat your eyes…”
In August, I volunteered for future participation in ongoing research at the Johns Hopkins Wilmer Eye Institute regarding the effect of dry eyes on reading. I finally made it back to the clinic October 5 to do my part.
Stacy begins by validating my parking and telling me about the release I need to sign. “Basically, it says you’re agreeing to participate in our study. It says we won’t pay for parking, which is incorrect – we do pay. It also says you need to return for an additional visit – you don’t. We do everything in a single session today.” She then signs the form and asks if I’d like to read it. My reply: “No, it’s just a pack of lies anyway.” She smiles ever so slightly, perhaps unsure about my seriousness. I don’t read. I sign blindly.
The study part begins with a series of questions: “Where are you? What is today’s date? What state are you in? What building? What floor?” No problems here.
Next step, a series of medical questions, mostly about back, neck, knee, hip, and foot pain. Hmmm…I thought we were studying my eyes. Suddenly she pauses and pulls out a checkbook. “I’m not finished with the questionnaire but we’ve reached the point where we pay you for your participation.” Wow, the $75 is a nice surprise. I’m liking this better all the time. I was content with the parking validation. “Now, I’m going to name 3 objects and ask you to repeat them later.” Uh oh, this is the test I flunked in the hospital right before my transplant.
More medical questions and questions to assess my mood to determine if I’m feeling worthless, depressed, or suicidal. I am not!
“What were the 3 objects?” Table, apple, pencil. Whew, I remembered this time.
One more questionnaire, this one to assess my frequency of various types of reading and their importance to my quality of life…magazines, newspapers, books, bills, word games…. I’m getting a little bored but happy that she’s asking the questions aloud and noting my responses instead of asking me to read and complete forms with my broken hand. She asks if I need a break. “No, I’m fine.”
Now I have a conventional eye exam, reading successively smaller rows of letters from a distance and successively smaller print sentences aloud up close. “The distance to the nearest city is a 400 mile drive.” I pause and comment, “Where the heck are they – Siberia?” Stacy tells me no one has ever noticed this, including her. I read another chart, this one testing my sensitivity to contrast. I pass with flying colors.
Stacy times me looking up three items in the yellow pages. On the first one, I’m extremely lucky – the book opens to the correct page – and she is wowed by my amazing speed. The next two are slower.
At some point during the process I have drops put in my eyes and a Schirmer test to assess dryness. They aren’t quite as dry as in August.
I read a story (instructions are to read until the end of the story or 30 minutes, whichever comes first, and say “ok” as I complete each page). I finish in well under 30 minutes, and Stacy tells me I’m the fastest reader she’s ever had. I can feel my head swelling with pride but then I take the comprehension test. I don’t know how I fared but it seems like there are a lot of details I can’t recall.
The final test, a cognitive assessment, seems the most challenging. A recorded voice recites numerous sequences of randomly mixed letters and numbers. At the end of each sequence, I must say how many letters were in that particular sequence. At least I don’t have to identify the letters but it’s more difficult than it sounds, compounded by the test trying to “trick” you into incrementing your count too frequently. No counting on fingers or toes is allowed. I have to hold clenched fists in my lap. So, I close my eyes and concentrate as hard as I can. At first, it isn’t too bad – 3 or 4 letters total interspersed with 5 or 6 numbers. The number of letters and numbers gradually increases. I think the highest number of letters was 12 with at least three times that many numbers. I am stunned and thrilled when I finish and Stacy says, “That’s the first time I’ve ever seen a perfect score, and I’ve been doing this for over a year.”
While we wait for the intern to come in and dilate my eyes to examine my corneas, we chat about restaurants (going back to one of the yellow page test entries). Stacy’s husband is British and likes to cook Indian. Lucky woman! I talk about my German husband and tell her about rouladen. She has never heard of it and asks how to make, excited at finding a new food that sounds appealing for both her and her husband.
The intern finally appears, and my dry eye study participation is complete. It has actually been a fun and interesting couple of hours. I like being a lab rat!
Tomorrow, I begin my 9th post transplant Vidaza cycle. I can’t believe how fast the time passes.
Day +302 tagline:
Get Off of My Cloud, Rolling Stones (no one IDed)