The Wilmer Eye Institute at the Johns Hopkins Hospital is perhaps the most renowned eye hospital in the world. Wilmer has the best doctors and it does the most research. If you have an eye problem, Wilmer is the place to be. People who know Johns Hopkins are familiar with the iconic Dome on the original building, and the huge statue of Jesus inside. It’s the centerpiece of Hopkins, which today is an enormous conglomeration of buildings that takes up maybe 15 city blocks.
|This is a map of the Hopkins Campus in Baltimore. The upper circled area|
is the Wilmer Eye Institute. The new building to the left house the Wilmer
operating rooms and research areas.
|The registration area.|
My experience last summer with the State of Maryland’s Department of Rehab Services was very positive, but there was/is no continuity to that service. And, unlike so many of their clients, I have the means to pay for my own eye rehab. I wanted to develop a relationship with a doctor who understands my disease and who can prescribe glasses. The retinologist who I see twice a year doesn’t do glasses, and neither does the low-vision doctor I saw earlier. I also figured that if they ever discover a cure for what I have, Wilmer would probably be where they discover it. So, I made an appointment, and had copies my records sent to the Dome. Still, I was a little leery, because if you remember from earlier blog entries, my previous care at Hopkins, though medically very good, was not very helpful.
I registered and made my way to the elevators to go the third floor. As I turned the corner, I noticed a glass case that was full of low-vision gadgets and gizmos with a sign that said “Low-Vision Rehabilitation.” Hmmm. This was different. I stopped and looked. I didn’t remember this from 15 years ago or even 10 years ago. I went up the elevator and then followed the (large print) signs for low vision, and came to another registration desk. After all, this is Hopkins! I checked in again, and was then ushered into a waiting room where there was only one other person. This, too, was different. The places I’ve visited in the past were always crowded. After a 10-minute wait (another big difference), a guy named Jim came out and called my name. He was a low vision specialist, and we started right in.
Jim checked my close-up vision and asked what kind of devices I was using. I pulled out a variety of magnifiers – standing, portable, loupes, clip-ons, etc., etc. We went through them one by one, and immediately he taught me something I didn’t know. I’m not sure I can explain it, but when I use magnification, it effectively enlarges the area around the blind spots, and that’s what allows me to see more – it’s not so much making what I’m looking at bigger, but instead enlarging the field of vision. Jim said he would guess that after using a magnifier for a while, my eyes get tired, and he was absolutely right.
Jim said that because of the disease I have, my eyes work overtime and it’s not surprising that at the end of a day, I feel like putting ice cubes on them. I can help the eyestrain by holding things very close up to my eyes, but if I do that for long enough it will cause shoulder, neck and back pain. Jim said the goal was to find the just-right combination of magnification and lighting that will get the best use out of the vision I have left, with the least amount of fatigue.
We played with the light using my clip-ons and other gizmos. I knitted with and without light, with magnification on my distance bifocal and with magnification on my close-up bifocal. I am learning soooooo much.
I asked Jim how long this service had been at Hopkins and he said years. This included 10 – 15 years ago when I was a patient. No one referred me or even told me about it, I said. Jim wasn’t surprised, but he added that retina doctors are getting better about referrals. Maybe I’m not the only one doing consciousness-raising.
|Do you ever wonder how silly we look when we get our eyes|
Anyway, the doc was great. I brought up my worst fear and asked her if I was “legal” to drive in Maryland. The thought of giving up driving is scary. How will I get where I want to go? Who will take me? I will become such an imposition if I ask my hubby and friends all the time to pulleeeezzze take me to the bead store, the yarn store, the nail place, etc. Yikes! I’m not ready for helpless!
After a half hour and some definite anxiety on my part, she said yes, I was legal to drive. She was comfortable that because I had already made decisions about driving at night, in bad weather, heavy traffic, etc., and that because I had asked the question, that I would know when it was time to stop. Like all the other doctors, she also assured me that I probably will not go blind. Just be careful, she said. (My husband says I’m actually a better driver now, because I know I have to pay constant attention. Amazing what fear can do.)
We talked about the impact of my low vision on my being and how just working all day to see makes me tired. She understood, and made me feel like, yeah, it’s ok to just sit still and close my eyes now and then.
She gave me a new prescription for glasses and we scheduled a follow-up appointment. I’ll go back in about 6 weeks, after I receive my new glasses. Next time, she wants me to bring my bead work. We’ll also look into a bioptic telescope to put on the lens for my better eye, which might help me see street signs.
And so, I’m back in the Hopkins system for my low-vision rehab and corrective lenses. And this time, I feel good about it.