My Jordi Glasses are Ordered!

This is what they look like! Mine will be blue!
They are the Ocutech VES-Sport!

Woo hoo! The other day I was measured for my bioptic glasses! I’ve had a loaner pair from Wilmer for the past two weeks and I have to say that I LOVE them. When I wear them, I can see so much! Street signs, Power Point presentations from the back of the room instead of the front, menus posted on the wall, restroom signs, faces of people playing basketball in the park behind our house, signs inside the metro. I even saw detail on our 55-inch HD TV that I've never seen before!

My new here - Geordi La Forge

My sweet husband was so tired of me narrating our road trips that I thought he was going to kick me out of the car:  "Did you know that Exit 17B is before Exit 17A”,  “Checkers Cheeseburgers $1.89”,  “Left turning vehicles”, “Hey, look, there is the sign for the light rail”, “Did you see that sign for the aquarium?" He said I sounded like a GPS with runaway software – the only thing I didn’t say was “Recalculating.”

I wore the glasses every day and practiced aiming my better eye out the telescope’s small hole to bring into focus a small, but very clear field of vision. It’s a little tricky, but after a while the muscle memory develops and it becomes as easy as looking in a rear view mirror.

The only problem with the bioptic glasses was that occasionally I got so involved with all the things I could see, that sometimes I didn’t always watch where I was going. Several times, I almost walked into something or fell. I didn’t, though, and I also didn't feel the least bit self-conscious about wearing these weird looking things in public.

Now I can see the subway menu when
at the cash register.

I call them my Jordy Glasses, in honor of Geordi La Forge, the Chief Engineer on the Starship Enterprise, who wore a VISOR (Visual Instrument and Sensory Organ Replacement). Jordy, my preferred spelling, is an acronym for “Joint Optical Reflective Device.” OK, that’s really just “Jord,” but it’s my blog and my eyes, so I’ll take a bit of license if I want to.  While discussing this with my low vision therapist (LVT, since we’re doing acronyms today), I learned that there really is such a thing as a “Jord(y)”, and of course it was developed at Hopkins!

When I sit on the metro, I can read this sign.

Anyway, back to the “fitting.” First, it was necessary to show the LVT and the doctor that I really was making progress. They both agreed that I was. In fact, with my better eye and the telescope I was able to read the 20/15 line on the Eye chart. “Astonishing” she said.

The “carrier” lenses will be my distance prescription on top and the lower bifocal will be speedometer distance. I chose silver frames since I wear a lot of black AND since I had no color choice with the white cane, I chose a classy metallic blue for the telescope. If I’m going to be a Star Trek character, I might as well be a fashionable one!

Next steps: I’ll get the bioptics in a month. First I’ll practice some more. Then, I’ll take driving lessons (at my age!) to see if I can integrate the telescope safely into my driving. This little gizmo will make a world of difference - not just in my vision, but also my independence. Stay tuned!

Bioptic Carol!

The New Me! Because these are “loaners”,
they have no lenses in them!

I went back to Wilmer for my eight-week follow-up appointment. The traffic was terrible and I got there 10 minutes late – their “grace period is 15. I ran up the hill, up the steps, past the big statue of Jesus, took a right and rushed into registration. My goodness, there must have been 40 people in line in front of me! This is the Hopkins that I remember!

I arrived in the Low Vision Clinic and sat for only five minutes before I was called by a doctor in training – not sure if she was a medical student, resident, or fellow.  She measured my vision with the letter charts and I discovered that when my left eye is covered and I am seeing only with the right eye, I have various ways to compensate. First, I move my body forward in the chair as far as I can go to get closer to the letters.  Several times, the doctor pushed me back in the chair, and when that didn’t work, she moved the chart farther away. Second, I caught myself looking under the patch used to cover my left eye to help the right one. Got busted for that action too. Third, I just move my head around, up, down and sideways, to find a piece of my field of vision that can capture the whole letter that I am trying to identify.  O’s, C’s,G’s all look alike. X’s, Y’s, T’s…. W’s, M’s, N’s… F’s,E’s.  I see something now and my response is –it’s an O, D, G or C. My vision is like looking through a piece of swiss cheese.

Anyway, my vision was the same as the last time, which all things considered, is good news. The teacher-doc came in, took a seat and did real teaching and supervision with her student. She encouraged the student and gave her guidance. I felt very comfortable and enjoyed the experience. The main purpose of this visit was to try out some bioptic glasses to see if they can improve my ability to see things at a distance. After a few preliminaries, the three of us set about finding out.

I had heard about “Bioptics,” but 10 months ago, when all of this started, there was so much else to do. I was far more concerned about getting my kindle adjusted so I could read it, and identifying numbers on the remote control so I could change the channel on the TV.  At this point though, I am ready to push the envelope to see if some of the hi-tech stuff will help.

A Monocular

One of my problems is that I don’t see street signs very well. It’s tough when I’m driving – or riding - in areas that are unfamiliar. I usually have the talking GPS on, and that saves the day. Last week though, I was in the San Antonio airport. After I got through security, I had two choices – I could turn left or right. Gates 1 -15 were one way and gates 16-30 were the other. I stood there for a second and looked at the signs but couldn’t read them. It’s like being in Penn Station in New York and not being able to read the big sign in the middle of the main concourse. The bioptic glasses, or monoculars, will help with this.

The teacher-doc asked the student-doc to start with an XVP-45 (not the real letters). I had no idea what she was talking about. The student was a little flustered that she was going to conduct this part of this visit, but she did fine. We started with a “monocular.”  A monocular is nothing more than a small telescope – this one was about two inches long and had a strap attached to it so you can hang it around your neck. The student handed it to me and showed me how to hold it in front of my good eye. It was amazing. I could see and read the smallest lines clear across the room!

I’ll take it! I thought. But the two docs kept bringing out more and more, different shapes and different powers. Some gave me a clearer picture, but the field of vision was small. The larger field of vision was easier for me to see, but provided a little less clarity. 

Not quite high fashion, but I love ‘em!

This is a pix of a guy I found on the internet!

Then we switched to the bioptic glasses. These are regular glasses that have a small oblong black box mounted at the top of the frame. Inside is a telescope whose eyepiece goes in front of the better eye. To use the bioptic, you look through the prescription lens for normal stuff, and when you want to see the detail of something in the distance, you dip your head and quickly look into the telescope and then back through the regular lens.  I tried it, realized that it worked, and then thought of all kinds of uses for these glasses – movies, TV, signs in the airport, street signs, store signs, plays, etc. I tried several varieties and wanted them all!

This is what I see with the Bioptic Telescope!

The next step was to walk with the occupational therapist around the hospital and try these gizmos out.  The therapist and I left Wilmer and walked the halls of the Johns Hopkins Hospital. She held the gizmos while I walked and told her what I saw. We tried four different exercises – standing still and looking at a stationary sign, walking and looking at a stationary sign (significantly harder), standing still and looking at a moving object like a cart, and the hardest of all, walking and looking at something that is moving.  Every hundred yards or so, we switched gizmos so I could try them all.

It reminded me of many years ago when I had abdominal surgery at Hopkins. My husband visited and we walked all around the hospital. I was in a robe and carrying an IV pole.  I thought I looked weird then. Twenty years later I’m walking around looking like an alien! 

We went back to Wilmer and consulted with the two doctors. I purchased a monocular and the clinic loaned me a set of bioptics for two weeks. My job is to practice and see if I like them, and more importantly whether I will use them.  They are pretty pricey, so the nice Wilmer docs always suggest a lengthy test-drive.

So, I went to Hopkins with a bad eye and a mediocre eye, and came away with a telescope. A great visit!

On the way home, my husband and I stopped at a Subway for lunch. I jumped out of the car, put my loaner bipotic on, went into the shop and COULD SEE THE WHOLE MENU ON THE WALL!  What a thrill to rediscover an ordinary skill like being able to read a menu. I swear, the turkey and provolone sub tasted especially good. Next time I may even order something new, now that I can see the menu.

Back to Hopkins and the Wilmer Eye Institute...

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 entrance to the Eye Institute is just past the statue. It sort of sets the stage.  Going into Wilmer, you have the feeling of going into an old-fashioned bank with very high ceilings. Patients line up in a queue in a roped area and wait for a registrar. There is even a sign there that says (in large type) “Please wait for the next available registrar.” There are nine registration stations and people move through them quickly as the registrars shout “next.”

The registration area.

I visited Wilmer about a week ago for the first time in years. I remember my many visits to their retina clinic and at first blush, this visit wasn’t much different. So many patients. The registrar said they see more than 400 patients a day! Even though they now have a newer and bigger building for research and surgery, I went to same old place and registration was the same. On the high walls, there are pictures of doctors caring for patients in the 30’s, 40’s and 50’s. Johns Hopkins is practically the birthplace of modern medicine, and everywhere you look there is a strong feeling of historical significance, almost reverence.  When you are there, you know that you are not in any ordinary clinic. In the Wilmer “Dome”, there is even Dr. Wilmer’s examining chair where he examined the eyes and prescribed eyeglasses for eight consecutive US presidents, from Grover Cleveland through FDR.

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
examined?

After an hour or so, I moved into the doctor’s office. I don’t know if this doctor is famous, but she is certainly well-respected. She’s an optometrist and not an ophthalmologist. This is ok. I want someone who can give me the best possible glasses and help me see the best I can. She checked my peripheral vision, contrast, everything. I looked as hard as I could to read every letter and line and I moved my head all around to see around the blind spots. She was patient and let me take my time so we could get a good evaluation. I think it’s an F, I’d say, but it may be an E.  She had all the notes from the Hopkins retinologists of years past, and from my new one, and had read all of them. I learned that I have “eccentric viewing”  in my right (bad) eye. That means that a person looks slightly away from a subject in order to view it peripherally with another area of the visual field.  The internet says I’m using my rod cells instead of my cones. In my better eye, I tilt my head to the left in order to view something straight on. I never noticed.

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.

Part of the history of Wilmer includes Dr. Wilmer's “Examining Chair.”
Dr. Wimer examined the eyes of eight sitting U.S. Presidents. In
2001, they took the chair off the shelf so President Bush could
sit in it too!

What was I thinking?

What was I thinking?  

Overexposed picture that shows the pattern.

A couple of weeks ago, a friend told me about a brand new knitting shop not far from our house. Since I enjoy knitting almost as much as beading, I had to check it out. It was delightful! They had samples hanging on every wall, and I wanted to make them all. The next day I attended a lecture by a man named Ron, who was describing a kind of wool called Buffalo Gold. The yarn, he said, was the second warmest wool available. It doesn’t pearl up or shrink, and if you get it wet, it will still keep you warm. He went on to talk about the American Bison and how the wool is produced, etc. etc. Meanwhile, he had this wonderful pair of fingerless mittens. I put them on and they felt soooo good and they were soooo pretty. I wanted to make them right away.

Ron didn’t have many colors of yarn and so I picked a hunter green. I checked my gauge by knitting a 2-inch square, bought some double-pointed size 3 needles, took my yard and pattern and I was on my way.

Ai-yi-yi!

A day later, I sat back, totally frustrated. What was I thinking??????? The yarn is beautiful, but it has a little fuzz on it and if you aren’t careful it will split. Hunter green is a great winter color but it’s dark and hard for me to see. Size three needles make a tightknit fabric but the stitches are teeny tiny! And the gloves, gorgeous as they were, have a right twist with every K2 in stockinette and then an alternating left and right cross cable every 5 rows (for the non-knitters out there, what this means is,it's a fairly complicated weave).

One is almost complete!

It was slow going. I would knit a stitch and rip out a stitch. I completed a row and pulled out a row.  Pretty soon I got out the light and the optics. The little clip-on spectacles that I hated six months ago are now my best friends. They clip right over my glasses and have a couple different positions. When I position them in front of the distance part of my bifocals, I can hold the knitting farther away from me. When I get into trouble or have a difficult row (those cable stitches), I move them in front of the lower part of my bifocals and move the knitted fabric closer to me. Focusing farther away is easier on the eyes, but harder on the back; focusing closer is easier on the back, harder on the eyes.  I’m learning that using these relatively inexpensive clip-ons (A whole set from Amazon costs about 20 bucks) gives me flexibility. 

My work space for the bead class! See the
loupes and the clip-ons. The charlottes are
those teeny tiny beads in the front on the left.

In the middle of my knitting project, the Baltimore Bead Society sponsored a bead show with a class by one of my favorite instructors. I haven’t worked with little beads for over a year -- Just too frustrating.  Well, I thought I'd give it a try and signed up for Amy’s 6-hour class. Again, what was I thinking? Size 15’s and charlottes!  I packed up my special needles, Ott Light, clip-ons and my special, special eyeglasses with the telescopic loupes that look like what the dentist wears. Off I went awaiting what the day would bring.

I started slow, but within an hour had caught up with the class. I used to be the “fastest” beader in all the classes. It no longers matters. I was enjoying the new relationship I had with the beads.  The meditative and therapeutic quality of the beads was back and I had achieved bead-nirvana once again.

What I had learned is that yes, I can still do what I want. I may be slower and the results may not be perfect, but I can still do my knitting and beadwork.

Not the Best Report from the Retina Doctor

Oh my, went to the retina doc today and it was a so-so report. My left eye is stable, but I’ve lost some more vision in my right eye. It no longer meets the requirements for driving. For the first time, a doctor has brought up the subject of driving and the need to start planning for a passenger-only future. Fortunately, my left eye is still plenty good enough to pass the driving test so I don’t have to cross that hurdle just yet. When do you make that very hard decision? And how? Again, the doctor affirmed that most likely I will not lose all my vision, and will retain the ability get around.

I wasn’t surprised by this discussion. The other day I gave a presentation at CMS on Security Boulevard.  We finished at 4:30 pm and I was anxious to leave – I wanted to leave so I wouldn’t have to drive in the dark. Everyone stood around talking… and talking… and talking. Finally, I said “I have to leave – I can’t drive in the dark.” It was dusk when I left, but the sun set quickly. And there I was, in the car, in the pitch black dark. I drove carefully and was confident that I could get home safely, but only because I had made this trip so often before. When I looked at the signs, I couldn’t see them, or the letters were all jumbled up. Glen Burnie became Gen Bunn.  When I got home, I said to my husband that it was a tough drive home, mostly because I knew/acknowledged that there was a change in my vision.  And so, I wasn’t surprised when my right eye saw three less fewer lines on the Big “E” chart. 

Because of the vision loss, the doctor wanted to do a Fluorescein Angiogram. It is a very unpleasant test. The technician injects a dye in your arm, then quickly takes pictures of your retina. The dye lights up the blood vessels so they can be seen easily. It also make you nauseous. The doctor looks for any leaks in the blood vessels. He (or she) is also able to compare it to any previous pictures. I asked the tech if she would send me the pix and she did. On the left is someone’s normal retina. The next two pictures are my eyes – left and right or, in opthalmologist-speak, OS (oculus sinister) and OD (oculus dexter).

                                                                                                                                   

Normal eye. Macula is to the left
of the optic disc. Click to enlarge.

In all three pictures, there is bright white spot called the optic disc, the area where the blood vessels converge. I use to think that was the pupil or optic nerve. Thank goodness for a retinologist who takes the time to explain this stuff! In all three pix, there is a darker or black area not too far from the optic disc. This is the macula or the part of the eye that is responsible for central vision. I used to think that because it was dark, it was a “bad “ or damaged spot. Not so.

Left or better eye. Lesions are to the
right of the macula. Click to enlarge.

Right or bad eye. Lesions are in the
middle of the macula. Click to enlarge.

What you see in my eyes is quite a bit of scarring or thinning of pigment to the right of the macula in my left eye and smack dab in the middle of the macula in my right eye. Again, looking at this, you would think my left eye is much worse than the right. But while the damage is greater, it is in an area of the retina that doesn’t matter, or that doesn’t affect my vision. This is pattern retinal dystrophy.

I have some stuff to process after this visit.  The driving is ok for now, if I am careful and drive only in the daytime, but the issue looms large. My husband and I have to decide where to retire. So much for a farm in the middle of nowhere – I’ll need to be able to walk to the store or take public transportation. Earlier I suggested to him that we live in the middle of a shopping center, near a bead store. Oh, what to do...

And, as an aside, my cousin sent me this picture. LOL!! I may be losing my sense of sight, but not my sense of humor!

Busted! Unmasked! Out of the Closet!

I’ve kept my eye problems pretty much away from work, and the cane away from people I know. It’s just really hard to use the cane in  front of them.  I do use it in the subway or in an airport (it makes people nicer to me!).  But up to now, it’s been strictly for use with strangers.

The cane on the left is a mobility cane and the smaller,
thinner one is on the right. These are my co-workers
Patrick and Kathleen rescuing the flyaway balloon.

So the company where I work had its annual meeting last week. Several of us were sitting in the staff lounge talking and watching two people standing on chairs trying to capture an escaped helium balloon. They were using an umbrella and not having a lot of success. I looked over and said “I have just the thing you need,” and pulled my “identity cane” out of my pocketbook. I opened it up and gave it them, and it helped to isolate the balloon in a corner, but wasn’t quite enough to pull it down from the ceiling. I said, “wait a minute” and then went to my luggage and pulled out the “mobility cane.” With the two canes, they were able to grab the balloon and bring it down to earth.

The top folded cane is an “Identity” or “Symbol” Cane
and fits easily in my pocketbook. It’s about 7 inched
when it’s all folded up. The bottom cane is the mobility
cane used to tap, wave or sweep to look for obstacles.
Both canes are great for capturing balloons!

No more hiding the cane from my colleagues! Some folks looked at me in disbelief.   What? Why? Whose is it? It’s mine. I have some visual issues, I said, suddenly realizing what I had done.  I explained the difference between the identity and mobility canes. The identity cane is thinner and lighter than the other. It means “I have a visual impairment. Please get out of my way.” It’s good for finding my way on steps or an escalator and for checking depth of curves and divets in sidewalks. The mobility cane is much sturdier (for sweeping or tapping) and means “I have a visual impairment. Get out of my way or I’ll hit you.” It’s the one that you usually see people tapping the ground with.  Anyway, caught off guard, I showed people how to use the canes and there was real interest…  and so, I’m busted… out of the closet…

As for the meeting, it was a gathering of 10,000 people who came together to learn and share new ideas for the elderly. There was a blind architect who gave a talk about design considerations for people with visual impairments.  The number of people who have eye problems increases daily as more and more of us get older.

The American Disabilities Act requires
curb cuts to have a colored tactile surface
to prevent people with visual impairments
from walking in to the street.

He had some great suggestions. Make sure that the grab bars in the shower are a contrasting color to the  color of the wall, to make it easier to see – showers are not usually well lit. Change the texture of a stair rail at each end (that way it lets the walker know that he or she is at the end). I was fascinated to learn that when the government required cities to make curbs accessible for wheelchairs, it inadvertently made it likely for people with visual impairments to walk into the streets because they didn’t realize the sidewalk ended. So it then required textured concrete, sometimes painted yellow, on the edge so that a foot or cane could detect it. Why yellow? It’s the last color to go.  I spent some time talking with this guy, and we both agreed that there needed to be more education available about vision and visual impairments. It was good that he was there at the meeting and talking about this incredible need and making people in the aging field aware.

And without even planning it, I sort of opened the door about my own issues as well. I guess it was inevitable, and when it finally did happen, it wasn’t nearly as uncomfortable as I had worried it would be. 

Support Group for the Blind and Visually Impaired…

With all of the rehab appointments I’ve had, I somehow got on a list that got me invited to attend a support group for people with low or no vision. I decided to try it out.

The group meets at a nonprofit organization that provides services for the blind and visually impaired. I pulled into the parking lot at the same time as two MTA Mobility buses.  I realized that all the people on the two buses were going to the same meeting that I was, and thankfully there were a lot of people. Lots of people! All different colors, sizes, shapes. Nearly everyone had a cane, and it was amazing for me to see this. I ran to the door to hold it so that these folks could pass through. I followed them into the lobby, where after a few minutes a man with dark glasses driving a scooter and holding a white cane came to greet us. “Follow me,” he said.

What a parade we were! I quickly learned that if you can't see, you make noise, and these people made quite a bit. “Go Left.” “Now Right.”  “Straight ahead.” “Did I hit someone?” “Who's behind me?”  “Keep going.”  Many of the folks had talking wristwatches: “11:00 o’clock,” they all announced at more or less the same time. (I had seen these in the catalogues, but had never actually heard/seen one.)

I sort of followed the pack and not quite knowing what to do, I helped guide people as we walked along. Along the way, we stopped so someone could "show" us where the bathrooms were – all by verbal direction and description.

It was, pardon the bad pun, a real eye-opener. It was the first time I had seen a group of blind, near-blind, or going-blind people. I looked at people’s faces, and at their eyes. Their canes were all different sizes compared to their height. My cane comes up almost to my neck. I saw that some canes reached all the way to people’s ears, and some were shorter. I also noticed how people were using their canes. My WC Lady is pretty strict about technique. When the cane is to the left, the right foot is out. These folks were waving their canes any which way, and it didn’t seem to matter.

We made our way to what is normally a dining room room and the 50 of us sat around a large table. I was probably one of the youngest and most sighted. Within minutes, a man across from me leaned over and stared into my face. He squinted his eyes and scrunched his face. I wasn’t quite sure what the protocol was, so I just responded by letting him look. Finally he said, “You have glasses on. That means you have vision. How much do you have?” Well. It was quite the icebreaker. He had lost most of his vision about five years ago. He said that some days are better than others. Mostly he sees objects and movement. Sometimes he can see more, and sometimes less.

I talked with him and with others who were sitting around us. There were about four or five people who had organized this meeting. All of them had visual impairments, and all had canes. Up until now, I always felt conspicuous with a cane; now I was feeling conspicuous without one. I had my smaller cane, an identity cane, in my purse. I pulled it out and opened it. I wanted my big cane - I wanted to look like every one else! I wanted to be a part of the group.

Refreshments were at the front of the room and one of the organizers explained where everything was - from right to left - the coffee, the hot water and tea bags, sweeteners, fruit, cookies, muffins and brownies. A married couple was sitting close to me and they were discussing what they wanted. Again, I wasn’t sure what the protocol was – was it ok to ask if I could get them something, or would that be considered a breach of etiquette? I could see and much more easily navigate the sweeping canes! Finally I did ask, and they gratefully accepted. While waiting for the meeting to start we had a good conversation. Both had been blind since they were young, went to school together, married and adopted four children. Now they are grandparents. The gentleman said that he could see until he was about four, but he doesn’t remember what it was like.

The meeting started and we all went around the room and introduced ourselves. This was overwhelming for me. So many of these people had lost their vision only recently or within the last five years. And they talked about going through a grieving process and a loss of independence. Their words touched me in a very raw place. When it came to me, I said I was new to all of this. I had felt alone, and in just the last half hour, I was feeling so much better.

When the meeting proper started, we talked about what kind of a group it would be. Would it be sharing challenges and how to overcome them, or would it more of a social group and participate in bowling (yes, bowling), dancing and other activities?  At one point, one of the organizers called for a vote and asked for people to raise their hands. Not quite a hand raising group! Everyone laughed!

At 1:00 pm, all the talking watches went off and the meeting was over. I bid farewells to my new friends. It was an amazing experience. I was comfortable with these folks – they had traveled or were traveling the same journey that I was on, and I can learn from them.  Unfortunately, I’ll be on vacation and won’t be able to go to the next meeting. But I’ll be back.