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.

Those Pesky Escalators…

This is the escalator at Woodley
Park in the DC Metro. Steep, but
flat too me and dark!

Lots of people with low vision suffer a lack of depth perception, especially in dimly lit places or at night.  This makes escalators particularly difficult for us. Just looking at them can be a problem. Lots and lots of parallel lines and all those comb-like protrusions on the treads.  When I look up or down, the steps look flat and they run together. And, just like I see squiggles on the Amsler grid, I see squiggles on the steps of escalators.  On a very, very long escalator, this can make you dizzy. And a good many of the escalators in the Washington Metro are very long. In fact, my metro stop in DC, Woodley Park Station, boasts 342 stairs and is the third longest escalator in the DC system (Wheaton is the longest in Metro and is the second longest escalator in the world).

Pretty scary! Notice the
distortion from the camera.
This is similar to what I see
as a result of the blind spots
or scotomas.

It seems like someone along the way had an idea to make escalators safer. You’ll notice that many escalators have painted yellow stripes on the steps.  When I’m on an escalator and there is a yellow stripe on the edge of the step, I know right where to put my foot.  However, it’s not all so simple. Hard to believe, but the yellow stripes are not consistently placed on the front of the steps. Sometimes they’re on the back of the step, sometimes on the edge, and sometimes not at all! It’s insanity and confusing! Take a look!

Here are two escalators, side-by-side. One has stripes on the edge
of the step and the back; the other has stripes only on the back.

My workaround, of course, is to use the elevator, if I can find one.  If I do use the escalator, I use the cane, partly to help me find the steps, but mostly to say to others “Hey, be aware. I have a visual impairment.  I may need help and I’m counting on you!“

These three escalators are side-by-side at the Seattle, WA airport. The first one has stripes consistently
in all the right places. The second one has no stripes on the edge of the step
and the third one has stripes on some steps and no stripes on others. 

Tap, Tap, Tap... the White Cane Arrives...

Right now my cane is folded and
in my purse more than it is
 straight and in front of me.

It was morning and my husband had invented an errand to get himself out of the house – I was just a bit crabby and beside myself. The White Cane Lady was supposed to arrive at 10, and I was increasingly anxious as the moment approached.  I positioned myself in the hallway so I could look out the front window through the slats in the shutters, without being seen from the street. I waited and waited. Right on time she drove up. No cane in sight. She went to the trunk of her car, rummaged around a bit and pulled out what I instantly knew was a folded-up cane in a plastic wrapper. My heart was pounding.  Being presented with a white cane was going to be a life-altering event, something akin to being pinned with a Scarlet “A,” only worse.

I went to the door and let the WC Lady in. “I’m very, very anxious,” I said. Not missing a beat and ignoring any hesitation that I had, she said  “Let me show you how to open it.” Out of the plastic, she held on to the top part of the cane and said “hold it close and upright so you don’t hit anybody with it.” She let it go and poof it was 44 inches long. Just like one of those those self-erecting tent poles. “Now, you try,” she said.  It took a couple of times, but I managed.  She showed me how to hold it - like you would a golf club with the index finger on the outside pointed downward. I did ask her if I should be wearing sunglasses and she said no, they only do that on TV.

For the next hour and a half or so, I was too absorbed to be anxious. The cane becomes your vision from the waist down, the WC Lady explained. It’s not a crutch or a substitute, but rather an extension of your senses.

She showed me how to store the cane in the car when it is extended. We drove (she drove, not me) to the supermarket, and I learned how to get out of the car with the cane. In the store, I walked up and down the aisles, looking straight ahead, not down at my feet.  It makes perfect sense. I’ve been bumping into things for some time; I realize now that it was because I was looking down and not in front of me.  

I started seeing with my ears too.  I learned that the aisles with canned goods are quieter than the ones with boxes of sugar and cake mix. I learned to listen for the sound of a cart coming towards me and going away from me.  Somehow, carrying the cane helped sharpen all my senses.

I had a problem getting used to the rhythm of walking with the cane. It takes some practice. With the left foot out, you move the cane out to the right side to protect the right side of the body with the next step.  Right foot forward, move the cane left. Left foot forward, move the cane right. Tap, tap, tap. All I could think of is line dancing and I don’t do that well, or the cha-cha-cha and I don’t do that well either. I did practice coming to the end of an aisle and “bumping” the cane into the dairy section. I started to get the hang of it, but it will take practice.

When we left the market, it was time to cross the street and get back to the car. At the crosswalk, we stopped and listened. To a truck, an idling car, a moving car, no cars. If I’m not crossing the street, I learned not to look at the street. Because of the cane, drivers, will or should be anticipating my next move. If I’m not crossing, I don’t want to act like I am. Phew, this was hard work.  I couldn’t imagine how young Helen Keller did this with both no vision and no hearing.

When I got home, I realized that I wasn’t feeling sorry for myself any longer, that I had paid the utmost attention to my lesson and that I had learned quite a bit. It’s true: this wasn’t just about waving a white cane, it was very much about listening and becoming aware of the environment.

The WC Lady came back a few days later. This time we went to the light rail station. I learned how to go up and down steps and cross the train tracks. Using the cane I found holes near the tracks that could have tripped me. At the ticket machine I went to put in money for the full fare and the WC Lady stopped me. I was now qualified for the disabled fare, she advised.

Hmmm… I immediately wondered if there was a disability fare on the commuter train between Baltimore and Washington DC.  (And there is, by the way. From now on, my roundtrip ticket to DC is 6 bucks and not 12!)

The light rail came and I used the cane to find and navigate the steps.  We sat down and other passengers started to talk with us. How odd. I had a white cane and I was laughing. We rode to the airport, and along the way, my teacher was pointing out different things to me – I became aware of the number of stops we traveled.  She noticed the inconsistency of the person announcing the stops. She asked if I could identify and use the STOP request button, which is really a tape. Talk about feeling like you are all thumbs!

When we arrived at the airport station, she watched me get off the train. Sweep the cane more to your left, she said. Cover the space in front of you to approximate the width of at least your shoulders. Don’t be so robotic, she said. I noticed the change in texture where the sidewalk met the door jamb, and then felt the waxed slickness of the airport floor.  

There was no one in the international section of the airport so we chose to practice on the escalator there. Up and down the escalator we went. I held the bottom of the cane against the second step up in front of me. When I no longer felt a step, I knew I was at the top of the landing. Wait until you feel the little bump, and then step off.

Coming down the escalator, I reversed the procedure. When the tip of the cane hits the bottom of the escalator, wait for the bump and step off. I went up and down many times. And people were getting very confused watching me go up and down. My guide walked away once and I was all alone going up and down, up and down the escalator with my eyes looking straight ahead. Even I was ready to laugh!

We walked over to a more crowded section of the airport and I deliberately stood with the cane, smack dab in the middle of travelers.  One person with a ton of luggage walked directly towards me all the while looking up at an arrival/departure board. I had to duck and dodge to avoid a major collision. We walked around some more and a few people politely moved out of my path. We went to my problem area, the pesky escalators with the inconsistently placed yellow stripes, and we/I practiced more. Feeling quite good about my excursion, we went back to the light rail station and came home. It was obvious to the others on the train that I was “in training” and it was all ok.

The next morning, my husband and I went out for a walk and I took my cane to practice. Cane to the left, right foot forward; cane to the right, left foot forward. Again, and again. When you sweep to the left, the distance between the cane and the left foot is greater than the distance between the cane and the right foot. The left foot is going to go where the cane just swept.  The whole idea is to check out the space where you are about to walk. Got it?

All right, so my training wasn’t so bad. I felt very safe and secure with the WC Lady. I even felt empowered. My husband even commented that I seemed to be paying more attention to my surroundings, which was true; normally I’m lost in thought. Can’t do that any more.

WC Lady and I plan one more visit. We are going to go on the commuter train to DC, take the DC metro and walk to work. In the meantime, I am on my own.

I began to carry the cane with me everywhere I went -- to work, when traveling, and doing errands. But I carried it folded up, in my purse. I was just too afraid to take it out and use it. A crazy fear, but a big one.  Afraid of being looked at, of being vulnerable, of being pitied… you know, the Scarlet “A” thing.

I took it to DC one day and bravely opened it before I got off the train. I figured I’d try it out walking the platform in Union Station and on Metro. I was very self-conscious. I didn’t notice any difference. At the airport, most people had been very polite and considerate. Here, they ignored me, bumped into me, and on the metro, not one person even thought to offer me a seat. It’s very hard carry a brief case, a white cane and hold on to a pole to maintain balance. I was not a happy camper! At least I tried.

I went to New York and went out to dinner with my work colleagues. When we left the restaurant, it was pitch black and I was in totally unfamiliar territory with a couple of blocks to walk. If ever there was a time to use the cane, this was it, but I just couldn’t. I still couldn’t use the cane in front of people that I knew. That old Scarlet “A” again. I said out loud that I wasn’t comfortable walking. My colleagues became uncomfortable. One asked if I wanted his arm. “No.” “Carol, are you ok?” “Yes,” I said.  It was a long walk back to my friend’s apartment. What was this stubbornness all about?

The next day I went to the train station with my friends. Their train left before mine. It was 5:30 pm on a Friday afternoon and the place was mobbed.  Waiting for a train at Penn Station in New York is something like a rugby scrum. Everyone clusters around the big board that lists the departure gate numbers. They don’t announce the gate until just a few minutes before departure, at which time a huge mob rushes to the gate. This time the white cane helped, but not in the way you might expect.

I took out the cane, opened it, held it close to me but made it very visible, and approached the information desk. “I can’t read the board. Can you tell me what gate the 6:00 pm Acela will leave from?” The clerk did a double take; they’re never supposed to give out the gate number before it’s announced, but seeing the white cane, he said quietly, “Go stand by Gate 9.”  So I walked over to the Gate 9, sweeping the space in front of me.

And that was just the beginning of the good things the white cane did. Once I was at Gate 9, people took notice, and several asked if they could help. Someone carried my luggage down the escalator for me, and that allowed me to focus on the steps. I swept (left… right… left…) my way to the train, got on and took a seat. I left the cane open and visible and had it leaning on the seat beside me. My seat-mate was very friendly, and we chatted off and on. About an hour in to the trip, she asked if I wanted something to drink. Yes, that would be lovely and I tried to give her some money. No she said and returned with a diet coke. We had a delightful talk – I extolled the virtues of Apple for all of its accessibility options, only to learn that she worked for Microsoft!

Back safely in Baltimore, I got off the train, still using the cane, and swept my way over to hop in the car and go home with my husband.

A couple days later, I was in the airport awaiting a flight to a conference in Las Vegas.  I was using the cane. I was standing in the Southwest boarding line when I heard a familiar voice and discovered an old friend standing right behind me. He already knew about my eyes and had always been sympathetic, but as soon as I realized he was there, I folded up the cane and put it away.

In Vegas, it would have been great to walk up to a Roulette or Blackjack table with the cane, but I didn’t. I only used the cane once – when I went to see the Lion King by myself. I needed to ask the usher to help me find my seat. And I did take and use a portable illuminated magnifier to read the PlayBill.

Finally, the other night I was in DC with some folks who had read the earlier entries to the blog. Several were interested, and asked questions. I had the cane with me but it was folded up, though it was visible sticking out of my purse. I’m not sure why, but even though I’ve been thoroughly “outed” (by myself, mostly), it is still difficult to actually use the cane in the presence of people I know. Sometime I take it out and show people how it’s used, but then I fold it up and put it away again.  The urge not to be different is a powerful instinct.  This new existence will take some time to get used to.