My First Lecture!

This past week, I was invited to speak about my Ushers and deafblindness to Deaf Culture class at my University. This was the same professor whom I've been taking ASL from. She was really excited to hear me talk about my own experiences. She did have a friend who was deafblind as well and spoke a bit about him. But somehow I got the feeling that I would be a strong speaker because I was actually there and closer to the students' age.

First, I had the kids help me draw the blinds and turn off the lights to make the room very dark. I explained to them that my birthday was on Halloween. Yeah, it's a lot of fun.... but when it came to trick-or-treating, I had mixed feelings. I liked running up to houses with bright lights... warm, inviting looking houses. But dark houses frightened me. My brother and his friends used to run up the sidewalk while I'd be navigating my way, trying to feel for the stairs, bushes, and what-not. By the time I'd make to the candy bin, my brother and his friends would run back out to our parents, who were waiting on the sidewalk. Here I was, a picky candy-eater (at the time, I did not like fruit-y candy nor chocolate with nuts). I only wanted Reese's Peanut Butter Cups, Milky Ways, M&Ms, Tootsie Rolls, Hershey's, etc. If there were no obvious, how could I pick apart Snickers from Milky Ways?

So I gave the kids two plastic bags. The first bag had a mix of fun-sized plain and peanut M&Ms. The second bag had a mix of fun-sized Snickers and Milky Ways. I told the students to decide what candy they really wanted before they put their hand in.

So while the bags made their way around (which seemed like forever!), I stood with my back to the chalkboard and talked in the dark. I was definitely a bit nervous because I couldn't see anything... I think my voice was shaking at times. I felt as if I was talking to nobody!

I covered:
--My diagnosis
--How my parents reacted when we first found out
--Types of Usher's
--Nightblindness
--My visual field (when the lights were back on, I drew a normal visual field, then drew my own for comparison on the chalkboard)
--Explanation of how the brain compensates for visual loss by "filling in" the "black spots"
--Visual reality and memory of being "able to see" in the dark
--What it's like for me to move to a new area and what I have to do each and every single time
--Driving (I did not talk about my car accident, but increased limitations and what I have to do in order to be safe like looking up sunset times before I head out and give myself 20 minutes radius if it's late afternoon)
--Nalaga'at Theater in Tel Aviv
--Importance of Touch for deafblindness, how important it's for me to be holding onto something stable, not always a person
--CI's role. During the day, I can depend on my vision and not my hearing, but at night, when I lose my vision, I have to depend on my hearing/CI.

I explained to them that being deafblind is like falling through a black hole. You don't know where you're going. You don't know where you are. You don't know who's around you. That is why Touch is so important. Touching something allows us to know that something exists, that there is a world out there.

After I was done lecturing, I must've covered so much ground that I didn't get any questions at the end! So I told the class that this candy exercise was just a way of helping them understand where I was (and other deafblinds and blind people were) coming from. I think once they realized that they didn't get the right bar (they did get the M&Ms right I think because I got mostly peanuts left). I spilled the secret of how to tell Snickers from Milky Way- press ever so gently in the center and you'll feel a peanut (or not). I also mentioned it's a challenge to be at a food buffet at any party, anything that involves picking out your own food/things/etc and the area is not well-lit. Sometimes we have to ask for help (I do almost always mainly because I keep kosher and don't eat pork or shellfish). I also told them that people are really decent and don't mind being asked to do a simple task.

Everyone really loved it all and a couple of students thanked me personally afterwards. I was very, very proud of myself.

Closed Captioning at my Big 10!

I went to my University's football game yesterday. I only just learned of closed captioning. Apparently, they just put it on over fall break in October. My last game before that was in September, so that makes sense why I didn't see it before.

I was in Section 34, right between 40 and 50 yard lines so it was difficult to see the CC without my glasses (Had I know this was for real, then I would've brought my glasses!). From what I could see, the delay was minimal (better than the play-by-play on ESPN.com on my Blackberry). So it'll be terrific for those who can see/read the CC.

Here's a picture to prove it, with zooming of course.

Health Care Reform

Yay!

I support health care reform. Yes, I do. Really. Deaf people who wear hearing aids and cochlear implants need to be supportive of this. Without health insurance, we'll be devoid of our lifestyle.

I learned that the hard way when I lived in Israel. There, I was under health insurance like every other student. However, when I read the fine print when I signed my contract, the health insurance company would not cover any pre-existing conditions. It bothered me a lot at the time because A) I had stress fractures and was hoping to get a bone scan at some point and B) I had cochlear implant that could go haywire anytime. I had to make a vow to do everything possible to keep my CI trouble-free for the next 7 months I was in Israel. Unfortunately, it did go haywire by Month 4 and I had to spend nearly a week all by myself. I had to rely on lipreading and pen-and-paper methods in order to communicate. Otherwise, I avoided people and the Hebrew language at all costs. I had to skip 2 of my Hebrew language classes. I had to sit next to my friend who had her laptop for notes to watch her type in the professor's lecture. It was very hard because I was having a great time in Israel and I didn't want to miss out a minute of my time there. My audiologist in the US had to quickly get it Fedex-ed and get my parents to put it in an ordinary package so it would go through the customs without suspicions. Once I got my new processor, I was a happy camper. My dad had given it a value of $0. I laughed when I saw this... this was a $5,000 specch processor!

Then the following year, I was supposed to spend 6 weeks in Israel for the summer. I did have health insurance and it was the same company as the year before (I was participating in international schools' programs, which offered discounts). So once again, I had to be careful. But I had no idea that Haifa would be that much more humid than Jerusalem so my processor crashed just after I finished my Hebrew course with two weeks left in the trip. I spent a whole week being extremely frustrated with this processor. I tried trouble-shooting on my own. My Israeli "mom" offered to get me an appointment with a doctor she knew near Tel Aviv. I told her that I couldn't because without health insurance, the visit would set me back $400 or more. Yes, 400 smacks for an appointment with a specialist. I just graduated from college and didn't have that kind of money. It was far cheaper for me to take a stand-by on an Air Canada flight for $150. I couldn't get a new processor shipped as I was very worried about the shipping time and customs. So I left the country a week early. I was very sad but I needed to.

This past summer, nothing happened, fortunately. But my audiologist and I had planned on shipping a new processor to me halfway through just to be sure that everything would work throughout the trip. Unfortunately, due to some landlady and moving issues, I needed to leave the country a week early in order to take care of my responsiblities. But at the same time, the processor was coming. Except that it was coming directly from Cochlear, not my parents' house. So it got held up with the customs for at least three weeks. It arrived, barely, just the day before I left on a stand-by. (Fortunately, this program had a different health insurance company that didn't say anything about pre-existing conditions)

So given all these incidents, you can see why I want health insurance reform in this country. I am under my parents' health insurance for so as long I'm a full-time student. I won't be soon. I am still currently under Medicaid, which has been a lifesaver for me and my parents. Medicaid has been absorbing all the costs involved- batteries, appointments, repairs, etc. The only time my parents' insurance company has to pay for is if I want to see my old audiologist in my parents' state, not my state. But once I start an actual job, I may lose Medicaid. I will lose my parents' insurance. And what's left? A) I can hope that my new job's health insurance benefits will cover my pre-existing conditions, or B) I will be left without health insurance so as long companies are not covering these.

Health insurance do not like cochlear implants all that much. They will pay for one and that's it. It's an uphill battle to get them pay for more things like a second cochlear implant or an upgrade (They'll do it if they don't repair your current model anymore). CIs are pricey but they are worth it if they're right for the person's needs and lifestyle. It is for me and it's worth every penny. So I'm always willing to fight every step of the way to be sure that I am covered.

Without health insurance, my quality of life will gradually decrease. Without repairs, without programming visits, my cochlear implant won't substain its quality of sound. It'll get to the point where I will have to live in a silent world. By this I mean, I will not be able to interact with the hearing people as much as I do now. And interacting with hearing people is such strong part of my life that it's incredibly difficult to imagine my life without my interactions with hearing people. I don't want to live in a teeny, tiny little world of Deafness when I know there's a lot out there.

Panel on Deafness

I went to a panel on Deafness as part of a week-long event focusing on disabilities and expressing what people with disabilities CAN do, held at my university. I walked away angry and hurtful by the ignorance in the panel, especially towards people with CIs. So I decided to write the letter to knock on the committee's head that this panel was unfair to me and others with CIs.
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Dear Committee Members,

I am writing to discuss my concerns regarding Panel on Deafness that was hosted on Tuesday October 27th.

First, I want to introduce who I am. My name is ______ and I am a graduate student at the University. I have Ushers Syndrome, which caused me to be profoundly deaf and visually impaired. I have bi-lateral cochlear implant. I have lived with my cochlear implant(s) since 1989, when I was 3 1/2. It has always been part of who I am. Like many, many other people who have CI, we tend to see ourselves as "hearing" because of our environment. Our parents raised us to be oral and hoped that we're be like other hearing kids. I rarely saw myself as "deaf" because I never learned American Sign Language and didn't know many deaf people. I was fortunate in a sense to be working with Deaf Ed teachers in elementary school who introduced me to my "deaf identity" and my needs as a "deaf" person. Still, for most part, I just denied it and only accepted it when I took off my CI to sleep and shower.

However, as I became independent, starting with moving to college, I became more aware of my deafness. I could not go to parties. I could not join friends to concerts. I rarely went to movie theaters alone. I purposely chose work-study jobs that would not involve telephones, greatly limiting my choices. As I began working with professionals in disabilities services at my schools, including this University, I became more aware of my needs as a deaf person. I also met with others who had CI through my travels at UM. I realized that when we were first implanted as kids, it was considered a "solution" in the late 1980s and early 1990s. Now twenty years have passed and we have seen the long term consequences. People with CI still need to learn to live with their deaf identity. CI can't fix everything; it's not a solution nor a miracle. It's an option that invovles time commitment and personal dedication for success. I had to admit that I needed help with my classes with better note-taking system. I fought against discrimination when I attempted to change dorm rooms in my sophomore year and I won. I learned to be a self-advocate, recognizing my needs. I asked myself all the time, "What can I do to make this better for me?" If I can't understand someone on the phone, then I will get on the internet and communicate through relay system.

CI people face just as much discrimination as the deaf, even within the Deaf community. We have our own unique challenges. But for most part, we are still part of the Deaf community, even if we've been "outcasted" by the more radical. We still dream of captioning in theaters, movies, and shows. We want equality in the workplace. We hate being "shut out" by other people who don't realize that even though we can hear and speak, we still can't follow every word in the conversation. We get angry when people call us "hearing impaired". Even worse, we don't like to be considered "disabled" or "person with disabilities". I have never in my whole life accepted these terms because I can do a lot of things. To consider me as a person with disabilities would be a serious offense. I want people to know me that I am able to get my MA from UM, run 2 marathons, and travel solo in foreign countries where English isn't spoken.

When I watched the panel of 4 hard-of-hearing adults and 1 Deaf student. It was very apparent that the moderator chose to focus on HOH with special exception to Tar, the Deaf student. I could relate to a lot of what the HOH said about interacting with hearing people and in the hearing world. I was thrilled to learn that theaters and plays are now captioned, especially on Broadway in New York. So I was happy to be updated with what was going on in the arts because I've shut myself out as I couldn't really follow anything that was said.

When it was time for questions, I had my turn. I asked about CI and just for a brief thought about it. The moderator was very surprised and said that it would be like "opening a can of worms" and said it was a "controversial" topic. She was clearly uncomfortable with handling the question and wasn't prepared to do so. But she did allow the panelists a sentence or two. The panelists said almost nothing with the exception of Nan, who was HOH. Tar bluntly said it's a personal choice and left it at that. Then the moderator quickly spoke for all- "it's a personal choice and we don't have time to get into this. Next question." I was so shocked. The next question was from a mother with a child and wanted to ask about cochlear implant as well. I left abruptly due to a prior commitment but I was told afterward that people wanted to know a bit more about cochlear implants as well and one of them talked to my friend who had one.

I was not pleased with the moderator's tone and attitude, especially as an ASL interpreter who should be able to work with a variety of HOH and deaf people, CI users included. The audience clearly wanted to hear a conversation. They deserved to hear it. They also needed to hear that CI isn't a miracle nor a solution to "curing" deafness. They should hear that even a CI person, like me, have similar challenges as I've outlined above. CIs are part of the whole issue of deafness. It's an option that people choose to take or not take and I always appreciate hearing different perspectives. To ignore it is discriminating, just like how CI users are being prejudiced by the far right in the Deaf community even though we are part of the society. CI is gradually becoming accepted, especially among the younger people though.

I do sincerely hope that you will take this letter to heart and use it to re-examine your plans for a panel on deafness for next year and thereafter.

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I hope I get an apology. At least I'm getting their attention.

Labels

While texting with my friend today, we talked about school applications and playing the "deaf card". She said that she considered herself "culturally Deaf" but used "hearing loss" in her essays. I responded, "That makes sense, it's politically correct." She asked why. I thought and replied, "Well, I'm not considered "hearing impaired" and so if someone wants to talk about me, they can use "hearing loss" or "deaf" because I do have a hearing loss." She thought I was right.

I meant, how can you call a severe/profound deaf person "hearing impaired" when their hearing is just gone, or nearly gone? It's not like I'm an old lady who is losing her hearing.

The deaf and hard of hearing students at my university organization hate our name because it says "Hearing Impaired" as part of it. But unfortunately, this organization was founded some time ago and we have donor funding attached to it, so we just abbreviate it.

Just say it. I'm deaf. I have profound hearing loss. How is it "impaired"? "Impaired" signifies some form of weakness. Well, what weakness? It was never there. "Weak" suggests some form of activity. I have no activity in my cochlea, where the problem is. (I'm sure my ear drum and the anvil and all are still working just fine.)

There's also a difference in emphasis on how to call someone deaf/Deaf. I think if you emphasize deaf, it means that the person is DEAF, as in fluent in ASL, part of the Deaf culture, and is, of course, deaf. If you don't, then it's just a disability. I think. I mean, that's how I communicate the difference between the little d and the big D.

This week, the class is doing a midterm in ASL. I'm not doing it. I might do the final exam, just to see where I am and how I did in the class. During the review session, we all learned more because the teacher used her voice so she was able to explain things that she couldn't before (and we had ALWAYS wondered). She's so good in making sure I'm included by correcting my signs in front of everyone. There are 5 different signs for "early" and she explained that this one sign is common in Michigan, but showed me the sign I should use when I'm in Rochester. WTF. Okay. It's the one I like anyway. One of the sign is just finger-spelling it while making a little circle in the air. It's damn hard. We have to practice a lot on our own. When you see it in action, it looks pretty cool. But what's tricky about it is controlling your pinky so it doesn't look like you're making a "I Love You" sign after you fingerspell the "R". The "I Love You" sign consists a blend of I, L, and Y, with the thumb, index finger, and pinky out and the middle two fingers down.

I am so excited to try my skills with my friend who I'm just speaking of above.

Making progress with CC and ASL

The other day, I decided that I wanted to watch the beginning of Desperate Housewives just to see who was Mike's bride. While waiting for the video to load, I saw "CC" under the screen. CC? You mean, there's Closed Captioning on these videos now?? I gasped and reached for my headphones and turned on the CC. Then I clicked for the tv screen to full screen but the CC didn't show up. So I watched the video as it was before with a big black box below it, showing CC.

It was so exciting for me! I already figured that by leasing this particular apartment, I was commiting myself to one year free of my tv shows because it didn't have cable. Neither one of my roommates were interested in trying to get cable. I only wanted cable to watch ABC and FOX but to spend $60 seemed kind of... stupid. So I let it go. But now I have this... what do I need to pay cable for??

I'm excited that this country is making progress in making tv accessible for the deaf.

I'm also making progress in ASL. It's getting a bit more challenging but the teacher's good at correcting people, including me. It was interesting when she explained that there were different signs for colors and days of the week when she learned it long time ago. Wow. We could sort of figure out what they were so if we ever saw those, we would know what they were.

We learned that there were 126 rules for numbers in ASL. Holy smokes. Like the signs for "1, 2, 3" are different from saying "1 day ago, 2 days ago" etc.

I really do appreciate my classmates being so cooperative and enthusiastic about signing. I mean, very few looked like they just wanted to pass the class. A few asked the professor about majoring in ASL or doing something with it. I was very surprised to learn that, given everything that Michigan seems to offer, they don't offer "applied sciences" at undergraduate level. The professor said if people want to get a degree relevant to ASL, they have to go to graduate school for it . She added that the university does expect its students to go onto graduate school anyhow. Whoa.

I also had a meeting for deaf and hard of hearing students last week. We're planning on some things like a trip to an amusement park for next weekend (which I can't go anyhow because of my marathon training and apple-picking with my roommates), a birthday party for those with October birthdays, a dinner night, etc. I felt much more comfortable this year. Maybe it's just because my first year jitters have gone away and I'm more secure, or it's just that I'm getting comfortable with the whole connecting with the deaf who usually sign. Who knows.

Anti-CI Vlog

One thing I will definitely address which shouldn't come as a surprise- any anti-CI/deafness talk.

Here's one vlog from YouTube that got me really, really riled and I just couldn't understand why would he put such a video up like this. http://www.youtube.com/watch?v=-YN5Fdz1En0&feature=player_embedded

I tell you, there is still far too much prejudice in this world against the deaf. Since truly realizing this when I left high school, I had to work very hard at my hearing in order to "blend in" with the society. Otherwise, I was on the fence, or even pushed over to unfamiliar territory (the Deaf community). Unless their hair is cut short, most people with CIs who speak clearly can get away with not having their deafness noticed. It's one of the things that people with CIs are proud of- not having their deafness noticed.

But like the deaf, we strive to be accepted for our abilities. Like them, we still have to work hard to prove ourselves as valuable participants of the society. Unlike them, we still have to take measures and strategize our form of communication and placement to the main speaker.

Since my college graduation, being pushed out in the Real World, I've had to work even harder on my listening and communicate skills. I am blessed to be part of this generation where texting, e-mailing, and other forms of visual communication are the norm. But there's still part of me that craves for telephone conversation because being able to talk on the phone was and probably is still so valued and I want to fully be able to do it. When I used to call 1-800 numbers, I used to use TTY/IP Relay system via AIM. But the relay couldn't move quickly enough and sometimes I've had people hung up on me after the relay operator explained how the relay worked. I was astonished. Embarassed. Humiliated. Shame. Yes, I was ashamed. I wanted to stop this. The real solution I saw was to work on my listening skills. Learn to talk on the phone, regardless of who it was. And so I did, slowly. I wanted to stop wasting my time as well and take care of things on my own. I wanted to be totally independent. I've had my CI for 20 years now and I thought it's long enough. Time to be free of prejudices.

So for my summer research, I had to make phone calls to complete strangers who were elderly, half of them with German accents. I also had to call 1-800 numbers for my airline and SuperShuttle. The conversations went relatively quicker than if I had used the relay system.

I am damn proud. Nobody prejudiced me because I could well talk on the phone to deal with business. I call adults in their homes and offices. I still text with friends because our own lives are very busy and it's just easier to respond when we're free to do so. I am aware of my slight accent but I don't give a damn for most part so as long the person is responding to my inquiries and comments appropriately.

It might not solve the whole deaf-prejudice problem but at least they had an opportunity to meet a deaf person and can see that it's still possible to communciate.

Monkey See, Monkey Do, Learning ASL

I am sitting in ASL 101 at my university. Since the professor required silence for the two whole hours that we were in class, I didn't see the point of wearing my CI. I asked my new friend AG if she wore her CI. She said that she did and just heard all the little sounds like chairs creaking and scratching along the floor and people breathing. I told her that I couldn't do that. I supposed it was from my old days of wearing my Spectra when silence meant something was wrong. (My Freedom now tells me with a beep that there's something going on.) And I liked to hear my own silence that I've created for myself.

It's been quite fun learning ASL but a little frustrating at times because we learn so much over the course of 2 hours. I would guess that we learn probably upwards of 20-40 new signs in each class as well as grammatical structure. I'm learning quickly without much outside studying. Unlike in my spoken foreign language class, I can mimic the teacher as she signs. We've all learned to sign with correct arms and hands. You just learn. Sometimes it's entertaining to watch her act out because she can be a total clown (Outsiders of the Deaf culture would indeed think she's a clown). She's really good at clarifying signs if you can't figure out the hand and finger positions.

Of course, it's a visual language and people like me would pick it up quickly. But I didn't think I could communicate so clearly in front of the entire class. No worries about mispronouciations. No worries about not picking up the accent. But we did have to worry about signing in the right direction and with right finger positions...and of course, using our eyebrows to suggest the meaning of our sentences/questions. I think it's the professor's biggest obsession.

Our class is mostly made up of women with two men in there. The men are actually quite good and somehow I could see them working well with deaf people. So unlike at UMass, we do not have football players. *grins* I was actually afraid of that but neither are in sports, I believe. We do have one girl who I think is on field hockey. I think it does say something about the student-athletes at my school. And half of the class is black. Hm... even more interesting to me.

One of my dumb moments just happened yesterday when she was teaching us family vocabulary. First, she had our male and female students who shared the same first name to be the newlyweds/parents. Then she had them give birth to two daughters. At one point, she signed that the two daughters were together and I missed the sign for "sisters" so my brain was confused, "Lesbians?" I almost chuckled to myself.

I did have my frustrations when I have to communicate with someone so close to me. I realized this when we got up to question each other about our housing and transportation situations. I signed with a girl who's probably like 4'11" but our area was getting a little crowded so she was literally a foot away from me. I totally, totally missed almost everything that she said because her hands were in my blind spots. I got really scared and I realized that either A) I need to step back, or B) use the opportunity for tactile signing. I chose to take 2 or 3 steps back to have at least 3 feet between the two of us. That was much better. It wouldn't matter where I sit in the class- I could see my teacher from all around the room, but if I was in one-on-one conversation, I needed room. I also noticed that I couldn't even sign with someone next to me because they're just too close. Sometimes, I also missed the fingerspelling when it's done just too quickly. I was beginning to think about sitting with AG and take her right hand with my left and following the fingerspelling. She knew about my blindness but nobody else in the class did. They will find out when I give a lecture at the end of the semester about deafblindness.

Nevertheless, I enjoy going to this class. It's meaningful to me personally. It's not really much of a break from my masters program because it's still work. And I actually have a real purpose of being here. So much of studying actually happens in class, not necessarily outside of it. I am excited to show off my knowledge to one of my very best friends from home. I think I will run into her mother first though and you know what happens.

You know when your brain gets a really good exercise when you have a headache after class? Sometimes I got that when I studied Hebrew or Yiddish in my intensive courses, but I never thought two hours of ASL could wreck havoc on my ability to think straight or absorb new material for the next few hours. And it's only twice a week. (But I have to cut my Thursday an hour short due to overlapping time with my graduate seminar, darn it!) I guess I must really be getting more information than I'm used to in my other language classes. And that's a good sign.

Welcome!

Where are you? I can't see your shadow! Sorry, I don't have my cochlear implant on. I don't feel you yet... I can't see where your voice is coming from... I'm putting my hand out... find it? Oh, yeah, there we go. Now we're not alone. We're together. Oh, wait, you're not the right person, you just spelled your name and you're not who I'm looking for... Wait, you're sure? Oh okay.

I use my voice. My voice is my saving grace. Most deafblind people do not really speak well because they grew up as deaf before losing their vision so they learned American Sign Language in order to communicate. I'm different. I have a cochlear implant that allowed me to learn how to speak from the time I was implanted when I was four.

Yet, sometimes I wonder if I'm overplaying this "saving grace" part now that I have had a chance to explore some aspects of the deafblind world in the past two months. I will talk more about it and my feelings towards sign language and cochlear implants.

The mission of this blog is to have a space for me to write about my thoughts towards deaf, deafblind, cochlear implant, and disability issues. I want to make people aware of the disease that I am living with- Usher's Syndrome- and how it affects my life in ways that normal people don't think about. I welcome your input.

I would like to say that I'm pretty liberal when it comes to all this and don't care as long you are who you are, and you can do whatever is comfortable for you. People will change only when they are comfortable with the new concept. Otherwise, they won't. At the same time, I mean well when my position appear to be hard-core. I've learned a lot from my experience growing up in mainstream with little contact with the Deaf community until my junior and senior years of high school. I also have extremely strong identity with my "CI" (cochlear implant) because it is so much part of who I am. It's like my cojoined twin. I just cannot imagine my life without it and you will learn over time why.

At the same time, you will notice that even though I am very confident of myself when it comes to my CI identity, I appear to be unsure when I discuss my vision loss. I only found out in December 2003 that I have retinitis pigmentosa, another component to Ushers Syndrome. I am moving on because I have been living with this all my life. But, it is only that I now have a heightened awareness of my limitations with my current visual field.

I am currently taking American Sign Language at my university in hopes of being able to connect with the deafblind and "respectful" Deaf (again, you will later see why I quote that). I will chronicle some of that in my posts. I mean, here I am, celebrating my 20th year with my CI and voice, I am finally learning ASL, the language of the Deaf and deafblind.

Enjoy. Feel free to post comments.

*hand-squeeze*

Circle Time!

I'm squirming in my seat, looking out to the darkening sky and beginning to wonder when we can do "bridge time." I want to get back to my cabin and be safe for the rest of the night (aside from carefully walking to the outdoor bathroom area). I look back to our camp activity, may it be a talent show, dance, or skits. I am enjoying watching other campers and staff playing and I am having fun as well. But I can't help myself. I just want to go and get under my covers.

If we are outside, I will find myself inching closer to the nearest person until I can feel their breathing and warmth. Sometimes I'll grab a friend's or a counselor's hand to be sure that I wouldn't be consumed by the dark. I can hear laughter, shouting, and feet stomping on the ground from all the running. Here I am. Standing or sitting very still. I can't see. I can't see. Someone comes to me and says something but I can't see the face. It's a black shadow. Where's the flashlight? I search around me with my hand to find the flashlight and find it. I switch it on. The light bursts dimly. I hold it up to the speaker's face. The speaker repeats what s/he just said. Lipreading under these heavy shadows is still difficult. Yeah, I'm okay, I lied. But the brain doesn't lie. It fire neurons for my hand to grab the speaker's arm and search for his or her hand.

Suddenly, I hear several campers calling "circle time!" Still holding onto the person's hand, the person helps me off the ground and takes me to where everyone is forming a circle. Someone takes my other hand. I recognize the hand, somewhat. I ask, "Who are you?" Oh. Okay, cool. I can make out the scuffling shadows, looking to create a nice, big circle. Immediately, I felt less alone and very much part of the company.

Then we burst into singing "One Little Candle" that lifts my spirits as everyone moved, swayed, stamped feet, all together. I savor the rhythm. (It took me a very long time to learn all the lyrics by heart because sometimes we sang them in the dark. Once I learned them, I felt much more comforted.) The first song's especially touching. Here are the lyrics:

It is better to light just one little candle
Than to stumble in the dark.
Better far that you light just one little candle,
All you need is a tiny spark.
If we'd all say a prayer that the world would be free,
A wonderful dawn of a new day we'd see...
And if everyone lit just one little candle,
What a bright world this would be.

When the day is dark and dreary
And we know not where to go;
Don't let your heart go weary,
Just keep this thought in mind...

It is better to light just one little candle
Than to stumble in the dark.
Better far that you light just one little candle,
All you need is a tiny spark.
If we'd all say a prayer that the world would be free,
A wonderful dawn of a new day we'd see...
And if everyone lit just one little candle,
What a bright world this would be.

Then we moved to sing, "The Day is Done":
When the day is done
Down to earth then sinks the sun
Along with everything that was lost and won
When the day is done.

When the day is done
Hope so much your race will be all run
Then you find you jumped the gun
Have to go back where you began
When the day is done.

When the night is cold
Some get by but some get old
Just to show lifes not made of gold
When the night is cold.

When the bird has flown
Got no-one to call your own
Got no place to call your home
When the bird has flown.

When the games been fought
You speed the ball across the court
Lost much sooner than you would have thought
Now the games been fought.

When the partys through
Seems so very sad for you
Didnt do the things you meant to do
Now theres no time to start anew
Now the partys through.

When the day is done
Down to earth then sinks the sun
Along with everything that was lost and won
When the day is done.

And finally, we end our singing with, "Run Along Home":

Now run along home (we run in place) and jump (we all jump) into bed
Say your prayers, don't cover your head
The very last thing I say unto you
Is "you dream of me, and I'll dream of you.

When we are done, we stand in silence to mediate, still holding hands. Countless times, I look around in the darkness, imagining faces, and think how lucky I am that I have a moment in the darkness where everyone's around me. It gives me an opportunity to study the sky, the land, the lake, and other features of the camp setting. I look up to the sky, searching for the stars. I can never find them, at least I'm sure those "stars" are just plane lights. But I focus on the moon, shining brillantly, giving me a small piece of light. I quietly ask the moon to shine even brighter so I can see my way back to the cabin. I want to see who I am walking with. I want to be able to walk and talk. I don't want to use my flashlight or depend on somebody with a flashlight.

Suddenly, I feel a squeeze. Instantly, I passed the squeeze into the next person. Then everyone cheers and breaks up and heads over to the bridge, while calling for "bridge time." I sigh. I walk out with everyone, following the shadows around me. I feel for the gravel of the road and walk on the edge of the gravel, or away from the grass. I look ahead to see where everyone is going to avoid falling into the small creek below. I succeed in making to the bridge and walking in the center over it. Then I am greeted by good-night hugs. Soon, people begin moving towards the hill, back to the cabin. I search around for my cabinmates or my counselor to walk me back. Sometimes the hill mom will find me and help me back. I never feel secure walking on this road, with pine trees' branches hanging high over my head. I feel spooked. Like it's Sleepy Hollow or something. But the warmth that I felt from "Circle Time" lingers with me.

When I see the light of my cabin and open the door, I feel safe as I can ever be.