Negligence and Story Ideas?

I am sorry to say that I've been neglecting this blog. I havent written in nearly 2 weeks. I've been busy trying to figure out how to get a job, how to raise more money for the Walk for Hearing, and what I should write for National Novel Writing Month. (Be prepared for more negligence as I embark on this literary endeavor)If you don't know what National Novel Writing Month is all about, here's the deal. The idea is that a ton of people across the nation and the world pledge to attempt 50,000 words over the month of November. I suppose the most common form is a novel, but I'm sure it can be anything you want; a screenplay or what have you. Of course, when I tell my parents about it or ask them for suggestions they say something like "I know, why don't you get a job!?" Yes, Mom and Dad, thank you for that brilliant idea. However, times are tough right now, especially for what Businessweek calls the "Lost Generation." That is, people between the ages of 16 and 25- like myself- who are being hit the hardest in terms of unemployment and detrimental long-term effects on careers. In other words, why not attempt writing a novel? It will give me something to do other than sit in my pajamas until noon with my eyes glazed over craigslist looking for anything I could possibly hope to qualify for in the writing/editing field. Besides, all the "real" writing jobs require samples of your work, and what have I got to show for 4 lousy years of college? A stack of hurried, BSed essays a mile high.

Anyway, back to the "hard of hearing young adults" issues this blog is supposed to be about. I've been trying to decide what to write about. I definitely want to try something that ties into the "young adults with hearing loss" theme. However, I'm not quite sure how I want to go about it. Do I want to write something fictional yet semi-autobiographical? I'd have to be sure I didn't make the fictional characters too much like the real people in my life. Should I try for a memoir type style? Should I write in the form of a journal, like Meg Cabot does in The Princess Diaries books? I'm not entirely sure. The good thing is that the main point of "NaNoWriMo," as it's called, is just to write! Get all your ideas out there. No editing. December and beyond can be dedicated to the cause of the perfectionist. November is for getting 50,000 words written, no matter what they end up like. Still, perhaps some of you other young adults with hearing loss might have some ideas of what issues I should address or what the best format for doing so would be. I'd like to hear any ideas you might have. Thanks

Exhausting Weekend

Last Friday, the 9th, we went to Deaf Night at the Block of Orange. We met some cool people from Cal State Northridge (known for its deaf studies program) there. My friend Rhi, the activist, got really excited and insisted that we go up to CSUN the next weekend (this past weekend). We ended up going at presumably the worst possible time traffic-wise (Friday evening) but it wasn’t too bad. I was, however, a bit frustrated with the trip as a whole. It was definitely fun in the end, but I spent money I don’t really have on a dinner I didn’t really like, and I had a hard time communicating with anyone! There was a large group of us; some deaf, some hard of hearing, and some hearing. Because there was so many of us I never knew what was going on in the conversation. I had to keep asking what was going on, but my boyfriend didn’t even know, because neither of us is very skilled at signing yet and a lot of our friends have slight “deaf” accents so I have a hard time with that. Overall, it was a long drive and a long night. I got home around 2 in the morning.

Saturday I was exhausted, of course, but there was a fundraiser for OCF-OCF that I’d been looking forward to going to. My boyfriend and I were wishy-washy about whether or not we had enough energy to go, but in the end we went. It was a casino night at the local Elks Lodge. My parents paid for us to go. We got free drinks, played black jack and such, and my boyfriend even won a poker set. It was fun. It was also very, very loud. There was loud music playing and the bass was louder than any conversation I could have possibly had unless I was screaming. I had to have my boyfriend repeat nearly everything directly to my hearing aid.

Both of these instances were ones in which I definitely wish I could lip-read/ sign better! Sometimes I feel like I’ll be in big trouble if I ever actually go deaf. I didn’t learn these skills naturally at a young age like a lot of my friends. I’ve decided to write this weekend off as a loss. It’s been a loss of actual weekend/relaxation time at least. I can’t wait for the Walk to come. At this point it’s partly because I’m excited to meet new people with whom I can connect and partly because I’m exhausted from work that doesn’t seem to be getting me anywhere. It will all be worth it when I make a bunch of new hard of hearing friends at the Walk, right?

SoCal Walk 4 Hearing

I’ve been trying to become more active in the Young Adult Movement among the hearing loss community for the past couple of years. For the longest time after I got my first pair of hearing aids I had felt major self-pity about my hearing loss. “Only old people wear hearing aids,” I thought. “The hard of hearing community is made up of grandparents and people who were born deaf,” I thought. That is, until the people in my lip-reading class (all at least forty years older than me) encouraged me to seek out other young hard of hearing adults. Since I set off on this journey a couple of years ago I’ve made some progress, though I still don’t quite see myself as a major leader in the young adult movement. I’ve made friends, and I’ve realized that each of us has our own story. Everyone’s hearing loss journey is different. I don’t feel so alone anymore. Some of the people I’ve met are older people from the HLAA. Some are young and hard of hearing like me. I’ve joined a social networking site specifically for hard of hearing young adults called Hearing Loss Nation (http://hearinglossnation.ning.com). I’m getting there, but something big is coming up that I think may have a major impact.

The HLAA’s Southern California Walk for Hearing will be held next month on November 8th in Long Beach. Certainly this is a great opportunity for the HLAA to spread its message of access, education and advocacy for the general hearing loss community. This year, however, it’s our turn as young adults to bring attention to our presence, issues, and needs.

Why is our presence at the walk important?

1. Visibility- Raise awareness about the impact and existence of hearing loss.
We are here (hear) now!

2. Support- Provide a space to share our common experiences in a world dominated by the black and white division of deaf and mainstream hearing.

3. Communication- Talk about issues with technology and the 21st Century Communications and Video Accessibility Act of 2009

4. Networking- Meet other young hard of hearing adults.

5. Advocacy- Speak up for yourself, your hearing loss community and hard of hearing people across the nation.

The Walk is a starting point for future discussion and collaboration on long term issues that affect today's young adults with hearing loss who are faced with rapidly evolving technologies that can support our needs. Taking advantage of social media networks and passionate interpersonal encounters with other young adults creates opportunities for us to merge our ideas to facilitate real, sustainable change in accessibility and communication technologies in education and the workplace. Please join us at the walk. The Hearing Loss Association of America (HLAA) is currently working on initiatives that will involve more young adults at the national level. Your donations will be funding these efforts in the state of California and at the national level.

I'm part of Hear YA Now, the young adult team. If you are interested in joining my team, or donating, go to: http://www.walk4hearing.org/ Under the list of “2009 Walks” find Long Beach, CA at the bottom and click on it. When the next screen comes up click on the foot print marked “join a team” and search for “Hear YA Now.” When you get to the team page click the link that says “join team” one more time and fill out the information on the pages that follow. You do NOT have to make a personal donation, but you should set a personal fundraising goal. If you would like to join our team, please contact either Team Captain Rhianon Gutierrez (rhianon.elan@gmail.com) or myself (mccal106@mail.chapman.edu) so we can send you more information and a basic fundraising letter to send to friends and family.

Identity

Recent charity events have got me thinking about identity and how I identify myself. I am a cancer survivor, but I’m also a hard-of-hearing young adult. Both of these affect me on a day to day basis, but the former has for so many years- and in such a subtle way-that I hardly notice anymore. It’s certainly part of who I am, but I haven’t had to deal with the day-to-day medical hassles for so long that it’s become trivial. Most people who knew me when I was a kid recognize me primarily as a childhood cancer survivor. Most who have met me since probably know me better as a hard-of-hearing young adult. I have been a cancer survivor for about sixteen of my twenty-two years. Of those, about fourteen have been post-treatment, so unless someone is a good friend of my family or has really gotten to know me, they might know me as a hard of hearing person but not as a cancer survivor. My identity as a cancer survivor was formed when I was far too young to understand the implications. However, my identity as a hard of hearing person is still continuing to develop.

As I grow older and more knowledgeable about the world around me, I’m also more keenly aware of how my hearing loss affects my daily interaction with others. Cancer comes in so many different shapes and forms that once someone is done with treatment it may no longer be obvious that he or she has had cancer. You may or may not have a hint about a person’s hearing status by having a few conversations with them, noticing that they wear a hearing aid, etc. Both conditions can be somewhat less visible than others. As I mature I think I’ve tried to make my status as a cancer survivor less visible and my status as a hard of hearing young adult more visible. It used to be quite the opposite. I was so open about my cancer diagnosis that I gave it out like any random fact. “I was diagnosed with a brain tumor when I was five” was as casual a thing to say as “I’d like to learn to swing dance.” I tried to hide the fact that I wore a hearing aid, but how long can you carry on a conversation with someone and hide the fact that you haven’t heard half of what they said? I was caught in a double “in between trap.” I didn’t fit in with the Deaf or hearing worlds. Even among the hearing loss community I was in between the elderly who had lost their hearing because they were old and the young people who had been born deaf. However, the more hard-of-hearing young adults I come across, the more I realize that we are a unique group, and among that group our situations are diverse. Thus, I’ve decided to stop trying to define myself as belonging to a certain group and work on the issues I find important to me as an individual.

Phone Messages

This will be a short one. I thought it would be appropriate to follow up the technology post with this. I'd established that phone calls are for the most part a thing of the past, or they should be in my opinion, for people who are hard of hearing. Anyhow, I've noticed recently that phone messages really annoy me. I will admit that I am guilty of long, rambling messages, so I guess I'm a bit of a hypocrite. The majority of people I know are not hard of hearing, but I know plenty of people who have the same sort of issues with phone messages as I do. Here are my top 10 phone message pet peeves in no particular order:

• messages left from a crowded public place with lots of background noise and chatter
• whether there's other background noise or not, wind blowing into the mouth piece
• messages left from a place that is supposed to be quiet so the person is almost whispering
• a bad cell reception that goes in and out as the person leaves the message
• people with heavy foreign accents giving important info such as medical results
• call-back numbers that are not left in a clear manner
• particularly ones left at the end of the message so you have to play the whole thing over
• most especially when the rest of the message is slow but the number is given fast
• when the whole message is given at lightning spead and thus incomprehensible
• messages that are so difficult to interpret that I have to resort to having someone else listen to them and interpret them for me

The last one is something I was discussing with a friend of mine who has cochlear implants. It really is frustrating as a hard of hearing young person to have to have another person interpret a phone message for you. Not only is it a bit depressing that you don't get the pleasure of hearing and "getting" the message yourself, but there are just some conversations you don't really want your mother hearing. Some messages are confidential. My friend actually said her biggest pet peeve was that people still leave her voicemails even though her voicemail message says "Please, don't leave me voicemails" for these very reasons.

Technology

Alright, alright. I've let another week slip by without posting. I need to try to write more often. Topics, topics, topics.... Hmmm. Well, something I tend to come back to thinking about a lot is my social life. How is it affected by my hearing loss and how is it affected by my introversion? One doesn't have to be hard of hearing to know that quality is greater than quantity when it comes to friends. I find myself hanging out with just my boyfriend a lot in recent months as opposed to going out with groups of friends. People say, "Hey, we need to hang out some time!" Then they get busy and never call… or respond to messages left on their phones. Things never get arranged. It may literally be months or years before we ever end up seeing each other. Sometimes I feel like I lack social motivation. I'm not the one to call, but is it because I don't like talking on the phone or because I'm afraid people won't want to (or won't have time to) hang out one on one? You'd think with all the ways we have now to contact one another we'd be able to keep in touch, make arrangements and work out our schedules. I admit to being a little addicted to things like facebook, e-mail and texting. Phone calls are a thing of the past, right? I mean, who actually calls people on their phones anymore when there are so many other ways to communicate? Older hard of hearing friends have suggested TTY before. I really don't like the thought of it. It seems like ancient technology. It's so slow. Besides, I wouldn't feel right using it, not for a private conversation. For those unfamiliar with TTY; you have a special phone that types out what the other person is saying onto a screen. There's actually an operator in the middle typing that out for you, so not only do you have to stop and wait for them in the middle, but you can't have a really private conversation. Today we have things like aim, skype, text messaging, etc. I really don't see why TTY is necessary at all anymore, unless you're 80 years old and a total technophobe.

I was just chatting with a friend about the phone interview I'd had. He seemed almost surprised that I was able to do an interview via telephone. When I asked why he was so surprised he said that he "never had any reason to think I couldn't use the phone, but he realized that he had never talked to me over the phone, so he wasn't sure." We went on to discuss how I feel about talking on the phone and about how most people of our generation feel about talking on the phone. I told him that I'm actually fine talking on the phone as long as it has decent volume control. He wasn't surprised when I said that every guy I've been on a date with up to my current boyfriend, every one of them "hearing," seemed less willing to talk on the phone than I am. Usually the only phone conversations we have go something like this...

Me: "Hey, I just finished dinner. I'm getting ready to leave the house. I'll be over in about half an hour."

Him: "Ok, see you in a bit."

... or vice versa. This conversation is so minimal it might as well have been conducted via text. Calling sometimes gives one a little more of a guarantee that you’ll actually get a hold of the person while the message is still relevant. Of course, that depends on whether or not they constantly check their phone for messages. Some people text back so fast that you wouldn’t think they’d had time to receive the one you sent them. We talked about how a lot of people our age prefer new technology to old, not just the hard of hearing. So I'm left with these questions: Do guys in general dislike talking on the phone? Is it just a sign that the times are changing? OR Are they all aware of how verbose I am and want to avoid a conversation like the plague?

Camp!

Sorry I haven't posted in about a week. I haven't had much to write about and I'd been preparing for camp anyway.

This weekend I went to camp with the Orange County Foundation for Oncology Children and Families (OCF-OCF). If the name isn't enough of a hint, it's a group for children diagnosed with cancer and their families. What made this camp special was that this was my first time going as a staff member rather than a camper. I don't have the best of memories, but I don't think this experience was really all that different from when I was a camper, except maybe that four of us got a whole cabin to ourselves. We had been going to June and September family camp ince I was diagnosed with a brain tumor in 1993 up until my sister and I hit high school and schedules started conflicting with band competitions and such. Before I knew it I was over 18 and no longer allowed to go as a camper, but I was too busy with school to go as a counselor. Now that I'm done with school I got my chance to go back.

I actually wasn't a cabin counselor. I helped out with the little ones too young to be in a cabin, the so-called "tiny tots." We'd have sessions of a couple hours where the parents could leave the kids with us and go do other activities. It was fun and the kids were really cute, but it got really exhausting. Not only was I pulling the girls around in the wagon and swinging them around at the Friday night dance, but I was also really straining to figure out what they were trying to tell me. You know how little three-year-old kids talk. Some of it I could just nod my head or respond "Oh yeah? Really? Wow!" to. Sometimes, however, they'd be asking me if I'd take them to go see the horsies, or asking if I wanted their juice box and it got a little frustrating as I tried to figure out what it was they wanted. My sister seems to think that I wouldn't survive as an actual cabin counselor: "What if a kid needs you for something important in the middle of the night?" She had the youngest girls cabin, so I guess she'd know, but we also have a kind of hostile relationship and she probably thinks I'm incompetent. If I had been in a cabin I would have had a couple of co-counselors to back me up and I could explain my hearing situation to the kids right from the start. I think I could handle it. The only way to find out would be to give it a try, right?

Anyway, I shared a cabin with the two ladies who have done "tiny tots" for the past couple of years and another patient who grew too old to be a camper anymore who was helping us out with the kids. We got it all to ourselves because the two youngest girls' age-brackets were combined into one cabin this camp. Each cabin sings a ditty before each meal, which is usually a version of a popular song with things about that particular cabin's day at camp mixed in. We never had to do any ditties at meals because our kids were too young, but we dressed them up for dinner, which was fun. I really had a hard time understanding the ditties this time around. I'd always had a little difficulty, but I couldn't even tell what most of them were about this time. Campfire was alright. I knew all but one of the songs they sang, and most of the skits involved a microphone, although I've always had a little trouble with those microphones. I was just hoping and praying that they wouldn't call me up during "chuggy chuggy" or the "elephant walk," which they didn't. Come to think of it, I don't think I'm very popular around there.

It's strange, but I feel like I'm only known by some people by association with my parents or family, even though I was the actual patient and the reason we started going to OCF camp. That could be due to my introversion or my hearing loss, I guess. I think my social status most everywhere is a combination of the two. I feel like if I hear and respond incorrectly to something once or twice, no matter where I am, I must get some sort of social stigma attached to me. I suppose that's why I never really bonded with my cabin-mates when I was younger, or perhaps it was a maturity level thing. My cabinmates would be outside flirting with the boys' cabin and playing whatever ridiculous pop songs were popular at the time, while I was inside having a quiet, mature conversation with one of my counselors. I guess maybe that was kind of weird, because the point of the camp is to forget about all your worries and just be a regular kid. Oh well. That was then. This is now, and I'm going to do the best I can with the gift of the present.

FYI: The photo in the corner is a couple of our kids. We dressed up as "101 Dalmations" for the "movie magic" dinner on Friday night.