An Update that is Years Overdue

I cannot believe I have not blogged since May 2013! So much has happened in the past 5 years that I guess writing just took a back seat. But due to changes in life circumstances, and a new perspective, I want to write again. I will go indepth on everything in the coming days, but for now, I will ease myself, and my readers back into things by just giving a quick overview of what I have been doing.


In the summer of 2013, my DVR counselor (a state-funded service that helps people with disabilities find employment) put me in contact with a job developer. This job developer arranged a temporary work experience for me in which I assisted the braille department at Audio & Braille Literacy Enhancement, a local agency based out of the Milwaukee Public Library which transcribes print materials into braille for school-age children, and adults in the community. The state paid me $10 an hour, and I worked there 3 days a week for about 3 months. The executive director who is also blind, had met me before at other events and liked me, and I liked her, which eased my nerves considerably the first day. Although I took the job seriously, doing my best to act and dress professionally, the boss felt more like a good friend than a boss in the traditional sense of the word.


My primary responsibility in this position was proofreading materials like restaurant menus and books after they were embossed into braille to ensure that everything was correct. I also spent a couple days answering the phone at the front desk, or separating the pages when they came off the embosser, as the embossers use tractor-feed paper that comes on a long roll of pages. I even got to gain journalism experience by helping the executive director interview people, and write articles for a monthly newsletter. I enjoyed this experience, and would have loved to launch my career there and work there for several years. I enjoyed the tasks assigned to me, and the casual work environment where we worked hard but also had time to socialize. But unfortunately, this agency did not have the funding to hire me, so while I was welcome to volunteer there any time, I would need to explore other options for my permanent career.


Shortly before my job at ABLE ended, I was speaking to an older blind woman who also volunteered there, and she was telling me that she took some Paralegal coursework at the local technical college years ago and although she decided not to pursue this as a career, she really enjoyed the classes. I had thought about law school, especially after my parents read some of my college writing and told me I would make an excellent lawyer. I even took the LSAT in December 2012, but didn’t know if I actually wanted to be a lawyer badly enough to embark on the daunting task of going to law school. My decision was finalized when I heard that law school graduates have difficulty finding jobs, so I could spend three years working my tail off in law school, but then find myself right back where I started.


But that very day when I got home from ABLE, I read about the paralegal program this blind friend told me about, and it occurred to me that this might be perfect for me. I could earn a certificate in just one year, for a fraction of the cost of law school, and since I already had a bachelor’s degree, I wouldn’t need to take some of the required courses. When I graduated, I would not be authorized to practice law, but I would be prepared to assist lawyers in a law firm. My parents thought this was an excellent plan too. So I applied and was accepted into the paralegal program, and started in January 2014.


I am ashamed to admit this, but while I knew this was a great plan, when school actually started, I didn’t have the most positive attitude about things. I think I was just antsy. I wanted a job, and by extension, some income, and I wanted it now! I thought that on that glorious day when Gilbert and I accepted our diplomas at Carroll University that I was done with the childish school nonsense of buying books and doing homework and all that. It didn’t help that we had a particularly brutal winter that first semester, and I dreaded the cold icy walks to and from the parking structure each day. But I persevered, and my attitude gradually improved as the weather got nicer, and I realized that some of the classes, especially two of them which were taught by a very karismatic professor and former lawyer, were extremely interesting.


I finished the program in December 2014, and then in January 2015, I worked again with the same job developer who helped me land my job at ABLE, to find a paralegal position. I met with the job developer weekly to practice things like resume writing and interview skills, and to compare notes. He called a few places to try and talk up my credentials and positive personality to potential employers, and would also tell them that the state could pay my wages for a trial period of three months. But he also asked me to apply for jobs on my own, and if I got invited for an interview, to let him know and he would accompany me.


So I applied to several jobs each week, mostly through Wisconsin TechConnect, a job board for people with degrees or certificates from technical colleges. In Mid-March, all of this persistence paid off when a Social Security disability firm invited me for an interview! The manager really liked me, and when the job developer sweetened the deal by explaining the trial period, I was hired on the spot. I couldn’t start right away because some state paperwork needed to be processed, and I needed to order some technology to help me with the job, but I officially started as a full-time case manager for this firm on April 6, 2015.


I will go more indepth talking about this job in future posts, but to make a long story short, I worked as a case manager from April 2015 to Christmas of 2016. But the task management software my coworkers used to manage their caseloads wasn’t fully accessible with my screen reader, and while I tried to improvise and keep things organized on my own, it was difficult to stay organized. So my boss asked how I would feel about no longer having a caseload, and my sole responsibility would be filing appeals over the phone with clients when they were denied. This has turned out to be a perfect fit for me, as the Social Security web site, and the Google spreadsheets used to schedule appeals are fully accessible. And since I noticed that I had a lot of idle time with this position if clients did not answer the phone, or case managers just did not have any appeals for me to do, I approached my boss one year ago today and asked if I could work part-time. I will elaborate more on this later too, but I just missed having time during the week to go to bible study at our church, handle doctor appointments or just rest. Around that time, I had also been in contact with the Occupaws guide dog trainer because Gilbert was really struggling with arthritis, and we discussed the possibility of retiring Gilbert and training with a new dog last summer. Ultumately, we decided to have Gilbert go to work with me one more year because he could still handle it most days, and my office environment would not provide enough physical activity for a young dog. But we may re-visit things this year as he is starting to have other health concerns as well. At any rate, I don’t think I would have had the time or energy for dog training if I worked full-time.


To my delight, the boss said yes when I asked to go part-time! So now I work Mondays, Wednesdays and Fridays. Business has increased a little bit this year so my schedule is always full now, but the longer I have been filing these appeals, I have found ways to be more efficient, so while I was only comfortable filing four appeals a day one year ago, I now schedule six appeals per day. Although life hasn’t turned out the way I imagined when I was younger—I dreamed of an exciting career in journalism and thought maybe by now, I would be a reporter in Washington D.C. covering all the drama there.—I feel a sense of peace and contentment. No one knows what the future holds, but I will cross that bridge when I come to it. For now, I feel like this is where I am supposed to be.


Blogging Against Disablism Day 2013: Stop Doing More with Less

Last year on May 13, I graduated from college with a Bachelor’s degree in communication with a journalism emphasis. Today, May 1, 2013, almost a year later, I still do not have a job. My parents constantly remind me this is nothing to be ashamed of. There is a good chance that I wouldn’t have found a job by now even if I wasn’t blind. The recession is technically behind us according to economic experts, but companies are still slow to hire, fearing what our dysfunctional Congress might do next. The unemployment rate is dropping, but this is largely because a lot of people have become so discouraged they gave up looking for work altogether and these people aren’t counted in the unemployment figure. My brother-in-law earned a PhD six months ago in Microbiology, and he hasn’t had any luck finding a job either. Even so, I cannot help feeling like my blindness stacks the deck against me in ways that it shouldn’t in the 21st century, in the United States, a country founded on ideals of fairness and equality.

     I blame this on corporate CEO’s. Every time I listen to an interview with a company CEO on a news program and they mention phrases like “efficiency” or “doing more with less” a wave of frustration surges through me because while I am not an expert on anything, I have the sneaking suspicion these phrases are part of the reason why 70 percent of the blind population is unemployed.

     It seems as if all industries put these phrases in to practice to some extent, from government, to manufacturing, to medical care and education, but especially journalism. Print journalism could be, should be, and I think used to be a very blind friendly field. With all of the screen reading software, or even a notetaker with a refreshable braille display, writing stories or taking notes during interviews is no problem. If a story requires interviewing someone at a different location, all that is needed is someone–like the photographer who had to accompany the reporter to take photos of the interview subjects or a scene anyway–to drive the blind person to the site and assist him/her in finding the location where the interview will take place if it is a site the person has never been to before. The actual interview requires no vision at all to yield excellent results. My junior year of college when I inquired about an internship opportunity, a person told me that I couldn’t interview people, a major component of that internship, because looking at an interviewee’s body language is an essential part of interviewing. I did not end up applying for the internship because I wasn’t in the mood to waste time and energy fighting this narrow-minded person’s misconceptions, and I ended up finding another excellent internship with a wonderful, open-minded supervisor. But the fact is, while it is true that blind people cannot watch someone’s body language, we are very attuned to a person’s tone of voice, and tone of voice almost always betrays the same things as body language. So interviewing is a very blind friendly task as well. At one time, this was all that journalism used to entail: researching a story through interviews with primary sources that witnessed or were involved in a news event and writing short articles about these events. Photographing an event was a separate job for the photographer, and broadcast journalism was a separate field. But while I was in college, the combined effects of the recession and the exponential growth of social media and free smartphone apps ravaged the journalism industry. By the time I graduated, newspaper staff was dramatically reduced, and just as professors had warned, newspapers were now looking for multitalented reporters who could write well but also produce photos and videos. After all, the biggest expense incurred by businesses is paying employees, so if technology allows for one person to do a job that used to be done by two or three people, the business saves money.

     I wouldn’t mind having both writing and photography duties if technology made this possible for me, but as far as I know, technological advances related to photography have been about making cameras smaller or allowing synchronization to other devices or live streaming to an internet site. There has not been any advancement with regard to helping a totally blind person know where the camera is pointing. I have tried shooting photos and videos of my face and my pets on my iPad for posting to youTube or Facebook just for fun out of curiosity over what it might feel like to be a sighted person with a camera. But despite my sighted parents’ best efforts to explain how the camera needs to face the image I want to capture and be held a couple feet away from it to capture the whole image,  only a couple of the several attempts made were deemed acceptable for public viewing by my parents. Often times, I thought I had the camera facing where I wanted it to be, but the image couldn’t be discerned at all, and on a couple of occasions, I inadvertently captured some, well, inappropriate images if you know what I mean!

     Anyway, my point is that because of my disability, I cannot shoot photos or videos, but I could be an excellent interviewer and writer. Yet when I peruse job postings online, I hardly ever come across jobs that don’t have at least one or two responsibilities that would be iffy if not impossible given the fact that I am totally blind. It’s not just newspapers that are guilty. As I came to appreciate the fact that journalism is a very competitive field and even people without disabilities have a difficult time nabbing a journalism job, I decided to look at Public Relations jobs instead since journalism and public relations skills overlap. But even with these job postings, hiding somewhere in every list are phrases like, “participation in the selection, production and coordinated use of still images and videos,” or “exceptional attention to detail and a keen sense of design,” which to me insinuate in a subtle but firm way, “blind people need not apply.” In my idealized childhood mind, I remember thinking that if I just advocate for myself and all the things I can do assertively enough, or impress an interviewer enough with how well-spoken and educated I am, I could get hired for any job I wanted and my coworkers would like me enough that they wouldn’t mind pulling a little extra weight by handling the visual stuff. But then I gradually became aware that the corporate world is different than the warm, friendly and accommodating school atmosphere. Corporations are not about friendliness, warmth or accommodation. They are about turning a profit. There are laws, most notably the Americans with Disabilities Act and the Equal Employment Opportunity Act that try to force employers to hire and provide reasonable accommodations for people with disabilities, but with a simple form letter, an employer can just pretend they found a better qualified candidate. If a person with a disability gets this letter after attending an interview and suspects that the company really just found a candidate without a disability so they wouldn’t have to go to the extra expense and effort to accommodate a disability, you cannot prove this intention with absolute certainty in court, especially since as I said earlier, lots of people without disabilities are also unemployed.

     I am careful not to mention the fact that I am blind in my application materials unless I am applying for a job with an organization that serves the blind, so I am confident that the fact that I haven’t been called for an interview is due to nothing more than the competitive nature of the job market for everyone and my resume just didn’t stand out. I haven’t applied to any jobs since March because of the very few job postings I find in my field, none of them appealed to me so I am considering giving up the job search and maybe going to graduate school to see if more education opens up better opportunities.

     But when I was looking for jobs, I would apply for ones that looked like they only had one or two visual responsibilities: Jobs with multiple visual responsibilities intermingled with the writing duties scared me away. And then I would await the form letter, half hoping for an interview but also half scared about how I would tout all that I could do and convince an ignorant HR person that my skills were worth the extra effort and expense of accommodating my disability, even if that meant hiring another person to handle visual stuff when the company only planned on hiring one person to do it all. I hate to be cynical, but I would almost be glad to see the form letter of rejection before the company could meet me and find out I am blind because as greedy and profit centered as corporations seem to be, I am convinced they would pull this dirty tactic on me, showering me with fake kindness when they see me walk in with a guide dog and pretend to interview me when they have already made up their mind that hiring me would be too much of an imposition.

     I don’t think more laws are the answer to this problem. If new laws are passed, some people will only find new loopholes to avoid complying with them. Besides, I don’t want to be hired just to meet a company’s quota in compliance with the law, especially if I can pick up a vibe of resentment. I also don’t want to be taken advantage of, hired as a charity case by a company and then paid a lower wage then someone without a disability doing the same work. Sadly, even what I thought were upstanding nonprofit organizations like Goodwill are guilty of this practice, and I think it is wrong. In other words, like most people with disabilities I have met, I don’t want to be treated any different than everyone else.

     With that in mind, in my opinion what is needed is not more laws, but an overhaul of the whole corporate mindset of doing more with less. I have noticed that even people I know who do not have a disability hate this mindset because when companies try to do more with less, the quality of their services and the health of employees often suffer. For example, I am friends with former nurses who noticed that gradually more and more responsibilities were being heaped on to them. When nurses would retire or quit, they sometimes were not replaced and if they were, they were replaced with young nurses right out of college that the company could pay way less. Of course, all young people in any field need to start somewhere, but when a company opts to hire a disproportionate number of inexperienced people rather than a nice balance of experience and youth, mistakes are inevitable. In terms of my own field of journalism, because I read newspaper articles on NFB Newsline, a free service blind people can sign up for to access newspaper content more easily, I am not aware of the proportion of advertisements to articles in a newspaper. But my parents have said that the Sunday paper which used to be fat and full of articles, is now thinner and has a lot more advertisements. I have no doubt this is because when a reporter has to take on more stories due to staff cutbacks, and be a writer, photographer and videographer rolled in to one, of course they cannot produce as much content as they used to. And instead of being just pleasantly tired but satisfied at the end of a hard day’s work, I know people from all fields who come home exhausted from burning the candle at both ends all day.

     The journalism industry really is struggling as people shift toward free web content for their news, so I understand why newspapers would need to cut costs, although on a side note, people need to get used to the idea of paying, even for web content from a newspaper. People have always payed for other forms of information like books and we will pay for intellectual services like legal advice. So paying for high quality journalism from a respected newspaper that has professional standards and rapport in the community shouldn’t be viewed any differently. But aside from that, at the same time many corporations said the recession forced them to “do more with less,” and even plead for government bailouts, they continued paying their CEO’s ungodly salaries, and when the recession was technically over and they were found to be making record profits, many did not hire back the people they had laid off. Yes, the reality is companies do need to be financially cautious because Congress has been gridlocked and useless lately. But if a corporation is making any profit, especially “record profits” they could hire more people. I think some corporations are just using the uncertainty in Washington as a convenient excuse and justification to continue being greedy.

     So forgive me if this sounds like a socialist statement, but I really think the only way we will improve employment prospects for everyone, including people with disabilities is to get the corporate mindset away from the whole idea of turning a profit as the primary goal. If a company wants profit that they can invest back in to the company to expand it, at some point that is unsustainable. I know someone who was laid off from the company he worked for precisely because they expanded too much and went almost bankrupt because they expanded beyond the level of demand for their services in the market. If a company wants to turn a great profit so that the owners can retire early and live lavishly, that is just immoral when so many people, even in the United States, can barely make ends meet. And it could ultimately be unsustainable too if there comes a point when these practices put so many people out of work that nobody has money to buy a company’s product or service anymore. So it is time for companies to put less emphasis on profit and more emphasis on social responsibility.

     When corporations talk about social responsibility, this usually means donating a little bit of their proceeds to local schools or assuring consumers that they only buy from fair trade producers if they sell things like chocolate, coffee or clothing. This is great and corporations should continue these practices. But companies also need to think more about how they can apply social responsibility “at home” so to speak. Company CEO’s need to start asking, “has the quality of the company’s product or service deteriorated at all since we rolled what used to be two or three jobs in to one?” If the answer is yes, and if the company has enough money to separate these jobs again, they could practice social responsibility by not sitting on so much of this money and hiring back some people. If a company has enough money to hire people, there is no excuse for the current situation where people lucky enough to have jobs are worked to the point of exhaustion while so many people cannot find work at all. But this kind of social responsibility could benefit the company as well because if the burden on each employee could be lightened by hiring more employees, and if each employee could focus on their unique talent and perform that talent well, rather than frantically trying to do it all on an inevitably mediocre level, employee morale and the quality of products and services could be improved, and maybe consumers who stopped buying products from a company when they noticed a decline in quality would decide to return and the company could make more money! Maybe it wouldn’t be the record profits they used to make when they rolled multiple jobs in to one, but I bet it would be enough.

     A lot of people don’t like well-intentioned but ineffective laws that try to address diversity problems with quotas and I don’t blame them. Perhaps I am among them because I don’t want to be hired by a company just to satisfy a quota either, nor do I want companies to view accommodating my disability as an imposition or treat me as a charity case. But the “doing more with less” philosophy hasn’t been good for anyone except maybe the CEO’s, so while you could call my thoughts naive and unrealistic, I truly believe that a change in mindset, not laws would be a much more effective solution that would indirectly improve the employment prospects for people with disabilities, while generally improving the quality of life for everyone.

Soul Searching

When I was in third grade, I had an inexplicable fascination with the Iditarod Dogsled race held every year in Alaska. The race retraces the journey from Anchorage to Nome, made by a brave dog named Balto to get medicine for children suffering from diphtheria in 1925. While most of the topics covered in third grade Social Studies put me to sleep, I couldn’t get enough reading about the Iditarod, and long after the Iditarod unit was over, I would daydream about being a “musher” when I grew up. Nowadays, I have no desire to be a “musher” and when you get right down to it, if someone actually offered me the chance to race sled dogs, I probably wouldn’t have gone through with it then either. After all, I could barely keep my balance walking through snow, so standing on a sled while being pulled by dogs would have been out of the question. Also, the potential perilous situations that can occur in the Iditarod like thin ice wouldn’t have appealed to me then and don’t appeal to me now. So why I daydreamed about being a “musher” was for a long time a mystery to me.

     Then in fourth grade, the combined effects of a vacation to a cabin in the north woods of Wisconsin over Labor Day weekend and a whole curriculum based on pioneers like Laura Ingalls Wilder had me dreaming about being a modernday pioneer, abandoning the modern life of hurried mornings, long days away from home and annoying television programs in the evening and raising kids in the north woods. But as I matured I realized I was making that kind of life sound more glamorous than it really was. Using an outhouse? No thank you! Cooking meals over an open fire? As it is, I am still afraid of burning myself while cooking on an electric stove. And we haven’t even gotten to my fear of bugs and my disdain for rugged trails. I still love the smell of the air when we occasionally make it up to the north woods, and could maybe see myself renting a cabin to retreat to once a year (in early spring or autumn to avoid the bugs of course) when I am older. But to live as a pioneer isn’t my calling after all.

     Around the end of fifth grade through seventh grade or so it occurred to me that I really enjoyed writing and so I started dreaming of being an author. Even though I cannot read print books, I have always found beauty in the glossy covers and pages of books. Even now if there is an idle moment, I will sometimes pick up a print book lying on a coffee table and just savor the texture of it. I used to think about how thrilling it might be to be the writer of a real, glossy published book sold in bookstores all over the world, and more importantly about what a peaceful life the life of an author might be, just sitting in a quiet office with no time clock or boss, escaping to a fictional world created by your imagination and writing from the heart. But when I learned that most authors also must still work a day job, that even if a publisher does accept your book, royalties made on the book usually don’t exceed the cost of publishing the book and that authors often have to cave to writing what sells, not necessarily what inspires them, I decided that wasn’t the kind of life I wanted to live either. Believe me. Since I cannot even wrap my head around how J.K. Rowling came up with such an elaborate plot and created such well-developed characters, I don’t think I have the talent to make it in the author business.

     Then in eighth grade as a community choir I was involved in prepared to tour Italy, I started romanticising about making my living singing in a choir and touring the world. But again, I discovered that world travel isn’t as glamorous as it is cracked up to be, what with jet lag, fears of pick-pockets, bumpy roads that are very difficult to walk on and the constant fear of my medicine getting lost or stolen since I think Walgreens pharmacies can only be found in the United States. Besides, choirs don’t pay wages, so between choir tours, I would still have to work a day job.

     By high school, I was finally starting to grow in to myself and form a more realistic dream. When teachers started praising essays I wrote and I had a wonderful experience in a career exploration program offered by my school that gave me the opportunity to work with the news editor for a local newspaper, it occurred to me that I would enjoy a career in journalism. It would be an exciting career that would take me somewhere different each day. I enjoy participating in discussions on news and politics and was starting to notice and get frustrated about all the injustice in the world which I might be able to expose and change with the “power of the pen.” So I thought interviewing people and writing about news and politics would be a perfect fit for me. I was disappointed when I got to college and learned from professors and guest speakers that reporter positions were hard to come by since the shift toward online sources for news forced some newspapers to fold, and all newspapers, including our local newspapers to cut back. But I chose to stay the course, reasoning that maybe I would be one of the lucky ones who would land a job as a reporter. If not, I could settle for a public relations position with a company as the demand for Public Relations is growing and journalists commonly carry over to public relations positions because there are many parallels between these fields. For example, both fields value high-quality journalistic writing that keeps in mind concepts like the inverted pyramid (most important information first, least important last). The difference is that the goal of the journalist is to be objective whereas the goal of someone writing a press release for a Public Relations position is to spin the story as ethically as possible to favor the company. I wasn’t as passionate about Public Relations as I was about journalism but as I began my senior year of college, my mindset was, “hey, a job is a job. I could take a public relations position to pay the bills and then write freelance articles about politics or something as a hobby.”

     But then I read In to The Wild by John Krakauer. It was a book assigned for a Creative Nonfiction course I took in the fall semester of my senior year, and it was one of the rare books assigned for school that I didn’t want to put down. It absolutely captivated me!

     The book retraces the story of a young man named Christopher McCandless who had a seemingly normal upbringing in an affluent suburb near Washington D.C. But after graduating college, he cut off all contact with his family and hitchhiked all across the country. His ultimate dream was an Alaskan odyssey where he wanted to hike to the remote wilderness of Alaska with minimal supplies and live off the land. In 1992, he embarked on this dream with only a light backpack, set up camp in an abandoned bus used by hunters, hunted game and used a book on Alaskan plants to find edible flora. But the dream did not end well for him. In the summer when he was ready to end his voyage, he discovered that a stream which had been calm and shallow when he first crossed it had turned in to a raging river that he knew he could not swim across, so he returned to the bus where he eventually died from eating damp seeds which had developed toxic mold. I agreed with my classmates that what he did was foolish, even a little selfish. Perhaps he also had some degree of mental illness too that was exacerbated when he found out that his father was living a double life, secretly seeing someone else when Chris was little. But when the rest of my class had probably long forgotten about him and relegated his story to the mental file of “just another book assigned for a class”, something about him stuck with me. It was a feeling on the order of “wow! I wonder what it would be like to do that!”

     But why? Was it the fact that it mentioned the beautiful-sounding wilderness of Alaska, re-awakening my silly Iditarod or pioneer fantasies from when I was younger? Was it God’s way of telling me I was meant to have an Alaskan odyssey too, or live as a modernday pioneer after all? “No,” I realized. I am still not fond of wilderness that is too rugged and I have absolutely no desire to break ties with my family, become a hitchhiker or die alone in a bus out in the wilderness! I suppose all children have wild ideas at some point during their childhood. But I was now an educated and thus supposedly mature woman in my twenties. Why, when all my classmates and my parents focused on how foolish Christopher’s actions were, was I still enamored by him?

     I didn’t have much time to think about this book as I raced to the finish line of my college career, got caught up in the excitement of graduation and then had to deal with health problems last summer. But around October when I was adjusting well to Celiac Disease and feeling much better, I started to get a restless feeling in my soul and a yearning for a purpose. This was a good sign, my parents said. It meant that I was feeling better now and ready to think about my future. So for one week in Mid October, I dove headlong in to the task of applying for jobs. If I were collecting unemployment benefits, I would need to apply for two jobs a week, but I could do better than that! Every day that week, I woke up determined to apply for at least one job a day. So on Monday, I applied for a social media representative position with a retail store. On Tuesday I applied for a public relations position with a healthcare company, and so on. At the beginning of the week, I was actually a little upset because as luck would have it, the week I was finally motivated to apply for jobs was a short week. On Friday morning of that week, I had promised Mom I would go with her to Indiana for a family reunion and a long weekend at my grandma’s house where I would not have internet access to apply for jobs or check my e-mail for interview offers on the ones I had applied for.

     But sitting in the car singing along to the radio with Mom that Friday morning, it occurred to me that I wasn’t as eager to keep applying to jobs as I thought I would be, and rather than feeling a sense of accomplishment over the jobs I had applied for already, something troubled me. A few hours in to the car ride, I felt like reading, but as I scrolled through the list of books I had downloaded on to my braille notetaker and saved in my pleasure reading folder, none of them peaked my interest at that moment. Then I remembered In to The Wild. I still had it saved in my college books folder. Although I loved the book, unfortunately that semester was so demanding due in large part to my senior capstone seminar I had to take that semester that I couldn’t really savor the book. In fact, when it occurred to me that I was spending so much time on this book that I was neglecting my responsibilities for other courses, I had to resort to skimming through the second half of the book. In the car that day, I decided that it didn’t matter that the course was over. A book that captivated me that much was worth finishing and savoring. Over the following week as I savored that book, I still couldn’t put my finger on why this book captivated me so much, but I noticed that particular quotes jumped out at me in both readings. My favorite of these quotes was in a letter McCandless wrote to Ronald Franz, an old man he had befriended in Arizona. Toward the end of the letter, McCandless says, “So many people live within unhappy circumstances and yet will not take the initiative to change their situation because they are conditioned to a life of security, conformity, and conservatism, all of which may appear to give one peace of mind, but in reality nothing is more damaging to the adventurous spirit within a man than a secure future” (57).

     Maybe all young people upon college graduation need some sort of retreat to search their souls and adjust to a new chapter of life because when you are really small and life is easy, the idea of soul searching isn’t even on your radar, and when it is, the demands of childhood from homework, to fitting in and participating in after-school activities leave little time for soul searching. Several of my college friends took vacations to Europe after graduation, perhaps to fulfill this need. Maybe given Christopher McCandless’s troubled mind, he just took it to the extreme. Was it possible that maybe all I yearned for was a smaller-scale version of a retreat? What if I invited one member of the family (Mom or Dad) to accompany me, and we rented a little cabin way out in the middle of nowhere for a month, bringing with us nothing but food from the nearest grocery store and books from home? When I thought about it, I pretty much went right from the joy of graduation to the worry and uncertainty of addressing my health problems. After my health improved, maybe I jumped in to the next step in the sequence of life that society expects of a college graduate who elects not to go to graduate school, at least not right away–looking for a job–too quickly without really stopping to honestly contemplate what I want the rest of my life to look like. Maybe a retreat in which I couldn’t log on to Facebook to compare my job searching progress with that of my friends, in which the peace and serenity wasn’t constantly being interrupted by the telephone, where I could cut myself off from the world and its commercialism and negativity, would give me the space I needed to think. Mom wasn’t too keen on this idea. She liked the vacation to nature part, but not the part about leaving all phones at home. It is important to be there if people need us, and these days, it is foolish to be without a phone in the event of an emergency. At first I was frustrated and about to give her the same lecture Christopher McCandless gave Ronald Franz about being too attached to security and conservatism. But after settling down for a few hours and thinking about it more carefully, I realized she was right, especially given my medical issues. And when I got really honest, I like my security too. In fact, I had no idea why I even suggested a retreat because I hate the uncertainty that comes with traveling. What if we found a wonderful cabin, only to discover that the grocery store in town only carried cheap processed stuff full of gluten and I was stuck eating nothing but raw wilted lettuce for a month or something? In fact, I have had moments in the past where I longed for serenity and had no problem finding it on our patio in the summer or in the peaceful sanctuary of my bedroom. If I needed a break from the social pressure of Facebook, I could find the willpower not to log on. Realizing that I really had no idea what I was looking for and was doing nothing more than frantically grasping at straws, I resolved to just clear my mind for a few days, read other books and trust that life would work out.

     Then the following Sunday, Mom and I went to church which holds an event every year called Harvest Fest, an event in which some of the missionaries the church supports come home and speak to the congregation about the work they are doing all over the world. Monday through Thursday of the previous week, the missionaries spoke at evening events, but since we didn’t return home from Indiana until Tuesday evening and were actually leaving on another trip the following Monday, we were unable to attend these events, but a couple of the missionaries spoke to the congregation that Sunday. I couldn’t see the rest of the congregation but I was on the edge of my seat. They were so inspiring! And, again I felt that same “Wow! I wish I could do that!” feeling. But as usual, on closer examination, I realized I wouldn’t really want to live in the rough conditions they described, and given my medical conditions, serving in a third world country would be foolish. As admirable as their work was, it wasn’t the life for me.

     But maybe these long hours in the car was God’s way of giving me the retreat I wanted earlier because on the second trip, I started doing some analyzing. It was during this trip that I thought about everything mentioned in this entry, all my dreams I fantasized about as a child from being a musher in the Iditarod, to a journalist, as well as Christopher McCandless and the missionaries and realized that all these ideas, as unrelated as they may seem on the surface had one thing in common. They all indicated that as far back as I can remember and still to this day, I admire people who dare to be different.

     I admire people who have found something that they are passionate about, and weren’t afraid to pursue it. I admire people whose demeanor seems to suggests they will never be one of those people who look back on their life with regret and say “I always wanted to…” because they are doing what they have always wanted to do. I admire people who don’t feel like they have to be good little soldiers, resigning themselves to a job they don’t find passion in but pays well. I admire people who appear to have jobs where they aren’t spending their lives counting the hours until the work day is over, the days until the weekend when they can take a vacation or something and the years until they can retire, because their job brings them such a sense of joy and fulfillment that they look forward to their job every day. And, in the case of the missionaries and Christopher McCandless especially, I admire people who truly believe and practice a life that has a higher purpose than accumulating wealth and saving for retirement. I still haven’t figured out how this revelation can be translated in to a path that is suitable for me. I have some ideas which I will elaborate on in the next entry, but what I did figure out was the answer to my troubled thoughts after my week of applying for traditional public relations jobs. I was troubled because I realized that I was falling in to line with society’s expectations like a good little soldier. After completing each application, I was full of excitement and hope at the time, but realized on the trip/retreat that I was not excited about the jobs themselves. I was actually dreading the thought of having to put on a happy face and spend my days announcing doorbuster clothing sales on social media or write about the features of heating and cooling systems for buildings if I got one of these jobs. So meaningless in the grand scheme of things! That was how it came to me that the reason I was troubled was because I was letting myself become someone who was only excited about the paycheck, and all of my childhood dreams and the kind of people I admire prove this is not the kind of person I was meant to be, so I pray every day that I won’t cave in to synicism and let myself become someone I wasn’t meant to be.

My First Gluten Free Birthday

Want to know how shallow I can be? Well, when I should have been excited/relieved to find out I had Celiac Disease, the answer to my fatigue and frequent migraines, I was instead heartbroken. I admit one of my first thoughts was “oh no! What about my birthday cake?” All year, I looked so forward to the chocolate cake with chocolate frosting that Mom always made from scratch. My only exposure to gluten free products had been several years ago at my aunt’s house where I tried a gluten free muffin and it was pretty dense and dry, not what I wanted my birthday cakes to be for the rest of my life.

     “Never fear!” said my mom. I was diagnosed in July and my birthday wasn’t until March, plenty of time to experiment in the kitchen with all kinds of flour substitutes and perfect a gluten free birthday cake. Well, Mom was right. I celebrated my birthday a couple days ago and it was a delicious success!

     Before my birthday, my family celebrated three other birthdays with gluten free cake. Just to get her feet wet, about a month before Dad’s birthday, Mom made a basic single layer chocolate cake using a gluten free Betty Crocker cake mix. The gluten free brownie mix from Betty Crocker is so fudgy and spectacular you wouldn’t know it was gluten free unless I told you. But the cake? Not so much. It tasted good, but it was dense and dry as I feared. We all came to the consensus that maybe it just needed some kind of filling like custard or something to moisten it. So in a Betty Crocker cookbook, Mom found a recipe for a yellow cake with a lemon filling. My dad loves the flavor of lemon, especially the Glutino lemon cookies, so we thought this cake would be right up his alley for his birthday. We all agreed it was a recipe worth bookmarking because it was very moist and flavorful, but I’m not as crazy about lemon, so that cake wasn’t going to work for my birthday.

     A few weeks later, we celebrated Mom’s birthday with another Betty Crocker recipe, this one a chocolate cake where you poke holes in the cake while it is still hot and pour a caramel sauce through these holes in to the inner layer of the cake. Unfortunately, the caramel didn’t infuse itself in to the whole cake like Mom had hoped. Some bites would have a wonderful caramel flavor, but others wouldn’t. In the future, Mom wants to try just cutting the cake in half and filling it with caramel rather than the hole method. Despite the uneven distribution of caramel, it was still a good cake, but I’m not as passionate about caramel either. For my birthday, I wanted pure, unaltered chocolate cake!

     Shortly before Mom’s birthday, she had received in the mail a course catalog from a local technical college, in which she happened to spot a class on flourless baking! It was billed as a class to learn how to bake in a healthier way, but it occurred to us that it would be very useful for our newly gluten free household too, so Mom signed up. The class met for two Thursday night sessions and to my delight, after every session she was able to bring home samples of the items she and the other people in her class had baked. Some of the recipes have become family favorites and are now part of our repertoire. Just a couple weeks ago, Mom made another batch of muffins that include pineapple and coconut flour, and we recently made chocolate chip cookies using almond butter too. But my absolute favorite recipe that I have requested the most is this flourless bourbon chocolate cake topped with orange marmalade. Basically I think you just boil bittersweet baking chocolate, butter, sugar and just a tablespoon of bourbon and then bake it in a cake pan. Man, is it melt in your mouth delicious! I am not kidding! It was light and moist in the mouth and really hit the chocolate tooth because it is dark, rich chocolate. I didn’t think I would like the orange marmalade on top because I usually don’t like stuff like that, but it was the perfect flavor complement. Eating this cake, Mom and I realized that maybe the problem with traditional cakes is the idea of trying to modify something designed to be made with wheat flour, whereas this flourless bourbon cake was naturally gluten free.

     Then about a week and a half before my birthday, we celebrated my brother’s birthday. Here I want to pause for a moment and complement my brother. He hasn’t been wild about any of our gluten free recipes, and adamantly refuses to get tested for Celiac Disease, so I told myself not to be surprised if he insisted on a gluten cake. I would have been fine with that. On your birthday, you should get to have what you like, so I would have been happy to just eat the ice cream or something if he wanted a gluten cake, but he said he would be willing to eat a gluten free cake! Like all brothers, he gives me a hard time sometimes, but in this act, I realized that he really does love me and empathize with me.

     Mom couldn’t find any ideas for jazzing up white cake in our gluten free cook books. (I guess they were all written by chocohalics like me because all she could find were chocolate cake recipes. But she found a mix and just cut the cake in half and filled it with extra frosting to moisten it. It was pretty good, but still not up to the birthday cake standards of the old days, so after that party, I officially declared that for my birthday, I would have to go with the flourless bourbon chocolate cake. The only problem was that the way this cake is made, the consistency is really more like that of a thick cookie, which would have made birthday candles difficult if not unfeasible. But I decided I was willing to sacrifice this tradition for a better cake. I am no longer a little kid who needs to make a wish anymore, and besides, since I have always had a fear of bringing my face too close to the candles and catching my hair on fire or something, blowing out my candles in past years has been a comical endeavor that took forever it seemed. I think when I turned twenty, I was having such a hard time that the family started a tradition of assisting me and blowing out a few for me that I just couldn’t reach. So maybe I was getting too old to continue this tradition anyway, I reasoned. But deep down, I kind of still wanted to be a little kid and try to blow out candles again, and Mom hated to end this tradition too. So Sunday morning, she said, “Let’s sit down and look at cake recipes.” It actually didn’t take long to find the perfect recipe. Rather than a box mix, it called for three separate kinds of flour; rice flour, tapioca flour and potato starch. It was also different from our previous cakes because in addition to the typical cake batter ingredients like flour, oil, eggs and sugar, this recipe had you melt chocolate chips and milk on the stove and stir this mixture in to the batter. The introduction to the recipe said it would be moist, and any remaining apprehension about my first gluten free birthday cake melted away with the first bite. It was fantastic!

     Two days after I was officially diagnosed with Celiac Disease, I had an appointment with a job coach and my Celiac Disease came up in conversation as I waited for Mom to pick me up. As is common unfortunately with a large segment of the public, she was ignorant about Celiac Disease, so I explained to her that it meant I had to follow a strict gluten free diet. Mom arrived just in time to hear the job coach say, “well, on your birthday, have all the cake you want.” What she didn’t realize was that on my birthday, I would, and did, have all the cake I wanted. It was just made with gluten free flour. It wasn’t healthy by any means, another misconception people have about gluten free food. In fact if anything, it was even more unhealthy than gluten cake because it called for more sugar than Mom’s old cake recipes. But with all that sugar, chocolate and milk to moisten the batter, I doubt the average person would have even realized it was gluten free. Even if we hadn’t found a cake that was just as fabulous as the old days, it would have been worth the sacrifice knowing that even if it wasn’t as good, at least it wouldn’t damage my insides and plague me with migraines and fatigue later. But in addition to everything else–the happy conversation with family, the gifts, the fantastic gluten free lasagna (with extra cheese and sauce to compensate for the heavier gluten free pasta),– the fact that we found such a fabulous cake, one that I asked Mom to mark as a keeper for my birthday next year, was the icing on the cake of an all-around happy birthday!

Taking a Leap of Faith

Well readers, at the end of my previous entry, I mentioned that there were other events that transpired in the absence of my braillenote but which needed a separate entry. Well, the most important of these events that came to mind first was my leap of faith, literally. I think I have mentioned in past entries that I was Catholic? Well, this is no longer true. I now officially consider myself a non-denominational Christian. It was a somewhat wrenching decision, as I knew it would upset my grandmother, who was also my confirmation sponsor. But as I transition in to adulthood, it occurred to me that while respecting elders is important, I could no longer ignore the yearning for a more meaningful church experience. I am so blessed to have a mother who understood where I was coming from and felt the same way herself. We had been going to this non-denominational church full-time for about a year, but perhaps out of guilt, we kept putting off making the plunge, so to speak, by becoming official members of this church. But in February when we found out about a membership class being held February 28, we decided we were ready. So I guess it is fair to say, ironically enough that Pope Benedict and I both resigned that day.

     It was a three hour class with speakers who discussed the history of this church, what this church believes and what it means to be a member. Then the day after the class, I filled out my membership candidate form, which asked for general stuff like contact information, but also a testimonial about our life before faith, how we came to find our faith and what life is like now. At first I wasn’t going to publish my testimonial on this blog because it is personal, but when we met with our group leader to discuss it last Sunday, fulfilling the final step of the membership process, and the leader said it was really well written, I thought it might inspire others to reflect on their own faith journey as I did, and give them the courage to make a change in their own spiritual lives if necessary.

     It wasn’t so much that I didn’t have faith in Christ. I was raised Catholic and had wonderful moments where I felt Christ’s presence in my life. I was also inspired by my grandmother whose devoutly catholic practices gave her peace which got her through the tragic loss of two sons. But unfortunately, as I got older, I started to notice that I was viewing faith as a one hour a week obligation. I was just going through the motions to respect my family, especially the previously mentioned grandmother who has a strong bias against other Christian traditions. I think this negative attitude intensified when this church’s leaders wanted to renovate the church and school but were having difficulty raising the funding because it was the height of the recession. The priest often spent sermon time showing videos about how great these renovations would be and pleading with the congregation to “prayerfully consider donating more money.” When there was a proper sermon, I often felt like the priest was just rambling about how the readings can be applied to the mission of that particular church, but not really using the bible to go deeper. I felt like I wasn’t growing at all and in fact was possibly regressing. I would rattle off the prayers with the congregation while in my heart I wanted to roll my eyes. When mass was over, I left with a “glad that’s over with for the week” attitude. Something had to change.

     I came to a Sunday morning service at Elmbrook Church for the first time on August 31, 2008. I had just moved in to the dorm at Carroll University and heard that a lot of students went to Elmbrook Church. I had heard wonderful things about Elmbrook from my mom who was also looking to grow in her faith and quietly discovered and joined a Tuesday morning women’s bible study. I couldn’t wait to get home from school on Tuesdays and hear about the dynamic speakers she heard that morning, and we were both inspired by the global mission mindset of Elmbrook. Hearing about all this made me secretly want to attend a church service at Elmbrook and see if this church might bring my faith back to life. But in an effort to respect his mother, my dad did not want to try a different church, and since Mom worked weekends and I am blind and thus cannot drive, my only choices were the Catholic church or no church at all, so I decided to stick it out at the Catholic church. But when an older girl in the dorm offered to take me to Elmbrook that first weekend in the dorm, I joyfully accepted.

     From the moment the service started, I loved it! The music was more modern and way more joyful. Even though I didn’t know the words to the songs at the time, just hearing everyone else singing them made me feel more awake and alive than I had felt in a long time. After the singing, some church members who had just returned from a mission trip came forward to speak and I remember thinking “wow! I wish our church did that!” Our catholic church would take up a collection for a school or church in another part of the world each lent and send teenagers to rural, impoverished areas of this country in the summer to help poor families with home repairs and things like that, but nothing to the extent of Elmbrook’s mission work. And I was awake and engaged through the whole sermon, one based solely on the bible. When that service ended, something told me I would be coming back.

     Unfortunately, I could not come back as soon as I would have liked. Living in the dorm proved to be difficult for me and my new service dog, so my parents and I came to the consensus that I would have a much less stressful college experience if I moved back home. While this was a wise decision for the majority of the week, unfortunately it meant going back to my old church every week. It would have been too much of an imposition to ask the student to pick me up at my house or Dad to take me to Carroll to meet up with the student. Even a year later when my mom got a different job and didn’t have to work as many weekends, she wanted to try and stick it out at the Catholic church, even though she also wanted to grow more in her faith, simply for the sake of family unity. Occasionally if Grandma was out of town, we would sneak off to Elmbrook and Dad would go to the Catholic church by himself, but mostly we still felt obligated to stay with the catholic church.

     But with each passing week, I was feeling more and more frustrated and disengaged. When I confided to Mom that as soon as it was financially possible, I couldn’t wait to try living on my own again, ideally in an apartment close to Elmbrook so I could arrange transportation and go to Elmbrook by myself, Mom and I decided it was time to go where we felt called. We both felt guilty that Dad was going to church by himself, but we decided we couldn’t put our faith life on hold any longer. By the time Elmbrook started the Famous Last Words series (a series that delved deeper in to the significance of the last words Jesus spoke before his crucifixion), we were going to Elmbrook full-time.

     Taking the leap and switching to Elmbrook full-time was one of the wisest decisions I have ever made because my faith life has changed dramatically. Church is no longer an obligation. It is an hour I look forward to all week. And when the service is over, I think I can speak for both Mom and me and say that we are so inspired that our worship continues all week. In the car on the way home from Elmbrook, we always feel compelled to discuss how that day’s message is relevant for our own lives, whereas I pretty much forgot about the catholic sermon by the time I got to the car and the discussion was on to “what’s for lunch?” The songs Elmbrook chooses for worship continue to fill me with joy the way they did that first service I attended, but now that I know the words to many of them, I’ll catch myself singing them with passion all week as I go about the house. My favorite is Beautiful (a powerful song about how we can see God in everything from the sunrise to the galaxies and how we will soon be “coming home.”) While I still fall in to sinful behavior sometimes, I have become more aware of when I am being sinful and pray for guidance and forgiveness on a much more regular basis.

     But the most dramatic and probably important way my faith has been transformed by Elmbrook has been in the revelation that being a follower of Christ is not about observing the right rituals, memorizing the right prayers or donating enough money. It is about following God’s commands laid out in the bible, having a personal relationship with Christ and praying from the heart. Or in the Pastor’s words from the Stuck series (where he talked about sinful patterns believers get stuck in) that still stick with me, “it’s not about religion. It’s about faith.”

     I’m still not the devoted follower I would like to be. I will be the first to admit that sometimes when I am faced with a difficult situation, I forget to pray and instead rely on my own strength, and as a member of Elmbrook Church, I will need to make a more concerted effort to take my worship beyond the church service out in to the local and global community. I will even admit that when watching the news or encountering people skeptical about the existence of a god, I have questions sometimes. But I have come a long way, and as a member of such a large, loving and supportive Christian community as Elmbrook Church, I know my faith can only grow stronger.

Back in the Game

Well hello readers! Long time no see, I know! But it has been an eventful three months. First, there were the Christmas festivities, and the gift of an iPhone. It was such a thrill to be able to send my first text messages and give Siri voice commands that I forgot all about blogging. Then on New Year’s Day, I came down with a nasty virus that required my parents to call 911 because of underlying medical issues. It knocked me down for almost a week. But as soon as I was well, Mom caught it too. She didn’t have to go to the hospital since she doesn’t have other medical issues like me, but it still packed a punch for her too, so I did the dishes and nursed to her. But the largest contributor to the delay was my braille notetaker. Ever since the cable company came out to our house and installed an updated modem so we would have more reliable internet access with our iPhones, my braille notetaker wouldn’t connect to the internet. The network was detected when I scanned for it, and I triple checked to make sure I typed the password correctly and in the right field, but when I would try to connect to the internet, it would say “not connected.” So I contacted my local vendor and when I mentioned that I had never successfully upgraded the computer, (see Trusty Rusty post about that frustration), I was told that I needed the upgraded version to connect to the internet. So I hung up the phone, got brave and figured out how to download the upgrade installation files on my desktop computer and transfer them to a thumb drive which is compatible with the braille notetaker, as the vendor suspected that my braille notetaker couldn’t handle downloading such large files. Nope, still didn’t work! So I called the vendor back and he suggested getting the files from a different site as they could be corrupted. When this didn’t work either, I was so frustrated I threw in the towel and on January 17, shipped the braille notetaker back to the vendor via the UPS store. I figured it was probably a simple procedural thing I was doing wrong, and the vendor would install the upgrade in a snap with an exasperated sigh and mail it back before I even missed it. The good news was I wasn’t incompetent after all! Somehow my flash disk had become corrupted and he couldn’t install the upgrade either. It was shipped off to Humanware headquarters right away for more extensive repairs, but because my DVR counselor was swamped with cases, it took two weeks for the purchase order to be authorized. I admit I was getting pretty restless and bored toward the end of this time, but I actually coped with the absence of my favorite piece of technology better than I thought I would. Working in my favor was the fact that I am no longer in school. If I had to read textbooks using synthetic speech or haul a Perkins brailler to class for notetaking, I probably would have lost my mind. But in this current transitional time of my life, the braillenote is more of a luxury than a necessity. In fact, my vendor offered to loan me another notetaker until mine was fixed, and I almost accepted the offer. But a second later, my conscience prevailed as it occurred to me that the vendor probably only had a limited number of units, and I think he serves the whole state. It would be unethical for me to take a unit just to goof off when someone who is actually contributing to society through their job, or pursuing an education may need their unit repaired and would need the loaned unit more. So I decided I could do without, especially given that I had plenty of other technology alternatives to keep me occupied.

     So how did I stay occupied in the absence of my best friend, technology speaking? Well, I guess you could say I got better acquainted with other friends, figuratively and literally. Early on, I entertained myself by listening to audio books. In October, I met with a friend from middle school who said she listens to books on tape while she drives, and she gave me a book she had finished listening to called Forgive Me. It was a really good book about a journalist who couldn’t wait to leave her boring hometown near Nan Tucket and tragic childhood behind. Her mother died of cancer when she was six years old and her father coped by burying himself in his job. She thought she loved traveling the world and covering horrible stories like apartheid in South Africa, but as she grew older, she realized she longed to spend the rest of her life with a doctor she fell in love with and live a simple life back in Nan Tucket. I had forgotten about this book since I usually just default to downloading books from Bookshare. Before Bookshare, I had listened to books on tape frequently, but since then I have forgotten about the power a good reader has to bring a story to life. I also listened to Monday Mornings, a novel written by Dr. Sanje Gupta about the lives of doctors and nurses, and coping with medical mistakes.

     Each day, I also enjoyed keeping up with friends on Facebook using my iPhone, although I don’t miss the iPhone Facebook app at all! Voiceover would sometimes pronounce words really weird, so I would have to use the arrows to read statuses letter by letter. I also had to think carefully before writing anything, be it a Facebook status, a comment or an e-mail because without cursor buttons, it was very tedious to go back and change a word or sentence! And as if that weren’t enough, an “upgrade” to the app ended up being a downgrade for the blind because instead of the traditional text box to write what’s on your mind, they changed it to a system that voiceover doesn’t interact as well with. I could read what I wrote as a whole, but not letter by letter as I typed. After typing very carefully for a few days, it occurred to me that I could e-mail my status to Facebook, which I did for the duration of my braillenote’s absence. But all of this tedium and frustration renewed my appreciation of how beautiful braille really is, and I said as much on Facebook as soon as my braillenote arrived!

     But best (or maybe worst) of all, I became addicted to Hanging with Friends, a delightfully accessible virtual version of the classic Hangman, with really cute sound effects. When I get a word right, there is happy music, and when I have used up all my strikes and get a word wrong, there is what I think of as “aw, bummer!” music which is followed by the sound of one of my balloons being popped. These sound effects are built in to the game, so they are the same ones sighted people hear. The iPhone’s voiceover reads blank spaces in my opponent’s word as question marks and when I select a letter by scrolling to it on my keyboard and then double tapping the phone, voiceover will say “strike” meaning it’s wrong, or “played” meaning it’s right. The game also makes a happy “ding” when a letter is played, and does a faint drum roll when I only need one more letter to solve the word. When it is my turn to make a word, voiceover reads all the letters randomly assigned to me, tells me how many points each letter is worth, and indicates clearly which slot is a double letter, triple letter, double word or triple word. Unlike Words with Friends which is not accessible to totally blind folks like me because you have to drag the letter to the appropriate square with your finger, Hanging with Friends automatically puts the first letter I tap in the first slot, the second letter in the second slot and so on. I apologize if I am boring blind readers who are familiar with this game, but I wanted sighted readers who stumbled on this blog to understand it.

     Each player starts out with five balloons and the objective is to pop all of your opponent’s balloons by stumping them with tricky words. When I got my first braillenote in high school and discovered it had text adventure games, I was thrilled. I had always wondered what it was like to play a computer game, and I guess it was kind of fun navigating fictional worlds and encountering virtual danger. But despite hours of effort, I never fully figured out how to play these games because the objective often wasn’t clear, at least not to me. Maybe it was crystal clear to people whose minds like adventure and I was meant to be a wordsmith instead. I think Hanging with Friends is also more fun because it is a mainstream game I can play with sighted friends, whereas Text Adventure games are designed to be single player games, and I wouldn’t be surprised if only blind people have heard of them. Anyway, the point is, I quickly fell in love with this game and six weeks later, the addiction is still strong! In fact, even with my braillenote back, I find myself playing that game more than I am using my braillenote!

I’ve gotten good too! In the beginning, I was getting every word an opponent threw my way wrong, but with practice, I have figured out a strategy and use logic to my advantage! I probably shouldn’t reveal trade secrets, but I guess if readers want to use them to fool me, that’s alright because then I can develop new strategies, sharpen my brain and become even better! So when I get a word, I first see how long it is, and see which vowel is already filled in for me. Then, you know how at the end of Wheel of Fortune when there is a bonus round and the host reminds contestants of “r, s, t, l, n and e” the most commonly used letters in words? Well I would use up all my strikes if I tested all those letters, but through experience, I figured out that the words opponents send me almost always have an r, an s or a t, or occasionally all three! So I always test those letters right off the bat. After that, I just carefully analyze the length of the word, which letters are filled in, which spaces are still blank, and sift through my brain and think about letter sequences that would make sense. For example, if an e is in the second slot, I always test A next because there are a tun of ea words in the english language. If e is the second to last slot and the last slot is blank, there is a strong chance that the last slot will be a d because there are a tun of ed words. In this way, I gradually piece together the word. Of course, I get words wrong, especially when tricky opponents send me words I have never heard of before. I have lost games, but I have won a lot too! I have also gotten more creative about making sure to utilize the double and triple word and letter slots to accumulate points faster too. For every 200 points you score by creating words, you earn 20 coins which can be spent on lifelines or items in the virtual shop like fancier balloons for your character, or they can be saved. When I reached 400 coins, I bought or should I say “unlocked” fancier balloons, but I started over after that and plan to save them because I think once you reach 5,000 coins, you advance to a more challenging level, which sounds exciting! Wow, I really need a job, don’t I!

     Anyway, while I was getting addicted to this game, Humanware made my old braillenote seem shiny and new again. When Humanware received my braillenote, they also discovered that the braille display and keys were dirty. In fact the braille display was so dirty according to the report from my vendor, that it had to be cleaned twice! I couldn’t tell from his tone of voice whether he was just stating the facts like an objective reporter, or if he thinks I’m a slob, but that’s alright. However my mom, who knows I’m a slob in other areas (like my blanket that I always find neatly folded on the couch in the morning when it was tossed aside in a heap on the couch before bed the night before) but loves me anyway, laughed. In my defense, I tried cleaning the braille display with what I thought was a soft damp cloth once as the manual instructs, but the cloth was either too rough or too damp and one of the braille dots never worked again, so I decided from then on that cleaning such an expensive unit is better left to the professionals! At the time I attempted to clean the display, Mom had a very demanding job, so Dad and I tried as much as possible not to trouble her with trivial matters like the most appropriate cloth to use in cleaning braille displays and since this happened during my internship in the governor’s office, I couldn’t afford to be without my braillenote. Since the damage to the braille cell was caused by my own hand, I decided I could live with the consequences. When I was reading and a word didn’t make sense, I was able to just fill in the missing dot in my mind and eventually pretty much forgot it was missing at all, so I could have accepted it if Humanware only fixed the corrupt flash drive, which I don’t think I caused, and left my braille display as is. But it is such a joy to have all the dots crisp and clear and in working order that I am treating the braille display like a baby, being extra diligent about making sure my hands are clean and sliding my fingers as lightly as possible. But when I told Mom about the mishap just recently, she informed me that there are special cloths designed specifically for cleaning electronic equipment, so when the braille display needs to be cleaned, I should not be afraid!

     A couple of other exciting events took place in my braillenote’s absence, but this entry is getting long, and since they relate to a different subject entirely, I should talk about them in a future entry. So for now I just want to say that while I didn’t mind listening to audio books or learning a new game, it feels good to be back in the braille reading and blogging game again.

A Different Kind of Joy

It is no secret that I love Christmas. I think I have blogged about it before, but I have noticed that this year, what brings me this joy is different.

     I used to think this joy came from the magical poems and stories like The Polar Express and ‘Twas the Night Before Christmas. But as I have grown in to my adult self, I still smile when I hear these stories, but they don’t enchant me as they once did.

     I used to think it came from the baking. I still smile as I lick chocolate remnants from bowls and eat our special cookies, and still plan to this year, but this year, the idea of baking no longer consumes me with joy to the point where I can hardly sleep or concentrate on anything else during the month of December, which baking once did.

     I used to think my unusual joy came from the Christmas songs on the radio, but just this year, it seems as though most of the songs are stupid, and the overplaying of songs like Santa Baby epitomizes everything wrong with Christmas in America.

     I admit I am still a little enchanted by the Christmas tree. The family tradition is to go to a Christmas tree farm each year soon after Thanksgiving and cut down a real fir tree! Frankly, the spectacular enormity and complexity of so many branches, and the heavenly aroma of fresh pine leaves me baffled as to why so many people settle for unfolding an artificial tree from the attic. I am the only child still living with my parents, and the only one who still enjoys bringing home the Christmas tree, but as I saw my parents struggling to figure out how to hold the tree, carry it to the car and tie it to the roof, feats of strength for which I am not equipped, for the first time this year, I felt a little guilty.

     It’s kind of fun to open presents on Christmas morning, and I appreciate everything I am given, but since I am too old for toys now and learned long ago that there isn’t a Santa Claus, it no longer enchants me and keeps me up all night Christmas Eve. Besides, the commercialism which I never paid attention to as a kid is pathetic to me now.

     I love when the whole family comes home and we spend the afternoon playing board games, but two of my siblings live far away and could only make it home for Thanksgiving this year, and the one who lives locally usually doesn’t come until dinner time. I will still enjoy playing board games with Mom, and possibly Dad if we can talk him in to it, but with the house being so quiet in recent years, it just isn’t the same.

     I apologize if I am bringing you down on this most wonderful time of the year. I admit I am mildly depressed and not in the holiday spirit that I usually am. Part of it could be due to some stressful medical situations in my family which have us all a little worried. In addition, the scarcity of jobs, and a total absence of passion for the job postings I have seen has been discouraging. But this same discouragement has caused me to think about my life from a more spiritual, not just economic perspective (more on that in my next post). But maybe this pull to think more spiritually is why there is still one aspect of Christmas that enchants me: in fact it enchants me on a deeper level than the commercialism that I thought was so magical as a child. Actually, it is not a Christmas tradition, but a beautiful choir memory. Just thinking about it melts all depression and anxiety away.

     I know I haven’t written much about my passion for singing in this blog. I don’t know why. I guess maybe in college I was just so busy that it was easier to write about Gilbert and college life than find the inspiration to describe my passion for singing with the beauty it deserves. But now with no responsibilities, I am ready to try.

     I started singing in choir as a fifth grader in a school chorus that rehearsed during the lunch recess, and sang every year through high school. In seventh grade I also joined a community choir, the Milwaukee Children’s Choir. Unfortunately in college, my classes were so demanding I burned out and couldn’t motivate myself to join choir every semester, but I sang with the college choir two semesters and performed with a really cool women’s barbershop chorus one semester.

     All of these choirs have given me beautiful memories to associate with all seasons of the year, but Christmas, a season defined by music brings an abundance of special memories, especially in high school.

     My sophomore year of high school, my community choir had the opportunity to sing a piece called the Christmas Sweet, arranged by Mark Brymer in Carnegie Hall. The whole trip was magical; the excuse to get out of school; the chance to experience New York City, the largest city in America that is romanticized in so many television shows and movies; and of course the chance to sing in Carnegie Hall, the dream of every musician. But singing that piece was the most spectacular moment of all. It was beautiful when we rehearsed it with only the piano for accompaniment, but when we sang this piece with a professional orchestra, it was stunning! The orchestra brought the piece to life as we sang about everything that makes Christmas beautiful. In the first movement when the beautiful voice of an adult soloist sings “When the frost starts to glisten / And the nights blush with cold / And the streets shimmer gold / It’s Christmas” and the orchestra accompaniment is soft and light, I could just imagine that beautiful image, despite having no memory of being able to see. When the children (who were as young as ten and as old as 17) came in, I was transported in my mind to a cozy livingroom and imagined a child looking out the window and seeing the images we sang of with awe and wonder. In the third movement called Rejoice, the soloist sings “Rise up shepherds and follow,” and when a soft drum accompaniment that sounded both excited and urgent follows this solo and then us children sing “Follow! Follow! Rejoice! oh Israel!” I remember thinking how perfectly this song depicted the excitement and sense of urgency that was probably felt by the shepherds two thousand years ago. In the fifth movement, Snow, I remember being transported to childhood days of playing in the snow. It began with the orchestra mimicking blowing and drifting. Then the younger children sang “snow, snow!” soft and slow as if they had just woken up and looked out the window to see the first real snow of the season. Then different parts of the choir shouted back and forth “SNOW! SNOW! SNOW!” mimicking that child we all remember who can barely contain themselves as they are so excited to go out and play in the snow. Then there is fast joyous singing and accompaniment as the kids play in the snow. But just like in real life, the end of the piece is soft, as the children are sleepy and glad to be back in their cozy home. “All the world is safe tonight / underneath this quilt of white…Look around and know, the wonder of snow.”

     It is easier to write about the wonder of snow than the wonder of music because the beauty of a melody  or the spectacular harmony of voices and instruments is beyond words. To fully appreciate the beauty of this piece, you will have to find a recording, but take my word for it that it was absolutely enchanting! I wasn’t able to get a recording of our actual performance, but I have an old recording the choir produced before I had even joined, and every year since then, hearing it would enchant me anew as it would bring back the memory of what an incredible experience singing it onstage with a spectacular professional orchestra in front of us was. But this year for some reason, while I smiled at some of my favorite parts of the piece mentioned above, it didn’t enchant me to the point that I had to stop what I was doing, stand transfixed by the stereo as the magic came flooding back to me, which it used to.

     Two years later, the fall semester of my senior year of high school, school was rough for me. I was in the process of applying for college the next year, and meanwhile, to prepare me for college, the aide that worked with me wanted me to be better at thinking for myself and being independent, so she raised my expectations and I wasn’t doing a very good job of meeting them. On top of that, Math concepts covered around Thanksgiving were so hard for me to grasp that it took me hours every night to get my homework done, so I had to take a leave of absence from Present Music, an annual concert featuring unusual pieces from modern composers which the choir participated in at that time, which required extra rehearsals. But to my relief, things lightened up just in time for the holiday pops concert with the Milwaukee Symphony Orchestra, which that year was conducted by award-winning screen composer Bill Conti.

     I had the privilege of performing with Doc Severinsen four years earlier, but unfortunately, I couldn’t fully relax and enjoy it because I had been sick most of that week and had to miss school, and thus I dreaded the mountain of make-up work that awaited me when I got home from the concert. But if that holiday pops concert was marred, the joy of this concert four years later was double! It was absolutely enchanting!

     For one thing, instead of traditional risers, this venue uses bleachers onstage so that singers can sit during instrumental pieces. But the Children’s Choir was supposed to climb up to the back rows of bleachers and my choir director agreed with my mother that I had no business climbing up bleachers, so I got to stand in the front row with the adult choir! I loved this choir, and the director accepted high schoolers, but it did skew young, so what a thrill it was to be surrounded by power-packed full-grown voices! In addition, there were a couple songs where the children’s choir had limited parts. For example, in The Twelve Days of Christmas, the children’s choir was only supposed to sing “and a partridge in a pear tree”, but I wanted to sing with the adults around me so bad, and figured it would look silly if one person wasn’t singing with everyone else around her, so I quickly learned the adult parts of that song, and all the versus of Jingle Bells! Oh what fun it was indeed!

     And just like in the Christmas Sweet, the stunning accompaniment of this community’s outstanding professional orchestra transported me and reminded me of the childhood magic of Christmas. I will especially cherish the children’s choir solo piece Candles in the Window. Played on piano I never noticed this, but a professional orchestra can play notes with such emotions that when combined with the words, especially “all of the music, all of the magic, all of the family home here with me,” it was all I could do to keep my composure and sing. It was so beautiful and magical it was all I could do not to cry. And the sound effects for Santa Claus is Coming to Town were so awesome it was all I could do not to jump for joy like I did as a child on Christmas morning!

     I don’t know if it was the fact that I was sitting with the adult choir, or even the knowledge that this would be my last holiday concert of my legal childhood, or just the fact that school had been so stressful lately that I was starving for joy. But I am not sure I had ever smiled so big for so long before or since. I savored every moment and would have loved that experience to last forever.

     I’m sure the other singers were smiling too. How could you not? But when we were in a room backstage between songs, while the other kids moved on, talked about unrelated things or played cards, much of that time I was in a trance-like state. When I did manage to speak, it was to tell anyone who would listen how much I would love to join the Symphony Chorus next year (forget college choirs) and have this joy every Christmas for the rest of my life!

     I was not able to get a recording of this performance. Part of me now wishes I would have had the nerve to break the number one theater rule, you know that announcement made before any professional performance that “recording equipment of any kind is prohibited.” My choir uniform had deep pockets, and I had a really small tape recorder I used for student newspaper interviews. Just kidding. As a musician, I understand why this rule is in place. If everyone recorded performances, and a few people pirated them, musicians might no longer have jobs. Why pay to see future holiday pops concerts if past ones are readily available online? But sometimes, I think memories are even more beautiful without a recording to spark them.

     The announcement that Mom had bought two tickets for this year’s holiday pops concert conducted by Doc Severinsen was all that was needed to bring these magical memories back to life. But while the concert was beautiful and Doc Severinsen was an exceptional trumpeter and entertainer, the concert just didn’t live up to my memories of 2007. To be fair, there could be many explanations for this. For one thing, the children’s choir wasn’t in the concert this year, and perhaps for that reason, none of the songs that so enchanted me were in the repertoire. It was beautiful, and I can understand the reasoning behind changing it up every year, but I am a traditionalist and was surprised and disappointed that I didn’t hear the cute orchestra arrangement of The Twelve Days of Christmas, Candles in the Window or Santa Claus Is Coming to Town. For another, being in the audience is a lot different than being onstage because in the audience, you are far removed from the orchestra, so it is possible that had I been onstage, this year’s songs would have enchanted me, and if the old songs were played, they would not have been as powerful as they were onstage. Or it could simply be the fact that since I was so stressed by school back in 2007 and was starving for joy, the emotions of that concert were magnified beyond normal. But either way, by the next morning, my mild depression and lack of holiday spirit had returned.

     But the one memory that has cut through my blues this year started out as a much simpler affair than the grandeur of a symphony orchestra. It was November 2006, my junior year of high school.

     At the beginning of the year, the choir director told us we would be going to Minnesota to sing with the Saint Olaf College in their annual choral festival, along with a few other high schools from Minnesota. I was excited because the Saint Olaf choir came to our area the year before for a concert and their choir is fabulous and their director well-renowned in the choral world. But as we rehearsed the songs, I didn’t have the degree of eager anticipation that I had the year before singing the Christmas Sweet because the only accompaniment for these songs was going to be piano, which is of course a beautiful instrument but not as magical as a full orchestra. And as we rehearsed our songs, especially Joy to the World, the finale of the festival that would combine all of the choirs (which I would find out on the day of the festival meant a total of over 1,000 singers), I just wasn’t feeling the Christmas spirit of that song. It could have been because even by choir standards, we were rehearsing Christmas songs unusually early, or it could have been the fact that drilling notes, even for students who love choir is tedious. Since choir was the last hour of the day and I had a very full schedule that semester, I was usually already spent before choir even started. But in retrospect, I think the biggest reason for my lack of spirit was that I honestly had no idea how joyful Joy to the World could be.

     Our church sang it every Christmas, and it was a pretty enough simple carol, but in church, it just never really moved me. It could have been that at my church, the organ player played really loud and drowned out the congregation singing, but also as with any church, a lot of people don’t know all the words to the songs and still more are shy about singing, so even though the church easily had over 1,000 people in the pews (and aisles on Christmas Eve), the carol always seemed a little lackluster. Somehow, it just never registered with me that I wasn’t in the company of shy church parishioners anymore. I was at a choral festival with over a thousand people who loved to sing, rehearsed the words well and weren’t shy at all. It didn’t register that is, until the first chord “joy!” rang out. It was loud and confident and joyous beyond words! Because our group was too large to fit on a stage, we sat in rows of folding chairs in a gymnasium, which almost made it feel like I was sitting in a church congregation. When a small choir sings onstage, the sound is still wonderful but because the choir is much smaller, and the traditional arrangement is to be crammed on to small risers, the sound is more crammed too. But in a church congregation kind of arrangement with a thousand singers spread over a whole gym, there is sound everywhere, as if the whole world were singing! Oh was it heavenly!

     In fact, a year later, my grandfather passed away and at his funeral, a cousin who I don’t see very often sat next to me and we started talking. One thing led to another and I think I told her about my involvement with choir. That’s when inexplicably, that finale of the Saint Olaf festival flashed in my mind. Many accounts of heaven I had heard talked about a choir of angels, and it occurred to me that if true, it was possible that at that moment, my grandfather was singing songs with the same joyful sentiments as Joy to the World with a choir of potentially billions. If an earthly choir of a thousand people in a gym can fill me to bursting with joy, imagine a heavenly choir of billions of souls, free of earthly distractions and self-consciousness! I am kind of a stoic person. I was sad when both my grandfathers died, but I just am not the type to cry openly at funerals. But the beauty of that image that flashed through my mind almost made me tear up.

     Of course, our worldly life has a way of distracting us, and as I plunged back in to the school routine, I forgot about this image. But around Christmas when my mom finds the recording I was able to purchase of this festival, that image comes back to fill me to bursting with joy again and makes me want to live a holy life so I might join a heavenly choir one day too.

     As with the Christmas Sweet and the Bill Conti holiday pops concert, that finale left me in a joyous trance as I got on the bus to return home, but unlike the other concerts, this memory has yet to lose its luster, and something tells me it never will.

     The summer before I started high school, my mom and I went to Rome with my children’s choir, and of course when we weren’t performing or eating delicious Italian food, we were touring all of the famous Roman landmarks, especially the Vatican. It was in the Vatican that I remember my mom commenting to another mom something to the effect of, “all this marble and artwork is beautiful, but it’s a far cry from a little baby in a manger in Bethlehem isn’t it?” Maybe it is the same feeling with me and music. The thought of singing with an orchestra in front of me is still beautiful. But a lot of what we were singing related to the commercial elements of Christmas. Add to that the fact that the orchestra instruments are man-made and very expensive– (I once was told in a talk given by members of this orchestra that one violin costs a million dollars)–and I also realize that performing with an orchestra is in its way a far cry from the sentiments of a baby in a manger.

     As I mentioned earlier in this long post, the lack of jobs in general, and the absence of any passion for jobs I have seen has caused me to think more spiritually about my life. I know so many people who are in jobs they don’t like, but stay with them because “they pay well.” Having money to buy fancy toys may bring you happiness for awhile, but eventually the novelty of a new toy will wear off. I know it will because the man-made joys of cookies and toys were beautiful for awhile, but the novelty wore off as I matured. But the simple beauty of a whole bunch of people in a gym making full use of their God-given musical instruments, their voices, and singing a song that epitomizes the true meaning of Christmas which is Christ’s birth, that is the one element of Christmas joy that remains as magical as ever.

     I know that every moment of life is not meant to be bursting with joy, but I cannot help wonder if the fact that this song continues to overwhelm me with joy all these years later is a symbolic sign from the spirit that a prestigious title or great paycheck in a man-made corporation whose only goal is profit might be exciting for awhile. But like a simple song in a simple setting, it is the simple life with a career devoted to a higher purpose that will foster a life that is joyful overall because joyful moments created by God never fade.