Posts Tagged 'life'

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.

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.

I Witnessed History

Well readers, this past Saturday, I had the opportunity to fulfill a dream I have had since 2004, the first Presidential election that I paid attention to. I got to see a small piece of history through the experience of a campaign rally!

We have all seen them on television, and if you are passionate about one candidate or another, you may have even cheered or clapped along with the crowds as the candidate shouted words of inspiration on television as I have. Maybe it’s the journalist in me, but ever since I started paying attention to these rallies, I longed to not just cheer along with a television crowd, but be in the crowd, to not just listen to a reporter trying to capture the experience, but experience a rally for myself. Of course, when there is something you really want to experience, the candidates would always come to town when I had school, and when I was off, the campaign rallies were too far away. My freshman year of college in 2008, John McCain held a rally just blocks from my college, and my mom had the audacity to attend the rally with my grandmothers, but insist that I go to class! If I were sighted, I might have fooled her and walked in the door of the building where I had class, waited until the car was gone and then walked to the rally where I would have blended in with the masses and she would have never known. It wasn’t high school anymore, so the school wouldn’t have contacted her or given me a detention. As it was, Gilbert and I didn’t know the route to the rally and I didn’t know of any friends who were going, so I went to class like a good student. But as I listened to the professor, it occurred to me that the 2012 campaign season would be in full swing the summer I graduated college. If the economy was still shaky then, I might even be able to enjoy a few months without a job. If this turned out to be the case, I vowed that 2012 would be the year to fulfill this dream.

Well, 2012 came in the blink of an eye, and I did graduate and the economy is still bad, so I still don’t have a job. Given that, last Monday September 17, Mom was trying to talk me in to going with her to Indiana for a family reunion on Saturday. I was a little reluctant, fearing that finding something gluten-free at a potluck-style family reunion would be a nightmare. When she promised we would get to Grandmas house in time to go to a grocery store and make gluten-free food, I was starting to cave. And then I found out that Barack Obama was coming to Milwaukee for a rally on Saturday. It was officially decided. Sorry Mom, but I have to go to that rally. I have waited years for this experience. Perhaps remembering how I envied her in 2008, she understood.

The rally was free and open to the public, but tickets were required. So after a career fair last Thursday morning, the kind of event when we would usually be tired and hungry and thus choose to go straight home, we bypassed the home exit on the freeway and made a special trip to one of four Organizing for America offices in our area to pick up two tickets. We had to fill out a form with our contact information to obtain the tickets, and as long as they had lured us in, the form asked if we would be interested in doing anything on a list of volunteer opportunities for Obama’s campaign, and Obama T-shirts and buttons were on display for purchase with a donation. Boy are politicians clever and opportunistic! We didn’t want to commit to volunteering, but I fell for the Obama button for a donation ploy. I had to have something to show off at the rally after all! Everyone else probably would too! So I got a Women for Obama button with a $1 donation.

Mom put the tickets on the little kitchen table when we got home so we would see them Saturday morning, and every time I would walk by that table, I would feel for the tickets to verify that they were still there, that they hadn’t been accidentally lost amidst other paperwork or gotten anything spilled on them and because I just couldn’t believe that the opportunity I had patiently waited eight years to experience was just two days away now and touching the tickets confirmed this was actually for real!

Last Friday I got a reminder call from a volunteer, as if I would forget to show up for such an opportunity. The volunteer said the doors to the park where the rally was to be held would open at 2:30 in the afternoon, so we should try to get there around then to get a better spot in line and get through security in time for the President. So on Saturday at around 1:30, sporting blue jeans, a white T-shirt, a red fleece jacket on which Mom helped me pin the button and a pair of good walking shoes, and with both of our tickets in my excited little hands, we headed for the rally.

Now I knew there would be a long line. This was the president of the United States after all, and not just any president but the first African-American president and an inspiring speaker. But when an organizer of the event spoke on the news Friday casually predicting “a couple thousand people”, I imagined a line that was blocks, rather than miles long. Dad had the car parked right at 2:30 and already when we took our place at the back of the line, Dad said we were a mile from the park. And as we stood in line, people were still coming in waves, until Dad told me that the line wound around buildings and extended all the way to the lakefront miles away.

“I’m not sure we’ll be able to get in on time,” Dad confessed when he saw where we were in a line that didn’t budge for over an hour, “we’ll try to get in, but don’t be too disappointed. I think someone near us in line said they heard people who were closer to the gate had been there since 9:00 in the morning. I wouldn’t have had the patience to hold a place in line for that long, even if it was to see the president. But I will say it was the most pleasant, festive line I ever waited in. It was nothing like waiting in line to get on an amusement park ride, where everyone is in a tight single-file line with the hot sun beating down and little kids getting tired and upset. It was around 56 degrees, a cool Autumn afternoon. I think it was a pretty cloudy day too. I did feel the sun occasionally, but it wasn’t oppressive at all. Since the line didn’t move very fast, people could step out of the line and sit in the grass or on a bench and then get up when the line moved. Since I was running on adrenaline, and since I am used to standing for insane lengths of time from when I was in choirs, I could have stood the whole time. But Dad insisted that I should be one of the people sitting down because if we managed to get in to the rally, it would likely be standing room only so I should pace myself.

Surprisingly, at least where I was, I didn’t hear any protesters, and Dad didn’t see any protest signs either. Perhaps in the aftermath of last year’s Capital chaos in Madison, police have been cracking down, so protesters decided to stay home. But at different times, random people would come around selling Obama merchandise. “Obama buttons! Obama buttons! 2 for $5!” or “T-shirts for $10! Others are charging $15!” When the line progressed a little further, someone was even selling Obama underwear! I’m not kidding!

Just behind us was a mother and her little boy who ran around and played a little while we waited, although the mother basically said to be careful because if he got hurt, they weren’t leaving. He complained a little about the long wait, but overall was a great sport, behaving much better than I would have at his age. On the one hand, he seemed a little young to be at an event like this, but he seemed old enough that he would remember the event and while he may not appreciate it now, when he grows up he will understand that he got to witness history.

After over an hour in which time the line hardly budged, all of the sudden it was moving fast and we pretty much walked without stopping until we reached security. Since it was the President, it was airport style security where we had to empty our pockets of metal, throw away any liquids, and even remove our Obama buttons. To my relief though, we did not have to take off our shoes!

And then at about 5:00, we were in the gate! Dad was right. By the time we got in, all of the seats were filled and we were standing crammed like sardines ten rows back. The outdoor venue where this rally was held is a popular venue for summer festivals. I’m not a fan of outdoor concerts so I had never been to this venue, but my dad had and said it wasn’t very big. Someone else said it seated around 5,000 people, but the next day, I read a recounting of the event from a blogger who reported there were 18,000 people there. At first I thought that whoever organized this rally seriously underestimated Obama’s popularity, until Dad explained the politics of perception to me. Organizers of rallies like this intentionally use smaller venues to create an overflow crowd because if the event was hosted in a big venue and there were empty seats, it would look bad.

My dad had to stand on his tiptoes to see because there were tall people standing in front of us and I had to strain to hear the speakers because people around us were talking, but we were there! When a former Democratic Senator, a woman running for senate and a union firefighter gave speeches, the crowd seemed enthusiastic but relatively subdued. But when the president of the United States stepped on to the stage, that all changed. The audience erupted in deafening cheers, mirroring the spirit of the rallies I had seen on television. And if you thought he could give a rousing, inspiring speech on television, they are ten times as rousing when you hear them in person! It’s one thing to hear a crowd “boo!” on television when Obama talks about Romney’s vision for the country. It’s quite another to be in the booing crowd and then hear him say “don’t boo! VOTE!” From then on, every time Obama said “Don’t boo!” the crowd would shout “VOTE!” After awhile this cheering and booing gets boring when you have to listen to it from the other side of the television screen. As a passive television viewer, I have accused these crowds of being silly and overly dramatic. I admit to fantasizing about getting “good seats,” or maybe even having the opportunity to shake the president’s hand, so I was a little disappointed about how far back we were, fearing that the experience would be no different than if I had watched it on television. In fact, Dad and I probably could have seen and heard the president better on television. But as soon as the whole venue exploded in cheers, I realized that the back of a live audience is still part of a live audience through which energy and emotions spread like wildfire. And no matter how far away we were in the venue, if you put it in to perspective, you realize you are still closer to the president than many will ever have the opportunity to be, making the long line well worth the trouble.

Two favorite lines from this rally that were re-played by reporters and which I liked too:

“We are not Bears fans first or Packers fans first. We are Americans first.” I don’t care about football, but it is common knowledge that Obama is a Bears fan. It made me think how nice it would be if a few extremely partisan bullheaded politicians on both sides were listening to this speech and took a hint, perhaps taking it a step further and changing the words in their head to “we are not democrats first or republicans first. We are Americans first.”

“I don’t see a lot of victims here today. I see hardworking Wisconsinites.” Alright, politicians are human and since even I, an average person feel terrible when I have occasionally said things that got misinterpreted, I cannot imagine how much worse politicians must feel when their every word is scrutinized across the country. Unfortunately, I have the sneaking suspicion–based on the fact that Mitt Romney defended that statement last week rather than apologizing for how it was interpreted–that he was not misinterpreted. Of course there probably are a few people out there who don’t have any desire to pull their weight and expect the government to take care of them when they are perfectly capable of working. But I believe that people are basically good and therefore I am sure that 46.99% of them are hardworking Americans who simply cannot find jobs that pay enough to provide for their families, let alone pay taxes. Or perhaps they desperately want to work but cannot find jobs at all because so many companies were encouraged to outsource jobs to China with tax breaks under the republican leadership of George W. Bush? The thought of having a president so excessively wealthy he is out of touch with this reality scares me.

But the most thrilling moment of the rally to me was when Obama reminded us that Osama Bin Laden was dead. It started with just a few people toward the front, but within seconds, it reached the back of the venue. “USA! USA! USA!” Despite all that is wrong with our country, it is amazing to see such contagious patriotism is still alive. If any Obama opponents hidden in the audience weren’t woken up by the “we are not Bears fans or Packers fans first. We are Americans first” comment, maybe this swell of patriotism got their attention. No matter who is president, we are Americans first and we should all want terrorists brought to justice and work together to secure a bright future for our country.

I try to keep political preferences off my blog as much as possible because I want to express myself, but I am not the kind of blogger who wishes to alienate anyone or ignite a fight in the comments. But I am sure some of you noticed my little jab at the republican party earlier. So while I would never go as far as buying Obama underwear, I admit that this election, I am for Obama all the way. I don’t worship Obama as if he will save the world, nor do I believe that republicans are evil. Both candidates are mere imperfect humans. After the Republican convention, I was appalled to hear that Mitt Romney’s campaign was supported by donors whose identities were top-secret, only to find out a week later after the democratic convention that Obama had secret donors too. And my internship with my state’s republican governor last summer woke me up to the corrupt behavior of unions which I admire republicans for trying to end.

I would not rule out someday voting for a republican if he/she was intelligent, well-spoken, had reasonable and moderate views and was specific about their plans. But I had a bad feeling about John McCain, and I have an even worse feeling about Mitt Romney. As an observant journalist, I have noticed that every time a reporter asks Mitt Romney a tough question, he dodges it with a blatantly scripted statement, whereas Obama answers tough questions more directly. Mitt Romney seems to pander to his party, promising to repeal the Affordable Care Act, whereas Obama isn’t afraid to do something politically unpopular. I’m sure the transition toward more government control of healthcare won’t be perfectly smooth, but something had to be done to hold insurance companies accountable for unethical behavior like denying coverage to people with pre-existing conditions (like me once I can no longer be covered by my parents). Mitt Romney said he would make sure people with pre-existing conditions are covered, but since he won’t be specific, I worry he is just saying that to lull people in to thinking he will be moderate, and then once elected, he will return us to the status quo where insurance companies are in charge. And as far as republican scare tactics like telling us this will mean “socialized medicine”, we already have socialized medicine. Everybody who comes to the emergency room is cared for whether they are ensured or not, but the cost of caring for people who won’t pay for insurance because they never thought they would get sick is passed on to those with insurance making their healthcare costs higher. The provision of the Affordable Care Act which requires everyone to have insurance or pay a penalty will simply distribute healthcare costs more fairly. I am also aware that Romney passed a very similar Universal Healthcare plan as governor of Massachusetts, making me wonder if the one and only reason he is vowing to repeal it is because a democrat passed it.

My point in saying all this is that at least when it comes to this dream come true, as cliche as it sounds, patience is bitter but its fruit really is sweet. Sure the immature student in me would have loved to play hooky to see a campaign rally so close to my college. But John McCain lost the election of 2008 and was quickly forgotten by the media, and likely would have been forgotten by me too, especially since he wasn’t a candidate I was fond of. I would have just been going to the rally to experience a rally. But having the opportunity to experience a rally for the president of the United States, and realize that I didn’t just experience a rally but was inspired by it, made this an experience I will never forget.

I’m Dreaming of a Good Pizza, Just Like the Ones I Used to Know

In the old days before Celiac, there was at least one night every week or two when it was a long day of school or work and we had no energy left to cook an involved dinner, a day when someone was feeling under the weather and needed quick easy comfort food, or nights when we just wanted a yummy dinner that was befitting of a Friday or Saturday movie night. In all of these cases, someone would say, “let’s get a pizza.”

     My parents and I liked to go to a sit-down restaurant for pizza occasionally, and occasionally we would carry out pizza from Pizza Hut or Rosati’s. But as we matured and became (slightly) more health conscious, we became fans of the take-and-bake revolution. When we baked pizzas, not only were they fresher and hotter. They also seemed less greasy. Come to think of it, that was around the time that a Papa Murphy’s opened up just five minutes from our house.

     It wasn’t long before we had the cooking instructions for Papa Murphy’s pizza memorized, so when Mom or Dad called to indicate they were on their way home from work and almost to Papa Murphy’s, whoever was home would set the oven to preheat. If it was a weekend and we were all home, someone would set the oven before we left. (We have one of the new energy efficient ovens that takes forever to be ready, but we had the timing for Papa Murphy’s down like clockwork. If we preheated the oven before we left, or when Mom or Dad was close to Papa Murphy’s, we could hear the “Beep beep beep” announcement from the oven that it was ready as soon as we walked in the door with the pizza.

     Unless there was an irresistible special pizza we had to try, or a silly, cute novelty like the thick-crusted pizza designed to look like a Jack-o-lantern for Halloween, we would almost always get a family size delite pizza (with Papa Murphy’s signature cracker-thin crust). Usually, we ordered it with canadian bacon, tomatoes, mushrooms, green peppers and onions. If Dad found a coupon that was only good for one or two toppings, he would quickly slice up our own vegetables and add them to the pizza. This was delicious too. Occasionally, we also enjoyed trying something unusual like the chicken parmesan delite or chicken artichoke bacon delite.

     The name sure suited these pizzas well. Just carrying them in to the house when they were still a giant cold paper plate of uncooked dough and toppings wrapped in saran wrap was a delight. When we got the fully loaded pizza, I swear that plate weighed five pounds, and it was the kind of pizza you had to carry cradled in the flat palms of both hands or else the plate would buckle under the weight of all the deliciousness it was carrying.

     It only got more delightful from there. In the few minutes when the pizza smelled wonderful but wasn’t quite done yet, I would be salivating like a dog. When Mom or Dad pulled the pizza out of the oven and placed it in the center of the table, those seated at the table would go “ah!” the same expression of contentment as when a cool breeze comes through an open window. Each slice felt like eating a delicious work of art too. They were the kind of slices that fit perfectly on a dinner plate. The crust of each triangular slice fanned out like wings across the whole width of the plate, and each slice also had to be cradled in both hands while being eaten because the thin crust would buckle under the weight of all the delightful toppings. From the crust that actually crunched like a cracker, to the crispy yet moist center where the cheese stretched with every bite and the tomato sauce oozed over the edge onto my face, each slice was a delight from start to finish, and there was always enough for us each to have two or three. In the early days, we would just get a 14-inch large pizza or get the 16-inch family size and have leftovers. But as time went on, we came to love the pizzas so much that we didn’t bother saving leftovers and would go ahead and eat ourselves in to a delightful stupor. With each pizza costing under $10 for my parents, the price was delightful too. What a perfect pairing of gluten and glutton that was!

     We were once loyal customers of Papa Murphy’s with a punch card that rewarded us with a free pizza when it was full, but last weekend, we had to accept reality and give our punch cards to my brother when he came home to visit. Papa Murphy’s does not have gluten-free pizzas and the gluten-free pizzas we have had just aren’t the same.

     On Friday July 20, just two days after my Celiac diagnosis, I was already hit with a pizza craving.

     “We can still have pizza,” my mom said, “we’ll just make it ourselves.” That night, she rolled out two pizza crusts from a Bob’s Red Mill kit. We all agreed it was too thick, doughy and dry. A couple weeks later, we tried putting toppings on pre-made crusts. I think they were from Schar. They were better in that they were thinner than Bob’s Red Mill, but still they seemed dry and doughy to me. The same was true of pizza I had at three local places that offer gluten-free pizza.

     I later found out that these pizza places don’t handcraft a gluten-free crust but throw their toppings on gluten-free crusts from companies like Schar as well. I don’t fault these restaurants for doing this. At this point in time at least, the Celiac population is still relatively small, so I suppose it would be impractical for these businesses to invest in the training and materials needed to make a gluten-free crust from scratch, and I suppose a hand-crafted crust would raise the risk of accidental cross-contamination. I liken it to the availability of Braille menus at restaurants. Since the blind population is also very small, very few restaurants offer braille menus, but when a restaurant does have one, I get a warm fuzzy feeling. This restaurant thought of people with special needs like me! I know I could read the menu online and decide on what to order before leaving home, but it is so exciting to be able to page through a menu with the rest of the family and read mouth-watering descriptions of their dishes rather than sitting with nothing to do while everyone else looks over the print menu. I get flustered when on occasion, I will place my order only to find out that the braille menu is out of date and the restaurant doesn’t offer that dish anymore. But once I recover and find something else, I don’t hold any hard feelings toward the restaurant. Ideally, it would be nice if they kept the braille menu up to date, but the blind population is so small I can understand how a restaurant just wouldn’t think of it, or maybe found it too impractical and expensive to update braille menus all the time for such a small market. It’s the thought that counts. Since a lot of places, including good old Papa Murphy’s, still don’t offer gluten-free options, I will gladly patronize pizza places that do have gluten-free options even if they aren’t spectacular, handcrafted creations because they thought of people with special needs like me! I would much rather eat a less than ideal pizza than live a life where I had to eat dinner at home before going to dinner with family or friends because restaurants didn’t have anything safe for people with Celiac to enjoy. Some people with Celiac have told me this was often the story of life even just five years ago.

     To be fair, there is still one more local pizza place yet to try, Transfer Pizzeria, which some friends I made in a celiac support group said is the best. It is kind of far from where we live so it hasn’t been convenient for us to get there yet, but I cannot wait to try it, especially when I found out that they get their crusts from Molly’s Gluten-free Bakery, a locally popular bakery about twenty minutes from our house that also supplies gluten-free items to stores and restaurants in our area. Their sandwich bread was the best I have had since going gluten-free, and their mint brownies are heavenly too, so I have high hopes for their pizza crusts. If we like the pizza we get at Transfer, we could go to Molly’s and buy their crusts to fill with our own toppings.

     We also have yet to test the truth of the advertising on a kit for Hodgson’s Mill pizza crusts that claims they come out light and crispy. We have a pizza crust recipe on a box of Betty Crocker gluten-free Bisquick we haven’t tried either, and I have high hopes for this crust too because it made the best banana bread I have ever had, including my life before Celiac, and it makes for excellent dipping batter that I never would have guessed was gluten-free. This has caused my parents and I to suspect that while many gluten-free product lines clearly taste gluten-free and cater to people who want to give up gluten for weight loss or a desire to go organic, Betty Crocker’s products must have been scientifically tested (and probably infused with chemicals, but oh well), to make them appealing to Celiacs and their families who are going gluten-free because they have to.

     I have an aunt who doesn’t have Celiac but goes gluten-free most of the time because she is sensitive to it. She has been a wonderful trail blazer giving Mom and I advice. She prefers thin pizza crusts too and told my mom to try rolling the pizza dough out on parchment paper instead of using a greased pan as the directions for these kits say. Mom found that when using the greased pan, she couldn’t get the dough thin because when she rolled it out, it would just spring back like a rubber band. But my aunt said this doesn’t happen with parchment paper so she can roll the dough thinner that way. And once the family comes to a consensus on the best type of flour for a gluten-free pizza crust, she wants to start making them from scratch.

     For now when we want a quick easy pizza, we turn to Udi’s. My parents bought two Udi’s frozen pizzas, an uncured pepperoni pizza, and a four-cheese pizza. Of course these pizzas lacked the delightful freshness and flavor of a fully loaded Papa Murphy’s pizza, but the crust crunched like a cracker! That’s a wonderful start!

     Although less important in the grand scheme of things, I look forward to the day when we–(or Papa Murphy’s? If you are an owner or CEO for Papa Murphy’s and you found this blog, I urge you to think about it)–get the confidence to make pizza crusts from scratch to resolve another disappointment our family has experienced with gluten-free pizza crusts. They don’t come in family size. The standard seems to be 12-inch crusts, the equivalent of a medium size pizza at Papa Murphy’s (and more expensive than the Papa Murphy’s family size too). This is just not enough for our family of big eaters. Of course we can and do make two pizzas which actually amounts to more pizza than the family size as two 12-inch pizzas means we can now indulge in 24 inches of pizza! But our oven can only cook one pizza at a time, so while we start on the first pizza, someone has to check the progress of the second one in the oven. And the presentation just isn’t the same either. We still go “Ah!” as each pizza is put on the table because it still smells wonderful, but 12-inch pizzas don’t cut beautiful masterpieces of slices that spread the entire width of a dinner plate. I can hold gluten-free pizza slices in one hand like a football, and even though we get more pizza, it seems like less because we have started using smaller plates. These skinny slices would look pitiful on a dinner plate. I don’t know why companies make gluten-free pizza crusts so small. Maybe it has something to do with the chemistry of gluten-free dough and the pizza may not hold together if it is too big, or more likely, most gluten-free clientele probably aren’t as gluttonous as I am. But whatever the reason, I have been dreaming of the day when I can enjoy the perfect gluten-free, family size pizza on a cracker-thin pizza crust that would make pizza nights a delite once again.

Remembering Trusty Rusty

I never could understand people who hate owning stuff once it gets old. I know someone for example who bought a beautiful fancy car, drove it for a few years and loved it, but then traded it in. There was absolutely nothing wrong with the car. This person just wanted it off his/her hands before it got old and things started going wrong with it, decreasing its value. It’s a free country, so I have nothing against this person’s decision. But to me, there is a certain special joy in owning something old. I am thinking about this in light of this past weekend when we traded in the minivan we drove for seven years.

     Except for some squeaking and rattling, it drove beautifully. In fact, just a few weeks ago, Mom and I took a trip to Virginia Beach with it. Dad wanted us to fly, fearing that our old car would give out on some treacherous mountain road in West Virginia, but Mom and I much prefer the pleasures of the open road over the inconveniences of airport security, luggage limits and flight delays, not to mention the outrageous costs of airfare and hidden fees that add up these days. There was a little more stress than we anticipated. When we drove through West Virginia, it was raining so hard that at one point, a state trooper was directing cars because part of the road had washed away and if you weren’t familiar with the area, you could drive right over the cliff! But that had nothing to do with the car. The car never once let us down!

     Because of this, part of us thought it would be fun to see how many more miles we could squeeze out of it, but the last time Mom went to get tires, she was told by the mechanic that this was the last time he would recommend putting it on the lift because the underbody had rusted. And on our trip to Virginia, I opened the glove box to get something for my mom and noticed that everything was wet. My sister’s husband said it was likely because some firewall that protects the glove box had also rusted. It was starting to get pretty squeaky and rattly too, so we realized it wouldn’t be too much longer before repairs would cost more than the car was worth. But because of the car’s amazing reliability for its age, even when we did some pretty rugged driving, my parents and I dubbed that car Trusty Rusty.

     Just like my parents, I would never buy a used car (or any other expensive appliance in my case). It is fun to experience appliances that are shiny and new after all, and of course when you buy a used item, you could be buying someone else’s problems too. But when your brand-new appliance gets old, I love how our family savors the joy of driving the old car until it is no longer practical, rather than rushing out to buy a new one.

     Sure, it is fun to touch the clean, shiny unblemished finish of a new car, but on the other hand, you love its shininess so much you cannot relax in it. You feel like you shouldn’t park too close to another car whose driver might fling the door open and put the first ding on the new car. With every new car, we have found ourselves hesitant to eat or drink in it and risk spilling something and putting that first stain in the shiny new carpet or seats. My parents didn’t want Gilbert to ride in our new minivan until they bought a pad for the floor that can be easily washed so that maybe the car won’t smell like him, at least for awhile. But when the car gets to be a Trusty Rusty, you relax and park anywhere. Once it’s starting to rust, a ding is no big deal. And once the car is rusted and dinged on the outside, a little spilled beverage or dog puke incident on the inside is no big deal either.

     Sure, it is fun to play with new features that weren’t available when you bought your last car. But once your car becomes a Trusty Rusty, you forget the frustration of trying to read the manual and figure out how the new features work. On Saturday for example, I took my first spin in our new minivan to the farmer’s market. All was going great until we got to the market, I opened my newfangled automatic door to get out, but when I pushed the button to close it, it just beeped at me and wouldn’t close. So for what seemed like forever, we sat in the car combing the manual, finally figuring out that for safety, it won’t respond if two people are pushing the button at the same time. At the same time I was pushing the button on my door, Dad was pushing it remotely from the front seat. When we couldn’t figure out how to cancel and start over, we collectively sighed and closed it manually, the Trusty Rusty way we had been doing our whole life. Sometimes I think driving around with a Trusty Rusty is less embarrassing than the first few days of a new car when we maybe could have been done buying our produce in the time it took us to figure out how to close the automatic door! But the good new is, since we parked far away from other cars, it is likely no one noticed.

     I love that distinctive new car smell, and it is fun to break in the new seats. But I am never sad when the seats are broken in and the car starts to smell like us; a mingling of Gilbert, and the meals we eventually give in and enjoy on that first roadtrip. When the seats feel unfamiliar and the car hasn’t smelled like us yet, I have always had a strange feeling like I am riding in someone else’s car. But by the time that car becomes a Trusty Rusty, it smells and feels like home.

     It is comforting to drive a car with the latest and greatest safety features, and while there hasn’t been much difference between Trusty Rusty and our new car in that regard, I remember how fun it was when I was younger and we lived on the edge for a while with a not-quite-as-trusty, and probably much rustier old car.

     In 1999 when my grandpa’s health had been failing for awhile and he could not drive anymore, Grandma gave us an old car of his. I think it was a 1984 Eagle, but our family affectionately referred to it as the Ghetto Cruiser. Sorry for the lack of political correctness, but the name was fitting. I don’t know what the car looked like of course, but it must have been pretty embarrassing since my teenage siblings forbid Dad to pick them up from extra curricular activities in it. And Dad said he never feared for his safety driving through bad neighborhoods in it because it blended right in. If by some strange chance someone stole it, it would not have been a hardship because in its condition, it wasn’t worth much.

     On the inside, I guess it was trusty in that it was reliable. I don’t ever remember hearing that it died on the side of the road. But I remember finding it strange when it was time to drive it back with us from Indiana, but both parents insisted I ride home with Mom in the minivan rather than with Dad in the new-to-me car. In fact now that I think about it, I only remember riding in it on short trips to school or the grocery store. I later learned there was a reason for that. I don’t understand car mechanics, but there was something wrong with it where if the car was driven too fast, it would bounce all over the road and it was all Dad could do to control it. He didn’t mind living on the edge and driving it on the freeway to work every day, or by himself to Indiana and back, but it wasn’t a risk he was comfortable taking with his precious children in the back.

     For awhile, Dad was even reluctant to allow Mom to drive it. Eventually, Mom convinced Dad she could handle it and he gave in and let her drive it a little bit. But I will never forget how before handing over the keys, Dad gave Mom a firm warning on the bouncing issue, and the importance of using pliers to turn on the windshield wipers, or else the car could catch fire!

     A couple years later, my parents decided that while the car had served us well as a cheap means of transportation across the city to work for Dad, they were getting tired of putting their lives at risk, so Dad sold it to a work buddy for $500 and bought an inexpensive, safe new car. But I don’t know if it was because I am blind and had no idea how awful the car looked, or just the fact that when you are little, Daddy is cool no matter what he drives, but I loved the distinctive old smell and feel of that car. Of course, being blind means I will never need to buy a car, but the nostalgia and laughs that still come to mind when I think of that car make me think that if I were sighted, I would be the kind of person that would get a thrill out of buying a brand-new car or procuring an old car from a trusted family member, and proudly driving it for twenty years to ghetto cruiser condition and beyond.

To the extent my parents put up with it, I already do this in a figurative sense with other things. I will continue to wear gym shoes, even when they have holes forming in the soles and are giving my feet blisters, until my parents notice and drag me kicking and screaming to the shoe store. Just like with the seats in a new car, I feel like I am wearing shoes meant for someone else until I break them in. Unlike most people, I have always brushed my teeth with my mouth closed. (Maybe I was traumatized from gagging on toothpaste that slid to the back of my throat or something when I was really little.) Anyway, this quirk means that as it is, my toothbrushes get worn out faster than they do for normal people. With my mouth closed, I cannot help chewing on the bristles until they are all bent. But bent bristles never bothered me. I only get a new toothbrush when Mom happens to see it on the counter if I forget to put it away and says “You need a new toothbrush,” as she simultaneously chucks it in to the garbage can, allowing no opportunities for argument. That new toothbrush never feels right the first week or two.

I am still running JAWS 9.0–I think the rest of the blind world is up to version 13 now–and an outdated version of internet explorer on what people these days would call a Trusty Rusty four-year-old computer. I often get pop-up alerts that I would have a better web experience if I upgraded my browser, and some sites I cannot access at all. But I don’t want to upgrade! For one thing, the few times I have attempted upgrades, the upgrade process never went smoothly. I have tried several times to upgrade my brailleNote from keysoft 9.0 to version 9.1 and 9.2, but every time, I am told the installation failed, despite doing EXACTLY what the directions said! The last time I attempted and failed last Sunday, I decided I am not wasting another minute of my life on something that always ends in defeat and frustration. Some of the features available with the upgrade would be awesome, I admit. Supposedly, Keysoft 9.1 could recognize files with the .docx extension and version 9.2 can convert PDF files. It sure would be wonderful to have these features on my BrailleNote rather than having to use JAWS to read these files. But unless I happen to meet someone with a magic touch who can do the upgrade successfully, I would rather be stuck in 2003 with .doc files than waste any more time being frustrated. Who really needs the newfangled features anyway when the old ones work just fine? And with my luck being so bad just upgrading my simple blind-friendly BrailleNote, there is no way I am attempting an upgrade on the much more complex desktop computer. And don’t even get me started on how much I hate Windows 7 which my college upgraded to my senior year. Maybe it has some cool features for sighted people, but for me, it made processes that were once simple, such as opening e-mail attachments and saving documents, much more complicated. Every time I had to work on an assignment at school, I came home with a renewed commitment to take extra good care of my Trusty Rusty, easy-to-use Windows XP, so I can put off upgrading as long as possible.

     But the best example of my loyalty to old appliances is my first treadmill. In eighth grade, I wasn’t very diligent about healthy eating, but I was at least trying to take better care of myself by exercising more regularly. When my parents noticed me doing jumping jacks or marching in place every day, they got me an inexpensive treadmill for Christmas which I loved.

One day the summer after my sophomore year, the part of the emergency stop pin that hooks to me broke. My parents and I had no idea if or how it could be replaced. Mom thought about improvising with duct tape, but I assured her I would be careful and that this wouldn’t be necessary. I kept my word and never once fell. Then one day during my junior year of college, my dad came down to the basement to do something else and came up concerned because he saw the treadmill belt slowly moving even though I wasn’t on it. This wasn’t news to me though. It had been doing that for awhile. I don’t remember exactly when, but one day I remember finishing my workout, unplugging the other end of the pin (there was an actual stop button too, but on that treadmill the pin was easier and safer for me to find), taking my shoes off and then casually plugging the pin back in for the next day as I always had. With my workout done, my guard was down and I wasn’t holding on when the motor started humming and the belt started moving slowly. Fortunately I have excellent reflexes and I grabbed the handle before I fell. I knew if I told my parents that in addition to the broken safety pin, the treadmill had started moving when it wasn’t supposed to be, they would freak out and I didn’t want to get rid of a treadmill that was just starting to have a few quirks but “drove” just fine. So I just quietly adapted. Instead of plugging the pin in to have it ready for the next day right away, I would either drape it over the handle, or hold the pin while I took my shoes off and then plug it back in once I was safely off the treadmill. Either way, I would make sure that at least one hand was holding on to a handlebar at all times until both feet were safely off the treadmill.

On the days I draped it over the handle, I would have to remember to be careful the next day because the belt would sometimes, but not always, jerk to life before I set a speed. Even though the speed lever was on zero, I was always able to stop the belt by calmly pulling down on the lever. Since it didn’t happen every day, the start of each treadmill walk was suspenseful. On the days when the motor started humming before I was ready, I would just hold on tight and pray, then laugh about how much fun unpredictable old appliances are once I was safely walking.

Once Dad found out the treadmill was doing that, he went treadmill shopping right away and both parents gave me a firm “be careful!” as I headed downstairs to work out on the old treadmill until the new one could be delivered.

I have had my “new” treadmill, complete with a new intact safety pin for a year and a half. I don’t mourn the old treadmill because for one thing, I love the new features of this one like the ability to set an incline for even better workouts, and nice big blind-friendly buttons for setting speed so I know exactly what speed I am walking. (If Mom or Dad set my speed on the old treadmill, they could see the speed the lever was set to on a print display, but when I set it myself, it was less scientific. I would just gently push the lever up until I liked the pace.) But more importantly, I have had it long enough that it feels like home now, and it won’t be long until the minivan will too. And the way the years seem to fly by, it won’t be long before my family and I will get to relish the joys and advantages of owning a Trusty Rusty once again.

Some Necessary Perspective on Celiac Disease and Life

Well readers, there is so much more I want to write about eventually regarding my new Celiac Disease diagnosis mentioned in the previous post. Navigating this river has been an interesting journey, complete with wonderful experiences, funny moments, unexpected surprises, and so far only one melt-down. But for this post, I thought I would take a break from feeling sorry for myself to talk about people recently who have found themselves in a sandbar so awful that it almost makes me ashamed to be mournful about my Celiac diagnosis. There are in fact things that are much, much worse. Like going out for what you anticipate to be a fun date, the midnight opening of another Batman movie, never imagining that you or your partner wouldn’t leave that theater alive. Or being a family just going to their usual worship service on a peaceful Sunday, perhaps thinking that after worship, they would enjoy dinner on the grill or a walk in a park, but instead finding themselves in a hospital in critical condition, or planning a funeral for the senseless death of a loved one.

     The movie theater shooting in Aurora, Colorado happened two days after my Celiac diagnosis. Mom had Good Morning America on and told me about it when I came downstairs, but I was so self-absorbed in getting used to eating gluten-free bagels which have a different texture than “regular” bagels and realizing once more that this whole Celiac thing wasn’t a dream–it was my reality, for the rest of my life–that I didn’t grasp the magnitude of this shooting until the evening news. As I was watching the evening news, I decided that I would make it a point to keep things in perspective and ensure that my conscience never got wrapped up in such trivial roadblocks, which Celiac really is in the grand scheme of life. I never imagined I would have to put this in to practice so soon, that another senseless shooting would hit so close to home (Oak Creek is just a half hour drive from where I live), or that in America in the year 2012, people were still being targeted because of their religion. But from that day forward, I have found myself savoring the not-quite-as-tasty gluten-free bread when I realized that just across town, there were nine families who would likely give anything for a life where Celiac Disease was their only source of hardship.

     It is only by the grace of God that you or I have never, and hopefully will never face such a tragic, senseless sandbar. My mom and I had just gotten back from worship ourselves when we heard about the shooting at the Sikh Temple. As if there was no doubt that our worship would be peaceful and safe and we would get home alive, we made plans that morning to throw sausages and vegetables on the grill and enjoy a beautiful Sunday at home as a family. Those Sikh families across town were probably just as casual as we were in making Sunday afternoon plans. In America, houses of worship are sacred and safe, after all. At our church, nothing happened and we returned home as always and put our sausages on the grill as we watched the local news coverage. But just across town, a whole faith community never got to enjoy that Sunday afternoon, and six families will never get another Sunday afternoon with their loved ones again. The Sikh people may speak a different language and have different beliefs, but when you get right down to it, they are no different than Christians. Their faith teaches love, compassion, service to those in need, virtues that Christianity emphasizes as well. They just happened to be in the wrong place at the wrong time. What’s to say next time, it won’t be us?

     These recent shootings also reminded me of an incident in college I had put out of my mind but will never forget. One day in the spring semester of my freshman year of college, I walked in to another Introduction to News Writing class, as I had done every Monday and Thursday at 4:00 all semester. Nothing had ever happened in all my years of school, so I am sure as I waited for the professor to start class, my mind was wandering to what we would have for dinner that evening and what evening homework I needed to do. But that day, a troubled student got in to an argument with the professor in front of the class. Since she was causing a scene and a guest speaker was expected shortly, the student was asked to wait until after class to continue the argument. I didn’t hear it because I didn’t sit near the student, but the next time our class met, campus security was standing outside the door. Another student sitting near this troubled student reported to the professor that this student had muttered under their breath, “this is how things like Virginia Tech happen.”

     Fortunately, another Virginia Tech didn’t happen in that news writing class. I don’t know how the situation was ultimately resolved with this student. This student never came to class again, nor have I heard anything about this student since. But even though nothing happened, it was an incident I will never forget because something could have. It is so easy to think that nothing could ever happen at my warm friendly college/church/theater/community, but unfortunately as long as there are guns everywhere and troubled people in the world not getting the help they need, Virginia Tech/the Sikh Temple/the Aurora, Colorado theater shootings could happen anywhere.

     As is always the case, time will pass, and as it does, the memory of these recent shootings will fade, at least for those of us who don’t know any of the victims. But I hope that say, a year from now if I find myself stuck in a restaurant with no gluten-free options, that instead of sobbing because I am tired and hungry and the restaurant isn’t accommodating, I might think back to these shootings, hug any loved ones at the table with me and realize there are much worse things to be sobbing about.

River Gets Rough Already

Well readers, just one week after college graduation, a time when I saw no hints of storms on the horizon, the river called life hit an unexpected rough patch.

     My master plan had gone off perfectly so far. The graduation festivities were beautiful. The delicious leftovers were almost gone and Mom and I had driven Granny safely back home to Indiana. All that was left was some blood tests ordered by my primary physician and my pediatric endocrinologist. The plan was that the doctors would quickly glance over my blood tests and then send me on my merry way in to the adult world with a clean bill of health. My pituitary problems that resulted from my brain tumor were well-managed, and although I hadn’t been making the healthiest eating choices amidst the stress of finishing college, I was still thin and even amidst stress, made far healthier choices than I did in high school. Given that, and just the fact that every other facet of my master plan had gone off without a hitch, I just didn’t expect this plan to go off script. But it did.

     So on Wednesday May 23, just as I was finishing my breakfast and settling in to another lazy worry-free day, the phone rang. It was my physician who noticed that my liver enzymes were slightly elevated, and that I was anemic. I wasn’t surprised or concerned about the anemia. The summer after second grade when I had a big growth spurt and basically wouldn’t eat anything healthy, I became severely anemic to the point where I could barely function. I was sleepy all the time, had no appetite and when I started third grade, I was so skinny it frightened the teachers. With some medication adjustments and force-feeding, I returned to a healthy weight and felt well again. I don’t remember hearing anything more about my iron levels for years. Maybe it wasn’t tested or maybe it was tested and reported on my medical charts, but since I felt well and was gradually eating a much more balanced diet by middle school, nobody felt it was worth mentioning to me. Then in the fall of my sophomore year of college, the glands in my neck swelled up and got really painful seemingly overnight which had never happened to me before, so my parents wanted to get me to the doctor right away. But my primary physician wasn’t available, so the receptionist set me up with a different doctor in the same building. This doctor was amazingly thorough. In addition to the usual look at my throat and feeling of my glands, he also ordered a blood test to check for Mono, and iron I guess too, because he called me personally later that afternoon and told me I was mildly anemic. Like I said, by then I was feeling great and eating a very healthy diet, so I just made an effort to eat more high-iron foods like beef and spinach and didn’t think anything of it. Maybe I was just prone to being a little anemic.

     But elevated liver enzymes? That was a new one. How could I have liver problems? I tried one sip of whine, at my brother’s insistence shortly after my 21st birthday, but it was so disgusting I spit most of it out. I don’t abuse painkillers either. Those were the only things I knew of that can cause liver problems. In a panic, Mom and I consulted the internet, but couldn’t find anything reliable or applicable to me so we decided it would be better to wait for the results of some more detailed bloodwork and a liver ultrasound ordered by the doctor. So Mom immediately scheduled an ultrasound for June 6, and took me in for the additional tests.

     Then like clockwork on June 5, just after finishing breakfast, the phone rang again.

     “Your blood results show indications of Celiac disease,” the doctor said, “It is a disease where your body cannot tolerate gluten, which just means you will have to give up wheat.”

     She is a young and very compassionate doctor, and perhaps in an effort to soften the blow, she said “There are lots of foods that are gluten-free. I think even Snickers bars are gluten-free.” I laughed politely, because I do love snickers bars, but still my heart sank, and I apologize if it sounds overly dramatic, but I will be honest and say I felt my gluten abundant life flash before my eyes. What would become of our Christmas cookies, my dad’s quiche, my mom’s family-famous fluffy waffles, my double-layer chocolate birthday cake I look forward to all year, our Friday night pizzas, our comforting lunches of grilled cheese sandwiches or macaroni and cheese?

     Mom and I had decided to have this conversation on speaker phone, and I will always carry with me the image of us sitting side by side on the couch with the phone between us. When she saw my expression fall, she tapped me on the shoulder and whispered enthusiastically “that’ll be so easy!”

     “Yeah right,” I wanted to say, “don’t you realize how central a role bread products play in our family?”

     “I worked with a lady who was gluten-free, and she brought the most fabulous cakes to work,” Mom said when she got off the phone.

     “That’s great. But I cannot live on Snickers bars and cake. What are we going to do for actual meals?”

     “There are all kinds of gluten-free breads and pastas made with other kinds of flour like rice and corn. And, some of your favorite meals like steak and baked potatoes? Naturally gluten-free!”

     This is true. In my shock and panic, I overreacted and interpreted the diagnosis to mean I would never be able to eat anything delicious again, but when I found out I could still eat steak, a baked potato loaded with butter, sour cream, salt and pepper or even my dad’s amazing spicy spaghetti sauce over gluten-free noodles, I started to feel better. Maybe Mom was right and it would be easy.

     And then I found some more information on websites for Mayo Clinic and the Celiac Foundation that had my heart sinking again. To start with, going gluten-free wasn’t as simple as just giving up the obvious wheat products like bread and pasta. Other grains like barley and rye also contain gluten, and products like sauces and salad dressings that don’t taste as if they would have gluten in them could be thickened with wheat. Some companies are transparent about gluten in their products, but others disguise it. In a Betty Crocker book on how to get started with a gluten-free diet, there is a huge list of unpronounceable additives that contain gluten. But the real kicker was when I learned that even trace amounts of gluten can be harmful, so people with Celiac even have to watch out for cross-contamination, meaning that if even a crumb of wheat touches a gluten-free item, it is no longer safe for people with Celiac to eat. In practical terms, this means that those warnings on food packages for items which seem like they would be gluten-free like Quaker oats which say “processed in a facility that also processes wheat,” must also be avoided by people with Celiac. And gone would be the days when I could just walk in to a restaurant and order anything I wanted. Fortunately, more and more restaurants offer gluten-free options these days, but people with Celiac are advised not to blindly trust even these items, because if the staff in the kitchen handles your chicken with the same gloves used to prepare bread items, your gluten-free meal has now been contaminated. And let’s say a restaurant says their caesar salad is gluten-free so long as you order it with no croutons. If the restaurant makes a mistake and brings your salad with croutons on top, people with Celiac cannot just pick off the croutons because it is impossible to remove every last trace of crouton crumbs. People with Celiac are supposed to send the salad back and ask for a fresh salad without croutons. Since customers aren’t allowed back in the kitchen to oversee preparation, people with Celiac are supposed to ask to speak with the manager or chef, inform them that they have Celiac and explain how food must be prepared. Actually, the most polite thing to do is plan ahead and call the restaurant to give them a heads up and find out if they can accommodate you, and try to go to the restaurant at a slower time of day.

     I wanted to cry as it occurred to me that (a) our family, especially my dad and grandma, loves to go out to eat on weekends, the busiest time; (b) sometimes we plan ahead, but other times, my parents like to just drive around and pick new places to try spur of the moment; (c) most of our family  likes to keep our order simple, and we get all embarrassed just when my sister with no dietary restrictions makes a complicated order with substitutes and everything. Dietary restrictions which would require the manager coming out to talk to me would be far worse. And (d), we have all watched too many of those “dirty secrets of restaurants” shows where waiters admit spitting in people’s food when they send it back, and as a result, we never, ever, send food back. Well, my dad has once or twice, but when he did, I remember us all getting nervous and giving him a “what are you thinking?” lecture. And let’s say I ever got in a situation where a restaurant doesn’t like dogs but has to grudgingly serve Gilbert and me because of the ADA laws, AND at the same restaurant I also have to send back a contaminated salad. That could be the perfect recipe for spit (or worse) in my food.

     Did I also mention that this disease is about more than just a little stomach upset (which I never had by the way)? I had more subtle symptoms like frequent headaches and fatigue which I always overlooked. In people with Celiac, gluten destroys the villi which are the carpet-like fibers in the small intestine that absorb nutrients from the food we eat. The only treatment is a gluten-free diet for life. Left untreated, Celiac can lead to liver damage (which I was just beginning to have), and scarier stuff like cancer. If you follow a strict gluten-free diet for life, all sources said the small intestine would heal, but if you stray, even on Christmas, your birthday, your wedding day, damage begins again. I have even heard that after being gluten-free, the body overreacts to gluten, so one speck of gluten can set the healing back three months or more. I remember logging off the internet and coming out of my room somberly for a drink of water, sure that the carefree life I had been so looking forward to after graduation would be hellish now.

     But unbeknownst to me, while I was upstairs researching with my computer, Mom was downstairs doing research of her own. That’s when she found out that Celiac runs in families! I won’t get in to the details, but she said that her and Dad, my siblings and two of my aunts had the classic symptoms. Even if they got tested and didn’t officially have Celiac, my parents both promised they would go gluten-free with me because even if gluten hasn’t caused damage for them, they are definitely sensitive to it. And there was a high probability that other members of the family would test positive for Celiac as well, so by us going gluten-free, we could be a positive influence for the rest of the family. Even if they weren’t sensitive, it warmed my heart when they said they would go gluten-free anyway because we are a family and families suffer together. But since they are sensitive, that was a moot point. Although it didn’t eliminate my anxiety about future social situations, not by a long shot, you cannot imagine the euphoria of finding out you won’t be navigating these rough uncharted waters alone.

     Even so, I wasn’t eager to go gluten-free immediately. The good news was the doctor said I should still enjoy my glorious gluten (well, those weren’t her exact words but that’s how I interpreted them), until I saw a gastroenterologist who knew more about celiac and could do a more definitive test, a biopsy of my small intestine, the only way to diagnose Celiac with absolute certainty.

     The soonest my mom could get me in to a specialist was July 18, but I thought I might still be able to eat gluten even after that because the biopsy is a procedure that involves sedation, not like a blood test that can be done same-day. (If I had been allowed to schedule the appointment, I would have gone with the doctor who couldn’t see me until September). But instead of the carefree blogging I had intended to do, I found myself spending the next six weeks obsessively reading up on Celiac disease, perusing blogs and Facebook pages for information and coping advice, and of course saying yes to gluten every chance I got. I am sure I gained weight those six weeks as I loaded up on ice cream cones, ravioli, Papa Murphy’s pizza (at my insistence even when it was way too hot to be using the oven), as well as items I loved but wasn’t sure about like my favorite caesar salad dressing and store bought guacamole. In my paranoia, I was sure I would find out that everything I loved had gluten lurking in it.

     All too soon, it was July 18, and I had a foreboding feeling that I was sitting down to my last piece of peanut butter toast made with oat nut bread, and I was right.

     The doctor’s first words when she entered the exam room were “you definitely have Celiac. We looked at your blood tests and there is no question.” I guess there is some antibody that my physician didn’t know as much about that confirms Celiac if it is elevated and my levels were off the charts. She still wanted to do a biopsy to see how much damage had been done, but when we asked if we should wait and have the biopsy before going gluten-free, she basically said “are you crazy? No, you should start going gluten-free now.”

     At my insistence, Mom and I went to Chipotle after the doctor’s appointment where for my last gluten meal, I ordered one of their amazing burritos, made on a flour tortilla of course. It was the one thing I hadn’t had the chance to get one more time in that six-week period. When we got home, I savored a Blue Bunny ice cream cone, and dug out one more of my sister’s fantastic chocolate chip cookies which she made for my graduation. And then it was time to resign myself to the necessity of leaving the familiar river I loved and accept the newer, healthier route.