Archive for March, 2013

My First Gluten Free Birthday

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

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

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

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

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

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

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

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

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Taking a Leap of Faith

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

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

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

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

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

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

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

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

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

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

Back in the Game

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

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

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

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

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

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

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

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