Sunday, August 25, 2013

Grateful Sunday

On this Sunday I am grateful for the late writer M. Scott Peck.  One of the concepts that I refer to often is from his book The Road Less Traveled. The concept of discipline described below can be used to solve many of life’s problems.  I use this tool kit often in my life and highly recommend it to everyone. He describes life as being a  ”series of problems to be solved.”

Tools of Discipline
  1. Delaying Gratification: Sacrificing present comfort for future gains.  (Also known as Patience.)
  2. Acceptance of Responsibility: Accepting responsibility for one's own decisions.
  3. Dedication to Truth: Honesty, both in word and deed.
  4. Balancing and Bracketing: Handling conflicting requirements. Scott Peck talks of an important skill to prioritize between different requirements -- bracketing.

Read more of this book by renting it from your local library or purchasing a copy through, which donates a portion of sales to CCA when you set up an account & select CCA.

Friday, August 23, 2013

Friday Remix: Hospitals of the Future

Part of living with many craniofacial conditions is scheduling, having, and recovering from surgery. Hospitals are certainly not the most welcoming places, but can we change that?

NXT Health says we can!

Take a look at this article from Good Magazine (by Dave Ruthven) and NXT Health. I've pasted an excerpt from the article below:

The automotive, entertainment, food and beverage, and retail industries work tirelessly to craft user-centric experiences, so why does an industry with so much invested in it (17.9 percent of the U.S.’s total GDP), and so much advanced technology (see doctor robots) have so much trouble with customer relations?

The answer is complicated. In all fairness, healthcare providers are at somewhat of a disadvantage. None of the aforementioned industries have to cater to a user group that is simultaneously going through physical discomfort and life-altering emotional turmoil. Throw in managing family interpersonal relations, an ambiguous payment process, and a constantly changing regulatory landscape, and you have a recipe for disaster. To further complicate matters, your services are so vital to the community that you can never shut down to retool anything, so you must build on top of existing inadequacies with Band-Aid, quick fix solutions. Under this collective pressure, it is no surprise that healthcare has had trouble evolving to match the increasing demands of a more connected and informed 21st Century consumer.

The end result is Patient Room 2020, a design that is not afraid to take chances, but is also grounded in functionalism and tied to solving real world challenges facing modern healthcare organizations, such as infection control, patient/family engagement and optimizing caregiver efficacy. The prototype installation at the DuPont™ Corian® Design Studio in New York features many innovative concepts that were generated during the collaborative process, including a sink that illuminates to encourage staff handwashing, a technologically enhanced overbed table that gives patients a bedside control center, and a bathroom that has the ability to morph into numerous configurations based on user needs.

The article contains more information and photos of what the hospital experience of the future could look like. I for one certainly hope that hospitals do start upgrading and expanding their services to truly meet the needs of patients and the next time I have to have a procedure, I would happily test drive the Patient Room 2020!

Sunday, August 11, 2013

Grateful Sunday

This summer is the first summer we've participated in a CSA - Community Sponsored Agriculture. A local farm supplies "shares" of vegetables they've harvested over a number of weeks for a set price.

The veggies differ every week from whatever the farm is producing. So, every week on Thursday afternoon I hop in my car to pick up my CSA. It's one of the highlights of my week. It's like getting a fresh, gorgeous bouquet when I pick up my little white boxes brimming over with red tomatoes, green cucumbers, yellow squash and even purple bell peppers!

Three Peppers & Onions

Getting this share was an experiment for us, but we have found it's actually helped us save on our grocery bill substantially -- we start from scratch and use all we can -- and it's forced us to be creative in the kitchen. I never would have purchased an eggplant before, but this summer alone I've had over a dozen eggplants come in my share, so I've made baba ganoush, eggplant ragout, and something else eggplant that wasn't quite successful.

Blueberries & Blackberries

This Sunday, I'm grateful to have the opportunity to eat delicious, healthy, local food. I feel more connected to my food and truly appreciative of the process by which it comes to me. I enjoy tasting the season and a true joy of cooking has taken over our house!

Home Fries from Local Potatoes

Happy Sunday,

Thursday, August 8, 2013

Summer Reading List: Dede

I've recently read two books that were written by women living with a facial difference.  As the parent of a craniofacial child, I enjoyed the first-hand perspectives these authors so bravely shared.  Both authors have lived with their facial difference since birth, and these were first books for both women.

Emma C. Williams wrote her debut novel in a fictional format for young adults.  The story is about a teen girl coming of age and living with a chronic and physically noticeable difference.  Williams says that she chose to write for young people because they are "at the time of their life when books had the most profound effect on her own."  She has Goldenhar Syndrome and grew up experiencing what our own CCA Kids deal with throughout their lives:  clinic appointments, surgeries, stares, missing school, and insecurity over their appearance.

I loved the insights this book provided from Anna, the main character's, perspective.  For example, what it's really like to be poked and prodded by a bunch of medical students when you are a teenage girl half unclothed in an exam room.  Or, when dating, how you wrestle with judging someone else by their physical attraction when you live with a noticeable difference yourself.  Is that too hypocritical?  Anna's best friend is compassionate but also remarkably honest when necessary, which provides for some intriguing conversations about acceptance from the viewpoints of teenage girls.

This is a wonderful story that, to my knowledge, has never been available for CCA teen girls.  Overall, the book is an easy read that is reminiscent of a Judy Blume book with a touch of Wonder by R.J. Palacio.  I recommend that a parent read the book first to make sure it is age appropriate (ages 13+ would be my recommendation).  I think the story offers great opportunities for CCA mother/daughter conversations about difficult topics like dating, self esteem, growing up, surgery/medical decisions, and the fears of being alone.  If you are a CCA parent with a daughter in the 13+ age range, I highly recommend checking it out.

For more information about Emma C. Williams, you can visit her website where she also blogs as Anna Jones who is the fictional character from the book.

Facing Up to It by Dawn Shaw
"One woman's transformational journey from craving acceptance to accepting herself"

Dawn Shaw was born with a fast-growing tumor on her face that had to be removed shortly after birth.  Removing the tumor leaves one side of her face paralyzed and disfigured despite numerous attempts at reconstruction.  Facing Up to It is her autobiography from birth to adult-- including some topics that parents should preview before giving it to their teenager or young adult.  The book would benefit from some editing as some parts toward the end go on a bit too long.  Nevertheless, I enjoyed Dawn's story and admire her courage to so openly share all the "skeletons in her closet".  Any parent of a child living with a facial difference, especially a teen or young adult, will find words of wisdom and helpful insights that can only come from such first-hand experience.

For more information about the book and Dawn Shaw, you can visit her website at Facing Up to It.

One theme I appreciated from both of these authors is the positive and empowering impact their parents made in helping them to become successful adults.  Although the Emma C Williams book is fiction, I'm taking a leap that the parenting aspects of the story (as well as other parts) are somewhat autobiographical.  

It is refreshing to see people with facial differences making such powerful contributions to the world of literature, which I believe helps to bring about increased awareness and acceptance-- something we can all benefit from!

Sunday, August 4, 2013

Grateful Sunday: Grateful for hearing aids

Grateful for hearing aids... 

I've had hearing aids since I was 5 years old. I remember the first time I tried it on. All of sudden, I could hear these sounds that I had never heard before. I was so excited! Everything was multiplied. It was like opening a door to brand new world; the ‘hearing world.’

However, there were still times where I found myself struggling. I couldn't hear as well as my friends and I always had trouble following conversations in a restaurant or at a party. I often got tired of asking people to speak up or repeat what they said. It made me realize that even with hearing aids, I would still have challenges. I would never completely fit in with the ‘hearing world’ no matter how much I tried.    

This past year was tough and unpredictable. In November, the ear mold in my right ear gave me a skin infection. It got so painful that I had to stop my wearing my hearing aid for a while. Then in January, my hearing aids kept squealing (feedback noise) and eventually, they broke. The temporary hearing aids that I was given were horrible. I couldn't hear my own voice when I talked! And everyone else around me sounded like they were underwater. A few weeks later, I had to give a presentation in class. Since I am terrified of oral presentations; not being able to hear myself, made it even scarier! I had to learn to adjust my voice at the right level, which took a lot of practice. I had to ask my friends “am I speaking too loud? Too low? How do I sound?” It was tough relying on others, but luckily I had close friends who supported me and helped me through it. Despite the tough circumstances, I was still able to give a great presentation! My professor and classmates told me that I spoke very well; professional and articulate!  

It can be exhausting to re-adapt to new hearing aids over and over again. I am now on my 3rd pair of hearing aids this year. They are not perfect, but then again... there is no such thing as a perfect hearing aid. What I realized this past year is that I should be grateful for hearing aids, no matter what. Even though they might cause a lot of trouble, I am still grateful for this device that helps me to hear and communicate verbally with others. I am also especially grateful that I can listen to music! Whenever my hearing aids are giving me a hard time, I try to calm down, take a deep breath and tell myself “at least you CAN hear, even if it’s just a little. No matter what the situation is, it could always be worse. So be grateful for the sounds that you can hear and take it one day at a time.” 


Thursday, August 1, 2013

Freshman 5: (my) Top Tips for Succeeding in College

You may have heard of the dreaded "Freshman 15" -- yeah, it happens when make dining hall froyo a daily indulgence -- but I offer the Freshman 5: (my) Top Tips for Succeeding in College.

Being a little nerdy, I like to keep lists of life tips, but after assisting with new student orientations all summer, I decided to actually write down a list of the best lessons I've learned while getting my Bachelor's (check), Master's (three more classes), and working on a college campus. 

So here's the list of my top tricks for getting ahead while getting your degree:

1. Time yourself and learn how long it takes you do things. 

First things first: you need to learn straight away how long it takes you to get from one building to another: on a sunny day; with headphones in; if you stop for coffee; or if it's raining. Time yourself! Wear a watch or use the timer function on your smartphone. Having accurate counts of how long it takes you to do certain tasks helps you be more efficient, do more things, and manage your new-found freedom wisely. 

Even more importantly, you also need to time how long it takes you to answer a discussion question, read a packet of articles versus reading a book chapter, and how long it takes you decompress each evening before hitting the hay. (Insomnia is no fun, so be prepared to adjust to college hours where they often start club meetings at 10pm!) Timing tasks is perhaps my most often-given piece of advice to anyone: When you know how long it (honestly, truthfully) takes you do to tasks, you are more efficient. It also helps you schedule down time, which is essential when dealing with the pressures and stress of deadlines, expectations, and new challenges.

2. Learn to find answers for yourself. 

At colleges, there are a million people to help you do everything from register for classes to practice mock interviews. However, just because colleges are spending your tuition dollars on hiring helpful faces, doesn't mean you shouldn't learn to find answers on your own. Attempt to make your own schedule, then have your advisor review it. Don't call the departmental receptionist to ask for your Professor's email (or name, eek!) -- look it up on the website directory. If you're stumped on a math problem at 3am, don't give up -- at least watch a Khan Academy video and see if you gain any understanding when the material is presented differently before hitting "Send" on that desperate email to the math lab TA demanding help.

That said, after you've attempted to find the answer yourself, use the help provided you! From my experience, most of the folks who work in academia are inspired by students and love their energy. We genuinely like to see students succeed for the warm fuzzies it brings. By all means, utilize the resources you pay for and meet the staff who can help ensure your success... which leads to #3.

3. From Day One, start developing your network and making friends. 

Some 7 years after my college graduation, am I finally realizing how important the network I made in college is to me now. I made connections with peers my age, a few years older in graduate programs, and with professionals during my time as an undergrad. Through the magic of Facebook, I now see those connections experiencing wild successes from publishing books to being featured on national news! I am so happy for them and when they offer advice, I listen. Keep in touch with these people and be a good friend. Don't just collect names and business cards; really invest in a manageable amount of friendships and working relationships. In today's economy and business environment, a group project classmate who remembers your work ethic and pleasant disposition could be the most valuable thing you gain from college (but definitely not the only thing!).

4. Read widely. 

This is advice for life! Read what your instructors assign (and learn when to simply skim it) but also read what the opposition says. Read dissenting arguments and contemporary research, read what different voices say on the matter, and keep a file of your favorite scholarly articles that relate to your field. I still have a purple file folder in my garage of some of the most relevant articles I picked up in college and yes, I occasionally refer to it to pull out an author's name or quote. Having this knowledge not only makes class discussions richer and more enjoyable, but it also begins to establishes you in your chosen industry. Even a few years after graduation, you'll be able to say that you have been "following the literature" for nearly a decade. Being relevant and knowledgeable is critical to success in your field. 

5. Find an easy, comfortable, "go-to" outfit that looks professional and put-together - and wear it often!

College is the only time you get to run around interacting with professionals in PJs. Enjoy this time, but don't abuse it. Professors respect students who look awake and engaged in their classes, and it's okay to cheat a little on this tip: a comfortable pair of black leggings, ankle boots, and an oversized button-up shirt are just as comfy as sweatpants, but look a million times better! Invest in a khaki blazer -- preferably one with elbow patches -- and wear it over a solid t-shirt and jeans and flats. A jersey dress with sandals (and that same blazer) feels like a nightgown, but worn with a wisp of mascara and stud earrings, looks instantly polished. Image isn't everything, but college is the time where you get to determine your style. Experiment with looks, but remember: Dress for the job you want, not the one you have. 

... So do you have any life tips to add?