Jan 23, 2014

book review // ghost boy

Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body
by Martin Pistorius

Ghost Boy is an autobiography of the extraordinary life of Martin Pistorius,  a misdiagnosed young man trapped in his own body. It is a tale of courage, hope, and freedom, yet does not shy away from the despair and passivity that riddled his younger years.

On a fateful day in South Africa in 1988, twelve-year old Martin had a simple sore throat that quickly degenerated into a mysterious neurologic disorder causing Martin to be a mute quadriplegic. For several years, he was a hollow shell, unknowing and unresponsive. He was thought to be in a vegetative state that would carry on until death.

And then he woke up.

His mind became clearer yet he was trapped in a body that would not listen to his commands. He was spastic when he wanted to be still and still when he wanted to move. He understood all that was going on him, at a much deeper level than anyone dared hope, yet no one knew that his mind, emotions, desires, and fears were intact for ten excruciating years.  He was just as emotionally wrought over history-altering events [such as Princess Diana's death in 1997] that others where.

He was victim to abusive caretakers and could sense when people spoke to him as if they spoke to a wall. He was dealt with roughly, being thrown into chairs and left undressed in the cold room because careless and heartless workers assumed he was worthless. "Do they really think that a limited intellect means a child can't feel viciousness in a person's touch or hear anger in the tone of their voice?" [p.43]

He was aware just as you and I would be of our surroundings, yet he was powerless to communicate any of this because everyone around him had placed him in a box. Mute. Vegetable. Unresponsive. These labels imprisoned him because no one took time to see the life in his eyes; they merely saw the box they had placed him in [p.17].  He fell into bouts of anxiety and depression as he wondered if he would ever be loved or understood. His life was passive and torturing monotony, devoid of hope. A caged bird with no song to sing.

He was a ghost boy.

And then, miraculously, a caretaker named Virna started realizing that he would make facial gestures in response to her compassionate dialogue. She was the first person to talk to him rather than about him, "making me feel like something other than the repulsive creature I know I am" [p.53]. She believed in him and urged others to believe as well. Soon after, he underwent testing to evaluate his ability to use switches and computer programs to communicate. More than one year later, he finally started using personalized communication devices to slowly gain the ability to communicate and life independent of others, a far cry from his early years as a completely depended teenager due to his medical condition.

Over the next years, Martin grew in his understanding of the communication software, and was eventually able to hold conversations with people through voice-activated software, emailing, and alphabet boards.  Simple requests or statements such as "I'm hungry" became his "personal Mount Everests" [p.55]. He eventually started volunteering at the communication center he was first evaluated at and has since had several jobs, now owning his own company. His newfound zest for life inspired many people, whether in the same circumstances as him or typically-developed "normal" adults. He even gained the attention of a beautiful woman who would later become his wife, moving from his home in South Africa to England.

Ghost Boy is a inspiring story that personally hit me because I worked with medically fragile children for four years, many of whom where deemed never to speak or walk in their lifetime. I witnessed the joy of communicating through switches and computers. The relief of a teenager when I finally guessed or interpreted their request will forever stick with me. I could not imagine the frustration of wanting something as simple as readjusting a blanket or an itch to be scratched and feeling utterly powerless to having that need met.

Martin is painstakingly honest about the long, hard road that took him from a voiceless caged bird to a songbird with purpose and hope. He explained the "Three Furies" that riddled his early life: Frustration, Fear, Loneliness and how he overcame them as he later became able to communicate. He explains that it was not only the inability to communicate that plagued him, but his greatest challenge was not being listed to [p.149]. He goes into detail about the hurt he felt that no one wondered about the anxiety he felt when he would be left for respite care at a care home on a farm where he was abused.
 "The one thing I wished for more than anything as I sat strapped in a seat, powerless to tell anyone about what I knew would soon happen to me, was for someone to look at me. Surely they would see what was written on my face? Fear . . . I had feelings. I wasn't just a ghost boy. But no one looked" [p. 153].
Martin also explained that though no one else understood him in his younger years, he talked to God.
"He was real to me, a presence inside and around me that calmed me and reassured me . . . I spoke to God as I tried to make sense of what happened to me and asked Him to protect me from harm .  . . I talked to him endlessly because I knew we shared something important. I didn't have proof that He existed but I believed in Him anyway because I knew He was real. God did the same for me. Unlike people, He didn't need proof that I existed -- He knew I did" [p.161].
His reflection over the many years of working hard to be able to communicate through relationships, both personal and career-related, is mature and introspective:
"As time has passed, my confidence has grown, and I've realized that I'm trusted by my colleagues . . . life is about checks and balances, small victories and minor failures. I'd spent years longing for things to happen to me, for events to take my life somewhere unexpected. Although I found it disorienting when it started to happen each day, week or month, I learned that this is what life is like -- unpredictable, uncontrollable, and exciting" [p. 214]. 

Even if you do not have someone in your life with identical circumstances as Martin Pistorius, there are a lot of lessons to learn from his life. For me, the greatest of these was that every person has worth and a right to life. I cannot deem a life any less significant than it truly is because God has placed His worth over every life. We are made in His image, even if the disease and depravity of this world mark us with deformities in our physical, mental, or emotional state. Still, all have worth and all are priceless in His eyes. And that is what He calls us to as well. He calls us to not look down to those who are different than us or who the world will call mute or a lost cause. Instead, we are to look at each person as having value, potential, and a voice that is yearning to be heard. Will we listen?

Want more?
Here is an article about Martin in UK's DailyOnline
A video interview with Martin and his wife
Buy a copy of the book from Amazon

Disclosure: I received a copy of this book for free through BookSneeze in exchange for this review. All opinions expressed are my own

Jan 22, 2014

Eze-village [pt 2]

Here is the continuation of my relaxing and jaw-dropingly gorgeous day in Eze-Village in the French Riviera last September [here's part 1].
Eze-Village is midpoint between Nice and Monte Carlo and boasts a medieval cliffside escape from more modern cities of the Cote d'Azur. You honestly feel like you've travelled back in time as you stroll up the cobble-stoned path that twirls around the cliff until you reach the uppermost point, Jardin Exotique. From there you get a bird's eye view of the village alongside the sparkling blue of the Mediterranean. Quite a sight to behold. I will never forget it. Those photos are shared in the first Eze-Village post (see it here). The following photos are from our descent from the Jardin as we meandered into shops and painting studios, soaking in every last minute of this glorious day. 
As I mentioned in the last post, Eze-Village hosts a super-expensive restaurant, Le Chevre d'Or. A small lunch will ring you up at around $100. Heck to the NO, I said. So I settled for the above sandwich near the Jardin for a reasonable few euros. Not too shabby [it was delicious, by the way].
And a goofy one below :)
Inside Eze's  Église Notre-Dame-de-l'Assomption
It was a day of pure beauty and I long to see it again someday!

[p.s. I am drawing thisclose to ending the photo journal of my Europe trip from last summer. Catch up by clicking here]

Jan 20, 2014

goal setting // time for some goals

"When a woman has a kingdom heart, she has an active understanding of what matters most to the heart of God. She lives in the balance of passion and contentment. She learns to love well, give without regard to self, and forgive without hesitation. The woman with a kingdom heart may have a duffel bag full of possessions or enough treasures to fill a mansion, but She has learned to hold them with an open hand. Hold everything with open hands. I don’t think we are ever allowed to grab hold of anything or anyone as though they matter more than the kingdom of heaven. When you hold relationships with open hands, then people come in and out of your life as gifts of grace to be cherished and enjoyed, not objects to be owned and manipulated. And then when you hold your dreams with open hands, you get to watch God resurrect what seemed dead and multiply what seemed small."  -Unknown [p.s. thanks Natalie for the quote!]

This whole goal-setting process has taken a lot longer than anticipated and I am slightly embarrassed that I am only now sharing my goals while others have posted theirs almost immediately after the ball dropped in NYC. However, this is a year I choose to not compare myself to others, and that has to include bloggers as well, so I am excited to share the goals that have been in my thoughts, prayers, and heart these last three weeks. I did not want them to be a composite of random resolutions that I would quit after January. I also did not want to give myself meaningless busy work to add to my full plate of responsibilities. In addition, I did not want to build a plan that was based only on my own desires and dreams. 

So, I prayed. I reviewed what I had written during the previous portions of the series [see them here]. And then I prayed again. I don't know about you, but I tend to hold onto my plans and schedules with a tight-clenched grip, so I intentionally took longer than I originally expected to wait for the right goals to be set. It taught me a bit of patience and humility since I am usually very eager to quickly check off and cross off things on my to-do lists. This should be different. This has to be different. This is a year I am choosing to life intentionally. It is a year I am choosing to delight rather than complain. A year full of purpose rather than apathy. 

In her goal-setting series, Lara Casey challenges goal-setters to think about the why and how of their proposed goals. This fosters introspection and purpose in goal-setting rather than frivolous goals just for the sake of writing goals. 
why should this be something I work towards this year?
how will I go about meeting this goal?

Here again is my vision that I have shared before. I constantly looked back at the overarching vision for 2014 when writing each of my goals to see if they fit within the vision.

>> my vision <<
To reflect Jesus' love, bring Him glory through joyful thanksgiving, delight in His presence and all that He has placed in my life, making the most of all the opportunities in my life, and never giving up or losing hope that the best is yet to come.

So, without further ado, here are my goals. They are not fancy; they are not mind-blowing at any rate. I am not sharing them to somehow glorify myself; the opposite, really. I am choosing to share them because I would like my close friends [near and far] to hold be accountable and ask me how I am doing with these goals. I want to share them because I know that I cannot do them in and of myself. In the end, I desire for all of them to bring the spotlight to Jesus, not myself.
 Lastly, they are fluid goals, meaning they may shift and change as the year goes on, because ultimately I want God's plans, not my own. So if they don't mesh with what He knows is best for me this year, they may look a bit different at some point, and I am wanting to be ok with that.

GOAL: Go deeper in prayer and studying the Bible
WHY: Bring God glory by learning more about His character and delighting in Him; learning more about Him will help me learn to trust Him in all circumstances
HOW: 1. Memorizing more Bible [Ann Voscamp's #MemoryProject, 24 verses in 6 mo.]
            2. Bible plans to keep me focused [currently going through Whispers of Hope by Beth Moore]
            3. Reviewing sermon notes the week after I hear it at church

GOAL: Maintain a healthy lifestyle by eating well, sleeping more, and exercise 
WHY: If I am physically fit, I have more energy for all the things I need to do daily. I will also be able to be more emotionally and mentally prepared to deal with different difficulties if I am well-rested and taking care of my health.
HOW: 1. Run a 5K and a 10K
           2. Turn of electronics at 11pm and do devotions before sleeping
           3. Cook more [more crock-pot and fresh recipes]

GOAL: Limit anxious thoughts and daily be more thankful of all I am blessed with
WHY: Hope in God's goodness; if I have a grateful heart, I am less likely to be anxious
HOW: 1. Daily write 3 "gifts" in my 1000 Gifts journal at the end of each day [using the Joy Dare]
            2. Memorizing scripture 

GOAL: Reflect Jesus' love through compassionate relationships and serving others
WHY: Build deeper, more intentional friendships, point others to Jesus, dealing with hard things together/sharing the burdens.
HOW: 1. Snail mail [contact me if you're interested in getting some!]
           2. Call/skype with a friend each month
           3. Prayer team at work: Each of us have a day to keep the clinic and families who enter in our prayers that they would be encouraged and full of hope.
          4. Big Sister Mentor: Meet monthly with my "little sis"; text her; pray for her
          5. Hang out with my younger brothers more routinely and have deeper conversations/get to know them and encourage them to be men of valor

GOAL: Grow in knowledge in different areas such as work and theology
WHY: To learn more for work/gain useful info to benefit my patients; to learn more about Jesus from Bible-focused resources
HOW: 1. Read 12 books in 1 year
           2. Review old powerpoints from my PNP coursework
           3. Expand my vocabulary [I use simple adjectives like "beautiful", "awesome", and "amazing" far too often. I need to start using words with more depth.

GOAL: Become more responsible & intentional about budgeting and saving
WHY: Learn how to be a good steward of the money I have so I can use it effectively & responsibly no matter the season.
HOW: 1. Continue to use Mint to budget and manage spending
           2. Read and study Dave Ramsey's financial planning materials

GOAL: Try new things I've always wanted to do and improve things I always hoped to get better at.
WHY: I have more free time now than I will in another season
HOW: 1. Learn to use the sewing machine that has been collecting dust in my closet
           2. Plant a tiny garden on my balcony this spring
           3. Learn to swing dance again
           4. Travel: In the next 6 months I will be going to Texas, California, Romania, and Cannon Beach. I am         SO excited to explore and have new adventures!
           5. Learn more about photography and how to use my Nikon J1 
           6. Start playing my violin again [it's been three years since I have played regularly]

GOAL: Use my blog to encourage, inspire, and uplift others while pointing to Jesus.
WHY: To use the time that people choose to spend visiting { Beautiful Hope } intentionally and purposefully, pointing to Jesus with any post that is written. 
HOW: 1. Pray before posting
            2. Plan series [coming soon: Behind the Hymn: Stories of hymn writers]
            3. Meet some of my blogger friends in person or Skype [I've already met a few and have been so blessed, so I am hoping to chat via Skype with more]

          * * * 
How about you? What are some of the goals you are praying and thinking about? What is your vision for 2014 and how are you planning on making it a reality? Let's encourage and help each other make this a year we'll always remember!

Jan 18, 2014

The Circle link-up // coffee date

Happy Saturday, friends! I am excited for today! First off, I had a wonderful Skype w/tea chat session with one of my favorite bloggers, Natalie Grimm from Heart Stirrings, followed by a long jog (well, "long" for me at least), and now am finally getting around to joining the fab ladies of The Circle (hosted by two of my faves: Kiki and Amy) for this month's link-up which is a blog coffee date. The task: grab a cup o' joe at your favorite coffee shop and answer the posted questions to help other bloggers from The Circle community get to know you better. I loved the idea and look forward to checking out some of the other gals' coffee date posts to dive a bit deeper into their lives over a cup of something yummy. 

Grab a mug, tea cup, or glass of something delish and let's chat!

1. Where are you seated (near the counter, near the window, near the door, against the wall)? 
Well I have a confession to make before we start; I didn't bring you to my favorite  coffee shop. Nope. And really, that mug in front of you? It's not coffee (oops!). Call me a rebel (especially since I've lived in the two coffee capitals of USA), but I prefer a cup of tea to calm me down and help me open up with a friend rather than coffee (it gets my hyped up and anxious; nobody's got time for dat!). And after spending a majority of my master's program borrowing wi-fi from various coffee shops in Seattle a few years ago, I have taken a long pause from them altogether. Honestly, I don't miss the noise (I could never focus on what a friend was saying anyway because I get distracted easily by all the people around us) or the smell (it lingers on my clothes all day). So instead, my favorite place to bring a friend to catch-up is the comfort of my very own dining nook in my apartment. Ever since I moved in 1.5 years ago, I hoped that this apartment would be a safe place where friends can open up, be encouraged, and leave more joyful than when they arrived. It is my hope that in 2014 I strive harder to make this a reality by inviting more friends over. So, to start the year off right, here YOU are, friend! :)

2. What are you sipping/munching on? 
I am sipping on Paris tea by Harney & Sons, which I paired up with my favorite French mug.

3. What do you want to get off your chest first (can be as deep as you want)?
I am excited for a new year. I have never taken this kind of introspective approach to setting goals like I have in the past weeks through Lara Casey's goal-setting series [see the posts: 1, 2, 3, 4, 5, 6], but it has truly planted a joyful expectation for 2014. I do not know what this year has in store for me or the ones around me, but I am determined to delight in it regardless of what may come or how different it may look compared to how I would like it to look. 

4. If you could choose anyone (besides us of course) who would you have a coffee with?  
Elisabeth Elliot. I absolutely love the way she teaches women Biblical truths and applies them to various areas such as femininity, careers, purity, marriage, rearing and education children, mission work, and grieving lost ones. She has spent her whole adult life serving others whether in Ecuador (where she worked with the very tribe that killed her husband, Jim Elliot), writing over twenty books, speaking at conferences and schools internationally, and being a mom and grandma. Whenever I read her books or hear her speak through podcasts, I am encouraged by her life and legacy. She defines Christian femininity by example.
[My favorite books Elisabeth Elliot: Keep a Quiet Heart; Let Me Be A Woman; These Strange Ashes; Passion & Purity; Discipline: The Glad Surrender; Be Still My Soul; The Path of Loneliness; A Chance to Die: The Life & Legacy of Amy Carmichael And check here for some of her teachings and here for some of her quote on pinterest]

5. What is inspiring you lately?
Other bloggers sharing their prayerfully planned-out goals, stories of women who make a mark on their community for Jesus' glory and to the good of those around them, French cottage furnishings, running longer than I have been able to for several months, bloggers who post heart-stirring and thought-provoking posts, beautiful photography [especially of beautiful nature or historic architecture]

6. What are your plans after coffee?
Put away laundry, transfer my journaled goals onto the Lara Casey powersheets that recently arrived (they're so pretty and get me pumped for goal-setting in an unashamingly dorky way), and then heading to one my my brothers' basketball games and taking him out to dinner afterwards for some brother-sister time together!

Alright, it's your turn! How would you answer these questions? Consider joining The Circle this month for a coffee date! 

Jan 14, 2014

eze-village [pt.1]

I am taking a little break from my goal-setting series so I can continue to pray over the goals and make appropriate changes before I share them here on the blog. I've been learning so much through the series by Lara Casey and am looking forward to eventually sharing some of the big plans in store for this year with my awesome blogging community! 

But until then, I feel I have some unfinished business to attend to. I never finished my travel posts on my Europe trip from last summer [see other posts here], so I wanted to reveal photos from our last day in the French Riviera --and what was really the last day of our 2.5 week vacation. There were so many sights to see, so this will be the first of two posts on the charming and delightful Èze-Village.

We took a Lignes d'Azur  bus from central Nice to Èze Village on a bright Wednesday morning in early September. The bus fare for the picturesque thirty-minute ride was incredibly reasonable at 1,50 euro. That's right around $2! After spending so much on transportation in Paris and London, this was a very appreciated. 

A little about Èze-Village before I let the beautiful photos speak for themselves. It is situated halfway between Nice and Monaco's Monte Carlo and extends from the Mediterranean Sea (Èze-sur-Mer) to the hilltop medieval village (Èze-Village). It is nicknamed the "eagle's nest" because of the bird's-eye-view atop the villages' high cliffs, namely the highest perch --- Jardin Exotique. The layout of the village is unique but practical: You start at the bottom of the hill and make your way up to the top to the garden. Along the way you'll meet friendly shop owners selling beautiful hand-made items, restaurants both small and large, and gorgeous florals of various hues. 

While planning for the Europe trip, I came across beautiful photos of the Château de La Chèvre d’Or, a luxurious hotel and restaurant boasting some of the best views the Mediterranean available. We instantly fell in love, but after viewing their menu online, we were bummed that we'd be spending nearly $100 for a small meal. I don't know about y'all, but that's way too much for lunch. So we decided to walk around the outer area and snap photos because the building was so magnificent and we later grabbed a much cheaper (and still delicious at nearly $10!) lunch near the top of the village. 
 We made our way up to the Jardin Exotique near noon and proceeded to climb the rocky steps up to the tippy-top of the village ---- and wow! It was well worth the uphill climb (and few euro's entrance)! 

 Absolutely breathtaking beauty, right? The white cliffs against the vibrant blue Mediterranean. The adorable shops carved from the cliff's stones. The exotic greens of the cacti atop cliff's garden. The quietness and solitude as we surveyed the surrounding visage. Oh, I could just go one and on. This was one of my top memories of our vacation! 

Stay tuned for the continuation of this breathtaking day. I just could not cram all the photos in one post. There is still so much beauty to behold in this fairytale village tucked away in the Cote d'Azur!