The night before Christy’s funeral, when friends and family gathered at the funeral home to visit with us and remember Christy, hundreds of people — from all over the country — came to pay their respects. HUNDREDS. It was moving, and it was fitting. I was asked that night by Frank Batson, an elder of the Donelson Church of Christ who I had asked to lead part of her funeral service, to write something about Christy that he could read for me at the service the next morning. I was so appreciative and thankful that he did. Not surprisingly, attendance at the funeral service on July 19 was standing-room only — a huge sea of people who loved my sister. I have been asked by numerous people to share the remarks I wrote for that day, and I thought this would be an appropriate place. On behalf of Christy, her husband, Doug, my mother, Sherrilyn Johnson, and our entire family, we thank you for loving Christy just as we have. – PHILLIP TUCKER, Christy’s brother

Remarks by Christy’s Brother

Last night I was blown away by the number of people who came to Christy’s visitation. As they inched their way into the room one by one, I started to hear about the numbers that were growing outside—that the line was stretching down the hallway, through the foyer of the funeral home, out the front door and down the front steps. When all was said and done, the funeral director said they had not had a crowd like that for a visitation since country star Porter Waggoner’s funeral—and that was nearly four years ago.

While I think Christy would find it absolutely hilarious that her funeral visitation was compared to Porter’s—but without all the rhinestones—I’m not at all surprised by the turnout. As person after person filed past me last night, I was told—through smiles, hugs and tears—story after story that made me laugh, cry, and sometimes both. Everyone had their Christy stories to tell, and they were all beautiful.

I heard what an incredibly positive difference Christy had made in a former co-worker’s life simply because she’d been willing to listen to her and comfort her. I heard from a high school classmate how much it had meant to her that Christy had made an effort to be at her baptism many years ago, even though Christy hardly knew her. I heard from fellow volunteers of a medical mission trip to Guatemala just a few years ago how Christy had made the faces of the children there light up. (In fact, a mother in one of the villages offered to give one of her children to Christy because she saw the spirit of Christ in her.)

I heard stories from former co-workers of Christy’s about her compassion for patients when she was a nurse. I heard from Christy’s high school senior English teacher—23 years later, mind you—that Hume-Fogg High School was a brighter, more positive place because she was there, and he meant it. I heard from both current and former neighbors who told me how much she impacted them because of her Christian spirit. I heard from many, many former classmates of hers at Harding University, who had traveled here from near and far, how their lives had never been the same after knowing her. I heard from a dear friend that she had given him encouragement that helped save his life.

I heard about her love for Gerbera daisies. I heard about her hearty, boisterous laugh and her always-present smile. I heard about the way she would tell funny stories without leaving out a single detail. I heard about her amazing and unparalleled devotion to Doug. But what I heard more than anything else, over and over again, was about Christy’s capacity to love, her gift of encouragement, and the way she always put everyone else ahead of herself. That crowd last night proved just how much she has touched people from every walk of life in ways they will never forget. She was beautiful—in every single way a person can be beautiful—and not one person in this room would deny it.

Christy was my friend and sidekick for my entire life. She was my supporter, my confidante, my ally, my encourager, my partner in crime, my comforter, and my closest and dearest friend. Only I have shared an entire lifetime with Christy, and I will cherish those thousands of memories in my heart for the rest of my life. It is because of her, more than anyone else, that I am who I am today. It is because of her that I have my amazing brother, Doug, who I love with all my heart. And it is because of her that I look forward to a joyful reunion one day in heaven.

Back in March, my mother and my aunt were talking to Christy about her illness. As you know, Christy lost her speaking voice some time ago, so she was really only able to communicate by typing on her computer or other electronic device. As they talked, the philosophical and theological question came up regarding God’s intervention in illness: Does he perhaps cause illness because He has a certain purpose to fulfill that is unknown to us? My aunt readily said that she believes only good and perfect things come from the Lord; therefore, disease does not come from Him. They asked Christy what she thought, and without any hesitation she reached for her keyboard and quickly pounded out the following statement: “Do I feel God wants me to have a degenerative and fatal disease? No! He doesn’t want me to be sick. The reality is that, regardless of what I think about it, He is always with me and will see me through. … This is not the end. It is my dress rehearsal. One day I again will walk, talk, eat, and enjoy everything our Savior provides for us. … We cannot question the bad that happens without questioning the good.”

That statement is my beautiful sister in a nutshell. I don’t claim to know everything there is to know about heaven or what awaits us there. But at this moment, I do know one thing is for certain: All the angels throughout heaven know Christy is there because she is hugging my Daddy right now and laughing louder and harder than anybody else there—and they are loving her for it.

My days also have been filled with doctor’s appointments—mostly proactive ones—with all the ancillary disciplines that collectively manage my care at the Vanderbilt ALS Clinic. There have been swallow studies, speech therapy consultations, pulmonary studies, sleep studies, etc.

Although my weakened tongue allows me to easily consume only food with the consistency of pudding, I will muster through anything I like in private, using my finger or utensil as a mechanical tongue, moving the food back and forth so I can tear the food down enough to swallow. Often I get tired of trying to fight the battle of eating normal food and become satiated with very little. Thankfully, my swallow study in June went fairly well, though coughing spells often interrupt swallowing my supplements or taking a liquid will occasionally enter the wrong pipe. Every now and then while swallowing a liquid, my body forces me to take a breath in the midst of swallowing, and that doesn’t end so well, either!

My speech, although initially improved in China, has continued to worsen since returning. When no one else understood what I was saying, Doug always could. Now he is occasionally questioning me. It’s especially bad when I’m tired. Speech pathology has already proactively approved me for a crazy communicator that only requires my eye movement to operate it. I’ve not been too eager to accept the help—yet!

At my first ALS Clinic visit on November 6, 2009 (I remember because this was my and Doug’s 16th wedding anniversary), my pulmonary studies showed I had a lung capacity of 120%! They were so impressed, saying, “We don’t see that good a number even with healthy people!” That was a great encouragement, and in my head I told myself that my lungs may provide me with some longevity in spite of everything. My past of clean living was going to pay off! Only six months later in May, though, upon returning from China, my capacity had already dropped to 80%. In August I was only around 60%. I’ve now been counseled about the need for a feeding tube before it drops any further. Once your lung capacity drops further, sedation—even conscious sedation (which is required for this procedure)—puts you at risk for becoming ventilator-dependent.

I’ve also recently been provided with the news that I need a BIPAP (bi-level positive airway pressure) machine for my breathing at night. Due to some sleep apnea, I only stay in REM sleep about 1.5 minutes before it’s interrupted! The BIPAP will allow me to get more air in and out of my lungs without the natural muscular effort needed to do so and allow me to get better, deeper sleep. This should help with general fatigue and overall help me feel better.

Weakness in my hands has slowly been creeping in and rearing its ugly head. Buttons and snaps are very difficult to manage, so I’m finding more clothes with drawstrings at the waist and easy pullover shirts. I’m having increasing difficulty in handling utensils and even putting on make-up. Shoes have been a problem since the beginning when I was wearing a brace because of the foot drop. I’ve missed flip-flops, heels, and basically cute shoes for a while. The variety of shoes has opened up a little since losing the brace (no need when in a wheelchair), although there is still a pretty limited type of shoe I can wear and still safely transfer from point A to point B. Doug—always my style guru and, more important, my best friend who wants me to feel good about myself—helps me find shoes and clothes that not only meet my growing list of limitations but also keep me looking as stylish as possible! Believe me, keeping a healthy self-image is vital in the midst of such a crippling disease.

What about China, you may ask? After three months in China, did I just abandon any progress or benefits I received from the acupuncture and herbal tea? Of course not! If anything, I was too superstitious to just give it up when I returned—for fear that my body would instantaneously internally combust and give up the ghost!! Well, maybe nothing that dramatic, but the head does mess with your reality at times. Upon returning I continued to receive acupuncture three times a week and continued my herbal tea twice a day. My Chinese acupuncturist recommended I grind up one of my daily bags of herbs as needed (about the size of a cache) and have her encapsulate them—with a twofold benefit: The herbs would last four to six months instead of one month, and I would get a much more potent dose. An additional plus for me was that after about six months (two prior to China), I was pretty much “over” trying to choke down rancid-tasting tea twice a day! I took 10 capsules three times a day as she recommended. The problem with this solution, though, besides adding 30 pills to my already heavy dosing of about 25 supplements a day, was that she found packing the herbs into capsules with her capsule machine much more labor-intensive than she expected. She spent more than five hours on her day off to make me about 100 capsules! Of course, I had to be charged for the labor. Once I ran out of those, I thought I’d try something different by simplifying the process. I began grinding the herbs and putting the mixture in applesauce three times a day. I did this for about a month and a half but found that it really messed with my digestion. I finally decided I would stop—but to restart if I notice a true difference in their absence. At this point I haven’t noticed any difference, but it’s really difficult to gauge the progression of ALS.

ALS is like a crafty thief that slowly—yet steadily—robs you of micro-abilities you never even thought about until you start to have difficulty performing them. Our bodies are miraculous creations. God made every intricate cell to work together in unison so that the communication, whether voluntary or involuntary, is instantaneous and miraculous.

The herbs weren’t the only aspect of my treatment that was changing. Only a month after returning home, I broke my right fibula after an acupuncture treatment. I have frequent falls, but this was the first time I’d broken something. And I was following my natural obsessive compulsion over something when it happened. I was in the public restroom at the doctor’s office when I reached down to pick up a piece of paper to throw in the receptacle, only to have my legs give out beneath me; my right leg twisted back behind me, resulting in a spiral fracture of the fibula. I was already using a walker full time, but the distances I could tolerate were becoming less and less and the labor of my breathing was becoming more of a challenge. After I broke my fibula, I was confined to the first floor of my brother’s home. Thankfully, he has a half bath on that floor, so with Mom’s help I could get my hair washed in the kitchen sink, get bathed, and have toilet accommodations, too. I slept on the sofa, and Doug slept beside me on the floor on a mattress. A huge blessing was that the Vanderbilt ALS Clinic had already proactively obtained a motorized wheelchair for me through my insurance—$24,000 worth of remarkable technology—to help me in my daily “walk” with ALS.

My dear friend, Brenda, visited me after I broke my leg

The timing was right: I was getting weaker anyway and needed the extra help of the wheelchair while I wasn’t supposed to be bearing weight on my broken leg (which completely healed in about six weeks). So, since these events, the wheelchair has become my usual transportation and really helps me from fatiguing so easily. I can still use a walker for very short distances or walk while grabbing pieces of furniture, molding and such to assist me. The wheelchair that I was determined to avoid as long as possible has become my friend.

In June we received an overwhelming blessing—again. Doug’s boss called him into the office to tell him that Iron Mountain and its employees were raising money in order to continue the efforts to send Doug and me on a dream trip. If you remember, back in late 2009 my boss and friend, Whitney Fisher, started a secret campaign (with the help of my brother) to raise money for us to take a dream trip to Europe. At that time we were already contemplating a way for me to seek treatment of ALS in China. I also knew I’d have to leave my job soon (which I did in December) and that we would need to sell the house because of my mobility issues. After much thanksgiving, thought and prayer, we felt God led us to the hope awaiting us in China, and we used the majority of the funds for Mom and me to go there for three months of treatment. We had committed to using the remaining funds for us to take a trip together when Mom and I returned—closer to home and of shorter duration, but a trip nonetheless—for Doug and me to enjoy one another. Doug’s Iron Mountain team, with this latest news, once again has changed reality into a dream for us to see Europe together.

On August 31 we leave for Barcelona for a 12-day European cruise. What an amazing blessing! It will not be real to us until we are on the plane and on our way. Not only that, but when we return, our home will be ready for us! It’s always a bit disappointing returning to reality, but for us it will be bliss to return to our finished home. It’s been nine months since we sold the home that we’d loved into shape, and it’s time to give birth to a new one!

Thank you to all who have provided this dream trip that will be a respite in the midst of this unpredictable life. We love the life God gave us and pray that we use the limited time we have on this earth to sing His praises and show others His salvation and glory.

Iron Mountain Team Responsible for "Dream Trip"



Whitney, Original "Dream Trip" Organizer

I was able to get some thoughts down before leaving Huaihua, which I will now share:

It’s my last day in Huaihau, and I’m trying to put down some thoughts before I lay my head down here for the last time. I’ve been overwhelmed with emotions during the past week — unbelievable happiness and joy at the thought of returning home, anticipation for the long and difficult trip ahead of me and Mom, and deep heartache over the goodbyes to people who have become such an important part of my life.

It’s been three months since Mom and I left our lives in Nashville for a hope awaiting us in Huaihua, China — the distant unknown dot on a map. I don’t regret the decision. I believe every day has been a blessing in unexpected ways. I have met people who I know God has placed in my path throughout this journey. From the very first flight from Nashville to LA (thank you, Elaine) to the very last flight back from LA to Nashville (thank you, Kristie), I have been placed in the midst of angels. Not only that, but I have been humbled by emails I’ve received from all over the world from people affected by ALS that have touched me deeply. I don’t pretend to understand the whys of this life, but I do know God is in control — and I am thankful He is.

In one of my very first blogs, I wrote, “I don’t know if my purpose here is for healing or not, but it is my prayer that I can fulfill my purpose and receive healing.”

I don’t know if my purpose was fulfilled, or even what it was, but I believe we often don’t know these things for a very long time — and that’s OK. I wish I could say I have had great improvement physically. The first two weeks of treatment proved promising with some subtle improvement in my speech. From what I understand, the early stages of treatment generally show the most response, and I am grateful for even this improvement. Unfortunately, strength in my lower extremities, and thus my walking, has worsened. In spite of this, I find great hope in the connections I have made while being here, not only with doctors from around the globe who are searching for answers, but also with my new family of support and strength who walk the same path with me daily. We will all continue to share any answers we can find in our continued journey to alleviate ALS.

Thank you to everyone who has followed along on this journey with me. You have each blessed my life in ways you will never know. To my friends and family: I love you. My life is a blessed one because our Father above placed you in my life, and I am so thankful.

Always,

Christy

TUESDAY, APRIL 2 — Where else can you see a beautiful woman dressed like she just stepped out of a fashion magazine — and then see her turn her delicate and graceful neck … to hock a huge loogie? Where else can you be invited to someone’s home—and have to bring your own port-o-potty with you? Where else can you go on an outing “for fresh air” only to find that the city streets are the trash cans, the lakes are nothing more than refuse dumps, and regulations on smoking are nonexistent everywhere, even inside hospitals? Yes, it’s a magical place where anything can happen — and usually does.

Mom wanted a picture of me in my "cocoon."

Since I last wrote over a week ago, much has happened, as usual! New adventures and new acquaintances have come — and gone. For whatever reason, many of the translators have left and new ones have come who are not as familiar with their duties. Mom has unofficially stepped in as the “welcoming committee” to help orient new arrivals during their adjustment. Believe me, people are in shock for at least the first week of being here — many wondering what in the world they are doing here and whether they should turn around immediately to go back home!

Me and Vito

It’s really important that we meet them as soon as possible to offer support and assistance. You have to “pass the torch” for survival! This past week we welcomed several new families to our China family, two of whom are also from the good ol’ US of A. There is a wonderful family from El Paso, Texas: Juan (who has ALS), Noami, and their adorable 5-year-old, Arissa. They are very brave to travel with Juan in a wheelchair and a little one in tow! They are rays of sunshine to the hospital. Two Texan families are now represented. We also have a great couple from Iowa, but they want to stay anonymous. Mom is enjoying spending “girl” time with both Noami and the wife from Iowa. Two brothers arrived last week from Canada: Don and Norm. We enjoyed spending time with Norm this past week before he had to return home. Don is remaining here for treatment and is a very courageous and kind man. 

Cup at the bakery. It says at the bottom: "Best quality and good taste. It will captivate with relish."

International patients are not the only people who come to visit the Red Cross Hospital. Doctors practicing alternative medicine also come from all over the world to study and observe Traditional Chinese Medicine. Unfortunately, they are consistently disappointed with their visits because of the Chinese mentality. The Chinese doctors do not like outsiders to offer suggestions even if the information is helpful and can be of great benefit. Also, they do not share information with foreigners that they deem is in their best financial interest to withhold, such as prescription formulas for the herbal teas. This is very frustrating to visiting physicians whose primary goals are to learn and exchange information so they can treat their patients more effectively. I’m not sure why the hospital encourages doctors to come if they’re not going to share any information, but they do.

Dr. Adam Wong (left) and his patient Kenny, with me and Mom

This past week a doctor from Malaysia, Adam Wong, arrived with one of his patients, Kenny, who has a seizure disorder. Adam is an amazing person who has studied martial arts since he was 7, is an accomplished concert pianist and flautist, and is a TCM practitioner who enjoys sharing information because he wants patients to get well — a novel idea! He came for continuing education and enhancement of his skills, but he left saying our “crew” was the highlight of his trip. Had it not been for our laughter and exploits, he said his visit would have been “terrible!” His vast knowledge about TCM (and the fact he could communicate that knowledge) was such a gift for me, Zarko and Vito to experience. The hospital was not so happy about this gift, though, so any knowledge we gained from him was during our undercover-op moments! This sounds like a joke, but it’s not. Who would ever guess that while being a patient at a Chinese TCM hospital for treatment of ALS that I would need to “escape” secretly to a bakery (along with Zarko and Vito) to meet with a Malaysian TCM practitioner wanting nothing more than to help? The primary concern for us when we leave is how to continue treatment at home. I will take what I’ve learned here (and from Adam) so that, hopefully, my Chinese acupuncturist in Nashville can continue treatment to some extent. Zarko and Vito may actually take a little side trip to Malaysia on the way home for some additional help before returning home.

Mom and I with Tim (from Australia) and Luby (acupuncturist) at Vivian

On the night before Adam and Kenny left, we got to enjoy another dinner out at Vivian to “toast them off.” Once again the food was delicious and the surroundings were elegant in our private dining room. I was hoping to see the “Pretty in Pink” room, but we were ushered to what was evidently the ultimate room, “The Vivian Room.” The coolest thing about the table settings in this room was the cloth napkins placed in the glasses. Our huge round table, which seated about 15, had a cloth napkin at each setting that was folded in a different way.

At Vivian: Everyone's napkins were folded in a different way.

I didn’t know there were so many ways to fold a napkin—but origami did come from the Orient. The highlight of our dinner was when Adam played a white baby grand piano for us out in the main dining room. We were enjoying listening to several songs when he started playing Pachelbel’s Canon in D. Immediately, I got a lump in my throat, teared up and started to cry! I walked down the aisle to this song at our wedding — it makes me a little emotional under normal circumstances, but even more so after three months away from Doug!

Adam at the piano!

Kenny, Zarko and Dr. Adam at Vivian

Vito and Zarko have been trying to get me to go to the dance club directly across the street from the restaurant, so tonight was the night. There is humor to be found at any moment being a handicapped and foreign person in China. Even in the best of health, you take your life into your own hands if you cross the streets here. So, in order for us to get safely to the dance club, the taxi driver had to pick us up in front of Vivian, drive us down the street to turn around, and then drive us right back to the point where he picked us up — but now on the opposite side of the street — to deposit us at our destination!

At the bakery across from the Better Life Mall. This is where we had to have our "clandestine" discussions with Dr. Adam.

We had a great time listening to very familiar pop dance music and taking in the local scene. I even got to “dance” because of a conveniently placed low wall I could lean against that made me appear as if I could stand and balance while doing a little boogie! I have to make a statement here about the women in China because their fashion decisions are always so intriguing to all of us foreign visitors. Although the living conditions are very poor and dirty by most standards, they are ALWAYS “dressed to the nines.” It is expected to see women out on the town at a dance club wearing heels and impeccably dressed, but these women dress the same way wherever they go. They wear heels to walk the cracked, crater-filled streets, to go hiking in the park. Even the housekeeping staff at the hospital mops our floors and empties our trash in heels! And they do have very cute clothes and shoes, but all the sizes are tiny. In order for a “normal” Western person to buy something like a shirt, they have to find an XXL or even an XXXL!

Our new friends, Yun (standing) and Mingsui Tang. I'm holding the card Mingsui made for me.

If you go back several blog postings, you will read about our meeting a sweet mother and daughter (with a Chihuahua!) on one of our trips to the mall. They are Yun and Mingsui Tang. I’ve been keeping correspondence with the 12 year-old daughter, Mingsui, since that visit. Yun does not speak English but encourages Mingsui to practice speaking and writing English — and she does very well. Mingsui emailed me to say that she and her mother wanted to come visit us at the hospital before we left, so they came a couple of Saturdays ago and we got to visit for several hours outside on the patio.

With Mingsui, in the park behind her home

Mingsui brought me a precious card she made, and brought Mom a hand-stitched Chinese knot that took her friend three days to make! The Chinese symbol on one side means “peace,” and the symbol on the other side means “for all time.” These were very special gifts. When they were leaving, Yun asked us (through the translator) if we could get away long enough to come to their home for dinner one day the following week. Zarko and Tim (who is from Australia and has an undiagnosed neurological disorder) were outside with us at the time, so they were invited, too.

Cathy (translator), Yun's sister-in-law (and her cab), and Mingsui before our trip to the suburbs!

Yun said we’d have to take “some” steps to get to their home, and we confirmed that we could manage “some” steps. She told us she would come Sunday at 2:00 to pick us up and take us to their home. So, this past Sunday, the four of us, along with Cathy (one of the translators), ventured out on an visit to an authentic Chinese family’s home!

Me, Yun, Mingsui and Tim

To show our appreciation for the invitation and dinner preparations, we ordered some flowers to take to the Tangs. We’ve been blessed to have some inspirational books in our possession that our friend Deb sent us (thank you, Deb!) to offer as gifts for such an occasion. They’ve given us an opportunity not only to help encourage their pursuance of English (they love anything English) but also to offer hope and encouragement to them by introducing our Savior and Father in heaven. On the day we visited with them on the patio, Mom asked Mingsui what her English name was. She said she didn’t really have one, so Mom called her “Angel.” Mingsui lit up immediately and said, “One of my friends calls me Angel!” One of our little devotional books just happened to be titled Angel Hugs, so we felt the book was made for her. We took it (with an inscription) to accompany the flowers.

It's awesome to travel with a port-o-potty!

The first fun we encountered on Sunday was Yun’s sister-in-law — who came along with the taxi she drives for a living! Her sister-in-law provided our ride, along with a second taxi needed for our group. Once we arrived in the “burbs” — residential high-rises galore — we all climbed out of the taxi … along with our very own port-o-potty! Many Chinese were standing around watching us as usual, but I imagine the toilet was an additional highlight! (Chinese homes often don’t have toilets of the sitting variety, and it’s difficult — if not impossible — for people with ALS to navigate them, so we had to be prepared.)

Park behind the Tangs' high-rise

We were encouraged to stroll the park behind their high-rise building when we first arrived. Well, I didn’t bring my walker, and a “little stroll” is more like a mini-marathon for me! We walked for a while and took pictures, but soon I had to let them know it was too tiring, especially because we still had to walk back and make it to their unit. We got back to their building — and found ourselves standing before about 40 steps! “Some” steps obviously has a different meaning to them than to us! Zarko and I eventually made it to the top, only to walk and walk and walk all the way to the other side of the building.

A little mid-walk rest on the john.

Guess what became my resting station mid-walk? Yes, the port-o-potty! Good times. I’m glad laughter is good for you. I should be well soon considering all the laughter this place has afforded me! During the walk we were assured there were no more steps, but when we reached the other side of the building, there were about eight more to climb! It was at this point that we turned and walked to the middle of the building and finally got to an elevator! I was SO relieved when we arrived at their front door …

The Tangs' living room

Rather than taking our shoes off (which is difficult for me and Zarko), they supplied us with shoe covers before we entered. Their apartment was nice and open and simply furnished. Mingsui’s bedroom was adorable, and even DuoDuo (the Chihuahua) had several beds for her comfort.

Appetizers

The Tangs had appetizers waiting for us on their coffee table: grapes, tomatoes, chestnut-like fruit on sticks, and some strange, sweet, individually wrapped fat Cheetos-like snacks. And, of course, there was tea. We had soup that was “very good for us” that looked like transparent gelatinous seaweed with about four prune-looking things, chickpeas, and berries of some kind floating around.

Mr. and Mrs. Tang preparing dinner in the kitchen

Mr. and Mrs. Tang took turns cooking, and the food kept coming — and coming — out of the kitchen to the dining table. I was getting a little concerned that we wouldn’t be able to consume enough food to demonstrate our sufficient appreciation, but that concern vanished when there wasn’t much left by the end of the meal, thanks to Tim in particular.

Refrigerator in the dining room

Zarko and I had a few of our laughing fits in the midst of dinner (often at the most inappropriate times), but I’m hopeful we side-stepped appearing rude once Cathy provided an explanation to the family about emotional lability. Of course, she probably just said, “They’re idiots” in Chinese, and that sufficed. Regardless, we were forgiven! They loved the gifts we brought, and we had a very special evening with our special hosts.

Mingsui in her bedroom

As the saying goes, sometimes you have to take lemons and make lemonade. In this case, we’ve taken physically broken people with infectious laughter and hope, put them together to support one another, and made something pretty perfect — wholeness and friendship. Now that the weather has “turned” (though it’s being as fickle as it is in Nashville), we are spending much more time outside on the patio.

The Tangs

As nighttime falls, you can often find me, Zarko and Vito there, enjoying the respite (or party!) we have created with laptops connected to wireless Internet radio (or a downloaded movie), $50 speakers from China, and blinking party lights in the tree and railings that surround us. Many times other “family” such as Paul and Li Jang stroll by and visit the party for a while.

The "Patio Gang"!

Oh, and I’ve never mentioned that we are locked in every night; the gate around the patio is chained, and the steps up to our floor are gated and locked. We’re props for pictures when we’re out around town, and we’re like monkeys in the zoo at nighttime out on the patio! Curious locals frequently drop by, their illuminated faces suddenly appearing from the darkness to stare at us through our huge “cage” of gates! I think they enjoy the loud music and observing antics of the strange foreigners locked away for their own good.

No one's there ...

... or is there??

We only have about one more week until we return home! We leave on April 11, and after a loooonnnng trip, we will be back in the Nashville we love so much. More important, we’ll be back with most of you, our dear family and friends. It’s been a difficult but blessed time for us. Thank you so much for continuing to lift us up in prayer and for sharing this experience with us.

More to come as we depart …

Love, Christy

“Every time I think of you, I give thanks to my God” (Philippians 1:3).

TUESDAY, MARCH 16 — Where do I begin? It’s been a week and a half of strange and surprisingly good food, unusual outings, ADA (Americans with Disabilities Act) violations galore, and large enough doses of miscommunication to fill all the squatter toilets in China!

Mom has become a little demanding (if not childlike!) in her new-found freedom, and the other day she HAD to have ice cream. Nonstop for at least an hour while at the mall, I heard, “I want ice cream. I’m going to get ice cream. I’m going into KFC to get ice cream.”

Ice cream with fruit, chocolate -- and a tomato!

There is a bakery where our driver often stops on the way back from the Better Life Mall to get “nonsweet” loaves of bread (ALL of their bread is sweet for some strange reason) — and THANK GOODNESS they had ice cream! Mom came back with vanilla/chocolate soft-serve ice cream in a cup with some colorful and fancy toppings like fruit and even chocolate shavings! The ice cream was actually pretty good, so we returned a few days later to get some more. This time, though, we got an additional surprise: a cherry tomato cut like a little bloomed flower on top! I guess China is serious about the tomato being a fruit.

At Vivian

We finally had a GREAT eating experience the other night at a restaurant called Vivian. About 15 of us made our way to this very elegant restaurant (with the piano and singer scenario again). Before entering the restaurant, though, we had to climb about 25 steps. There was an elevator, but we were told it didn’t stop on that floor! Thankfully, none of us were in wheelchairs, though it was a challenge for several of us. They sat us in a room in the back with the theme Wizard of Oz: purple textile walls and ice-blue velvet-tufted sofas with crystal buttons. There was even a Pretty in Pink-themed room, though we didn’t see the inside. It’s odd what American culture they pick up.

Though I stuck to ordering Chinese — rice with vegetables and beef and a cream of carrot soup — Mom ordered a pork chop with jam. We had a tasty hot fruit tea with bananas and oranges mixed in. No matter where we go, everyone orders and shares what they have. Almost all the tables in restaurants have a lazy susan, so sharing food is easy. Everything I tried was very good. They even had chicken nuggets! Yes, I know — very uptown, but when you haven’t had very much food that tastes good to you, it’s filet mignon!

Mom truly has been such a wonderful roommate and helpmate to me here. We can laugh and cry together, and I know I can always count on her to say, “Can we put in Friends?” To help me the other night, she plugged in our fancy heating coil and stuck it in my nightly bucket of herbal tea to heat it for my foot soak. By the way, my toenails are now a beautiful stained yellow-orange color from the soaks — nice! Unaware of what step Mom was at in this process, I was lying in bed when she suddenly screamed, “Oh, no! It’s on fire! What do we put on it?!” I sat straight up to see smoke and flames from below the foot of my bed. Moving as quickly as I could (!), I saw the coil lying on what was a towel — which was now in flames … and still plugged in! I unplugged the coil and grabbed the bucket of herbs and dumped it on top of the flame. Herbal tea was now all over the floor (and under the bed) … but no fire. Mom has decided to leave the foot-soak duty to me from now on …

One of the funniest experiences of our mornings is “doctors’ rounds.” I wish I could videotape it! Around 8:45 every morning my assigned doctor, Professor Zhang, and one of the interpreters come by my room. Sometimes my acupuncturist (Luby or Crystal) and my nurse (Su) accompany them. I say “funny” because if you take the visits too seriously, they can be extremely frustrating due to the communication problems — not to mention the cultural differences. The Chinese seem to excel at stating the obvious. I’m barely showered by the time they make rounds, so I’m often still trying to get ready when they arrive. I think it fascinates them that I shower every day. I can’t help it — it’s a pain, but it helps get my day started. Plus, I am a girl — thus, higher maintenance!

Professor Zhang comes in smiling but with a look of some surprise and concern, points at my head, and makes some unintelligible grunting sounds, at which point the interpreter turns to me and says, “Your hair is wet.” I then say, “Yes, I am still getting ready.” She turns to translate to Professor Zhang. Professor Zhang then, with a look of wisdom and authority, speaks to the translator, who in turn turns to me and says, “The professor says you need to dry your hair.” I say, “Yes, I am still getting ready.” The interpreter translates to Professor Zhang. Professor Zhang then says through the interpreter, “It is really best that you dry your hair.” I say “yes” — smiling and holding back laughter. At this point Professor Zhang is touching the short-sleeve shirt I’ve thrown on so I can be partially dressed when they come in. Usually at this point of my morning, I’m a little hot from all the work it takes for me to get ready. They come in from the non-heated hallway with coats and hats on. Professor Zhang, still smiling and with a knowing look, utters more wisdom to the interpreter. The interpreter turns to me and says, “You need to wear more clothes.” Still smiling back and forth between Professor Zhang and the interpreter, I answer, “Yes, I am still getting ready.” I learned after a short period of time that it’s just easier to agree and move on! On any given morning, we pretty much have the same “pointing out the obvious” conversation — along with examinations of my feet, legs, tongue, pulse and the like. Sometimes herbal tea formulations or the acupuncture focus is changed based on these “exams.” The rest of the conversation, I’ve decided, is for comic relief!

I have to be honest: I’ve had my share of tumbles and falls since I’ve been here (it’s just a part of it) — and so has Mom, unfortunately. Well, between that and the acupuncture and the massage beatings, I have accumulated some nice bruising. Evidently, the Chinese must never bruise because my bruises have also been a fascination to them. I don’t mind that so much, but it’s how they then act upon it that I don’t much care for (although I honestly do find it very funny). In particular, I have a prize of a bruise on my knee right now from when my legs just gave out beneath me while overdoing it on a ski-type machine in the exercise room. Every day when they see the bruise, they actively begin mashing on it, asking, “Pain? Pain? … Pain?” I say “they” because everyone has done the same thing — Professor Zhang, Luby, Su — and every time, I say, “YES! PAIN!” Of course, my bruising will never go away because they keep pushing on it!

Mom's cousin Evelyn McFarland and her husband, Ron, visited us!

Last Friday we went on our most “memorable” outing yet, to Zhongfang Forest Park. Remarkably, we have some family members who live part of the year in Jing Zhao, China (in a different province about eight hours away by train and bus) who teach English at a university. It seems that the Bible is a great book to use for teaching English! Mom’s cousin Evelyn and her husband, Ron, came to visit us on Friday morning and stayed through the following day. They brought us some exciting things like real cheese and spaghetti sauce!

At the park

Mom and I missed the last park outing, so we thought it sounded like a great way to spend three or four hours on a pretty day. Plus, the interpreters told us we would have a barbecue while there (barbecue of what, we weren’t sure). What a great way, we thought, for Ron and Evelyn to meet our new friends and experience something unique while visiting here. Well … that’s what we thought!

We should have known we were in for another China Adventure when it took almost an hour to get everyone loaded into the van, plus three taxis! Almost everyone went — about 17 people, plus two new interpreters (Cassie and JoAnna), the driver, and food for the BBQ. Time in China is a funny thing. When you are given a time for something to start or end, it either starts way before the scheduled time or way after — but never at the scheduled time. So we started out on this trip way past the allotted time. After taking forever to pack up and stopping to get gas, it only took about 20 minutes to get to the destination. The van crawled up a winding narrow road along the mountain and entered the gates to the park. We made it a little further up the hill when the van came to a stop and we were told to “rest” (which is what we thought we’d been doing all along). They were evidently trying to locate where all the taxis wound up. Mom, Evelyn and Ron were in one of the taxis. After “resting” about 10 minutes, we continued further up the mountain and arrived at our destination: a gravelly, uneven dirt drive that continued up a hill to … well, we weren’t sure. I got out of the van and looked down a rock path to see Mom, Ron and Evelyn coming our way. The walker I take everywhere was in the trunk of a taxi somewhere, so we started “hiking” up the mountain with Mom and Vito on each side. When we got to the top, little by little, more of our party started showing up — including those in wheelchairs, Kamal and a man by the name of Mohammed. My walker also appeared.

We were all now standing at the top of the hill overlooking a grand courtyard. Before us we saw mountains, a few scattered buildings, statues, water — and a large run of about 25 concrete stairs with no handrails. What a great trip for a bunch of handicapped people! I made it down the stairs fine, but slowly, with the help of Mom and Evelyn. We were all descended except Kamal and Mohammed. This was when the fun part began — the ancient Chinese sport of “Who Can Carry the Man in the Wheelchair Down 25 Steps Without Dropping Him” (at least I think that’s the official name). It’s more interesting than curling. Yes, somehow they managed to get both men down safely. We figured the goal was to go beyond this point, but after standing out in the open courtyard for more than an hour snapping pictures (that was really all we could do), it was back up the stairs to then walk back down the hill to the van. You’re probably assuming Kamal and Mohammed were carried up the stairs in their wheelchairs head first, facing backwards — the correct technique for ease and safety — but, noooooooo. They were carried the hard and dangerous way: feet first, facing forward! Maybe this game is categorized as an “ultimate” sport.

From here we were taken to a camp-site area with numerous concrete barbecue pits and groups of people sitting on concrete piers cooking with skewers and eating. Garbage was pretty much sprawled everywhere, adding to the appetizing atmosphere. By this time it was almost 3 p.m., and we hadn’t cooked or eaten yet. We were now thinking that maybe we wouldn’t be returning by 3 or 4 as scheduled! A little man who worked at the site walked around with hot little coals, placing them in four different pits for us to use. Then the food started coming around to place on our skewers: the doughy bread you see so much, sliced potatoes, red peppers, corn on the cob, and eggplant to start. Then came the protein: beef, pork, chicken wings, hot dogs and tofu. They had two different sauces to brush on: a spicy mixture and an oil, garlic and salt mixture. The corn was very good, but the beef was as tough as it gets, so I didn’t pursue that because of my chewing issues. For most of us, it was more of a tasting experience than a true lunch, but as with everything here, it was unique!

Me and Zarko

The girls in China adore Zarko, and wherever we go large groups of them want to pose with him. Vito is also a hit with the girls. We even got to experience Ron’s popularity with the Chinese in general; they evidently find his larger stature intriguing. At one point Zarko, Vito, Ron and I were all sitting and skewering at the park, minding our own business, when a group of Chinese young people came over to us, never speaking, and took turns posing between us and taking pictures as though we were props or something!! So strange!

Remember that we came on this trip in a van and three taxis. Well, when it was time to return to the hospital, the taxis were long gone — and you can’t really catch a taxi in a park in the mountains, so there was some question as to how we would all get back. We suggested to the interpreters that they go ahead and take one group back in the van while some of the others were still finishing up eating. It was around 5:00 by this time, and Mom, Evelyn, Ron and I had to get to the hotel they’d checked into earlier, so we opted to leave. As we moved toward the van, it was very apparent that most everyone was ready to go, too! We found out later that it was as late as 7 before some of them got back. Just a little hint to those not familiar with diseases like ALS or MS: We fatigue pretty easily! I think it took most of the weekend for most people to recover.

I have some good news and some temporarily disappointing news to mention regarding my status. Based on some readings this morning, my arm strength has continued to improve some. Amen to that! My left leg, however, has progressed further — it’s become clearer to me in the past two weeks. That being said, we are to expect some ups and downs during treatment, so I’m believing that my body is just preparing for the “ups”!

This past Sunday we had to say more goodbyes … to the family from India who came for their son with a growth disorder (they are to return for future treatment), and to Mya, the sister of Nghia (the Vietnamese man from San Francisco with ALS).

Kamal (right)

Lastly, we had to say goodbye to our dear friend Kamal, who returned with his dad to Bahrain after two months of treatment for his MS. I am happy to say he was able to stand on his own before leaving. God’s grace to all our dear friends and family near and far.

“I will never give up hope or stop praising you” (Psalm 71:14 CEV).

Much Love, Kisses and Misses,
Me 

A night on the town during the Red Lantern Festival

MONDAY, MARCH 8 — Well, it’s finally happened: Mom has popped her cork. She has found her voice in a foreign land. She is, once again, the — I’ll say assertive — woman she is in Tennessee. I’m not sure whether I can say I’m relieved at her new-found comfort of exercising her rights or if I’m a bit fearful.

Going to the grocery store in China is a battle of the fittest. Once you’ve picked out your fruits and vegetables, you then take them to an employee located around the perimeter to have them weighed and receive a sticker that is necessary for purchase. You learn quickly that the Chinese do not follow our custom of waiting in line. You literally must push yourself as close as possible to the people in front of you — and then, as soon as their produce leaves the scale, you have to throw your arms out and shove your produce onto the scale before anyone else can shove theirs in front of you. We have sufficiently mastered this skill, but the checkout line is another matter.

There are many registers and many “lines” because there are many people! So you get behind someone in the “line” and wait. Suddenly you find that you’ve moved further away instead of closer because someone has casually walked over and stepped in front of you. Well, at the market the other day, Mom had had enough. First, two women walked alongside the line in front of her, motioning to let them break line. Mom smiled, firmly motioned for them to go to the back of the line, and said (as though they could understand), “No, that’s the end of the line!” A little taken aback, they slowly walked away — staring and quietly exchanging their hieroglyphic language. I’m sure they were saying something nice under their breath.

Day at the market: Me and Ranco with other "residents" of the hospital whose names I don't yet know. The woman is from India and is here with her husband, Conan, and their 5-year-old son who has a growth disorder. She doesn't speak any English. The man is Vietnamese but lives in San Francisco and has ALS. He's here with his sister, Mya.

Mom was finally approaching the register when a man with one item came up, waving it at Mom and her full cart of groceries. Mom motioned “no” with both hands, waving and pointing him to the back of the line. Ignoring her block, he nonchalantly walked around her, casually laying his item on the counter ahead of her. Mom then smiled at him, picked up his item, and casually placed it behind her stuff. There were snickers and giggles from those standing around, and even the cashier stood firm in Mom’s defense! In all honesty, the cashier was probably a little afraid of what she might do next. We’re officially calling this event “The Liberation of Sherrilyn in China.” No one can hold her back now. Help!

Vito, Mom, me, Zarko, Cady and Ranco

I don’t believe enough can be said about the food experiences here. There’s always something to talk about when it comes to that subject in China. The other night we decided to have a “night out on the town.” We met Dr. Ming’s assistant, Cady, last week, and she eagerly offered to take a group of us out to dinner one night. We finally took her (and a couple of her friends) up on the offer and set a date. We wanted them to make a recommendation, but they were very noncommittal. Finally, we asked if there was a restaurant that served Western and Eastern food because we’d heard rumors of such places.

Taxi ride into town

So Mom, Zarko, Ranco, Vito, Teresa, Mya (a Vietnamese woman from San Francisco who is accompanying her brother with ALS), John the translator and I were led by Cady and two of her friends to Jono Chinese-Western Restaurant. It started out promising, with a low-lit classy atmosphere — even live jazzy-sounding piano music accompanied by a woman with a beautiful voice sitting at the microphone. The waiters were well dressed — and there were many of them. The book of a menu showed steaks and pastas and salads and all things yummy for us Westerners. We were excited. At this point, though, we did notice that no one else was in the restaurant — and it was HUGE. It took awhile, but everyone ordered. This is where the excitement ended.

Filet mignon? No such luck.

One plate at a time was brought out over a long period, along with communication regarding the unavailability of quite a few menu choices. We were finally told there was only ONE cook in the kitchen — meanwhile, there were 10 or more wait staff! Zarko ordered spaghetti with meat sauce and basically got elbow pasta with ketchup. Mom and I split our food (a very strange combination). We ordered “filet mignon” and got some type of chopped steak. Mom saw the words “Italian pizza” on the menu and felt for sure that’s what we were going to get — but no, it was the same disappointing dish they call “pizza” everywhere we’ve gone. We ordered a leafy salad, but they brought us a fruit salad and said they were out of leafy salads.

The mysteriously dull orange drink

The funniest thing ordered was near the end of dinner by Mya (thinking this would improve the experience). She was sitting far on the other side of the table, so we couldn’t really talk to her, but she had this large, orange frothy drink with a fancy straw and some other adornment sticking out of it — it looked SO good. We don’t understand why, but even though it had some kind of texture of pulp, it tasted like NOTHING …  basically like water! We got quite a laugh out of that, and it pretty much solidified the evening. You know the saying, “When in Rome … .” Well, it seems to be true in China, too. When in China, don’t order Western food!

Cady (center), her boyfriend, and friend

… That is, unless they have an American food chain! Ha ha. By far the most popular American fast-food chain in China is KFC — that’s right, not McDonald’s! — and we know of at least two of them in Huaihua. It took us almost a month before we tried food from KFC, though. To be honest, we don’t eat KFC when we’re at home, and the thought of eating chicken here was a little off-putting! We had heard they don’t cook their chicken enough. Well, their fish sandwiches and french fries are great! Yes, we’ve been bad and have occasionally gotten fast food. I can’t tell you how good it tasted to have a fish sandwich with tartar sauce and french fries with ketchup! We were so happy to find that some things are consistent. On the flip side, though, they do have things our KFC doesn’t — such as corn on a stick!

Night on the town in Huaihua!

It has been such a blessing having Paul and Li Jang here. Mom and I have been able to have our own devotionals together since we’ve been here, but now we’re able to worship with other Christians. Paul used to preach and has such a heart for God. Teresa also joined us in worship and prayer, and I was so glad she did. She had to return to Michigan on Sunday morning, and we will miss her greatly. Vito also will miss her, but we hope we can help deter some of his homesickness.

Every day brings us closer to the day we can return home. I want to make sure I use every opportunity I have here to heal. Part of this effort involves the mind — the part most of us forget to acknowledge plays a huge part in our health. Many things drive me internally to push myself — sometimes to unhealthy levels. My mind needs to be centered on health and healing and not on sickness and progression — something that is difficult to maintain at all times in the midst of this disease (especially with the added emotional lability). But, that being said, I am reading, meditating and praying so that — with God’s help — I can turn this disease upside down and be healed. Please continue to pray for my journey here — physical, mental and spiritual — and for all the people with whom I walk a similar path here each day. Thank you for being on this journey with us. We have never once felt alone, and that’s because God has spoken through each of you.

“… My purpose in writing is to encourage you and assure you that what you are experiencing is truly part of God’s grace for you. Stand firm in this grace.” (1 Peter 5:12)

Note from Phillip: I had to put this in. Christy is OBSESSED with all these funky refrigerators in China and desperately wants one for her and Doug's new condo! She's trying to figure out how to have one shipped home. I wouldn't at all blame the Chinese people for staring at Christy ("crazy woman who keeps having her photo made with refrigerators") in this case!

Much Love, Christy

P.S. March 8 is Women’s Day in China. You guessed it: fireworks.

Mom and I at the salon

SUNDAY, FEBRUARY 28 — It’s been two days in a row now that we’ve awakened to the lovely smell of sewage. We keep looking around our room trying to find a dead animal. Thankfully, it doesn’t just seem to be in our room. I only say thankfully because at least we know it’s not us that stinks! We’re hoping the hospital will hold up long enough that we’ll still have workable toilets by the time we leave. Well, at least the carpets get mopped (tee-hee).

We got our first care package from home! Of course, Doug and Phillip sent things we requested, plus a few surprises. One item I was so excited to get was my perfume. Being the “sensible” person I am, I felt it was a luxury I wouldn’t need in China. Well, I’ve come to find that it’s the little luxuries that make all the difference in the world! Things like peanut butter and Doug’s homemade chocolate chip and chocolate chipless cookies (just for me!) make you feel like you’re, well, alive again. These things are like home — comforting.

Speaking of home, Doug was finally able to close on the purchase of the condo we’ve had a contract on since mid-December! Hallelujah!!! This is our fourth home purchase, and we have NEVER been through the ringer like we have this go-around. What’s crazy is that we downsized to a property one-third the cost of our last home! Oh, well, it’s all probably for the best. We’re having to do a complete demolition of the condo, and I’m supposed to design the interior to the full extent (handicap accessibility, plan, elevations, details, materials and finishes) all while in China! I did the basic space planning before I left, using the footprint I drew up from site measurements, but that’s about it. I haven’t really had a chance to work on it since I’ve been here. Having a place for Doug and me to call home again is something to look forward to, since we sold our last one because of my progression. Of course, to me “home” really is simply being back in Nashville — so that is enough for me! In the meantime, Phillip generously opened up his house as our temporary home, and Doug has been not only more than comfortable, but it has allowed them to support one another. It’s also great because I get to talk to both of them with one video chat! The whole temporary situation is such a blessing!

Vito from New York and his sister, Teresa, from Michigan

We are getting to know Paul and Li Jang from Houston and Vito from New York, along with his sister, Teresa, from Michigan. Paul and Li Jang are precious people. Paul is a gentle and kind man who has a form of ALS called Progressive Muscular Atrophy that has resulted in the slow loss of muscle strength all over his body. He is originally from Taiwan but has been in the States for most of his life. I’m not sure of Li Jang’s background yet, but she has a quiet spirit of strength, is a wondrous helpmate to Paul — and is an awesome interpreter!

Vito with Paul and Li Jang from Houston

We have already benefited greatly from her knowledge of Chinese. Now we can find out what kind of meat is in this or that or answer questions that strangers pose to us. Teresa and Vito have a zest for life and want to try everything. Vito has the bulbar form of ALS, which means he has speech and swallowing problems but his arms and legs have not yet been affected. Teresa is only here for three weeks with Vito before she must return home. We will be sad when she has to leave.

For those who may not know how ALS has progressed for me, I want to tell an abbreviated (believe it or not) account of the last two years leading up to this adventure to China. In December 2007 at a Christmas party, I wore chunky heels that I’d worn the month before without a problem. But on that night, my right foot kept “falling” off my shoe. I appeared drunk because I couldn’t walk without stumbling. I thought I’d possibly injured myself because I had been working out five to six days a week for more than a year on our elliptical, followed by Pilates. This weakness in my foot progressed to a worsening foot-drop during the course of a year. I couldn’t wear sandals or flip-flops anymore because my toes could no longer grip and my foot dragged, causing many trips, falls, and general difficulty in walking. I constantly had to stretch my right calf because of the worsening stiffness, and my foot and calf stayed cool to the touch. Even the color of my toes became bluish.

By the close of 2008, I’d been prescribed a leg brace (but no answers from the medical community) and was noticing a slurring in my speech that no one else was noticing at that point. After exhausting the “best” western medicine in Nashville with no answers, I went to the Mayo Clinic in Rochester, Minn., in January 2009 (just over a year from when the symptoms started). They unofficially told me it was ALS and instructed me to return in six months to do a repeat EMG. I had noticed very little fasciculation (muscle twitches that indicate muscle death) at this point, but my doctor told me he could see them in both legs. I returned in July and was handed the official diagnosis of ALS. By the time of this visit, I hadn’t had use of my right foot for quite some time and had continued to experience calf stiffness along with the cold/bluish appearance of my foot. I had general weakness of both legs with more fasciculation and worsened walking ability. My speech was worsening, I had more difficulty chewing food effectively because of tongue and soft-palate weakness, and I had noticed emotional lability (uncontrollable or exaggerated crying or laughing). I quite enjoy the laughing part.

Getting ready for my foot massage at the salon!

By September my left foot subtly began to follow the same pattern as the right. Now I was stretching both calves frequently because of the stiffness, and the left foot was staying cooler. By November my left foot-drop was more apparent, and I was told I needed a brace for it, too (I still haven’t gone to get one, though). My speech and chewing ability had worsened. Around the end of November or December, I was noticing right-hand and generalized bilateral arm weakness with my right hand feeling cool at times. I couldn’t open things as I had and was having some difficulty turning my key in the car ignition. (Yes, I was still driving because I could still apply pressure on the pedal with my thigh muscle. Lifting my foot from the gas to the brake in a timely manner was another story!)

By the time I made my way to China on January 17, I had right foot-drop with my right calf showing atrophy (muscle wasting), progressed left foot-drop, bilateral upper-thigh weakness with fasciculation, speech/chewing problems with occasional tongue and lip fasciculation, right-hand and generalized bilateral arm weakness with fasciculation and lower back fasciculation. This disease is unique to every person in how it presents itself. Some experience leg weakness first, some arm weakness, and some have speech problems. It also progresses at different rates.

I saw this precious little thing one day when we were out to lunch

It comes on subtly but is relentless. The subtlety is experienced when you start questioning something you never thought about before, because your body “just worked.” We take for granted all of the infinitely miniscule — yet necessary and miraculous — body processes God created to make us function normally. All of a sudden you realize your toes aren’t clamping down on your flip-flops to keep them on. All of a sudden you start having difficulty pronouncing certain letters in words and can’t talk as fast without getting short of breath. (I have trouble with the “st” sound, which is like a bad joke since my name is Christy!) You start wondering if these things are really happening or if it’s all in your head — until the problem worsens.

My progression seemed to start worsening at a noticeably faster rate after August. The good thing is that since I’ve been here, I don’t think I have progressed any further. It’s very hard to tell the subtleties from day to day, so sometimes it’s a little frustrating when the doctor and acupuncturist ask me every day if I’ve noticed any changes. I know they do this so they can know how to specifically treat me, but because of the way I am, I feel like I’m letting them down if I don’t tell them I’m doing better! I remind them often that “I’m trying to get better” so they know I’m doing my best!

Mom in the massage room at the salon. She's wearing gigantic earrings that Phillip sent her in our care package as a joke (to impress the housekeeping staff -- they're always interested in the earrings she's wearing). But we actually liked them, and she's wearing them anyway!

We are very thankful that we have already seen some positive results with less stiffness in my jaw and tongue with clearer speech. Other people hear the improvement more than I do, but I’m glad they can tell. Also, I feel like the fasciculations have lessened —a very good thing. I would love to say I’m walking better and can stand without losing my balance, but sometimes miracles take time!

Zarko getting a shampoo

So enough of that. … We did experience something new the other day and had yet another adventure. We were told about a beauty salon a block away that provides wonderful shampoos with head massage and great foot massages. Whereas I used to love to walk all over the place and a block was nothing, I now have to plan distances carefully. It’s best that I use a walker, but I try to get by when I can with taking someone’s arm or hand — in this case, Mom’s (though I’m offered many hands and arms here!).

Teresa and Vito at the salon

Zarko in the chair

To get from point A to point B, I needed to go down three floors (six flights of stairs), walk a block, and then climb about another 20 steps to enter the salon — plus, of course, return! Our group of Zarko and Ranko, Teresa and Vito, and me and Mom made our way along the trek, passing many a shocked Chinese expression. Whew! I was sweating and quite tired by the time we got there. I almost turned back mid-trip but decided to “just do it.” After the usual confusion (we had a piece of paper with us listing the different services we needed, written in Chinese, such as “wash and dry hair”), we were all put in different areas. Zarko had a shampoo, full body massage, and hair cut (his dad finally won the argument) — all for the equivalent of about $5! Teresa and I thought we were getting foot massages, but it turned into a full body massage (with emphasis on soaking and massaging the feet) that lasted more than an hour, also for the equivalent of $5. That also included, of course, the complimentary cup of hot water that is offered wherever you go in China!

Vito and Ranco waiting in the salon

We originally planned to catch a taxi afterward to take us up the hill to the back entrance of the hospital so I wouldn’t have to walk back so far and take so many flights of stairs, but the stubborn goat that I am (Capricorn — ha ha) ignored the good advice and paid for it dearly with exhaustion. Not only that, but my stubbornness made Mom pay dearly, too, because she was the one I was hanging onto all the way back!

"After" shot: Zarko with his dad (in his usual pose!)

The time here seems to be getting longer! We miss you and covet your daily messages to us. Much love to all.

Christy

I wait quietly before God,
for my victory comes from Him.
He alone is my rock and my salvation,
my fortress where I will never be shaken.

(Psalm 62:1-2)

P.S. Today was the Lantern Festival … yet another reason for fireworks. Great.

MONDAY, FEBRUARY 22 — It’s funny how place is so related to the people who inhabit it. We have been here a month and have said hello and goodbye to many people already.

Sherry

First we said our farewells to Sherry from Canada.

Kathi

Friday we said our farewells to Caiti — whose name, by the way, I was wrong about the whole time. I said it correctly (as far as Austrians pronounce it), but her name is actually Kathi or Katherine. Her presence is sorely missed.

Arti and Andon

Sunday we said our farewells to Audie — again, it’s actually Arti — and his dad, Andon, from Albania. Their presence is also missed.

Zolma and Roberto

Finally, today we say “adios” to our Argentinean friends, Zolma and Roberto, who have been like parents to me since I’ve been here.

Though we don’t speak Spanish and they don’t speak English, somehow they have been the best of companions and neighbors. As all these special people leave us and return home, we are so thankful our lives have crossed. Being away from home is bearable because the place where we find ourselves is filled with these people.

This week has brought many new people to our unique community. We now have a family from India, a brother and sister from San Francisco, and a man from NYC accompanied by his sister from Michigan. An expected delight was the arrival on Saturday evening of a couple from Houston whose daughter had contacted me soon after I arrived here. What a blessing to meet someone we already have a special bond with through the miracle of the Internet! I’m not sure why, but we seem to be having an American invasion in Huaihua!

The holidays have really thrown the schedule off around here, and somehow that has resulted in more outings. Also, because so many are coming and going, there’s generally more activity anyway in meeting new people. I tend to be stubborn when it comes to putting a limit on myself, so as of today (with Doug’s stern persuasion), Mom has created a “RESTING” sign for our door that’s written in Chinese and English. I think I pushed it a little too much this week. I haven’t even had a moment to write a new blog entry until now! It’s very strange to say how busy we are, but we really are! That’s probably a blessing in many ways, but I sometimes have trouble balancing that blessing.

At the hospital construction site

Last Tuesday we all went on an outing to tour the new hospital’s construction site. Because the success of this hospital is attracting so many international patients, the government has provided Dr. Ming with land and money to build a new hospital in an outlying area. As we drove about 15 minutes from Huaihua, the landscape became more rural, with mountains all around and what looked like small farms dotting the countryside.

The area is mountainous.

Suddenly we turned to climb up an earth-turned dirt hill, and it became apparent we were at a construction site. A large unfinished structure was sitting in the middle of the site with hills on all sides and mountains encircling us in the distance.

Puppies!!

As a side note — one of our delights to see as we walked the main floor were two little white puppies running around playing! From what we could tell, they belonged to one of the workers. The cutest thing was that they even looked Chinese!

Mom with a puppy

I took many pictures because, you know, we don’t have puppies in the United States. :)  Actually, I just love dogs! Emily and Lori understand …

As we were looking around this bare-bones structure, Dr. Ming shocked us all by telling us the hospital would be finished by June! The wonderful thing is that this new facility will be situated in much cleaner surroundings, without all the fossil-fuel pollution that is so prevalent in Huaihua. Plus, the mountainous surroundings are much more serene. We walked the structure (this was a little challenging and pooped me out!) and saw that the patient rooms are twice the size they are now, and the building will have elevators, ramps and handicap accessibility (novel idea for a hospital!). You can see from the pictures how unfinished it is right now, so everyone scoffed at the timeframe for completion. That was until …

We hopped back in the van and went around a large hill, surprised to see a small town existing in the middle of this “nowhere” right behind the hospital. Dr. Ming explained that this “New City,” Zhongfang, was built only three years ago and was already home to 10,000 inhabitants — and he claimed that by summer, there would be 30,000!

The new city of Zhongfang

The new hospital will actually be called Zhongfang Red Cross Hospital. They drove us around, and there were six-story apartments and villas everywhere, a shopping center, a school for languages, government buildings, and a large, tiered courtyard with a playground and fountains. He explained that Zhongfang building codes limit the height of buildings to six stories so that everyone has a view of the mountains. We all made comments about how nice and clean everything was, but then we joked that it probably wouldn’t be that way for long.

More construction

We were blessed to get glimpses of spring this past week. The weather didn’t require as many layers and heavy coats. Of course, if it’s anything like Tennessee, we could wake up to a snowstorm in the morning! Speaking of cold weather, when we first got here, I noticed at one of the “open garage” stores that there appeared to be a wooden casket sitting on the street. I therefore thought this place made and sold wooden caskets — odd, I thought, but not the strangest thing I’ve seen. The very next week, though, Sherry told us a story that revealed the mysterious truth of the caskets …

Hospital staff members are not allowed to take patients to their homes. Sherry and her husband weren’t ones for following rules, though, so when they were invited to an employee’s relative’s house, they didn’t hesitate. They even left the hospital in separate taxis so no one would be suspicious.

It took a train ride to get there, and upon entering the relative’s apartment, they were encouraged to take their shoes off at the door. (Honestly, this is such a good custom for keeping the grime and ick outside your home! I’m sorry — an OCD moment!) Anyway, Sherry said she could instantly tell the apartment had no heat, which is evidently not unusual in China. They were led into the living room where all the family was sitting around this large rectangular box with their feet inside — not a casket, but a foot heater! They were invited to join the “foot-heater party” and were given blankets to cover their legs and laps. Sherry said everyone’s feet were touching each other’s inside this box, so she put her feet on her husband’s. At least that’s what she thought. When her husband got up to go to the bathroom, she realized her feet had been sitting on top of the grandfather’s feet instead! This brings new meaning to family togetherness.

These heaters are made like an upper box within a box, with the heating element in the bottom box. If there is no electricity, you can put hot coals in the bottom of the box. These contraptions come in all sizes. The security guard at the hospital uses his own personal small foot heater each night as he sits in the cold hallway with a blanket covering his lap — his shoes lying by the box.

This family (and their dog, of course) befriended me in the mall one day because they wanted to hear me speak English. (What is it about me?)

Many people also do not have hot water, so they use small plug-in coils that can be placed in water to heat it. I actually bought one of these larger coils to put in my herbal soak every night to heat it. I was amazed (and a little concerned) as I plugged in the coil, which smoked almost immediately with heat, and threw it in the bucket of water! A very safe practice, I’m sure. Now Mom no longer has to take the bucket down to the kitchen and boil the herbal water on the gas stove each night for me. The coil is a blessing in this instance, but I cannot imagine this being the only means to having hot water — we are so spoiled!

WHAT???

By the way, we’ve been trying to watch some of the Winter Olympics and have been wondering, Is curling the only event this year?!?! In case you don’t know what it is … it involves a big round stone with a suction cup on top and two mops that clean the ice to win! I’m not sure why it’s even considered a sport, but evidently the Chinese must be good at it because it’s all we’ve seen for three days!

Treatment continues to go well as Zarko and I compare quantities of needles and techniques. Our tea mixtures change every week or so. We also compare our teas with one another (as we do with some of the other patients), and they all smell and taste different. The only thing they have in common is their disgusting taste. Mine now has this wonderful coffee-ground-type sludge awaiting me at the bottom of my cup that I have to swish around and swallow in my last gulp. Good stuff.

I will praise the Lord at all times.
I will constantly speak His praises.

(Psalm 34:1)

We love you,
Christy