I write to you today as I wait for the results of my thyroid blood tests, which will determine whether or not I am fit for surgery next week. I developed a hypothyroid issue after my accident, but I had been pretty confident that my thyroid levels were back to normal before moving to China. Apparently, the Chinese do not agree, but I’m still unsure as to why a thyroid issue would hold up my surgery. There seems to be some sort of lost-in-translation challenge here, which I’m going to try to figure out today.
The last week has been extremely rough for me as the neuropathic pain levels are escalating on a daily basis. Some days the pain leaves me completely “paralyzed” for lack of a better word and in bed most of the afternoon. I’m going to the hospital rehab center every morning for several hours of exercise and standing, but unfortunately the vigorous exercise just makes the pain worse in the afternoon. So, I need the work-out to stay fit, but the exercise kills me at the same time. Some cruel paradox!
On a happier note, I had a pretty “good” pain day yesterday, and I finally got to go out in our new London taxi for my first outing into the center of Kunming. We went to this massive outdoor/indoor, seven-story super shopping plaza called Carrefour. I was accompanied by our two dear friends and neighbors, Sandra and Pierre, as well as by my sister Tiffany and my mother. We had a lovely lunch on the rooftop of this shopping center in a restaurant that was kind of a mix between Indian and Chinese cuisine.
I have been taking my manual chair out most days, because in China there is literally one step everywhere … from what I’m told this is because the Chinese do not want bad spirits to enter their shops or restaurants. Talk about a quad nightmare 🙂 Luckily, I have an extremely light manual chair, and so it was no problem for Pierre to just pop me up over every little ledge that we ran into. I must say I do get a lot less strange looks in my manual chair as compared to my power chair.
There’s one picture attached here that I have to comment on. You will see a KFC that looks as grand as any Ritz-Carlton. In China, KFC and Pizza Hut are both considered gourmet sit-down restaurants! And people wonder why the Chinese are now becoming obese! Oh, how about that doughnut-off-the-wall photo? I think Dunkin’ Donuts may have some serious competition here.
I did have one guilty pleasure yesterday as I was craving something foreign. We stopped at Starbucks, and it is amazing how Starbucks has such a consistent standard throughout the world. The one exception I noted is that there are no “light” fat-free, low-sugar, low-carb type drinks on offer here. If you want to order a Frappacino … well, you get a pure Frappacino, no exceptions.
If my pain levels hold out, I actually have a lot planned this weekend, when I intend to go check out a local restaurant called Salvadore’s Coffee House … http://www.salvadors.cn/ … with a few friends and also to check out this gorgeous lake that is located right in the center of Kuming. I’m trying to go on as many expeditions as possible before the surgery, because after recovery from surgery I will be in the rehab program all day, every day for six days a week. Sundays will still offer break time.
With respect to the surgery, I cannot tell you when that will be scheduled, but I can offer you with more details on the specifics of my upcoming surgery. Here’s the English tranlation of a personal letter Dr. Zhu Hui wrote me last week laying out what I will be going through over the next few weeks and years.
Welcome to our centre! We’re all part of the same family now.
I am extremely thankful for the trust you and your family have placed in us, and I cherish this trust.
I am keenly aware that you were a very active girl who used to move about as she pleased – a beautiful young girl with a bright future ahead of her. An accident forced you into a wheelchair. This is not only painful for you, as it is also torture for your family.
As a doctor specialized in treating spinal cord injury, I truly understand and sympathise with you, and I sincerely want to help you. Let’s work together！
However, you have a very severe, chronic, complete spinal cord injury. You have neuropathic pain, spasticity, osteoporosis and other complications.
Your MRI shows：At the C5-C7 level there is an arachnoid cyst measuring 2.7 x 0.7cm on the anterior cord which is compressing the cord by about two thirds. At this same level, malacia can be seen inside your spinal cord.
The surgery we will be performing on you will include removal of the arachnoid cyst; clearance of obstructions to cerebrospinal fluid circulation; loosening of nerve roots that are currently compressed together; a Greater Omentum graft; and internal fixation with a system of screws and rods.
The idea behind this surgery is to put an end to the severe pressure the arachnoid cyst is exerting on your spinal cord, to restore the spinal cord to its normal position and to restore circulation of cerebrospinal fluid.
However, what this surgery cannot do is regenerate axons, for at present there is no recognised method for successfully regenerating axons.
After surgery we will start you on the Kunming Walking Programme plus holistic rehabilitation training. We believe that this will awaken and restore surviving axons in your spinal cord, that you will then recover the greatest possible degree of motor and sensory function, and that your quality of life will improve.
I cannot predict the extent of your recovery, and I cannot make any promises. We will have to work together, and step by step we will gradually get you to learn to stand on your own and then to walk with assistive devices. However, I know that it will not be possible to restore you fully to your normal pre-injury condition.
This will be a long and arduous process. You may not notice any obvious change in just a few days, but if you persevere, as the weeks and months go by you will definitely see progress and improvement.
The Kunming Walking Programme is based on repetition of specific methods of walking training, and it is not until one stage has been completely mastered that you can move to the next stage. Throughout this process there are times when it feels very monotonous – you just have to be patient and endure the loneliness of it!
You have to have the kind of spirit that can bear hardship: “You reap what you sow!”
The results of our rehabilitation training and the time it takes differ from one person to the next, and outcome also depends on individual expectations. The higher your expectations, the more time it takes, and the more time you spend the better the results of the training.
It’s not hope that makes you persevere, rather it’s through perseverance that you have hope!
Let’s work together!
21 March 2013”
Just a quick update …
I spent a lovely Sunday afternoon with the family and some neighbor friends at a hole-in-the-wall “dive” Chinese sidewalk restaurant with doll-sized stools to sit on. The restaurant’s family owners cook delicious Schezuan cuisine despite our being in Yunnan Province. Altogether 6 amazing vegetarian dishes ordered for five people cost us RMB 55 … or about US$ 9 total, service included.
The most exciting part of the weekend arrived late Sunday afternoon, when one of my brothers’ Chinese friends and business partner drove a new handicap-accessible “London Taxi” right into our driveway! Our friend’s name is Shaojun, and his cross-country trip from Shenzhen covered 2,000 km in 3 days. What a great family friend Shaojun is!
And yes, you heard right … an actual London Taxi. All London taxicabs are required by law to be handicap-accessible, and, despite being built in Shanghai in recent years, there were only two for sale in all of China! Seems only 1000 of these hand-made cars are built each year, and obviously almost all of them are exported to England, because in London about 1,000 taxis are worn out and retired each year..
So, picture this … already it appears that I am the only blonde quadriplegic chick in a power wheelchair in a city of 6 million. Now, I am almost positive I will be the only one tooling around in a black London Taxi … not to mention the gold dragons I intend to have painted on each side!
Sometimes I wish I could video for you all the looks the Chinese give me every day when I am rolling down the sidewalk in my Permobil wheelchair. They usually stop and stare… and then a huge grin comes over their faces as they give me two thumbs up and say in Chinese “hen hao,” which means “great!”
I’m headed over to the hospital to workout right now and should have an update on the exact details of the surgery shortly, which I will share with you all tomorrow. Meanwhile, here are some snapshots from Sunday …
In the “be careful what you wish for department,” I went to the hospital yesterday afternoon and was told that my training program would begin even before surgery, as in immediately! However, I will not start the six-hour-per-day program until the surgery, because the neuropathic pain is still too intense during the afternoons.
I woke up at 5 AM this morning in order to get to the hospital by 8 AM where I was met by the entire rehabilitation staff and patients for a 15 min. English lesson, which I am to help teach five days a week. I was a little startled rolling into an entire roomful of people waiting for me to teach them something. I decided to stick to the topics of gym and rehabilitation vocabulary. I taught the phrase “to pick up one’s leg” this morning, and I had my sister write the characters on the whiteboard for me, which I must say she did very well since it was first time she had ever written a Chinese character in her life. I had the entire group repeat the sentence back several times, and then they all cheered for me at the end of the lesson as if I had solved world peace or something. I thought this was quite adorable, but things quickly got more interesting.
All of a sudden I am pretty sure the Chinese national anthem started playing and the entire rehabilitation group broke out in a dance/stretching/singing routine. All eyes were on me trying to see if I could keep up. I was seriously dying laughing inside. I’ve attached some pictures for you. I was told we will begin each morning with the same routine 🙂
My program includes five different exercises each day, which will last for about three hours. After my surgery I am assuming I will spend the second half of the day walking up the hallways. Most of the exercises range from pull-ups, hip rotation exercises and one hilarious one where they bind your legs on one side and then strap your hands in on the opposite side like a marionette puppet (also, think of a pulley system). Since there are no actual weights to be found anywhere, you pull your own leg weight up and down. I thought this was quite interesting until about 30 min. later, with no breaks, and I’m still trying to pull my legs up and down. I think they forgot about me for while, because I felt like a dead puppet. Needless to say I got quite an upper body workout and will continue to do so every morning.
I thought today was done until they broke out the leg braces and told me that I was going to stand for the first time to prepare for walking! The braces went up to my thighs, and then 4 physical therapists stood me up in the walking frame where I stood for about 15 min. Try to envisage 4 average small Chinese people trying to stand up a 5 ft 9” girl literally twice their size … it was dicey for a few moments there. They told me I would start slowly and work my way up standing for an hour until my balance got better, at which time I would then begin starting to walk down the hallways! It was a pretty intense day, and I am a little exhausted, but I better get used to it because this is what I’m here for.
All -in-all a pretty intense start to the program, but I would not have it any other way.
I’m working feverishly at improving my Chinese at a rapid pace by asking all the patients what this is and what that is every second. They find it so funny that I constantly study on my Galaxy S3 smartphone.
I just got home from the hospital rehab center and am now waiting on the massive crate my brothers sent over from the United States, which includes my bed, exercise equipment, and boxes and boxes of stuff. It actually arrived in Kunming over a week ago, but has been stuck in customs. In hindsight, I didn’t really realize how little “stuff” I use on a daily basis as compared to when I was in the United States. I think Chinese customs has been our biggest headache yet. Like everything in China, there is an art to getting things done, and we just have to figure out this particular dance.
There are some days in China that we call “Mafan” days, which basically means trouble keeps coming around every corner. Maybe “Murphy’s Law” in western countries.
Yesterday was one of those days, as we spent a crazy amount of time trying to negotiate with a Chinese caregiving agency and my two Chinese caregivers over monthly wages and scheduling that had already been formally agreed in writing two weeks ago.
As you may know, the Chinese like to negotiate, and we spent almost the entire day going back and forth. Of course, being one of the only foreign families in the area, not surprisingly some locals will try to take advantage of the newcomers. But we certainly have set them straight on that score!
While my two Chinese caregivers are very hard-working, caregiving in any country has potential to be quite a headache. I must say I’m a little burnt out on the subject after two and half years of caregiving hell in United States.
On a completely separate and really delightful note, Dr. Zhu Hui and one of her nurses made a house call yesterday morning around 8:30 AM to draw blood from me and to drop off some x-rays that had been made to determine whether my bones are strong enough for the walking program. My surgery is being temporarily postponed because my blood work indicated I have a thyroid issue that needs dealing with first.
So, my blood is being sent around to endocrinologists at three major universities in the area to determine if my hormone levels are acceptable for surgery. Also, my x-rays indicated the beginning stages of osteoporosis and thinning around the edges of some of my bones. This is not surprising for a wheelchair-bound person; however, I now have the green light for the walking program, but I just have to start a little bit more slowly so I don’t have any injuries with brittle bones.
As you can imagine, I’m a little disappointed that I still have to wait to have my surgery, but on a really adorable note came a little surprise that went a long way to compensate for the caregiver distraction.
Dr. Zhu told me I needed to be consuming more calcium, and this is where things become very Chinese. For Dr. Zhu has a farmer friend whose speciality is making amazing goat cheese from scratch. So she brought over to my apartment a HUGE chunk of hand-made goat cheese wrapped in a very old-fashioned cheesecloth, explaining to me that this goat cheese was not only low-fat, but that it would help me improve my bone density. Seriously, now, think about this! My renowned neurosurgeon personally made a house call to take my blood and at the same time brought me hand-made goat cheese to improve my bone density. I’m just speechless … and grateful, too!
Later on in the afternoon, after having quite a headache from the Chinese caregiving negotiations, my sister Tiffany and I decided to walk around the apartment neighborhood where we live. I’ve posted a few pictures and honestly it is like “Pleasantville” with a really Chinese twist. We came across new houses with these incredible Imperial Gates, one with a yellow Porsche in the driveway, elaborate gardens like something out of the Secret Garden, basements turned into garages like “Batcave” in Batman, a glass roof and others with weird Chinese lawn ornaments. The Chinese really love their cars, too. Seems like there are more Ferraris, Maseratis and Porches around here than in Miami — and that’s saying something!
Tiffany and I only scratched the surface of this neighborhood yesterday and plan to keep on exploring the little lanes and cul de sacs. Although, next time I think I need a good Padron cigar for this walk because I almost fell out of my wheelchair laughing at the absurdity of some of these houses。
It is now mid-morning on Thursday the 21st and I am about to head to the hospital this afternoon to inquire about what it is exactly I am supposed to be doing while I am waiting for surgery right now. I’m going a little crazy with impatience, so I guess I’ll start practicing standing or getting some exercise by wheeling my wheelchair up the hallways. Honestly, I really don’t know right now, but hope I start some sort of routine sooner rather than later.
I’m sitting here with my sister this morning with a few hours to spare before I have to head back to the hospital. We are just pondering how to write this post because it could be a comic relief novel with what has happened to us over the last 24 hours.
After my antibiotic IV drip yesterday, my sister, my dad and I were waiting in the hospital to speak with Dr. Zhu Hui and Dr Liu Yansheng, my neurosurgeon, to discuss pre-surgery preparations. The doctors had scheduled several pre-surgery tests for me in order to check my bone density and to see if I have any blood clots in my legs.
A quick side note: I am sitting here trying to dictate my blog with my sister, and I have my two Chinese caregivers hovering around me trying to tell me that their noodles are inedible because there are too many sand particles inside the noodles themselves! For everything else there’s MasterCard.
So it’s about 3 p.m. yesterday and I headed down with a team of people to the first floor of the hospital to check for blood clots. I had an entire audience of Chinese people watching me try to transfer onto this hard surface with my sister trying to take my pants off and roll me from side to side. I put on quite a show and there were not quite enough lights to see correctly. You may think this is odd, but every other light in the hospital was turned off in order to save electricity. Yes, in the hospital! I sure hope they don’t practice energy-saving tips in the operating room when they open up my spinal cord.
The following test involved transferring me on to a very high table in order to take different x-rays of my bones, and let me tell you it was a very narrow surface. It took about an hour because we had to take eight or nine different x-rays … Why, you might ask? Well, this is a little embarrassing, but I’m going to tell you anyway. Apparently I am too fat for Chinese x-ray machines, and the x-ray machine could not span across my entire hip area, so they had to perform three x-rays just for my hips. I’m really trying to keep a sense a humor about this one.
As you can imagine, my neuropathic pain was quite intense by this point after getting tossed and turned so many times.
As I headed back up to my hospital room ready to leave for home, Dr. Zhu informed me around 4:30 p.m. that we were invited to a formal Chinese dinner in our honor to be hosted by the head of the Kunming Tongren Hospital. Honestly, attending a Chinese banquet was the last thing I probably wanted to do that night. Nonetheless, we all put on smiling faces and said “of course we would love to go.”
The only problem was that my handicap-accessible “London Taxi” has not yet arrived in Kunming, so my sister had to transfer me into the back seat of an ordinary car. We have never attempted this before. I must say it was probably one of the worst experiences I have ever had, so bad it was just comical.
We had no idea what technique to use, so my sister first put my feet in the car and then tried to pick me up, but my head hit the top of the car, I fell backwards, and then my sister and I both fell on top of each other sideways into the car together. It was just plain “ugly” as my prostrate body was hanging half-way out of the car, the Chinese were staring at us, and we just burst out laughing. There was nothing else to do, truly!
En route to the restaurant, we devised a better way to try to transfer me out of the car this time. Yes, it did work a little bit better. Then, I had to be pulled up stairs in my manual chair, and I have to say Tiffany did most of the lifting as the locals just looked at this diminuitive foreign girl like she was crazy.
The Chinese dinner itself was an elaborate and very traditional affair. As is customary for the Chinese, dozens of courses were served on a revolving “Lazy Susan” atop a large circular table. We were joined by executives and physicains from the hospital, by a lovely foreign family thaqt currently lives here and participates in the Kunming Walking Programme and a few other guests .
The dinner lasted the usual few hours with way too many dishes. But I’m actually surprised how easy it is to be a vegan here in Kunming, where the farm-fresh produce is the most varied I’ve seen anywhere in the world. There are alone more mushroom types on offer here in Yunnan Province than there are vegetables of all types on offer in Miami.
We finally arrived home around 8:30 last night and I just crashed right away. I appreciate this post may be a little long, but my sister and I decided to have a little fun this morning with it.
I’m headed to the hospital shortly to discuss pre-surgery preparations as it is likely that I will have my surgery early next week.