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”
Look forward to reading your diary every day. Dusty Sandmeyer
While reading your diary I could actually see everything with the beautiful way you write. Look so forward to all your updates. Pat Keegan
Ali! You’re so crazy inspiring! I feel that no matter where you go you bring joy and hope with your endlessly bright spirit! I’ve only met you once, but I most definitely felt it. I’m sending hugs and happiness you way!
Thank you Ali for all your updates, your strength and sharing your amazing journey with the world. I am praying for your full walking recovery and hope you bring back some positive changes for our most needed health care system in America. lol caroline
We just love reading your blog. Each time I get a lump in my throat, a tear in my eye, and a smile on my face. Such are the emotions your writing brings to me!
Clive (& Danielle, of course) in Bahrain
Just like the letter you would get from an American doctor!!! We too love reading you blog. And the Pictiures are priceless. We are all together this weekend celebrating your April fool uncle !s birthday. Love to all. Your amazing! Diane
Hey, Girl! I cannot believe the warmth and clarity in the letter from your surgeon. I am in awe. I love the photos. Especially crazy hat day. Tiff as a bunny, and fancy KFC. You must be getting quite a workout for your arms in your manual chair! Easter is tomorrow. Please don’t judge me; I am going to eat some Peeps, and I WILL be thinking of when we used to eat them TOGETHER! 🙂