It's Saturday, I arrived at the clinic a week ago.
It has been a week that at times felt like a cross between burning man and basic training (without being yelled at and told to "drop and give me 20". But the ever-present fireworks remind me of the Howitzers in the distance so many years ago.)
Daily treatments go easy and are welcome. Acupuncture now includes needle "pounding" the jaw, alternating each side daily and tongue stabbing. Mmmmm, stabby.
It's really not as bad as it sounds. The hardest thing is keeping my tongue stuck out for longer than 10 seconds. Like most needling (with the above exception) it is generally just an unfamiliar sensation, with the anticipation of pain -- and when it moves to uncomfortable that anticipation is amped.
The morning routine is getting stronger -- and helping. This morning I woke up and felt like lying in bed until the 9am rounds, but discipline is the mother of movement through the moment. Just had to get started -- light the candle, start to pray and soon I was singing the loudest chakra mantras yet!
Then, I read the emails and comments from so many of you -- and I cried, and laughed. They provide an additional source of strength to keep at it.
So, at this point in time, 1/6th of the way through -- would I recommend others diagnosed with ALS to come?
TCM expertise -- these folks live it, and have specialized in the treatment of ALS and other neuro disorders.
Isolation which provides an opportunity for focus and intention.
Community which provides empathy and hope.
Food is foreign, and not just because it's hard to find cows milk, or meat you can trust, or pizza. When you are on a restricted diet (as most of us have moved to) not having access to various gluten-free / organic items, or knowing what ingredients are in the various sauces (hard to read labels when they are in Chinese) -- your diet becomes even more restrictive by necessity.
Not knowing the language, makes you illiterate, and to some extent deaf and mute. Lots of pointing and grunting and frustration as you try to communicate. Yes there are translators, but much of the information is lost in translation or simply not translated at all.
China is rushing into the 21st century. The clinic is modern, as is the supermarket -- but all around there are people living in conditions that are considered by many westerners as primitive. The roads are dirty, the air can be thick with coal and diesel smoke and germ killing cleaners aren't as common as one may be accustomed to.
You aren't home with friends and family.
If you can find the expertise in herbs, acupuncture and massage close to home -- you may be better served to not subject yourself to the long flight, the stress of communication and limited access to the type of nutrition and amenities you are used to.
However, if you have the resources and the strength (and even better have someone who can make the journey with you), and access to TCM is too scarce or too expensive at home, by all means consider this a viable option.
My body is stronger and more in balance everyday. Is it a cure? No. But it does give my body the best fighting chance to slow, stop or even regress the symptoms of this horrible disease.