Saturday, January 15, 2011

Reflections on week 1

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.


xtine said...

Your strength is amazing. I am sending you as much as I can, too. Many hugs.

ajlampe said...

I love your positive spirit, David! That will go a long way in helping you through this. Our thoughts, prayers, and love are now sent to you over many miles. Just take one day at a time! HUGS!

khug said...

Mmmm, stabby! Love it. Actually makes me want to try it. Odd, I know. Sure admire your pushing yourself to get up this (yesterday?) morning. Your honest reflections of this week are appreciated. Sure wish we could send Margit there for the rest of your stay, but we well know we don't always get what we wish.

leela said...

hello dear david
thinking of you so much and thoroughly appreciating the blog. will put some cedar down for you at the hugo circles. proud you are stretching yourself and so actively claiming wellness. can't wait to have you home and hug you something fierce. with all my love - leela

El Tigre said...

I love these updates. Though you don't have anyone physically with you, know that their is a cacophony of love and singing and praying happening on your behalf back home. We are their with you my friend. Keep going. Keep pioneering. Keep being DTA. I love you, brother...

Carolyn said...

DTAm as always and source of love and inspiration. While we are not with you in body all that love you are on this journey with in spirite and heart. XOXOXOXO

Meghan said...

Uncle David,
You are such an inspiration and I admire you for your strength and honesty. I am so proud to call you family and I love you very much. I think of you and pray for you every day and I can't wait to see you and Margit and Grace the next time we are together. Much love!

Heidi said...

Hi David -

Thanks for your unvarnished notes of the reality of life at the hospital. I particularly appreciate your "pro and con" thoughts around endorsing the facility and practitioners. It gave me cause for pause.

Expertise, isolation and community all appeal to me, while lack of dietary control and difficulty communicating do not. I have a couple of options I will look at here before making a decision.

Thanks so much - and best wishes on your healing journey! You seem to have wonderful support at home. While I know you will be delighted to get back to them, it's also clear that you will do everything in your power to get back to them as well as humanly possible.

I admire your courage and am excited to follow your journey. Thanks for providing the opportunity!


SeattleSusieQ said...

Did you read Ceil Silver's blogs as she went through chemo? Your blog reminds me of hers.

Thank you for sharing your journey. The way you are dealing with this demonstrates such enormous inner strength. But then I knew that about you, anyway.

Big hugs from 425

Markus said...

Love you, David! Keep us posted.