There's a room full of people in your head, in your head,
Yes there's a room full of people in your head, in your head.
And every single one of them knows your name.
So goes the song by Craig Minoa of Cloud Cult.
Woke this morning with the critic on the mic. I'm not doing enough, just going through the motions, checking things off my list so at some point I can turn back to God, or my Doctors or anyone else and scream "IT'S NOT MY FAULT!!! -- SEE LOOK, I DID EVERYTHING I COULD..."
Ugh.
Screaming, more of that. I grabbed a pillow on Sunday and screamed for about 30 seconds - everything felt better, and my voice dropped.
No water for most of the day today. Dr Ming is visibly upset, but something that is obviously not in his control. Talking with others about it, this is not common but not unheard of.
So we all pitched in and boiled water in the kitchen for dishes (we still have a hot/cold water cooler in the room, so plenty to drink). I was planning on a shower and laundry today -- best laid plans.
Tremors are high today and all over my body. Nothing uncomfortable, and no cramping -- I like to think it is a good thing. The muscles are "beaconing" to the neurons for signal. Healthy neurons can take the place of those that have become too weak to signal -- with the potential to expand by a factor of 5!
Cooking my own meals today -- and glad for it. Nothing tastes as good as your own food.
The morning routine is pretty much set. If I'm up by 6 I get through it all by 9 in time for the Doctor's rounds. Then tea, a little video chat with my sweet wife and daughter and acupuncture and massage takes me to almost 1.
Making, eating and cleaning up lunch takes about 2 hours -- a nap, exercise, a little computer time and then dinner. Meals are a social time -- hanging out cooking in the kitchen with everyone else is enjoyable. So far everyone I've met is here for ALS treatment.
After dinner and cleanup another video chat, and if I have the energy some reading or computer time.
Hard to believe I used to work 10 hours a day.
Thanks for all the comments and emails. It helps to hear from you and stay connected.
Until tomorrow -- love from China.
About Me
- dta
- Fridley, MN, United States
- I was diagnosed with ALS in October 2010.
The onset presented itself as Bulbar, starting in my throat. As a result I am now trached and use a vent (although my lungs are still strong). I have also lost significant muscle in my both hands, arms and shoulders and can no longer walk. My posts here are typed with my eyes starting in 2012.
10 comments:
I am breathing with you, Brother.
xo,
E
Still surreal to know you are in China. Frank asks each evening about your previous day. Yesterday i gave Meghan pics from Christmas -- she is still sad about the timing of her illness & not getting to see you. We are cheering for your neurons! ~K
Stay strong Dave! You are the strongest person I know!
rw
Hi David-
Thanks for this blog and the window you provide to your world right now. You ARE doing everything you can and it is really inspiring.
I sent my form from the hospital website and and received a letter from Dr. Ming today. I have requested a letter of invitation and hope to make my way to China within the month if all goes well.
Blessings to you, brother on the path!
Heidi
you're in my mind too ;-)
sending lots of love and intention for healing.
xo
Following you here every day, padna. Meditating each day, focusing on you and your healing, feeding those neurons. You're doing this!
so good to read you brother
bkg
keep 'em coming, brother. i can feel your story and am able to vibrate with you.
banish the critics! fools, i say! the critical voices are not you... don't believe the hype.
you'll know you when you hear the sweet song that is your light. healing you from the inside out. embrace your song, dta dj.
lots of love!
Every time I read a blog from you the word ~ Warrior ~ comes across my mindscreen. Not kidding.
You are the Real Deal.
Infinite Love to You.
Kristin
You ARE the strongest person, I know and I'm blessed to know you. Thanks for the the blogs. You have so many people who love you and want to stay connected and you"re thoughtful to do this for you.
You are often my "intention" in my yoga practice. Silly, I know. :)
Hang in there....Margaret
Post a Comment