Meditation

I begin the day with a meditation by Tara Brach. I end the day with a podcast by Richard Rohr. What I do in the hours in between depends entirely on my physical and cognitive capabilities. I had a lot of trouble really "waking up" today, even after I had coffee. Very foggy brain and heavy limbs for many hours.

My cat Sasha seems very lethargic today, and not purring hardly at all. She's also having trouble with her balance and footing. Going to call the vet tomorrow morning.

Fighting the monotony and boredom and loneliness. Keeping my brain engaged.

Visitors tomorrow? and Saturday. Yay.

peace,
et

Music Within

The precipitation is coming. My brain is fizzling out.

Movie recommendation: Music Within (2007) 

True story about a Vietnam vet who becomes a disability advocate and helps launch programs that lead to the ADA being passed. Strong drama/comedy/biopic that doesn't fall into the schmaltzy-inspiration-vomit tone. Educational, motivational, I liked it. Spoonies unite!

That's all for now. Hoping it doesn't snow too much because my cognitive function is affected by it.

et

I Left The House! / Exhaustion

My arms are very sore today, I think from folding laundry and washing/drying my hair yesterday. Talk about borrowing spoons against the next day! Also my back hurts and vision is weird sometimes.

I rested up all day to go to my dentist appointment in the afternoon. It had been 8 days since I had last left my house. The world is far too bright for my tiny eyeballs! Good thing it was a very short drive, and a short appointment too. I was worn out by the time I got home. It was exactly 38 minutes of activity. And I was, and still am, POOPED.

The thing about a cane is that everybody comments on it. It is the best thing, because it's a VISIBLE symbol that I'm struggling. It's a symbol that something is not right. (As opposed to POTS, which is INVISIBLE.) People who are caring will see this symbol (my cane) and react with compassion, asking if something happened recently, or if I'm all right. I may "introduce" them to Cleopatra, or I may simply tell them I have a chronic illness and require a cane to be more easily mobile when I am feeling weak. Sometimes they don't know what to say then. "Feel better"? "Oh, ok"? "Love the color!"? Eh, those are all fine. I can tell they have more questions, but it isn't their place. Good for them to know boundaries. This is the dentist's office; I'm here for you to tend to my teeth, not to my POTS!

People who have jerk-face tendencies, however will see my cane as something else. A scheme. A pitiful cry for attention. Even a bad omen. Some will express these thoughts with words. Many will just make a face or roll their eyes. I tend to avoid inviting/initiating eye contact with strangers when I use my cane. I'm fighting enough battles without having to defend myself against some butt-head who thinks I'm faking and shouldn't be taking the handicap accessible parking space. (Relax, Bozo. I don't have the energy to jump through those hoops to get a placard right now anyway. I parked in the regular spaces. Leave people alone.)

I am grateful for kind people. Be kind.

In other news, I discovered there are Broadway podcasts! Amazing! Can't wait to listen.

peace,
emma

Halfway Decent Day?

I started to get worried last night. My stomach was talking. Old symptom showing up again.
Then this morning I woke up at 3am, wide awake. I was like no, no, no, we are not going to do this again. My sleep thus far has been uninterrupted, if not totally restorative. I used to have major issues getting enough sleep. I was not happy to be haunted by these old symptoms and patterns I had for so many years.

So I made an executive decision. Time to get serious about my treatment and hopes for recovery. Biofeedback got me better the last time, we can do it again. I ordered the emWave2 from HeartMath, the same software that I got from the POTS Treatment Center in Dallas. It should be a big improvement over the old one that I got 7 years ago, and it should work with my MacBook, iPad, and on my iPhone too. It takes a certain leap of faith to get past the skepticism of the program. HeartMath's website looks really cheesy and too good to be true. But it worked for me before! Should arrive by Friday, and we'll dive right back into the intense coherence training.

Otherwise it's been a fairly decent day! Did 2 loads of laundry! Took a shower AND conditioned AND blow-dried my hair! Sitting up about as much as I'm lying down! Such a difference compared to Wed/Thurs/Fri last week, or even this weekend. Hoping the mental clarity lasts too.

peace,
et

Music to Cheer You

Loved getting a visit from my friend/spiritual director Wendy today. Lots of personal growth and meaning-making from this time of pain and illness. I am so grateful for her presence in my life.

I watched a very silly movie called The Fighting Temptations (2003)- starring Cuba Gooding Jr, Beyonce, and Steve Harvey. It's basically Sister Act. But I like Sister Act. Enjoy this fun version of "Loves Me Like A Rock" from the barbershop guys.

harmonica solo!
emma

Could You Spare A Square? and PODCASTS

True friends are the ones who make sure, when you've been bed-bound for days, that there's enough toilet paper in the house. Thank you, Karen V.

I'm making a list of all the podcasts I like:

The Liturgists
The Alien & The Robot
Urban Village Church, Chicago
StoryCorps & StoryCorps Chicago
Everything Happens with Kate Bowler
Terrible, Thanks For Asking
Yes Gawd Pawdcast
Permission to BE
On Being
Invisibilia
TED Radio Hour
This American Life
Loving THIS with Michael Gungor
The Moth
Other People's Problems
Another Name for Every Thing with Richard Rohr
Ask Science Mike
Kaleidoscope
Failing Boldly
The Sleeping At Last Podcast
Sandi Klein's Conversations with Creative Women
Soul Search
God Forbid

Some more that I want to check out but haven't listened to yet:
The Trouble with Shannon Cason
Bullseye with Jesse Thorn
The New Yorker Radio Hour
AudPod
The Dave Berry Breakfast Show

It seems I may be in my present condition for some time. Feeling grateful for entertainment / education / stimulation to keep my mind somewhat sharp when my body can't do much.

Let me know if you have other podcasts you recommend!

elaine benes dance,
et

Disability Theologians Are Rock Stars

In terms of physical symptoms and limitations, yesterday was a very bad day. Today was a bad day. I stayed in bed all day both days, but today I was in the fetal position a lot less. By evening I was even able to do a little bit of reading... by a disability theologian named Shane Clifton, whom I was introduced to by an Australian religious/spiritual podcast called Soul Search. I don't have much energy left today to go into detail, but he is great, and it's so encouraging to hear he's a part of a progressive (Pentecostal?) church that seeks to give voice to marginalized groups. He suffered a spinal cord injury in 2010 and has been a quadriplegic since. His writing about how disabled people are portrayed in the media (think movies like Million Dollar Baby and Me Before You) is so spot-on and strikes a chord with me.

I think I block out much, maybe even most, of the stupid things people say to me or have said to me over the years, in reference to my POTS. But I vaguely remember someone I went to high school with, upon hearing that I'd been bedridden for four years, gasped and said, "Oh God, I'd literally rather die. That is so f-ing depressing."

I could say a whole lot about that but my brain is tired. Here are the resources if you want to learn more about disability theologian Shane Clifton:

Shane Clifton's website
His book - Crippled Grace
The podcast episode where I first heard of him - Soul Search - his portion begins about 1/2 or 2/3 way through.

peace, friends
et