Flying Ointment

I dipped my feet and hands into the creek, wiping water on my head three times, and then applied the softest swipe of the ointment to my third eye.

I sat in the yellow and green grass and relaxed. The birds were all over, many different songs and calls to play on both ears. The sun moved in and out of the clouds that refuse to offer us much needed rain. The creek did its thing, bouncing and rolling beside me. I shifted my foot and found a teeny, tiny snail. It was oozing white flesh and I gently put it back onto the damp creekside.



I spotted this yellow bird, the first I have seen this season. As soon as I took its picture, it flew away.



Another bird took up residence in the witch tree.



I counted that one as my clock. When it went away, it was time to consider going back inside. It was only warm when the sun was free of the clouds. Then, the whole landscape lit up and the grass would sigh with the caress.

I became very relaxed. I closed my eyes and sank into the peacefulness. I imagined having warm fur and slinking quietly through the shushing grass. I would have whiskers that felt the air, and sound of the bugs would tickle my ears.



This was a deep meditation. When I opened my eyes, I found that I was being watched carelessly by a muskrat.



Every time it dipped its little eyes below the water line to take a bite, I raised by camera another inch or so until I was able to take a few pictures. Once I had them, it washed its little face and swam upstream, hugging the grassy bank.



The birds continued their conversations. The complexity and diversity of each living thing within sight and ear was awe-inspiring. The budding willows looked like elaborate embroidery.



I could imagine the worlds living within each living thing as well. The micro-organisms that dwell within each bird and bug add another layer of beauty and magic. The tiny things we can’t see, like pollen and dead skin cells that float through the air, touching us and becoming part of the sea that we swim through while unaware of their dance and journey. I gave humble thanks for the experience of living and being aware.

The sound of helicopters fighting the forest fire over in Nelson permeated the birdsong. It was a reminder that only seven miles from this peaceful symphony, a battle was being waged. I stepped into the creek to perform an ending ablution. As I headed back inside, I saw the Flathead Hotshot trucks drive past. I prayed for their safety and success.

May

I’ve written several blog posts, but never published them. Somehow, they weren’t right. I figured I’d better post something so that I don’t lose the routine, though!

Here is what has been slowly growing from my needles. When I say slowly, I mean it. I knit maybe six rows in a week. It is super easy knitting, but I am distracted by so many other things.



I have been working hard to keep Megan on a schedule. She is gearing up to high school. At this point, she is choosing to stay homeschooled. She got accepted to an exciting science opportunity this summer at one of the universities. We are hosting a Japanese exchange student, as well. My in-laws are coming to visit, and Megan might have her best friend from Maryland come out. She is signed up for outdoor volleyball through the YMCA. I feel like we really need to get a lot done this month to be prepared to relax this summer!

Grayson is doing well. There isn't much more to say. He is pretty much in a holding pattern while things smooth out and sail forward.

I’ve been getting up early each day and spending some time at the creek. I watch and listen. There are plenty of birds and bugs, plus the irresistible rocks.





I am losing energy fast these days, usually needing a nap daily, but not always able to get it. This, of course, leads to pain, but I try to push through. I am keeping a positive outlook on things. I have resumed my PT exercises since I had another fall this week. I seem to lose any progress if I don’t keep doing them. I was denied for my first disability claim, and the reason given is that I can walk without assistance. *sigh* I finished the appeal last week. My support group recommends getting a lawyer, as this apparently speeds up the process.

I’ve been doing dream work this past month. I figure if I am going to be sleeping, I might as well DO something with it, right? I am reading Jung and trying to keep a journal of sorts. I had a dream that involved Odin, even though I am not a fan of Norse paganism. If anything severely cool happens, I promise to share it.

Physical Therapy

I had my first physical therapy appointment yesterday. This was an area of the hospital I disliked when I worked as an RN. Don't get me wrong, I very much appreciated the hard work all of the staff and patients did there, but it was vague and messy. I had to slow down and think differently when I would go there to help.

I told my therapist this. It was a way to soften how terrified I appeared. I don't do well with anything that requires strangers in my personal space. I have to work at not being freaked out. I wear extra deodorant because I sweat a ridiculous amount.

Side note: One of the things I learned during my sweat test is that people have two kinds of sweat glands. One for everyday use, and the other to keep the monsters from being able to get a good grip.

He was kind and tried to warn me of everything in advance. At one point early on, he raised the table with the automatic foot pedal without warning me and I made an eep! noise and dashed over to the chair. He did not laugh or look at me funny. He just did the rest of the exam with me in the chair.

For those of you with dysautonomia or another neurological condition that might require PT, I thought I would share what I learned. Obviously, your experience will differ based on your symptoms and target area of need. I went for balance issues, but when my assessment was finished, we discovered that I am also having left-sided weakness. It isn't anything too significant, except hand grip, and he thinks I can do exercises to improve it. It was a shock, though, to see my leg not hold up its end of the bargain. I had been suspicious of the grip problem, and actually asked him to test this.

When I told Dan about the test, it sounded like this:



Me: So, the therapist brought out this thing for me to squeeze.

Him: *significant teasing look* Oh, really?

Me (giggling): No, seriously. This story is going to get very strange if you think like that!

Him: *raises eyebrows*

Me (trying to keep a straight face): So, he squeezed it first, and then gave it to me.

Him: *smirking*

Me (barely able to talk from laughing): and then I squeezed it, and it was like squeezing a rock!

We are so immature!

The grip test has a little laminated chart to show percentiles, kind of like the ones we use to gauge our kid's height and weight. The difference is that you already know if your kid is short or scrawny. When you are squeezing the grip tester, you don't feel like it moves at all. I did three on each side, and we ball-parked the average and compared it to the chart. The dominant hand is the higher number on the chart, and it is broken down by age and gender. As a 42 yr old female, my right hand was in the 50-75% range somewhere. My left hand, though, was only in the 25-50% range. That is a significant difference.

It was a relief in a way. I had been noticing that my left hand shakes when I pick up a full glass, and I feel awkward and well, weak. When you are chronically ill with a disease that has so many different symptoms that can change from one hour to the next, you start to jump at shadows. You notice every twinge, every pain prickle, and every tremor. It was good to know that I wasn't a hypochondriac. I really do have a problem with that hand.

He tested the rest of my strength by having me resist force. He would position a body part, and then tell me to try and keep him from moving it with his strength. This was kind of fun, actually. I love a good challenge. I got a little sad and worried when he did my legs. I noticed that my right leg seemed much more able to resist. At first, I was hoping that maybe it was because it was my dominant leg. Nope. Again, not something I expected. We had asked Dr. Khurana in Maryland if my condition would get worse, and he told us no. That makes it a little harder to accept, but I haven't cried yet, so I must be getting better at dealing with things.

The third area of deficit took us both by surprise. He had me walk down the hall while he timed me. Of course, it is so hard to walk naturally when you know someone is watching you, but I tried. I pretended it was my hospital, and I was walking down a hall to do something important. I did it in like 4.2 seconds or something. It seemed a silly test to me. After all, I had already told him that hiking was one of the last things I could still do. It might take me two hours to get to the top, compared to the 15 minutes to descend, but it was worth it.

So, then he suggested that I do it again, but this time turn my head from slowly from side to side, as if I were just looking around at scenery. Easy, right? Ha. When I got to the end of the hall, I was sure I was going to pass out and puke at the same time. He came up quickly with a look of concern. I bent over and focused on breathing. It takes a LOT to make me throw up, and I have never passed out even with a blood pressure in the 70 range. I got myself to a point where I could stand upright and speak, and we headed back to the exam room. Most people decrease their walking time by 10% during that test. My decrease was 50%.

That test lit up my autonomic nervous system. I was pale, shaky, and exhausted from walking down a 20 foot hall. Insane! He explained that because my brain can't rely on sensory input from my feet any longer, it is overcompensating with my visual system. This also explains why I can't tolerate people moving their hands when they talk (he explained while sitting on his hands). It makes me sick to my stomach, as if I am on a boat.

He gave me exercises to do at home until I see him again next week. He expects it will take six weeks, but I only let the receptionist schedule me for four. I am to stand heel to toe and turn my head slowly from side to side. I was also given a very fancy strip of rubber that he tied in a knot to make a circle. I put it around my legs, above the knees, lie on my side and open my knees. It was super easy the first four times. It started to burn at six. He wants me to get it up to fifteen. The color of the strip is blue. The highest resistance is plum-colored, so I figure I must not be too weak, assuming it follows the order of the rainbow. I must have come to trust him by the end of the session, or maybe I was too tired to care, because he sat at my feet while I did those exercises so that he could evaluate my movement.

Immersed

It has been a lost week here. I started dropping into the hole of pain and fatigue, and it was a messy slide to the bottom from there. I am fighting the sadness that often accompanies these episodes. I try to ignore the sharp stabbing in my ribs, the dead fingertips, the feel of icy feet, and the inability to stand upright without feeling like someone has piled a heavy burden on my long bones. I am trying to forgive myself the rudeness of falling asleep in the middle of the day.

I have been trying to remember that I am immersed in abundance. There are whales in the ocean. There are birds made of dinosaurs. The trees sound like the ocean when the wind blows. We are made of the elements of the sun, and it sings to us when we sit in its radiance.

These are small images, but they have huge power to banish my negative thoughts. They give hope when the small nuisances and twinges of this disease pester me daily. My hope isn't that it will get better (because that seems a lie), but that I will master the worsening of it so that life continues to be a joy and a blessing. I just don't want to have to do it alone.

Surrender

The grass will cover my sins



with lacy fingertips,



a shroud

from the unrelenting sun.



The shade will cool

my spirit,



and I will be a

child-in-wonder once more.

Stones and worms

will caress me



with the textures of

infinity and brevity.



and I will

Surrender,

cell by cell

until I am filtered to the sea.







All words and pictures are mine. Please do not steal. Ask nicely, instead.

Motion In This Hush Of Nature

But thou, my babe shalt wander like a breeze

By lakes and sandy shores,

Beneath the crags

Of ancient mountain, and beneath the clouds,

Which image in their bulk both lakes and shores

And mountain crags:

so shalt thou see and hear

The lovely shapes and sounds intelligible

Of that eternal language,

which thy God

Utters, who from eternity doth teach

Himself in all, and all things in himself.

Great universal Teacher! he shall mould

Thy spirit, and by giving make it ask.

-- Excerpt of Frost at Midnight by Samuel Taylor Coleridge

Hidden Changes

Our creek used to be impassable with narrow ledges beckoning one to walk into the water, only to drop off precipitously into murky swirls that were startling in their swiftness and depth.

This winter, the creek has changed. It happened so slowly and subtly that it is just now noticeable. Now, one can walk carefully along the pebble strewn paths and navigate in a curving slope toward the other shore to safety.

A forbidden spot, swelling and twisting and so close to the fence that it seemed off limits to me, has now become a small resting place. I can sit here and play in the creek stones without worry of my hands going numb from being plunged into cold waters to seize a favored stone.

It leads me to thinking about how parts of my life that were also murky and dangerous have slowly settled, the colors of my healing wavering and blinking in the sudden sunlight, and I am grateful and humble.

Also, my dog does his yoga on our walk, rather than before like I do.