Aqua jogging

Last year, I wasn't entirely certain I had the strength to make it out of in the shape that I wanted to be in. Each denial letter from the insurance company eviscerated me.  I would sit at my desk in my old office in tears. I couldn't see a way forward. I, who always knows there're solutions, I, who always gets back up, stayed still and motionless trapped in a prison of pain and hopelessness.

Each denial letter reinforced this perception that my skills, my life, and my person-ness were not valued.  It didn't make sense. Every one who mattered said I need the machine. Without it, life stretched in front of me an endless struggle against a disability only a few trained people could see.

My mom's best friend, my aunt, once told me that I am an aqua jogger. "You get pulled under, and then you shoot right back up. You don't stay down long."  Last year, my lungs burned and my chest ached from being under the water too long.

I value resiliency. I value it in myself and in others. It is something that lets me say, "this isn't working. there has to be another way."

In November, I started meeting with some people about work. I remember sitting at lunch with one of them, and I remember saying, "I don't feel like this is a disability. I feel like it's a problem that needs solved."


Now, I see it as both. I haven't been able to pump for a week. I feel the heaviness creeping back. My hands won't hold pens easily, but it's different. I know it's temporary. I know, as soon as my cold is going, I can start pumping again, and the pressure and swelling will ease.

So it's a disability, but it's also something that can be supporting. Luckily, I've found an amazing place to work that seems to see it the same way.

Delayed

No snow!!! How can we snow shoe? How?

It's been a busy couple of weeks, and our busted laptop was moved away from my comfy blogging chair to the floor. I don't find this super conducive for writing my heart out, but alas, D's back won't allow him to fix the situation, and I can't move the stupid entertainment center to get at the plug. Amanda's blog, presented by dust bunnies, live from the guest room floor.

Yesterday, I parallel parked my new company's car. Yeah that's right, Amanda who would rather walk two miles into town than parallel park, parked that car between two giant trucks. Maybe it was just one giant truck and a fiat. Actually it was a prius and a fiat, but they were HUGE for their make and model...It's an omen.

In November, after receiving yet another denial letter from my insurance company about my machine, I sat defeated, hunched over my steering wheel, crying my eyes out. In my hand, I held a packet of papers one of my doctor's had graciously filled out for me to turn in. Across the top, the paper read, "Application for long term disability."

I couldn't drive. I couldn't walk. I couldn't type well. I couldn't hold a pen, tooth brush, comb, knitting needles, etc. I couldn't really do anything. I had ceded my power to the insurance company, and the remaining had been sucked away by a ridiculous finger infection. A lot will change in two months.

My machine came. With daily use, I am losing on average three pounds of fluid a day. I can walk. I have energy. I can hold a pencil. The disability paperwork is somewhere collecting dust.

Yesterday, I went to a resource fair for kids with disabilities transitioning to adulthood. As is often the case, someone commented on my sleeve.

Interested stranger: Burn garment?
Amanda: No, it's a compression sleeve

Interested stranger: Lyphedema?
Amanda: Why yes.

Interested stranger: I did that work and amputee work for twenty years.

What followed was a pleasant discussion of what has changed in the last few years since she left the field. She got it. She got what I was dealing with. She sympathized, and then she said something totally startling, "You and I both have disabilities, and no one would know it looking at us." She, M, has MS. I have total body swelling.

We have disabilities, we are not disabled by them. The distinction felt so crystal clear. It was like a weight lifted from me.

Today, I was discharged from OT for the first time in a year and a half. My pump is working so well, I don't have to go see my OT anymore except for tune ups. Now I just have to navigate the accommodations and the insurance. I see the end of it though. I see all I can accomplish.  The end is in sight.

Fish Lake in the SNOW!

Three exclamation points

Source unknown.

"Amanda," my very dear college writing teacher said, her tone almost sizzling with exasperation, "You only get three exclamation points for your entire life! Use them sparingly." (I just used hers, not mine.)  I had written something, probably a seminar paper, on some exciting topic, or I should probably say, some topic I found exciting.

Every sentence was an exclamation. Excitement bubbled through me, and I couldn't figure out how to convey the motion, the enjoyment of whatever topic onto paper, without the punctuation mark.

I think she was trying to point out that if everything is an exclamation, then everything has the same weight. It's all the same level of noise. It's like playing forte or wearing bright colors all the time. The absence of joy, excitement, pure beauty makes all those things much sweeter.

In general, I am an excitable person. Anytime I start to go on about some new whatever, D's cousin waits for a comedic pause and jokes,  "Is this your favorite?" Not my "new favorite," but a favorite. Things should be relished, tastes and words rolled on the tongue, sounds repeated, views captured. Life's too short to not press joy out the mundane. I have a lot of favorites.

Everything's kind of become beige this last year. In those frantic moments of realization (you can't keep travelling, you can't move to Austin and take care of duck, you can't go into the mountains much), my favorite things kept getting shifted from daily happenings to unhappenings.

Deep into it, my brain some how turned off its exclamation points. Zest turned into zilch. I didn't notice it at first.



The internal energy, the fire smoldered to ashes, and the heaviness of swelling and grieving grew into the new normal. I feel fire now. Each moment is punctuated with exclamation marks.

That new tabletop game! Favorite! Walking to find Christmas lights! Favorite! Bean soup like my mom's! Favorite! Swimming! Favorite!  D! Favorite! Spontaneous hug from E! Favorite!

As the fluid gets pumped from me, as circulation returns, my brain wakes up, and my soul remembers the electricity of flow. Life is motion. The time for treading water is at an end.

2013 was a hard year. It filled its self with so much waiting and loss. Punctuated with joy, it was just kind enough and just sweet enough to make me grow and learn. My biggest lessons:

1. I don't get to pick where the wind blows!
2. I am stronger and more resilient than I know!
3. I will adapt!

This year, I will take for myself and for D. It will be one of learning to live life without pressure, but with motion and energy. So here's to 2014! Who counts exclamation points, anyways, and who knows what I'll learn? I've got a whole year to figure it out :)

Happy early New Year! How was 2013 for you? Did you learn anything? What do you want to learn next year?

Happy New Year!

My life with bread

During my first trip riding my chemo chair, we lived at my parents house in Texas. It was summer. The hot sticky heat and my chemo body did not get along. I'd go from the house to a gifted car, and the world would spin as my limbs grew heavy: my body's vain attempt to faint away from the sweltering sun. The heat never really stops. It takes a deep breath in in the morning, and it exhales sauna well past midnight.

Random card I picked sort of spooky

In Texas, summer is like Winter everywhere else. Few people go out. They stay in. I stayed in, unless I was working or spending time with family and friends (particularly Rose and her mother). I watched too much "Scrubs," I read Janet Evanovich and Terry Pratchett. I wrote buckets of poetry. Apparently, I also used tarot cards. (I have no memories of the cards...but D swears he'd come home from work, and I'd be puzzling over the Fool, the five of cups, the up side down empress, and the jack of wands.)

Eventually, I figured out that I needed something creative to do. I needed to learn something new. I risked my mind rotting as my body rested. I needed a goal, a skill, something I could fuss over and perfect in my spaceship away from murky heat. Somehow, someway, I started baking. Everyone would be off at work, and I would bake. I made loaf, after loaf, after loaf of bread. When I mastered the instant yeast variety, I started my own sourdough starter, and I then made loaf after loaf of sourdough bread.

Miche was my favorite. A giant boule of bread would rest on the counter after I had tended to it for 16 hours stretching, pounding, and pulling the gluten into long elastic chains. D came home from work to find me with 5 or 6 different types of loaves lined up on the counter in various states of doneness. My arms, covered with flour and bits of dough, my nose dusted with white, and my hands stirring the starter. "I love sourdough. With all the little yeast beasts, it's like I have billions of friends."

I started my starter again. In the last week and a half, I've made sugar cookies, biscuits, bread, and bagels. My joy soars as I sink my left hand into the warm, breath filled dough.  Before I bake them, I can feel the life thrumming in their fibers. The energy of everything captured in flour, water, salt and yeast. It heals me to smell it. It heals me to touch it. In the process, I find flow.

So what that I can't knead it with my right hand? That's what clean elbows and forearms are for. So what if I have to use a stand mixer? Who cares? I can still bake, and I am glad I found that out again.

This is when the world changes.

So happy to be back to normal

My first diagnosis seems ages ago. We were far from both our families, but D's family was at least two thousand miles closer. In those hurried days after the words were first spoken, his mother arrived to support and help us. When they told me I might be infertile. She cried and I did not. Now I get why she cried. I get that grief.

While she was visiting, D's dad took care of his sister, E. Charming Princess. E. Charming Princess has called herself E. Charming Princess since she was a little kid. E. has down syndrome and autism. She doesn't use a lot of words to communicate. When her mom was north, E. told her dad something like, "Nurse Miss Miller Mom. Eleanor Amanda. Hospital. Take care of her." Her words halting as she used her limited vocabulary to describe an unusual and painful situation.

A year later, D and I had moved back to Oregon. I needed health insurance, and his dad graciously let me work at his clinic. One infusion day, no one could pick up E except D and I. So E came to the infusion room. She watched, in fascination, as "nurse barbie" took my weight, blood pressure, and temperature. She held my hand and said, "brave," as the nurse cleaned the port on my chest. She watched as the nurse inserted the giant needle just above my heart. All of it, E took in. She seemed unconcerned, but interested.

Amanda tries to figure out what E says...

That night, cuddled in her bed, her father tucked her in, and he asked her,"E, what'd you do today?" E paused. Her hands stilled from her writing. Her head turned toward him, and she looked up from her work. "Eleanor Amanda. Shot. Heart. Medicine." E's eyes filled with tears. "Eleanor Amanda is getting medicine, E. She's getting medicine to get better.”

People underestimate E all of the time. They think because she doesn't use words to communicate fluidly that she is somehow less than others. She is incapable of employment, success, etc. She will be a child forever. These perceptions are incorrect. E sees everything. She knows everything. She needs support, but she gets it.

My cancer was hard on everyone. Everyone was at a loss for words. The treatments from the outside made me a ghost of myself. No one ever talked about it as eloquently as E. The port sat right above my heart. The chemo dripped into my arteries and veins. These are scary things. I think E is really the only one who processed how scary it was at the time.

E and D at horseback riding.

This week was D's first week back supporting E. It was a week of sharky grins, bubbling laughter, and spontaneous words. She asked me, "schedule" in words instead of sign for the first time in years. Her joy at having her brother home feeds me. It's a window opening as the door of our other plan shuts for now.

Right now, I'm looking for windows everywhere. E was the first window I found. New windows are opening all around us.  The world is filled with endless possibilities. All D and I have to do is breathe and pick which windows to fly out of.