Sunday, December 29, 2013

A single step

Maggie says, "Don't take the tree down yet,
 I'm really digging it.
"Sometimes the smallest step in the right direction [for you] ends up being the biggest step in your life. Tip toe if you must, but take the step." Gemma Stone

Holidays come and go, but this is the first year I've skipped both Thanksgiving and Christmas at my parent's homestead. So it has been a bit odd, and I've felt bad because my mom is wonderful and means well, but it's been in my best interest to stay away to get some distance.

We got back from an overnight stay at Karl's parents' place, which is a two and a half hour drive from where we live. We went to a Christmas Eve party at his sister's house, and the next day we stopped in to visit my mother in law's 90 year old dad, who was an absolute treasure to spend time with. I was amped the whole trip to be finally meeting my in-laws. I married Karl without ever having met his family. I was too ill to travel or have company for a few years. Now, finally, I am well enough to get out more, and I met his family for the first time over this holiday. I was savoring every minute. At his family party, most of his brothers and sisters and relatives were drinking and talking in the kitchen. I found myself in the quieter room drawing pictures on the living room floor with Karl's little nieces and nephews.
Most of Karl's family and relatives live either on the same block or within walking distance of each other, and so they bring their family dogs to the party. So I met quite a few dogs, Bindy, Olive, Motley, Baxter and Binga to name a few, as well as a slew of cats, each with their own personality. I met one cat, a soft black longhair named Cocoa. They warned me she was snippy and bit people. Also that she had only one front tooth, as the others were pulled by a vet after being rescued from a cat hoarder who kept 50 plus cats in her house but didn't feed or care for them. I leaned over so I was looking at Cocoa and told her I was so sorry she had to have her teeth pulled, that it must have really hurt, that I was sorry that had happened to her. She leaned her head down and rubbed it on my hand, as if to say she wanted me to pet her. So I did, and she started purring. Two minutes later she's crawling on my lap letting me pet her. My mother in law, who I'll refer to as Jackie, told me that Cocoa doesn't warm up to anyone in the family, and that something amazing had just happened. I personally believe that animals understand perfectly what we communicate to them, and Cocoa was just relieved to hear another human saying in effect, "I understand what you went through."

My niece Sabrina working her
candy cane tights, LOL
One of my new sister in laws who I'll call Marjory sent me a message after I met her at Karl's family Christmas party. She is quite stylish and suave, and is quiet and calm in the way she carries herself. Something I admire. She mentioned how she too had a chronic illness (which I didn't even know). She shared how glad she was that I made it to the party, and she invited me over to her place next time I found myself in town. She wants to hear all about my time living in NYC, and what teaching was like up there. Hearing from her was one of the highlights of this week. Many of those closest to me still do not 'get' me, and still think I could technically get 'rid' of this illness if I tried harder. What a whimsical and laughable notion! I do wish that were the case! So it will be nice to spend time with someone like her who won't judge, someone who grasps the situation through personal experience.

My sister Louisa and her two kids Patrick and Sabrina came up to visit us yesterday, and they spent the night. Playing the role of wife, homeowner, hostess and cook still feels new to me, like a coat that I'm wearing that I'm not used to quite yet. I made a roasted chicken, gravy and mashed, and veggies for us all at dinner, and showed everyone around the house. I still feel like a kid, the perpetual traveler, the one who doesn't settle down.... so I felt odd saying, "How do you like our home?" I felt like an actress in an apron showing up on set in this kitchen I called my own cooking dinner for my sister, her kids, my other sister and my husband. I like that I am at the center of a hub for the first time in my life, and not just one of many supportive spokes on someone else's wheel like I used to be. Other people rely on me now, and my actions directly affect more than just me. I'm invested now, and it is an interesting coat to be wearing. I wonder why it still feels like a new coat, why each time I move, it feels awkward as if I didn't break it in yet.

My nephew Patrick
I shared with Louisa that I didn't like the thought of Mom at Christmas with only two of her six kids there to share the holiday with her. Louisa said she didn't think Mom minded, as three of the grand kids were there too. I told Louisa I just didn't feel comfortable going to the homestead, because Mom doesn't stand up for any of her daughters. There's a more than sizable chance that based on his recent track record, Louisa's husband will once again open his yap and say something derogatory about me or my other three sisters... something derogatory but dipped in a sugary Christian coating complete with Biblical references, chapter and verse.  My mom and dad will just smile at Clark with sheep eyes. Really, I am not a masochist, and I don't enjoy being oppressed on such a cheery holiday, so I choose not to go. Louisa couldn't understand what I was sharing with her. She still thinks that no one is treating her poorly. Her standards and the way she views herself is low. I wish I could pluck her out of her body and pop her inside a version of herself who is being treated with respect, so she can experience a healthy baseline. But no one can do this but herself, and she is not ready. Still, I can't bear to watch her being degraded, so I don't choose at this time to go to family functions.

We also had the mandatory check up on the status of my immortal soul, and Louisa was saddened because I told her (once again) I have no fear of hell. Without a fear of hell, I don't need salvation. When I said that, it was like a bomb dropped and there was silence, and Louisa started crying. She really feels bad about me burning in hell. I told her it was fine, I wasn't going "there," and that hell was what you make for yourself here on earth if you so chose, consciously or not, and it's much worse than simple burning of the flesh. That we make our own heavens here on earth as well. Thankfully, the kids had ear buds in their ears watching movies during this conversation. I was glad I stood up for what I believed in, but from now on, it's not worth it if it makes Louisa cry. We are all on different paths, and that is OK. We all get to the same place in the end, so there's no sense trying to change anyone when they are fine where they are. Even though I don't like seeing my sister hurt by my family and her husband. In the future, I won't delve into my beliefs... I will focus on sharing how much I just want to see her cherished and respected in her own home and family.

I am glad that Karl has my back and encourages me to stand up for myself. He knows I don't like confrontation, but he encourages me to speak up and respect my boundaries. This was not always the case because we both used to be in the religion. There was a time where he suppressed me when I spoke up about pretty much any topic, especially my beliefs, thinking it was the Godly thing for him as a man to do. It has been extremely difficult for me to stand my ground and for us to find our footing while tearing free from the family at the same time. The fibers of my family and their beliefs are so tightly interwoven that separating from the religion is the same as ripping myself apart from the customs, habits, gatherings and basic heartbeat of my family. I try to find one facet of my family's life that I can still be apart of that is untouched by religion, but I can't find one. So we have been detaching ourselves slowly and painfully, like the separation of skin and a resistant band-aide. Wish we could just rip this bugger off in one quick motion, but I suppose that since this is life, the process is messier and more time consuming than that.  Since we left the religion (me first, and Karl a year later) and took the first steps towards liberation, it's like a pebble has been tossed in a lake, and the rings around the pebble have spread in super slow motion in an ever widening circle. Every several months, I look back and see we have moved so much farther away from where we were two years ago. The rings eventually widen and soften so that eventually they are no longer there, and the place the pebble fell is no longer marked. We aren't exactly to that point yet where breaking free is a distant memory yet, it is actually still occurring... but it is encouraging to look back and see the rings are widening.

Thursday, December 12, 2013

Joie de vivre

Christmas, a year ago, feeling healthy and fabulous
...for 20 minutes, LOL.
When you have an invisible illness such as ME/CFIDS, it is easy to temporarily loose your inner flame. That little fire that burns inside of you, your mojo, your energy, your zest for life, that  which brings color to the world. That 'joie de vivre,' the French joy of living. It was there for me on autopilot mode my whole life. Until I got sick, and it was swallowed up... oops there it went, gone.  Most of  my energy went towards basically surviving from one minute to the next. Even digesting foods, comprehending speech, or changing clothing took more energy than I had, so there was  not much energy left for a mojo.

One faithful aspect of ME/CFIDS for me is that I get occasional windows of time where I feel almost normal. This has held true over the last four years, even if that window lasted only twenty minutes in a 24 hour period. I knew it would always come. And when it did, I would always greet it with so much relief and joy! Compared to the various cycles of symptoms before and after these little breaks, I actually feel comparatively excellent, almost euphoric. Anyone else living in my skin during my 'good moments' would probably feel cranky and perhaps even a bit alarmed at how off they would feel, but for me, these moments are solid gold. Sometimes during a break like this, I would go immediately to find one of my favorite outfits, and I would take a photo of myself. Sometimes it's a little black dress, such as above, other times it's my shortest shorts and a tank top. Heck, let's be honest. Sometimes I dig out my bathing suits and turn the radio to a station that makes me feel alive. Then I dance around and make videos of myself being ALIVE! Whatever it is I choose to wear during these breaks, I make sure it's something I wore ONLY when I was healthy and was having fun, or haven't worn yet but really love. Then weeks later when I would get too ill to move off the couch, I would look at the photos and remind myself that good times do exist still, that there was an undeniable spark in my expression. I have the proof right  in front of me.
I want to encourage any of my friends reading this with invisible illness: grab ahold of the good moments when they are there. Rev them up, squeeze as much joy and inspiration out of them as possible. Don't feel guilty about it, either. Whenever you have the energy to indulge and make yourself feel amazing, go for it. Say yes to it. I'm learning how to do this, as well, so I'm not a guru or anything yet.
I know how easy it is to wake up two or three years into an illness with the same holey sweatshirt, jeans with frayed knees and pockets, and sneakers that you bought five years ago. If the energy is not there to think beyond your next meal, or surviving from one minute to the next, the clothing is not an issue in the scheme of things. It's easy to forget, really, everything, even your name and age, so forgetting what you look like is really par for the course. But on those moments when your energy goes up and you remember what it's like to shop online, or buy things for yourself, even if you don't yet get out in public and no one really sees you except a house mate, or your pet, I say go for it.

Wednesday, December 4, 2013

Fine tuning Pandora

My younger sister on the violin and me at the piano last Christmas. I used
Instagram "toaster" to make the photo look vintage.
So today I was in the kitchen frying up some celery and onions to make a soup using our leftover Thanksgiving turkey, and I tuned into a Pandora Christmas station to get in a festive cooking mood. Because time by the stove is much more enjoyable when inspired by music. I was simmering the onions quite happily when all of a sudden, I found myself shocked at the lyrics of these Christmas songs. I suddenly found them to be offensive and depressing at the same time. How was it that I have listened to these songs my whole life and am only just now being turned off by them? I guess I didn't know any better back then, or I didn't really listen to them... they were just words.

But the message behind the words! "Away In a Manger," "Silent Night," "Hark the Herald Angel." Oohh, they give me the shivers. Why do people feel like they have to worship this man Jesus, when Jesus himself said that we are all equals, we are all gods... you wanna worship him then we should all worship ourselves because we all have the same glory. Jesus said, as I do, you will do even greater. He never asked us to worship him! Good grief. And this born again business. People think they have to "punch their ticket" by saying "the sinner's prayer" which will save them from hell. They ask Jesus into their heart when what Jesus is (love)... is our innate nature and always has been from the beginning. We don't need to perform a formality, and we don't need transformed into what we already are. Perhaps the "salvation" that people go on and on about is really an awakening to the realization that you already are complete, you are enough, you are love, there is no sin, no hell, no judgement, and that we are all deliciously One.

Oh, and this fear of God. He/she doesn't have it in for anyone. We are our own worst enemy. No one will ever judge us more than we judge own self. The hell they talk about in the Bible is something I have no fear of anymore. Burning forever would honestly be a relief compared to some of the things I have gone through here on earth. Some of us make our own hell here on earth that is far worse than the simple physical burning of the biblical hell. Going through abuse on several levels and going through the daily physical and mental torment of this illness and the way others relate to me while ill makes the biblical hell sound like cake. I have no fear of that hell. I laugh at it. Without out the existence of this place, we don't need salvation. Without salvation, I don't need to worship Jesus. And I bet he's saying, "Whew! Thanks, AJ, this worship business is being laid on too thick!" Oh, and this belief that we are sinners at heart. Really it's a depressing business. And it makes me angry because it makes good people cower, makes good people think they are unworthy, it can take a sensitive soul and weigh him or her down. Gives good people this idea that God wants them to tramp over top of people who hold different beliefs. Religion is a form of violence. It divides, it does not unite.

I have been hanging out with born again Christians since before I could speak. I was apparently  "born again" at age 3 in the shopping cart at the grocery store, so my mom said. I was singing "Jesus Loves Me" and was so carried away that I was sprouting tears of joy. Since I didn't recall that event, I asked Jesus into my heart for real at age 8, and each night afterward until I was assured that once was enough. I went to church three times a week, went with my brothers and sisters to a Christian school K-12, went to Bible College afterwards, went on mission trips, taught Sunday school to 3 year olds, read the Bible regularly... you get the picture.I have spent time in the Christian bubble, and lots of time out of the bubble. I didn't know how depressed and repressed I was until I let go of religion and became free from it. Looking back, I was so incredibly weighted down by Christianity. It makes me angry that people I love are blinded by religion and sit there glibly listening to these religious Christmas songs with a content smile on their face, while inside they are a pincushion poked full of lies that make them bleed internally. All these beautiful people laboring under illusions, feeling stuck under God's mighty thumb, scared of him but worshippin his mighty name. When they aren't really in the mood to worship, they are just scared of the pit of hell and want to try to be as holy as possible to appease God. Rubbish. It really makes me angry. I am sure I have a smidgen of residual anger there towards myself because I was part of the sheeple crowd for some time. I know what it is like to be afraid of shadows, and I don't appreciate these Christmas songs that lull people into thinking there is something holy about fear.

Pandora radio is great because you can thumbs-up or thumbs-down different songs on your station and fine tune it accordingly. I have been hovering over the thumbs button more than I have been hovering over the stove this morning, but I am calmer than I was. I am humming "Santa Baby" and Maggie is looking at me cross eyed trying to tell me I am off key. But hey, she must enjoy it because she is still staring at me and hasn't left the room.

I am Thankful

I have been thinking recently that I am so thankful that I am able to walk and get out in nature. I'm thankful that my legs are strong and that I can appreciate fall, the smell of sugary sweet leaves, the cool hues of leaves changing colors, the glow of the sun on my cheeks, the crackle of leaves under foot while I walk. I'm thankful I could explore my neighborhood the other week, and could discover a few trails and hidden spots off the road where I live.

I am thankful that I get stretches of time where I feel great and can get out of the house. Every now and again, a day will pop up out of the blue where I sense in my bones that I feel great, and I make the most of that day. For example, the other Saturday was just such a day. Karl and I went the mall, and I was grinning from ear to ear. First, because it was the first time in the last two months (since moving here to this neighborhood) that I went out in the car with him. And second, because it was the first time in the last three years I've been to a public place during the Christmas holidays. The mall was decorated with lamps, wreaths, and lights, and Santy himself was there in the center of the mall with kids on his lap. Christmas music was playing, and I was just... so... happy. To be out of the house, to feel healthy, to be out in a public place, to be around people. Karl got Chick Fillet and I sat with him in the food court, people watching. I bought two pair of jeans from Gap and a pair of Gap Dance yoga pants. Ohhhh, there is nothing in the world like a pair of tights jeans that fit! It's been four years since I wore a new pair of jeans, and oh I won't let that happen again any time soon! I could have ordered online, but I knew that would not fly. It takes 12 actual try ons minimum before I think a pair looks ok, and I could not foresee sending 20-40 pairs of jeans back and forth in the mail. How absolutely lovely it was to be in a fitting room with an eager to please sales lady calling me "sugar" and asking what else she could bring me. I am thankful for the cheerfulness of that girl... she didn't know how much it meant for me to be out and about, trying on clothing.

I am thankful that I have been getting out so often the past two months. Three trips to the chiropractor, trips to Home Depot, Lowes, Wal-Mart, the library and grocery store, drives around the neighborhood. I was house bound for almost two years, a time when even a trip out the back door to my own backyard was too much for me. So things are getting better.

The thing that I am most grateful for, though, is that I have experienced about two solid months recently where I had no stomach nausea. I have had stomach nausea lasting from 25%-90% of the day, every single day for the last four plus years. So to have this respite is huge. Your gut is your second brain, so when the gut is happy, the brain rests more easily, digestion takes less energy and there is more energy for the body to use. Having a calmer, more reliable stomach has been the reason I am getting out more. Interestingly, the anxiety slowly but steadily has decreased in the last ten months, and more and more often, I feel as calm as a cucumber hopping in a car and being in loud public places. Trust me, this was not happening a year ago. I am so thankful!

I am thankful that I made it through our big move to this house. I did 5 times the physical labor Karl did, as he was at work and I wanted to be busy.... oops, now there's nothing left for you to do, Karl! I was also in charge of the paperwork, scheduling, and technical issues in buying the home. Karl was very stressed, but somehow I wasn't stressed that much... I had to be the one to tell him to lighten up! I share all this is a thankful way though, because a year ago I didn't have the concentration or energy to even maintain a lucid, five minute conversation without going under. I am so grateful. I may have overtaxed myself in doing too much during and after the move, but I am super impressed with the progress I have made with my health.

I am thankful we got the water pressure fixed in our shower. I am thankful we got approved for a loan to get a heat pump installed in the house. I am thankful for mugs of hot chicory and dandelion mix with a dusting of forbidden cocoa on top... I am warming my paws on a hot mug right now. I am thankful my sister is living with us. I owe her my life, really, as she was there two years ago when doors were closed to me. I am so happy to be able to help her now even if it is small.

I am thankful that we are living in this area... the culture here seems open-minded compared to the town I am from. I am thankful there are two horse farms less than 15 minutes of this house. One is a home for aged equines, and the other is geared toward therapy for those beautiful souls with special needs such as autism or down syndrome. I want to volunteer there. I am also thankful we live down the road from a no-kill animal shelter. I want to volunteer to hang out with and talk to the cats, if any are in the mood to listen and be petted. I could also ask if I can walk some of the dogs! I am currently in dog-deficit mode, so this would make my day. There is so much to be thankful for!

Below are some photos from a walk down the road from my house the first week in November. It was a perfect day, brisk enough to need a jacket but warm enough to enjoy the walk.

This is the road that leads to our house... ours is at the end of the road near the red car. I turned around to take this shot.

Another view of leaves falling on the road.

This is the road I live on... It zig zags down to meet the rail trail.

Our road meets the trail.
Vivid leaves.

Someone's no hunting sign fell over.

Gorgeous sun kissed leaves.

Looking down at the trail, tiny leaves are nature's confetti.


Peaceful woods.

About fifteen minutes down the rail trail, I came across a bridge (to the left, not in the picture) and a stream.

You can walk off the trail at this point, down some steps burrowed
in the embankment going down to the creek.
Perhaps you can see the steps here leading down to the water.

I didn't venture down, but plan on doing so in the spring. I am thankful to have many walks to look forward to!

Tuesday, December 3, 2013

Ghost in the laundry room

Maggie soaking up the sun at the last apartment before moving to this home.

So we are living in a house built in the 1900's, and it has plenty of ahem, old home charm. Some facets of the home are quite outdated. What interests me recently is the laundry room. It seems this room has been housing a ghost. To be sure, we think it's a friendly ghost and Maggie seems to be enchanted with her, if such a thing is possible.

The first time we were alerted to a possible presence was last Sunday. We do the laundry Sunday night, and make sure to get the clothing out of the dryer straight away so that Karl's shirts stay wrinkle free. So on this particular evening when we heard the dryer stop, we went in and the dryer door was hanging open. Odd, because it never popped open on its own before in the last several years I have been using it. 

We keep Maggie in the laundry room at night as she is still playful and likes to pounce on sleeping people if she has free roam of the house. Especially sleeping people who are light sleepers and can't function without rest. So the other evening, Karl got up in the middle of the night. He heard something in the upstairs tv room and looked over and saw a shadow. He said, "Maggie, is that you?" And what do you know, it was her. But I had closed Maggie up in the laundry room. The next day we tested the laundry room door repeatedly, each of us being on the inside of the room trying to jostle door open as if we were a cat. But the door is hung so that it won't close completely unless it is latched, and once latched, no amount of bumping will release it from the latch. We were kind of freaked out about this, but in a good way. We eventually concluded there must really be a ghost in the laundry room.

The ghost probably wants to get our attention, to let us know it is there. It isn't trying to get my attention as much as Karl's though because he was the one who saw the dryer door first, not me, and he was the one who saw Maggie at night. I do wonder if the laundry room was once a bedroom. Or maybe at one time it was a porch, because the structure inside doesn't match the rest of the house.

I suppose that the oddest thing I've noticed recently is that Maggie wants to be put in the laundry room at night. Back at the last apartment, she stayed in the kitchen at night. Come 10 pm each night, this girl would start a twitching her tail in a frenzy, laying in wait in other rooms all skittish and nervous, ready to run the second I advanced to scoop her up and part ways for the night. It didn't matter if I shook the treat bag or pulled out her favorite plastic romping bag. These enticements caused her to burrow even more deeply under the coach or bed she chose to hide under. I had to be crafty and sneaky each evening in order to shut the door with her behind it without causing too much drama. And I would have to quickly leave the first floor because she would cry at the door wanting out.

Here it is different. Starting the first week at the new house, Maggie began to climb my leg by 10 pm begging me to "take" her to her room. By "take," I mean that she leads the way and I follow her. She meows loudly on and off for a good half hour or more until I follow her to the laundry room where her food and water dish are already filled. Then she waits in there until I turn off the light and close the door. And she is quiet after I shut the door, even if I stay up late and talk near her door.

I remarked to Karl about the change in Maggie's routine and joked that perhaps she has taken a shine to the laundry room ghost, and that's why she is keen to go in there at night. I jokingly ask Maggie to let us in on what goes on in there at night, and once she looked up at me shocked, then quickly went to being placid Maggie who pretends not to understand.