Tag: memories

One can dream
chronic illness, Coping, The Present

Don’t Dream It’s Over

Good Monday morning, my people. What a most glorious weather weekend! Finally, we here in the bowels of Texas have had some fantastical temperatures. Way better than the 90+ temps from last weekend. I was able to get out and enjoy some of this myself. Awesome!

So I am at the gas station on Friday afternoon and I hear this song “Don’t Dream It’s Over” by Crowded House blasting through the outside stereo system (I mean, who in their right mind can pump gas without a soundtrack?) except, unfortunately, in our skewed one dimensional universe, it isn’t Crowded House I hear singing this melody. Actually, I’m not even sure who it is, but it freaks me out all the same. I mean, this song isn’t THAT old and someone has already remade it? And the remake isn’t even a good one. Seriously? Can we not come up with any new ideas, songs, writing, etc. that isn’t just a remake of the old? I know, I know. Most likely, my aggravation is just a sign of my aging.

But the song takes me back to when it was first released in 1986. Ok, ok, that was 30 solid years ago, but it certainly doesn’t excuse the horrible remake of the Original. Yes, I was in high school, a sophomore or junior, and it was a song that was popular and played on the radio incessently.  This was BL, Before Lyme, and I was into so much, and I had the energy to do pretty much whatever I set my mind to! In high school, I was a member of the school paper so I went to all kinds of high school sporting events (my entry level postion was a sports writer – too funny), and then I worked my way up to editor my senior year. As most teenage kids, I was very social. My circle of friends was far and wide. At 16, in Kansas, I could drive already and so, this made getting together with friends way easier than not. 

All that energy! If only I could have bottled some up and saved it for a rainy day or a rainy year! My world is so limited now that I am dealing with a chronic illness. Hey now, I am not trying to be depressing nor morose, it’s just the hard truth right now. I am sure if you are dealing with a chronic illness also that you “get it.”  There’s no one to blame and no one at fault about this situation. It just IS.

At this point, in the throes of severe fatigue, I work and I rest. These are pretty much the only 2 things I can manage at present. Sometimes, I move out of my body for a few seconds and view myself as an outsider. And when I do this, it feels so weird. How can I be so tired and fatigued all of the time? How do other people manage to work and be social? How does anyone have the gumption to get up early on a Saturday, take care of children, go to events, and other things? All in one day???  

But then, of course, I remember these are all things I used to do as well, without a thought about how I might be able to juggle all kinds of things going on each and every day. 

I guess I am living in an alternative universe for now. A universe where fatigue rules, and Miley Cyrus sings, “Don’t Dream It’s Over.”  Hopefully, here soon, I’ll be back in the real world where I’ll “Get to know the feeling of liberation and relief.” Until then, my pretties, take it easy and enjoy the REAL SONG: 

 

Peace – B    #LivingwithLyme

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Coping, memories

Escaping Lyme – Memory #1

When I feel really horrible, a migraine, nauseated, joint pain, and it is difficult to be here in the “present”, I escape if at all possible into my mind, into my memories. Usually, it is a worthwhile distraction.

 

When I was a child, my family and I lived in Upstate New York. My parents married young, my mom 19 and my dad was 21 or 22? My father became a high school Physics teacher in a rural New York township and my mom stayed home with us, me, then my two brothers. I think I was a little over a year old when they bought a very old farmhouse. Located on a mountain and accessed by a dirt road, we were isolated as the only family in that area to stay year round. There were other homes up in that area, although one could not see them from our house, but these other places were weekend retreats for New Yorkers who lived in the City. We lived in this house and in this area until I was 12. Most of the memories I like to escape to are from this time period.

Memory #1 Escape – Snow:

Sometimes, when I feel so horrible I like to think about the snow. Yes, of course I romanticize it; I wasn’t the one trying to keep the house heated, or the one trying to get to work. For me, snow was always awesome and amazing. One of the best feelings ever is being outside in the deep, deep cold, the silent, penetrating cold, breathing hot air into the ski mask you have on because breathing in the cold air hurts your lungs. It’s the simultaneousness of breathing in the bitter chill, burning your lungs and nose hairs alike, then breathing out the hot, the hotness of your breath that turns to steam that rises on your cheeks and into your nose.

So snow. After the storm rides through, it becomes an irresistible and impenetrable quiet. All I can hear is the crunching of my moon boots through the crusty topping of the snowdrifts. If I stand for a minute, the silence itself is almost a sound. Some describe it as a blanket, the snow, but more so and for me, snow is a buffer from the outside world. Out in the wintery landscape, one feels enveloped and safe, encapsulated in the moment. Nothing breaks the eloquent silence and you don’t want it to ever end. The closeness. The buffer. The insurmountable quiet.

It’s cold but I am wearing a snowmobile suit. It takes forever to dress this 6 year- old ragamuffin. First, gloves, hat, scarf. Then legs of the suit and slide into the snow boots. Now, arms in, make sure the gloves are tucked into sleeves (this is why we put gloves on first), then zip up. OH. Make sure to go to the bathroom before dressing for outside. We never had ear muffs. Always a ski hat pulled down over the ears and maybe another scarf wrapped around the ears and the nose/mouth.

cold-snow-forest-trees-medium.jpeg

Heading out into that stillness, that world of endless white, hours of pure fun and exercise awaited us. One time, a blizzard came through at Easter. It blew hard and the drifts were monstrous. When it finally subsided, my brother Brad and I headed out to the side yard along the rock wall. The drifts were utterly amazing. We started digging. The snow was perfect. The outside of the drift was caked together and solid. It held fast as we tunneled into the pillowy insides. We worked for quite a while, scooping and moving snow. Finally, we could both sit inside. We laughed at our good fortune and our lovely handiwork. Our little hangout held fast for several days until it started to warm up a bit and began to melt.

Our faces burn red from the frosty air. When we get inside next to the warm fire that reaches into our muscles and works into our bones in a way like nothing else, our mom will put Bag Balm on our rosy cheeks and our noses so they wouldn’t chafe. We’ll be exceptionally tired out. The kind of tired that feels good though, you know? While we unthaw, we put up our suits, shake off our boots, put everything by the stove so it will dry out. Once warm, we can barely keep our eyes open to eat even though we are starving. We drift off to sleep into one of the very best night’s rest we’ll ever have again.

Peace out there today – Belle

All Mixed Up
chronic illness, Coping, new normal, The Present

Who am I?

I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.

An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.

Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.

It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.

Everything about me seems more vague than it ever was before. Lyme has seeped its way into my neurological system, into my brain. Weaving itself into my memories, my thoughts, my ideas, my authenticity, I can’t navigate my way through any of it. I keep telling myself that my foundation, the true me is there, stable, indestructible, unwavering, and most of the time, I feel that this is true. But there are the other times. The times where I struggle to find my way back to Me, to the inside world. Lyme chips away at short-term memory. It can produce “‘a microedema, or swelling in the brain,’ says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS)…”

Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience.  “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.

How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?

Who am I?
Who am I?

 

Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.

Take care Warriors.

Until next time – B

**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.