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A Dream Of You

Last night I dreamt you had come back to me. It was as though the last several months were just a ruse, a strange fiction whose purpose and origin were like gossamer on the wind.

You were sitting in bed with me by your side. We talked about your medications as you put them into your organizers. You spilled some on the blanket and I helped you pick them up. We argued briefly about one of them. Why is that the main thing I remember from this dream? That’s not nice.

Couldn’t I have just seen your face, your beautiful smile and loving eyes? Could we not have simply held each other again, your head upon my chest and our hands interlocked? This is how I need to remember you, in my arms, your golden hair caressing my cheek and neck, your soft lips against mine, your warm loving arms wrapped around me as mine around you. To say “I love you” again, not to the air or the portraits or the keyboard and screen, but to YOU, the real you, the you that is my heart, my soul, my mate. What I wouldn’t give for this.

The dream ends and the reality of another day must be faced. Alone, yet unalone. Sometimes it’s much easier to say that than to feel it. Please remember to remind me when you are near. I love you. I loved you.

two lovers embrace in a stormy yet calm sleeping position
To have and to hold…
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A Grief Observed, part 4

Third Night

I give your mom the leopard blanket, and she wraps it around her immediately. It smells like our room. D gets some of your smell & love from it too before bed. I take out the laptop to find some pictures. I sit by Mom’s bed and show her. Some of my own, but we try to look at yours mostly because of how you loved to touch them up and make them pretty.

You never needed anything extra to look beautiful, but you always knew how to shine.

We look at memories of Christmas, Vegas, Wicked, the fair, our families and our nieces and nephews being born. And you were always so happy, even though we couldn’t have our own. Hadn’t. We didn’t know.. But you knew. Somehow. You had faith that we would find a way. It wouldn’t be easy. Your pictures are all I have right now. Thank you for taking so many, for always insisting that we have them even when I didn’t feel like it.  Thank you for making sure that I backed them up when you changed phones and laptops. We have so many pictures of so many good memories together. Mom and I will never forget how many sweet scrapbook-like projects you made for us, for Valentine’s or Mother’s days. You always found the best pictures of everybody, and added your quotes and designs. We won’t get any more though. It’s not fair. Why can’t you come back and make more?

I try to sleep. This time I have your unicorn blanket and your bathrobe. As well as your pillow from before. I need a fan on me in the warm house. The air mattress is pretty okay. Most of us get up at one time or another in the wee hours, snacking on a cheesecake or something from the dinner package. I use your sleeping meds this time because I know it helps. You always made sure I was taken care of, even though it was my job to take care of you more. I love you. I loved you.

Third Day

Today is hard, but it helps to be with your family. Our family. I have some leftovers for breakfast and C makes coffee. I still don’t feel right. D says I probably don’t know what to do with myself because I’m used to busying-about for you. That’s somewhat true. But mostly I just need you here.

I start this journal today. I sit in your favorite recliner chair with the laptop and just write. I am still tired. We need to start looking at mortuaries but I can’t get myself up and dressed until it’s almost noon. We try one place but they closed. We try another but we don’t like it. Finally your mom just has a wonderful lightbulb moment. We should do it in Redlands. That’s your first home, and where your friend from high school was buried. We all immediately like the idea. Well, as much as you can in this situation.

Brother & his fam came over again. S has oodles of straws and other random bundles of things, we don’t even know what she does with them. You loved her so much. And she loved you. We won’t know how to tell her when she’s old enough. We won’t even know when she’s old enough. Also your aunt B came and brought some more food. She offers to open her home for the family and friends after the service, since we’ve decided on Redlands. That helps ease D’s mind a bit.

Mom, D and I drive over to Redlands to get to the chosen chapel before they close. We definitely like it much better than the other places. We sign the release form for them to get you from the county. We would have wanted it to happen sooner but they can’t do anything on Sundays. We make plans to come back Monday afternoon to finalize all the arrangements.

It is nice to ride in the car with them, we can all reminisce about you. It’s amazing how much effort from your family went into making sure we met for our first date, from your aunts convincing you to take the date in the first place, to your mom making sure you waited for me after I was running so horribly late. I am so lucky, so blessed that they did. That was the beginning of the best, most wonderful ten years of my life.

grief-quote-hardest-let-go-angels-carry

LlamaLimo Log: Ever have a Bad Day?

Featuredwoman driving for uber

For a driver, most days aren’t bad — you get the person in that car, and they do their own thing. A few try and talk your ear off, or sit silent, staring out the window. Those type average out. But then you get those that are Having A Bad Day. That phrase will soon make you want to hide — ask any driver. The horrid part is, it may not be anything that actually happens to them; they could get a text or call and it would start. You learn to keep a close eye out for the signs.

Since Alice moved out, much to the relief of our night drivers — the parties going on after she was sound asleep not only made you wonder exactly how hard she slept, but also made walking outside an adventure, not to mention trying to squeeze the car into or out of the driveway — these situations seemed to have slowed. No more Josh “walking his dog” and then coming to chat; the drama of young people and their relationships had moved to another area. And Bob, coming over to pee on tires just as you were ready to back up, was starting to become a distant memory. I should have guessed it was too good to last.

One of the longer-term residents of the neighborhood, Adam, had his ups and downs recently. We were aware of it, as he was of the temperament to either be sullen and walk off his thoughts, or to create ideas and things, and to experiment with solutions to issues that were tough to solve, even for experts. With him in the area, there was never a lack of conversation on widely divergent topics to listen in on, when he and his friends got together — those varied depending on how welcoming he was, and frankly, how dangerous the experiments were.

After a bout with his now-ex girlfriend, Adam had gone into a cycle of Bad Days, and then found something to reignite his passion. He now would wave, and the group of people around got smaller, which normally was a good sign that he was working on something that wouldn’t burn, let off weird noises, or need to be transported someplace “to test it out”. The music they played usually suited our tastes, and even the winter season didn’t seem to slow things much.

However, something happened, and Adam Had A Bad Day. The music stopped, the people vanished, and the hours-long walks after dark started. There were no requests for rides, or only for short ones — a mile or so and back to pick up cheese-flavored puffed corn (his snack of choice). The silence bothered me, but not enough to really be too worried about it. The rides Adam asked for were quick enough that even A Bad Day shouldn’t affect me much.

The weather has been cyclic — snow, then cold, then nearly spring temperatures, and repeat. We actually had snow on the ground for a few days (and the local police force frantic with accidents, caused by those who forget that even if snow looks pretty, it isn’t nice to drive through once it melts and refreezes). We were being cautious, and telling folks that the ride would likely take twice as long as usual.

Adam called, and seemed up and cheerful — and wanted more than puffed corn. I personally was thankful for this; it was my turn to grab lunch for the office, and I wanted a particular sandwich that was a bit out of the way. So when Adam called, and wanted a ride to that same place — well, life just works sometimes, doesn’t it? I sent the order in from the business fax (yes, I know, but that’s how they wanted it done!) and gathered the keys, my jacket, and left out the door, with anticipation of a fresh, hot sandwich and my favorite fizzy drink in my future.

Little did I know that seemingly everyone in the world had decided that today was the day to go out. Traffic, normally even on a warm summer day, would have been half of what it was now — add in the ice-covered roadways, and you had to plan for potential disaster. One look at the higher-traffic roads, and I decided to take an alternate route. Which wasn’t a good idea — apparently I drove by something or someone that was not good for Adam.

I hear Adam shift, and look in the mirror just in time to see the hood of the hoodie go over his head. This is not good; it’s time to worry when the hood is tugged down. A telltale sign with Adam is that the more you can see of his head, the better things are going. Even when it feels below zero outside. So, hoping that this is only a brief mood, we keep going. And, it looks like I made the correct choice — there was nearly an accident outside the restaurant with someone trying to turn in, and the car didn’t want to stop even to cross traffic. At least I’m going the correct direction just to turn in!

Yes, you guessed correctly – there is a line for the drive-up window. Thankfully not long enough that there’s a danger of getting the car hit, but enough to be a wait. And Adam’s hood is still down. This means that he is now Having A Bad Day. And I’m the only one that is close enough to listen if he wants to talk.

There are days that I physically check from the back seats to make sure there isn’t a bar-tending license, or even psychology degree, visible from there. Some folks just want to talk things out, and that’s fine with me — I can listen and drive in circles for them. But some expect me to have opinions at best, and answers that will work for them in any situation. I once made the mistake of making a comment that solved one person’s problems — soon I had all of their friends in the car for literally weeks, wanting answers. Now I know why gurus choose the top of the mountain. Some of them actually got angry with me that I didn’t have a ready solution to their problem!

And the hood just got tugged down again, thankfully after he passed me his written order, and the money to pay for it. He’s still silent, so the radio plays quietly in the car, competing with the rap from the car in front of us, the new country from a parked car nearby, and something else that was making the entire car vibrate directly across from us in line. I guess I should have be thankful they had the windows up.

Thankfully, they turned off the music before rolling down the window to order. I looked to make a comment to Adam, and the words stopped — the hood was down below the mustache, and tears were flowing. As if sensing my gaze, he turned violently away from the building, and a slight sob escaped.

After several rounds of mental cursing, I decide, since the Bad Day is obviously getting worse without me doing anything, I’d wait until I was spoken to, or one of the other signs that the Bad Day was spreading. I went back to listening to music, and watching the cars go sideways down the road I was facing.

Oh come on! Whoever you are in the blue car — make up your mind before you get to the speaker! You’ve been in line for over three minutes now, and the menu is the same as it’s been for the last six months. You should at least know what you want, and even if they reordered the menu, you should be able to find it in less than the two full minutes you’ve been sitting there staring at the sign. Well, at least the line at the pay window is gone — but I bet I’ll be done with my order (I’m two cars back) before that person gets done paying.

Finally I get to the speaker, and tell them there will be two tickets on this order. Thankfully, the voice on the speaker is familiar, so it isn’t going to be an issue. I mention the business name, and make sure the order is rang up correctly. I start on Adam’s order, and get as far as the drink before that blue car pulls up to the pickup window. I was almost correct; another two seconds, and I’m pulling forward. Adam is still inside his hoodie, and facing away from the building — did he fall asleep? And since silence seems to be a good thing, I’m darned if I’m going to disturb him to hand him food and drink — so while keeping an eye on the line, I pull out a drink holder for the company, and one for his food and drink. With that settled, I pull up to pay.

There is a comment from the cashier that the fried items are about a minute from done, so I nod and finish paperwork for this half of the ride, while waiting my turn to pick up food. This also allows me to clear things out, and make sure that my logs don’t have drink spilled on them. I’m bad about this — I know I should do it, but some days you get rushed, and then never take the time to put things back. Plus, what better to do while waiting for…

FOOD!

I apologize for that, but this place gives the food as fresh as possible, and make sure it’s correct before handing it out. The drinks for the office came in a carrier, with Adam’s handed out separately. And then, hot, wonderful meals — all in their own bags, and labeled with names for my order. With only moments to get everything arranged, I set things onto the seat, and in the carriers, and got out of the way of the next person. A shift forward a few feet so as to let the next car access the window, and then some moving things around to make sure nothing slides onto the floor if I were to try and stop in a hurry.

Adam is now seriously Having A Bad Day — even the scent of food isn’t enough to bring him out. But things aren’t getting worse, so silence isn’t a bad thing, especially with the roads as they are. Sliding into a pole because you take your attention off the road isn’t an image I want presented of the company. Carefully moving forward, and watching for other drivers, we turn onto the main road; back toward Adam’s house, in lieu of any other communication.

A block later, and the flood of words starts. Adam is still turtled in his hoodie, but that doesn’t seem to stop him. I think this is what must have been disturbing him — the words cover everything from jeans that didn’t fit that morning, to his issues at work, and “finding another job” problems. It’s good that he doesn’t seem to expect a response, because I’d have issues getting a word in! The narrative is broken by sobs, and a request to go home promptly. At a red light, I hand back his large drink, and hear the straw suck air before we’ve gone two blocks.

The hood is up a bit, and the silence doesn’t feel as strained as the ride completes. I sit here, hoping that the telephone doesn’t ring and send him one direction or another. He mentions that a particular friend is coming to visit later, and I sigh silently in relief — that one is a good listener, and may be able to bring him back to normal.

The bill Adam hands me is enough to cover the fare, and he walks off while I’m getting change. Throwing the car in park, I grab his food (which he forgot), along with the change from both the meal and the fare, and catch up to him. He takes the food, and looks at the money, then walks in the house. Okay — even when Having A Bad Day, he still in generous with the tip. I stuff the money from the food bill into his mail box (it’s an old-style through-the-door one) and head back to provide lunch for the crew.

Then discover, while getting out of the car, that I had given my sandwich — the one I’d been dreaming about for days — to Adam!

Shrugging my shoulders, I resign myself to enjoying my drink and his lunch. And it isn’t so Bad after all.

driver only carries five dollars change and random other junk
Are you MacGyver??!?

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A Grief Observed, part 3

Second Day

The parents’ dogs wake everybody up at 5am. They must be really restless. My dad gets up for work again. I have some oatmeal to try to feel routine. And some of your poppy seed muffin. It’s all dry to my mouth. I can’t make it the same as I would at home. Our home. You always made our home feel warm and cozy. The dogs finally settle down and I curl up in my spot on the recliner again, this time with your pillow and the blanket that you gave my mom.

I doze. I dream bits and pieces of you. I think I hear your whistle, as you would do when I was working and you needed something. Why didn’t I check on you earlier? I just thought you were asleep. You needed rest, your body was in pain. But I should have felt something was wrong. Why didn’t I know something was wrong? Could I have done something? I don’t understand. Everybody tells me it’s not my fault. Is it my fault? Please tell me. Please forgive me. I was supposed to take care of you.

Is it still morning? Why is time going so slow? But is that what I wanted? It doesn’t make any sense. You should be here. I should be there. Why are we not together. Mom wants us to go to brunch. We decide on Penfolds. You loved that place, with Kristen when she came down to visit. We always had so much leftovers. You know I loved leftovers. We always shared everything. I can’t eat much today, but I try.

We’re heading up to your family’s house. I have to pick up a few more things from our room. I take a few clean blankets, the unicorns and a leopard. And your bathrobe. I kneel down by the bed again. I had to use the bathroom. Your things are all still there, waiting for you to come back. I don’t know what to do with myself for a few minutes. I want you to come in the door and tell me it’s all okay. Where have you gone?

The house is busy. They just had new carpet put in, and repainted stuff. The old couch and loveseat are up for sale. New dressers are here, other things will come later. I arrive just when Mom and D get back from something. Your brother too. We hug. You loved his daughter like your own. We have a moment. But he knows you want us to be okay. We have to try for you. It’s hard.

We get busy moving furniture around. It’s good to keep our hands busy. C is working the hardest, but I can tell he’s over-extended. He takes breaks at least. L arrives to help too. Brother is being the electrician and entertainment tech. Mom’s dresser is way too tall to put her big TV on. They’ll have to figure something else out. S is doing well in her speech therapy class, naming shapes and things. J arrives with her a bit later. S is being “flirty” with me again. You always said that too. [S is our niece, about 3 years old at this point.]

Some of my family arranged a meal delivery. It was sweet of them to do. Dahlia’s Italian. It’s very good. Way more food than we can handle, but we all enjoy some. You would have liked the garlic bread the most. I liked the lasagna. Mon and D got pizza from the place one time. I have a beer. It doesn’t taste like anything, but it helps a little.

I talk with M outside for a little while. She’s been so helpful for your mom. Even though she’s not a very verbal person right now. I know she’s hurting so much for you. And your dad too. He took it the worst that night. But we all have to cope in our ways. It’s still not fair. Why can’t you come back to us? I wish that the doctors had done more. Could they have? Could I? What was it, what happened? We won’t know for weeks. The coroner said it could take even a month or more. I guess they want to be sure. It’s just not fair. I want an answer. But I don’t know if it will help. Would they tell me a time? I didn’t ask yet.

angelic statue mourning over graveyard

Dreams – The Portal

Featuredswirling portal of red and blue

They came through the portal; that’s what we called it. Someone did something they shouldn’t have. The portal came into being during a science experiment; it was a hole into who knows where. They were short, squat and wore some sort of suit; they couldn’t breath in our atmosphere.

There was a war at first. We didn’t win. There were few of us remaining, wandering through demolished cities, scrounging to survive and hiding. They were hunting us. Nowadays they didn’t kill us outright. In fact, we didn’t really know what they did with those they captured — no one ever came back. All we know is they had a weapon that rendered the target docile, even happy to be captured.

I had a companion. Until now we had successfully avoided being discovered. But right now they are tracking me. We had separated to draw them in two directions, hopefully losing them. My friend got caught; once zapped, he gave in. Right now I’m hiding in the rubble of an apartment building, huddled behind a wall. One of them is on my trail and closing; slowly, but deliberately, blocking off any escape route, like a game of chess. I am trapped. Looking around for anything I could use as a weapon, I see a table knife in the dirt. I pick it up, and as it comes through the door, I swing the knife across the tubes running into the face plate…

Thank you to Mr. D4v3 for the guest-post! Very entertaining. Hope you readers enjoy it. ❤

-N.

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A Grief Observed, part 2

To maintain its “raw-ness”, I will try to refrain from making any alterations to the original writing. The only exceptions being names (except the dog, you all know her already), and if I feel something is absolutely critical for clarity/continuity. In the latter case, you’ll see [italics in square-brackets]. I will occasionally add other styling for emphasis or readability.

The Day After

My mom makes me some eggs. I did okay, but I have some nausea. You always had nausea.. I’m glad you don’t anymore. But in a way I feel like it’s a part of you that’s now with me. That sounds so strange. You always told me to take something, your own medicine that you shared with anybody who ever needed some.

I play your favorite songs on YouTube. But also songs that help me deal. You always made me love more music than I would have thought possible. And you made sure I shared it with you. These are songs about loss. But also songs about life and love. You loved so much, so passionately. Anybody who took the time to know you knew that. And anybody who did not, did not understand what they missed.

You were too good for this world. But I needed you. I still need you. I love you. I loved you.

I can’t stop crying. All you wanted, all we wanted, was to have a baby and a family. We can’t do that now. It’s not fair. You would have been the best mommy in the world. You have so much love to give. I am so lucky to have had you. But it’s not fair that you’re gone. I need your love, your laugh, your touch. You made me whole. I can’t understand. Why are you gone?

I call L and break down. He gets on the road right away to come from Vegas. Dad goes to work for a little while. I’m sure it’s hard to work right now, but things don’t stop. Why can’t the world stop? I just need it stop. But time does slow down. I stare at the clock. I sit in the recliner couch near the best air vent in the house. We always kept our place cold for you. Now I can’t stand even being mildly warm. I tried to have a fan on last night but it wasn’t enough.

I go back to our house to get some more things. I need your pillow. I need one of your blankets. But I can’t bear to use the one I found you in. I make the bed for you as if you’re coming back. I even rinse out your cool drink cups. Why can’t you come back and use them again? I kneel by the bed with my head where you were. Are you still there? No.. It smells like you. But it also smells like something else. I can’t say it right now.

Second Night

L arrives. They pick up some Rubio’s for dinner. I’m not sure how I can eat. But I have some chips and beans, and finally a fish taco. Still nauseous. We just talk about memories. I watch Supernatural on Netflix. I try to explain it to them but you know my favorite episodes are terrible examples of the show because of how abnormal they are. You loved to laugh at that.

I take a benadryl and try to sleep. I put on Jurassic Park [one of her all-time favorite movies] in the background. Kiera is now sleeping in her crate just in front of me. She had escaped out the front door earlier. I don’t understand why. But she was looking for you. She wandered down the street. I couldn’t get her to come to me. I cried because I did not want to lose her. She was your baby, our baby. She loved you so much. I know she knows something is wrong. Please try to tell her it’s okay, that her mama loves her from Heaven.

angel with broken wings cries

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Today You Would Be 34

Today is short, sad, and stubborn. Yet agonizingly long. Today is K’s 34th birthday. Was. Would have been? I don’t know. It’s still a significant day in our lives. It will be for a long time.

But you don’t age anymore. You’re brilliantly sparkling in a paradise of boundless wonder and joy. Or is it a black morass of void and crushing silence? No, I refuse to believe that. It is an endless beach of purple sunsets and golden sunrises, glittering green glass seas with snow white crests, singing songbirds and gleefully galloping horses and huskies.

Today is about family, lasting memories and your impact on our lives. You are never forgotten, never reduced, never minimized. Always fondly, always missed, always adored.

Your nieces are the picture of beauty and happiness. We never had children ourselves, regretfully. Yet your spirit lives on through them and through your brother, sister-in-law, mother, aunt, and grandma, who are the most wonderful parents, grandmother (“grabba”), great-aunt, and great-grandma (“gi-gi”) in the world.

How do we go on without you? Your life was not supposed to end so soon. You were supposed to have so many more birthdays, anniversaries, holidays. Movies, concerts, meals, get-togethers, car-rides, conversations. Sleepless nights, painful days, disappointing doctor appointments, difficult obstacles, debt collector letters. Triumphant texts, daring dreams, miraculous recoveries, supportive friends. Loving embraces, longing voice mails, sweet nothings, sexy nighttimes, cozy comforts, and stalwart standing-by. Through thick and thin, for better or worse.

Til death do us part.

And it did. God help us it did.

We will never be the same. Our lives are changed for good.

I will never be the same. I’m everything I am, because you loved me.

And because I lost you.

I loved you.

I love you.

Always.

fairy on beach with moonscape

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You Don’t Look Sick…

These are some phrases we would commonly hear from doctors, friends, even family, who did not or could not fully understand what K was going through.

You don’t look sick..

You’re too young to have these kinds of problems.

Oh you’ve [gained/lost] weight!

Really, they have no idea what’s wrong? That’s so strange.

Well, we didn’t know how you’d be feeling, so we just weren’t sure if we should invite you.

It’s not hot in here, you’re crazy!

Why do you need the A/C on when it’s 65 degrees out?

Are you really sure you could handle a new baby all by yourself?

Oh just get some rest and try to feel better, you’ll be fine.

Why didn’t you just get some sleep?

If she had the words to explain how maddening it can be to hear those phrases/questions over and over again, she would have shouted them from the rooftop. Or at least put them to pen and paper. But perhaps I can be her proxy in this.

By the way, there are several other writers who are much more articulate than I, and are first-hand sufferers, rather than second-hand; so PLEASE, go read their stories too.

the chronic pain cycle
I could not have drawn it any better. This was exactly K’s struggle.

There are several kinds of chronic, debilitating, yet non-outwardly-obvious conditions and ailments that patients like K deal with. Just this week, in fact, I learned about a friend of mine whose wife is in similar circumstances. Certainly there was at least one other woman who K connected with over their shared illnesses as well.

One of them is fibromyalgia. I won’t pretend to understand it fully myself, but I’ve observed its effects and its sometimes flagrant misinterpretation by those who are fortunate enough NOT to deal with it. When combined with other forms of chronic pain — in her case, spinal disc disintegration pain — it can be nearly paralyzing. (Actual paralysis could of course be an unfortunate outcome of a botched surgical attempt to fix said problem, as ironic as that may be.) The problem here is that fibro (for short) rarely manifests with any outwardly obvious signs. To the world, K often looked fairly “normal” (for her, anyway; we’ll get into that later). It also comes in waves. Some weeks, or days, will be much worse. Sometimes, the lucky ones will have a day or two where it’s not as bad, where they can actually get up, put on a happy face, go out into the world and do something social. And then, often, they need another few weeks or months just to recover.

Anxiety is another one. People who don’t understand anxiety first-hand seem to think of it as merely something to be whisked-away by meditation or similar “mind-over-matter” hand-wavy remedies. (Again, NOT a medical expert, and not a patient of this myself.) The actual fact is that K, and others, have tried all such suggestions and remedies, to no avail. They WISH it was that easy. You have no idea how many times anxiety sufferers have lain awake at night, silently screaming at their own brains to “SHUT the hell OFF!”. They cannot control it. And you, as a support person, need to realize that. It’s not your job to repeat tired unhelpful platitudes. No, you must simply be present, reassuring, sympathetic, and supportive. For example, sometimes in K’s case, I would literally give her a bear-hug and squeeze her tight to help calm the nerves. There’s probably a medical term for this — I know I saw it in Grey’s Anatomy.

You may have noticed the quotes about temperature, at the beginning. This is probably a much rarer facet of the medical mystery than most people deal with, but it’s very real. Whatever was causing K’s nervous system to over-react and over-register pain signals, seemed to also cause a profound heat and sunlight sensitivity. We’d been to the beach in our 20’s, but not for the past several years. When she did get out and about on a sunny day, her face and chest became bright-red, appearing almost as an instant-sunburn. But it wasn’t a burn. It was redness from within, from the sub-surface layers of skin and blood and nerves. She had to sit in the car with the cold A/C blasting her face, just to feel normal again. And at home, we had to run the central A/C far below 70 to make her remotely comfortable. Often with the airflow pointed straight at her face and body. I even bought a special wall-register (vent) that could be more easily adjusted than most, so that when she was sitting in bed it could hit her squarely.

Again, to someone who does not understand or has never felt these effects, this would seem ridiculous. Surely, you’re just being a spoiled person, wanting such cold air all the time? And occasionally I felt that way too, as I was begging the electric company to give us a break on our payment arrangements, or filling out a renewal form for the medical discount. Yet I can assure you, it was a very real, tangible effect. The few times when the A/C broke down, she literally became sick without it, as the temperature rose into the 80s.

But back to pain, and the more common facets of whatever this unholy conglomerate of diseases and disorders may have been. Those without chronic pain cannot understand, and are quick to dismiss or to gloss over the struggles that people like K face. It becomes easy to overlook them in your social plans, because you know that, 9 times out of 10, they will probably decline. It becomes a bad habit to offer platitudes or cliches, because you feel there’s nothing else you can do, or because you think that the “standard” solutions and treatments “should have worked”, or that “they’re just stubborn and won’t try them.” When in fact, they have tried; they have NOT worked; and they are TIRED of trying and trying again just to appease the next person who thinks they’ve got it all figured out.

Those who do not live the pain, also find it easy to assume and pass judgement. When she couldn’t eat anything but buttered toast for nearly 2 weeks straight, due to constant nausea; “Did you lose weight?” Or when she drank more than a couple cans of soda per day because it was the only substance that actually tasted like anything; “Oh that’s not good for you, maybe that’s part of your problem.” When she couldn’t get out of bed for several weeks and developed a sore that I had to dress, lance, and dress again, until it faded away; “Why didn’t you just go to the doctor?”

With a chronic pain patient, especially with these other complicating conditions, doctors are no longer your friends. They’re like little espionage agents, working for a government that doesn’t want your citizenship, secretly sharing information on you when it pleases their whims, so that you never know when you might suddenly be cornered in a back-alley and interrogated about your medication regimen. Or, even worse, told that you have to throw it all out and start from scratch because one agent doesn’t trust the other’s case-history. When in reality, the scans and the intelligence all shows the same thing: It’s complicated, messy, difficult, and probably beyond any single person’s expertise. But do spies ever play well with other spies? Not if movies have taught us anything.

No, the best K could do was to find, thank God, one solitary compassionate soul at a local pain clinic who at least cared enough to LISTEN, to be understanding, to make medication changes slowly and gradually, to fight for her case when others would dismiss it, and to always strive to put her comfort and sanity first, even above “standard medical procedure”. Such a luxury was never afforded her at the urgent-cares, ERs, and hospitals.

But I’m already nearing 1300 words, so I’m going to save those hot-buttons for another time and post. And migraines.. somebody remind me to add a blurb about migraines next time. ❤