You Should Be Here…

Today was Avie’s birthday. She’s six years old already—yeah, it’s crazy. Where does the time go? Seriously. Where. Does. It. Go. Seems like it was just yesterday that I was sitting on those big blue foam mats in the kids’ playroom at my Gram’s, watching roll around until she ran out of room, and thinking “she’s mobile”. And in the next moment thinking “oh no, it’s starting”—pretty soon she’ll be walking and those gummy smiles and baby babble will turn into words—and that once the words started, there’d be no stopping her. Six years and I wasn’t wrong. She’s a little spitfire, that one. She just doesn’t stop…the talking, the running around, the attitude, the energy…it doesn’t stop. She’ll talk your ear off with that Southern accent of hers…which we can’t for the life of us figure out where she got it from. She’s all sass and Miss. I-Do-What-I-Want, so much so that it gets on your nerves sometimes, and other times when you can’t help but smile at her dramatics. She’s fiercely independent, and grows more so with each passing day (Gee, I wonder who she gets that from… lol). Six years ago she came into this world and she’s been a light in our lives ever since. That little girl, she changed me. Hell, she saved me.


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Her birthday’s always a little bittersweet, though. My grandfather’s—or Papa, as we called him—birthday is the day before hers. He would have been 78 this year. Sadly, he never even made it to 61. Cancer. He fought a courageous battle with it for years…but ultimately he lost. I still think about it and him some times. Of what could have been and never was. I think about him now and wonder if he’d be proud of the woman I’ve become, of all my accomplishments and successes. I think about how different everything would be if he’d lived. For the most part, he was really the only male/ father figure I’d had growing up. Sure, my actual father was still there in the background with his child support checks and maybe a call or two every few years or so, if that. But my grandfather was actually there. Physically. Emotionally. I was only 12 when he died, but I felt the loss of him, all the same. I have these little snippets of memories here and there : of him picking us up from school, taking us for ice cream when we’d had a bad day or just because or even the smell of that old beat-up, brown car he used to drive and how he’d let me sit up front in the middle and play any old cassette tape that I wanted. He spoiled us—all of us—rotten, but it was out of love. He was the one who started my collection of Beanie Babies (remember those anyone?? Lol) and add to it every chance he got. Even when he was sick and weak and on the very cusp of his final moments, he stood in line and waited with me for hours at a convention just to buy 2 Beanie Babies. Though he was in pain, he never complained or said “that’s it kid, pack it up, we’re leaving”. Though I wish now that he had. Maybe it’d alleviate some of the guilt I felt then with him dying no more than a week afterwards. I was 12. I blamed myself, convinced that his decline had something to do with my having him stand in that line all those hours despite his pain, despite the fact that his circulation and legs were so bad he could hardly walk. Looking back at that 12 year old girl, I know that rationally, it wasn’t my fault. It was the cancer that had invaded, overwhelmed, and weakened his body. It was the cancer that ripped him out of our lives before we were even ready to lose him. The cancer was to blame.


*Papa*
                         *PAPA*

It’s bittersweet, but it makes me smile to think of what he would have thought about the kids. He’d have loved them and spoiled them to pieces, no doubt. Just as he did us. That Avie of ours would have given him a run for his money, that’s for sure. And of course, they’d have him wrapped around his little finger from the very start. Without a doubt they would have.


The kids have a tradition of buying birthday balloons for their “Papa” in heaven. Sometimes they’ll write a little note on theirs to him, then let them all go—convinced that when they disappear from view, that’s a sign that Papa reached down from heaven and took them all.


I don’t do that God and heaven and hell stuff. I can’t just survive on blind faith, as they seem to so easily do. I have to have tangible proof in my hand, physical evidence to back up a claim of any kind—much to my grams’ horror and outrage. She can’t believe the little girl she’d bring to church every Sunday—who literally grew up in the church—would turn out to be such an outspoken atheist. But I did. And a lot of it has to do with my grandfather’s death. I just couldn’t justify some invisible higher power—whom people claim to be “loving” and “all-knowing”—putting my grandfather what he went through. Allowing him to suffer as he did. Taking him before he had a chance to meet his beautiful great-grandchildren. Is that the will of a “loving” God? I don’t think it is. When no one could give me a good enough reason as to why my grandfather…I guess I just eventually stopped asking. I wasn’t going to find the answers I needed in some book or hymn or The Bible, so I stopped looking. Still, I go along with the kids. It’s harmless, I guess. And they’ll eventually grow up like I did and they’ll have that some choice to ask themselves and the world. I don’t want to burst their bubbles. If they say there’s a god…and that heaven is real…then it must be true, at least to them. I want them to have faith (not necessarily religion), in whichever shape it comes in. It’ll ground them, I think. And the way the world is right now—how it’ll be for them, I have a pretty good feeling that they’re going to need it. Hell, we ALL are gonna need it.

xoMESSIE


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When You’ve Had All You Can Take

I want to cry. Just when I thought I was finally getting somewhere with these doctors—nope, right back to where I started. “I’m sorry, but there’s really not much else we can do.” I got that today from my new neurologist, the guy I was just starting to like, just starting to trust that maybe—maybe he might have a clue as to what the hell was going on—and that maybe, he might be able to figure out something we could do to figure out these headaches. I’m not looking for a miracle here. I never was. I know miracles aren’t handed out every day. And with my record, it’d be a long shot. So, no I’m not asking for a cure. I’m simply asking for something to stop every day headaches, or at the very least, something to dull the really bad ones—the ones that get so out of control that they’ll literally last 2-3 days and make me, I’m not mincing words here, want to die. Like literally…make me want to die. No one understands how exhausting this is. I’m literally so tired of these headaches, both figuratively and physically. Day in and day out, not being able to do what I want to do—not being able to have a life. I had a life, before this accident. A pretty good one. Things were finally going good. I was in the city I wanted to be in. I was doing what I wanted to do. And then some random asshole decided to stop dead-cold in the middle of the fucking Interstate, for no apparent fucking reason and cause an accident. And because of that, my whole life stopped. One person’s jerk-off decision, and my life was turned upside down and inside out. And it’s not fair. It’s so fucking unfair that I just want to scream at the top of my lungs until I’m blue or hoarse or something—but I can’t even do that. Why? Because I have one of those lovely fucking headaches right now and crying and screaming—hell any noise or movement or anything really—just makes it worse. So I can’t do anything. I’m stuck. The world and life is moving around and on without me and I’m stuck here. In this bubble of pain. And I hate it. I hate it so damn much.


As you can probably surmise, my visit with the neurologist didn’t go well. I’d assumed we were going to talk about switching meds and trying yet another one in his supposedly long list of miracle headache meds that he’d spoken of in our last appointment, namely for the fact that I’ve spent the past seven weeks (on this last drug) dealing with every-day headaches, constantly nauseous, and feeling light-headed. 2 weeks ago, in the midst of yet another lovely headache, it got so bad that I passed out on the bathroom floor. Fun? Not so much. Anyhow, so I came prepared with everything he’d asked for. Including the list of all the meds I’d tried since the accident, including all the ones they tried in Nashville, like he’d asked me to put together. But when he found out about the last med not helping and took a look at the med list of all the ones they’ve tried me on, he basically threw in the towel and said that he was out of options, since I’ve tried all the meds they usually prescribe without any relief. He said it was at the point where he would typically recommend a long-term narcotic regimen for pain control. Of course, I nixed that one right away. And that’s where I really wanted to scream because it’s like they don’t even listen to you or look at your chart when they recommend things. Because if they did, he’d have seen that I’ve already tried that route. In fact, that was the first thing they tried for the headaches down in Nashville. First with the hydrocodone. Then with the Percocet. Both made the headaches worse. And according to every doctor that I spoke to, that made sense, considering they were supposedly “concussion headaches” and its common knowledge that concussion headaches don’t respond to narcotics. So yeah, been there, done that. Not a chance in hell am I looking to make these damn things worse. No thank you. And besides, who the hell wants to be on narcotics long-term? I mean, to hell with your liver function…there’s enough things to be addicted to in this world…like hell do I want it to be oxy. So I’m sure I’m probably one of the few people that’s ever refused an endless supply of narcotics, but oh well. I’m not going there. There’s no point. I’m not going to make myself sicker.


Another thing that struck me during our visit was that he came out and said that he didn’t specialize in post-traumatic headaches, so he really didn’t know what advice or treatment to advise me on. I mean that right there…you’d think as a doctor…as a neurologist…if you don’t specialize in the headaches that I’m having, then here’s a thought—how about you refer me to someone that does? I mean, I’m no genius or anything, but wouldn’t that make a hell of a lot more sense than to put us both through wasted hours of talking about nerve blocks and Botox injections and medication for migraines—which he’s already come out and made clear that I don’t have so those types of treatment will be pretty much useless against—you know? I mean, it’s just so fucking ridiculous. I could tell that he was frustrated because I was frustrated, and a big part of me wants to just stand up and be like, are you kidding me? How dare you sit there and be frustrated when you’re the doctor? You’re the one that took an oath to heal and to help and you’re literally sitting there shrugging your shoulders and giving me non-answers that I could have looked up on my own at home with my computer and Google. And you’re frustrated? Like no, dude. You don’t get to be frustrated until you’ve gone through this for over a year now—you’ve gone to half a dozen different doctors and specialists—sat through all their tests and scans and listened to them shrug it off and say oh, give it time, they’ll go away…only to be told a 13 months after ALL of that, that no, they aren’t going away, that they’re something you’re probably going to be dealing with in some capacity for the rest of your life and that oh by the way, we have no idea how to help you manage them so you have to grin and bear the pain. So no…you don’t get to be frustrated dude. I get to be frustrated. You—you fucking do NOT. That is what I would have liked to tell him. But I didn’t. Instead I just sat there while he talked away about some half-ass acupuncture idea that, to quote him “chances are, it likely won’t work but it can’t hurt to try” and this idea of a Toradol/Benadryl/Regen cocktail that he wants me to try at home (that’s the pain cocktail they typically give you when you go into the ER) which is literally so potent that it gives you ulcers—but he wants me to try it for the really bad headaches. Which of course, makes no sense at all. I’m supposed to take the cocktail when I feel a bad headache coming on—and by bad I mean one of the ones that goes for like 2-3 days. And it has to be at the onset, because it’s useless if you do it once it’s already in full-on KILL ME NOW mode. Only thing is and that he doesn’t quite get—is how am I supposed to do that when it’s not as though I have a sixth sense and can predict the future and know that the headache is going to be one of the bad ones that lasts that long. And I can’t take it at the onset of every headache. That’d be like every day at this point. I’d had no stomach lining left by the end of a week. I have no idea what this doctor is thinking. If he’s trying to help me—I really don’t get the logic. I really, really don’t.


And right now, I’m just so tired of it. I want to say to hell with all of it. The doctors, the meds, the tests, the Hail Mary’s, the last ditch attempts—all of it. I’m just so fucking tired. If anyone else has any other ideas of what to do, I’ve love to hear them. Because right now, I’m fresh out. I have nothing.

xoMESSIE