Ah, Valentine’s Day at chez triv, it has never really been candlelight and chocolate covered strawberries if you know what I mean. From our first date when Cleetus told me I was “surprisingly” attractive, to his over the top romantic marriage proposal (not right now, but sometime before the end of the year, so I can take you off on my taxes!) we just aren’t hearts and flowers kind of people. He usually gets me flowers, a card, we order take out, so that I don’t have to cook, and we’re fine with that. Anything more is too much pressure, sets expectations too high, then people wind up disappointed, crying and fighting, and who needs that? Not me, baby!

Last Saturday night, Cleetus and I took Dan to see Baboo in his play. Baboo had a supporting role, and I was a little worried, as Dan has been known to get a tad restless during a play, even when Baboo had a lead. This time was different, Dan was actually looking forward to it, he said. Baboo had come to see him play Lorenzo the previous spring in his school’s production of Pinnochio, and he now understood the allure of the stage. I told him that this would be pretty cool then, because it’s a big stage, and we had front row seats.

This time was different for me too, because for the first time since they were born, I was going to attend a performance with no headache. That’s right, no pain in my head. No turning a grimace into a smile, no wincing through any sound system glitches, nothing. Just a tiny bit of nervous waiting for the other shoe to drop…but it never did. I enjoyed the play. But wait, it gets better.

Not only did I enjoy the play, Dan enjoyed it immensely!As we sat in our padded theater seats he kept asking, how long until they turn the lights out? I told him that when I was in shows they would blink the lights, then he would know that it would be about five minutes until the lights went down, that I was pretty sure they would do that, and that the crowd would get quiet. Sure enough, just as I finished speaking, the lights flashed, and he grinned up at me. As the lights went down, he rubbed his hands together like a cartoon villian and said, “Oh, boy, here we go!”

Now, the play was Annie Jr, which is just like Annie, but a truncated version, perfect length for Dan. Baboo was playing the small, but key part of FDR, which doesn’t come in until twenty minutes before the end. This being middle school, there aren’t a lot of boys, so we played spot Baboo throughout the first hour of the play as he made appearances as a New Yorker and a Servant, and did a voice over as a radio announcer. When we saw him, Dan and I would nudge each other. But I needn’t have worried that Dan would get fidgety not seeing his brother on stage.

From the opening number he was in heaven, and I have to say those kids did a pretty good job up there. Dan was leaning over to tell me, “This is awesome!” He pointed out what he liked in the scenery, he was was moving his legs along with the dance moves, doing a few chorus line kicks–good thing I got front row, huh? And in the scene where Miss Hanigan screams? Dan turned to me and quite audibly asked, “What the hell was that?” Cleetus and I cracked up, thankfully so did the surrounding audience. I was not only able to enjoy the show, I was enjoying Dan enjoying the show.

Sitting there in that dark theater my eyes filled, thinking about how this was the first time I had ever been able to fully experience something like this. I’ve been to performances, ceremonies, IEP meetings, but always, always, part of me was fighting pain, and until this moment, I didn’t realize how much that took away. It was just the way it was. Even when I have pain pills to get me through, it’s not the same as no pain. Because the headache is still there when I take the pain pills, it’s just not as bad. So, I feel like I don’t have adequate words to describe what it was like, it’s been over 25 years since I’ve had a pain free day.

After the play we took the boys home and got Chinese take out for a late supper. Cleetus bought Baboo roses and we gave them to him then. We ate and read our fortunes and let the kids stay up too late and all in all had a fabulous evening. Throughout the whole night I just remember looking around at my little family and feeling happy, and intensely grateful.

So far the headaches are down by about a third. The only bad thing I can think of is that when they come ripping back after a pain free day they do so with an intensity that is nauseating, and I had had that pretty much under control, but so what. It’s so worth it. No, I might not be completely pain free for every event or occasion, but to have that experience for any, to see one boy perform and the other enjoy it?

To me, was priceless.

And I’m having a horrible flare. LOL! I can hardly move. It’s not like I didn’t smell this coming, because it’s been very stressful. I do what I can to alleviate it, but there’s only so much, you know? Thank the Deity Cleetus is here to help me or I don’t know what I’d do. I have been having more flares lately, worse ones. I don’t know, maybe it’s worse than flares. I know I need to see a new rheumatologist. I know that much.

Two nights ago around three am I was awakened by the sensation that I had been pulling weeds for 12 hours there day before and now was being forced to repeated the process only now with the muscles that ran from midway down my back all the way down the back of my legs screaming in protest. It’s like a cage of pain that surrounds my pelvis. I go to reach for my water to take a pill only to find a similar situation going on with my shoulders, they don’t want to cooperate at all. I can’t lay still, yet it’s painful to move. I get up.

I don’t have a doctor right now. I mean general practitioner. My doctor went back to teaching and the doctor I had as fallback guy just sent out notice that he’s going on extended leave. The practice is there, but I am not wild at all about anybody left. This is the practice that grew out of the doctor’s office I’ve been with since birth….shit. I’m very annoyed.

I cannot describe to you just how much this sucks. I’m disabled under the category of stuff that plenty of family doctors just don’t want to deal with. Or they want to start me over from scratch and no way in hell am I doing that. Trying to find a new doctor at this point will be a little slice of hell, and I know it. I need a manager to coordinate my care, not some inquisitor that I need to prove something to, been there, done that, bought the T shirt, use it for a dust rag.

I lucked out plenty when my second doctor left and my last doctor took over, she picked up my chart, looked it over, actually talked to me, and we went forward. I have not been impressed with anybody else at that practice. I read that they are taking on two new doctors, I am crossing my fingers that one of them will do. Why? Because it’s close.

I have to do something. I now have itchy patches on my feet with silvery scales…psoriatic arthritis? How the hell do I know, I’m not a doctor. I have google. That’s a dangerous thing. Nothings swells, though. I guess that’s good, but I can’t keep up this not being able to move shit.

I’ve had people tell me they don’t know how I do it. Oh, you’re going through hell, I don’t know how you do it. Well, it’s not like there’s a lot of options on the table, I’m pretty sure Calgon’s not coming to take me away. I don’t know how I do it, or even what anybody even thinks I’m doing besides playing the hand I’ve been dealt. You know, much like Bartleby, I might prefer not to, but I’m not going down that way, I’ve got kids.

Sometimes I sit in bed at night and wonder- how the hell did I get to be the responsible one, the caregiver? It’s not like I ever showed any signs of such a thing when I was young. I never wanted to be a nurse or anything of the sort. I was wild and selfish when I was younger, happily so. Then my Grandmother’s health started to fail. I was about 22. I loved her more than anyone in the world. So, for the last several years of her life I was with her every day, we cared for her at home, but there were many of us. Cousins came in shifts to help, aunts came every evening. She died in 1987, and I went back about my selfish business, but not before making a promise to my Mom. As we sat side by side holding hands on my Gram’s hospital bed in our dining room the day Gram died, she asked me to promise her I’d be there for her, that she would never have to fear going into a home. It’s a promise I’ve repeated over the years.

When we lost our lease and had to leave our house we came here. To save money for a while, we said, so we’d be able to get a better place, we said, but even then she was showing signs of that chicken coming home to roost. That was in 2007, she was forgetful, repeated herself a little, stopped playing some of her computer games. It seems like no time at all before we began the long goodbye and I knew I would not leave this house as long as she was in it.

So, how am I doing it? I honestly don’t know. And I don’t have a choice, really. How could I not do it? Unthinkable. There are days, a lot of days, where I think this is going to break me. This is hell, I don’t know if I’m going to make it, but I’m still here. I still have two kids that need a functional mom every day, I’m trying my damnedest to be that. Just trying to maintain a framework of “normal” in this world of crazy wears me out, but what else is there to do? They deserve as good of a life as I can give them.

And I worry. Every night I worry. What if something happens to Dad? What will become of us? We’ve talked about seeing a lawyer, but he’s dragging his feet–to the point where things will be complicated and probably expensive now. We don’t have money. There’s this house, that’s it. If he had money he wouldn’t still be driving a forklift in a cold warehouse every night at 80 years old. I know worrying doesn’t help, won’t change anything, but I can’t help it.

How am I doing it? How does anybody go through hell?

You know how I made a resolution to start finishing my projects? Yeah, not only did I break it, but it seems I can’t finish anything. I’ve started two books. I’m half-way through the first, and about three chapters into the second, I don’t know why I stopped. They weren’t bad, I just put them down and that was it.

I have about four sketches started, some of them are fairly well along, I don’t know if I’ll finish. I have one sketch that’s ready for ink. Will it get any? I can’t say. I hope so, I really do. It’s an owl, and I really like it. I know it would be something I’d want to add color to as well, but…shit.

Actually, I kind of know why I stop; I get interrupted. But, I should be able to pick back up, shouldn’t I? I mean, I used to be able to do that. My kids, when they were babies and toddlers, used to interrupt me plenty, but that never really stopped me from finishing anything.

Lately, I feel like one of those bugs suspended in amber. This is not a good sign for me. It’s a precursor of something worse, and I can’t have that. I’m trying to fight against it. I’m doing things with my boys that I can’t bail on, I started coloring a picture in a book, just to try to jump start a spark of creative something, but it reeks of desperation to me, and I don’t know if it’s working, but it has to. I need it to.

I knew this would be hard, being Mom’s caretaker, but no matter how prepared you think you are, you really aren’t. Even if it ain’t your first time at the rodeo, every time is different. I watched my Gram, who I loved more than anything in the world, be taken by a series of strokes, over the course of several years. We cared for her at home as she lost the ability to walk, feed herself, move, speak, and finally to eat or drink. That was a slice of hell I wouldn’t wish on anyone, but I’m here to tell you dementia is worse.

She loves me, but she has no idea who I am. She hugs me, she clings to me, she turns to me, and I will always take care of her, I made her that promise. I made it when we both took care of Gram, and then again, much later, when she suspected this future. At the time she told me she’d rather be dead than have Alzheimer’s. Knowing her, who she was, and who she is now, I am grateful she has no concept of what’s been lost, because what she said was true, she wouldn’t want to be this, she would hate this.

I’m down to not watching movies or teevee shows that might make me cry, because I may not stop. I’m starting to be careful who I want to even talk to about this, because I’m afraid of talking too much about it, afraid of being a drag, and worst of all, I’m afraid they’ll say something horribly ignorant and insensitive, and I’ll think they should know better.

So, I’m treading water in the sea of life, trying to figure out how to proceed. My mind flits from thought to thought, restless and uneasy with the circumstances I find myself in, and those are not going to change any time soon, so the change has to be in me. How I deal.

Wish me luck~

I’ve been out of the house twice in the past month. Once, up to the doctor to get a bunch of shots in my head, and another time to run up to my son’s school to buy tickets for his show. Both times I was gone less than an hour. It’s a small world I’m living in right now, and for the foreseeable future. I suppose if I really wanted to go somewhere I could pick a day and make arrangements, but It’d better be something good, because damn it, I’m exhausted.

Yeah, I know it’s what some people think. If I say: I am disabled, I have a son on the autism spectrum and my family lives with my parents so that I can care for my mom, who has dementia, it sounds grim, and if I’m honest, sometimes it is. Sometimes.

Being stuck in the house for long stretches, potty duty, phone calls from school, fibro flares, the entirety of the situation of seven of us living here together, and having to get along, well…that fucks with my head a little, but it’s not my world. I can’t allow that. I can’t stay miserable. I can achieve it, just can’t sustain it.

It’s that time again! You know, I never used to make any New Year’s resolutions, I thought they were stupid. Now I love ’em. I make a big list every year. Oh, I still think they’re stupid, but it amuses the hell out of me, so here goes.

1. I’m really going to try to stop being a one hit wonder with my projects. I know how to make a lot of stuff, and I’ll make one of something. It will turn out great, I’ll be happy as all hell with it. Then I’ll start another one….um, I don’t finish. Or, I have the stuff to make more, but I don’t. What is wrong with me? I need to stop the madness.

2. People like to resolve to eat healthier, lol! I already do eat pretty healthy, seriously, I do. Not that it helps much. I tell myself–look, think of how much worse things could be if you ate junk constantly. Yeah, that shit is cold comfort, but I say it anyway. But, being one who tries not to eat much processed food or simple carbs, I’ve tried some things, and this year I will not be eating any quinoa. Yes, I’ve rinsed, I’ve swirled, I’ve done all of that stuff, and still–blech! Quinoa, on my “fuck that” list.

3. Several years back I resolved to stop hogging the Sunday crossword. Care to know how that turned out for me? I get the leavings, the answers Cleetus does not know, okay–fine. But… now the man has begun to encroach upon my crostic! Give them an inch, man. My only satisfaction there comes when he messes up, which he does at least once a week. Once he puts a wrong letter in, he’s sunk. He cannot backtrack and fix it. I’m down to the hard crossword clues and fixing crostics gone wrong. This year all bets are off. I’m taking back some puzzle, damn it.

4. This year I resolve to reduce the stress. I know what you’re thinking, my situation is quite stressful, and no, that’s not going to change. But–I’ve told the various crazymakers around here they better start letting the little shit go. Oh, I know, poor babies, they’re irritated, boo-fucking-hoo, shut up. I am not the receiver of the grievances.

5. Finally, I resolve to waste more time this coming year. I’m going to waste it playing with my kids, watching movies with Cleetus, playing poker on Saturday nights, making art, doing crafts, reading about things that interest me, and just whatever strikes my fancy. See, the time you enjoy wasting is not wasted time. That’s a quote generally attributed to either Bertrand Russell or John Lennon, when it was actually neither of them who was the responsible party. The phrase first appeared in a book by Marthe Troly-Curtin and then was reprinted without attribution in various newspapers as a thought for the day. I won’t waste time being miserable. That’s truly a waste.

Life is short, and while I don’t have much, that doesn’t mean I can’t enjoy as much of it as possible, and I plan to.

While we were sleeping there was a murder up the block. You probably all saw it, it made national news. Another used up marine with PTSD went from place to place killing folks. One of those places was a block from me. One of those people was a fourteen year old girl who went to my son’s school, her mom and dad too. Her brother was shot, stabbed and lost three fingers, but he survived. I can remember asking during the long day of the neighborhood being shut down, “What if he’s not in there? What if there’s somebody alive in there, hurt?” Turns out that was the situation. That marine was long gone from both places they thought he had barricaded himself in, went into the woods and fell on his sword, or maybe not, the details are unclear at this time, but he’s dead.

I could try to paint you a picture of a small town losing it’s innocence, and I guess more people will lock their doors now, but this is a town that forgets. This is far from our first murder. I can think of several right off the top of my head. Just within the past few years there was a little girl taken, messed with and killed, and an old man who killed his equally old wife because he thought she was cheating. A few years further back there was the kid from the next town over who killed his parents and drove all the way to Florida and was found with their blood still under his fingernails. We never had a mass murder before this, but we’ve never had so many Vets with PTSD roaming around before either.

After every one of these incidents I heard the same kind of talk. Here? Did that really happen here? What is happening to our town? You’re not safe anywhere! And this time– I’ll bet it wasn’t even PTSD! Hmm, what was it then? The truth is nothing is happening to our town. The hardware store will ring up a few more sales today, back lights will burn, but most people still know their neighbors here. People still come out on the porch when an ambulance goes up their street to see who’s in trouble, who may need help. And funds have been started for the survivors, it’s what we do. What else can we do?

So, we go on about our business. We keep sending men to war to come home broken, with no way to repair them. There’s no way to know how many other small towns will go through what mine did or what they will chalk it up to. I know what I think. I know it kills me to think of the hours that boy spent, trapped in that house surrounded by SWAT, severely wounded by a man who had snapped, and killed that boy’s entire family. I know that man claimed PTSD, I’m disinclined to doubt that, and I’m at a loss as to why anyone who goes to war for his country and makes that claim fails to find help.

Yesterday I spent a good portion of my day sitting in a room on the sixth floor of the Wood Building, at CHOP’s Department of Neurology. Ever since Baboo was born, right up to the present, in so many ways, I’ve been told–he’s a little you. And right up until now I’ve always found that to be a pretty cool thing, but now my kid has migraines, and they’re getting worse.