Dementia and Horror

Recently we watched The Haunting of Bly Manor, this year’s follow up to the Haunting of Hill House. I loved it, and then cried, but just for a few minutes, then I moved on with my life.

The dementia is not here, but I feel it creeping up on me, like an itch in your throat that presages a really bad cold, or Covid, but you don’t know which, and you’re not even sure if it’s just paranoia. Memories are fleeting, but mostly the short term ones, because that’s how it works. Some times, often, I’m sure I’m missing something but I can’t figure out if I am or not, much less what it is.

In Bly Manor, loss and memory are tied together with death, and in death memories slip away along with the self, and the face disappears until it’s nothing more than a blank slate. Sometimes people don’t know they’re dead. I don’t expect to have memories when I’m dead, but it’s the dementia that concerns me.

I don’t need to be reassured, nor reminded that “everyone forgets things, I’m just normal,” nor that I’ll be entertaining for the rest of society. Hangings used to be entertainment too. I am very content and happy these days for the most part, with the occasional down moment, but in general I’m glad to be me here now. Considering Parkinson’s presents with depression and anxiety, this is pretty damn good.

I am fascinated with how brains work, or don’t. I’d love to talk about it, but there’s no one to talk to. Andrew deals with enough, and he listens, but I don’t want to drown him in existential thoughts. So this medium will have to do. No one wakes up one day to find dementia has moved all the way in, taking up all the space. It comes slowly, a slip of the mind here or there, enough so you can tell yourself is normal, we all forget where we put our keys last, right?

But it keeps coming until entire days can disappear, slipping away slowly like the tide going out, but the tide stops coming back until there’s no movement, just calm water. Every so often the tree will be a blip on the surface, and the scene becomes clear, then it’s gone again.

Or so I imagine. How would I know?

When I use THC/CBD for my anxiety (it can calm me for a week) I can feel the dementia right below the surface, and though I can’t remember things from one minute to the next, I find it both amusing and fascinating. Are the synapses exploding like fireworks, gone forever? Feels like it.

Bly Manor reminded me I just may slip away and not notice the point where I go from here to there, everything that makes me me turned into a blank facade. Or I may not. Losing the self is the terrifying part, because I intend to see this Parkinson’s thing through to the end, but the dementia may get me first.

Or not. I don’t know. I’ll just keep track as I go, and see what happens.

I’m up for an adventure.

Parkinson’s Tales 9/17/2020

Yes, there are far more important and horrible things going on these days, but I’m not really qualified to speak to or fix anything, so this is what we get.

Today I peed my pants.

Unfortunately, this is neither the first time nor the last. It’s a Parkinson’s thing, and yes, I have adult diapers on hand when needed, but because adult diapers are such a joke in society I rarely wear them. Well, if I do I can’t get my pants on.

Which brings us to the next point – I rarely wear pants. Shorts mostly, but I will put on pants when I’m off to see the doctor, who mostly just says, “let me see your feet” and “You’re doing really well!”

Which is true. The disasters of the year have had no effect on me, except for inside my soul, which is deeply disillusioned. But otherwise…the plague, I haven’t had it yet, though maybe later. Staying inside, it’s what I do anyway. Fires. The smoke has been annoying and uncomfortable, but unlike many others who have lost so much that’s it. I work when I can, because my budget insists I make several figures a month. It’s far reduced from what I used to make and I may have to kill one client, but it’s when I can do it. I have time to read, watch movies or TV, depending on my latest obsession. I don’t cook, and if I don’t like what’s on the menu I can use Doordash. I don’t eat as much as I used to anyway. I do dishes now and then. I run up and down stairs after Ash. I’ve met my deductible for this year by having kidney stone surgery, which was a long show recovery.

I live a charmed life, or would if I believed in such things.

My human contact is minimal, but every other Saturday we have movie night with friends. We talk by zoom, then watch the movie individually, perhaps texting when we want to point something out. Then after, we Zoom again to talk about it or something. It’s amazing how much this one event means to me – they don’t care when I slur my words or zone out. Or whatever I’m likely to do.

This is a time of peace for me. In a world that’s gone crazy where I’ve never experienced such hostility, my life is calm and peaceful, and I am with loved ones every day.

It won’t last, either because the zombies will show up, or my condition will worsen, or the sun will explode, or whatever else is on the schedule, but for now I’m enjoying every minute I can, and since my short term memory is so shot (even more so when I use cannabis, which amuses me to no end) I’ll forget anything I don’t want to remember.

Enjoy life while you can, because I think zombies are up next.

Parkinson’s or Depression?

Say I had one thing I could give up, either Parkinson’s or Depression.

This is all strictly theoretical of course. But I have several annoying things going on, and my contract allows me unlimited theoretical questions.

Let’s see. Parkinson’s. Means I’m even more of a social outcast than usual, causes progressive neurological damage until I’m a drooling inflexible mass in a hospital bed, maybe with dementia, and I mistreat everyone I come into contact with. My bowels are damaged, I may fall over if I’m not careful, I can easily overdo my activities and then be unable to move much. My nose runs uncontrollably, making me want to hide, I get tremors internal and external, sometimes I can sleep all day. I can be on or off. When I’m on I can get lots of things done, and when I’m off I’m as useful as a stalk of celery. Less, actually. With celery you can put peanut butter on it and have a delightful snack. There’s more, but no one wants to hear that.

Hey, I saw a discussion where someone had asked if people object to the term “parkie,” which people use to indicate they’re part of this cool group of people with Parkinson’s. I read the responses, and half were against and half for, generally speaking. If I’ve had a stroke we don’t call ourselves strokies, do we? I’m not a fan, though anyone who wants to refer to themselves that way is free to do so. I’m all about choice. But I’m not just a person with Parkinson’s.

And Parkinson’s is not a cute little disease that one can tie up in a label. It’s complex and debilitating and everyone with it experiences it differently. I can laugh about it, but I’m not using a cute little name, and experience with groups has taught me that just using a name does not bind us together in any sort of way.

Also, I don’t do well in groups. Like I said, I’m accustomed to being an outcast. I am only in groups peripherally, if at all, and I’m never the person people think of when they want to do something with the group. Or without. Could be all the drooling.

Depression, on the other hand, is puppies and rainbows. It can take away the will to live, the excitement of doing new things, the comfort of…existing. It can turn into anger, sadness, crying, self-doubt, and thoughts of suicide. It’s deadly. That’s just me though. Since I’ve had it forever and it can also come with Parkinson’s I feel doubly blessed. When it shows up, I think about it, I get sad, I start researching suicide (not how to do it, but like studying economics – how does it work and why) and I fight it. I’m told I can’t, but I persist in it because life is hard enough.

So given that choice, I’d get rid of depression. Depression can kill, if not physically, emotionally, socially, cheerfully. It can strip away all we know of human interaction and leave us as puddles of nothing, convinced we’re unloved, unwanted, and useless. We become self-absorbed because all we can think of is ourselves and our rather negative outlook. In that state, who cares about others? It takes our laughter, and that’s something I really enjoy. Parkinson’s may make it harder to laugh, but it can’t take the joy away. So yes, depression. That would go. I can figure out the rest as I go, especially if I don’t have depression trying to get in under the canvas to the big top.

Fortunately Marijuana is useful for both. I’m off Parkinson’s meds because of it, and I sleep better also. And it helps with the depression because, whether I like it or not, there’s no choice to be made. I get what I’ve got. Everyone gets something after all. At least I know where the train is coming from, and I know where it’s headed.

Meanwhile, once I get through January, I’ll think of some more fun things to do.

Beast

There is a beast that comes for all of us, sooner or later. We’d rather it be later, mostly, but we have no control over it. We like to think we do, and perhaps we can keep it away for a bit longer, but it will come, no matter how hard we try to delay it.

Some of us live with our beast, feeding it, keeping it happy, or trying to, so it won’t run off and take us with it. Others don’t see the beast until it’s upon them and it’s too late to do anything at all.

But the beast is real, and it comes for us all.

I imagine a dark road, nothing much on it, just bare pavement.

Every Week I Give Up

Life with Parkinson’s

Every week I give up. Every week there comes a time when I’m so tired and my brain doesn’t function and my existence seems to be dragging people down. Every week there’s a point when I give up, when it doesn’t seem worth it anymore. And I think, “maybe I’m done here.”

it’s fashionable to be positive and to be a tough girl, though yes, I’m far too old to be a girl. It’s fashionable to be a warrior and keep fighting. But I am not that person. I’ve never been particularly strong, at least as I was raised to believe it, and I’m certainly not tough. And I smile at people a lot. Whether this is a defect in my character or not, it is.

Some weeks it’s the headaches, some weeks it’s the exhaustion, and some weeks it’s the frustration. Sometimes the ineffable pain. Sometimes it’s not being able to remember words, or being so tired it seems too much work to say them. Or it’s all of it together, plus my knees hurt most of the time right now. I’m better at keeping my balance, after all that PT, which I’m still paying for, so i haven’t fallen for months and months.

But every week I give up.

I look at the bills piling up because I can’t work like I used to, and at my age we’re still paying school loans. This angers me, as it does my husband, who feels even worse about it than I do. And our giant mortgage because it was the best option at the time. I hate to think we’d be driven to sell eventually. I love my house and the life we live here. And I think, “but there’s still my life insurance,” but then I wouldn’t be here and my family would miss me.

I didn’t plan for this. I just assumed I’d keep working at my sanity breaking peak. I didn’t particularly like it, but it keep us comfortable, and we started paying off debt from before. I planned to keep working until it was all paid off, the debt, the school loans, the car, even if I worked until I was 75. What else was I going to do? Travel maybe, when I want, for one thing, but even then I wasn’t strong enough to do it that often. This thing has been sneaking up on me for years, and I kept pushing myself because that’s what I do. And now I can’t.

And so every week I give up, maybe for minutes, maybe a couple of hours. And then something happens. My husband walks into the room, my dog snuggles with me, I hear from a friend. And then I want to go on. I convince myself all over again that everything will be okay, that we’ll be okay, that though I’ll never be well again I will be okay, at least for now, for this day, for this week. And if I can get through this week, I can get through the next.

Every week I give up, and then I come back.

On Love

I’m supposed to write a story about love, but it occurs to me I know nothing about it. Love should be easy, but it isn’t always. It’s often hard, especially if we’re looking for love in all the wrong places. Wait, I think that’s a song.

Especially if we’re looking for love with expectations that don’t match reality. That seems to happen a lot. But there’s more than romantic love. There’s love of family, friends, love of life, love of chocolate, love of anything we can imagine. But the kind of love that’s the best, though that’s a value judgment I’m not qualified to make, is the reciprocal kind, the kind that is more than one-sided. But the other is good too. For example, I rarely get to see family. They’re too far away and I can’t afford to fly there as often as I would like (and if I did, they might become annoyed). Several years ago I flew down and saw family. Two of them were my nephews, little boys who wouldn’t know me from a hole in the ground. But I fell in love. And for a few days they found me amusing. I could cry thinking about them, because they’re smart and adorable and kept asking where I was when I left the room. Suddenly I wanted to write children’s books and see them all the time.

But they’re young and growing and won’t remember me. I’m not that memorable. I could be old and shaky and incoherent by the time I see them again. I’ll still love them, but that doesn’t mean they’ll care who I am.

I have grand nieces and grand nephews and I love them, but they don’t have a clue who I am. They weren’t told who I was, and have plenty of family to love them where they are. I want for them to be happy and the world to return to some semblance of sanity for them. I can hope.

When I left home I was 18, and in keeping with the general antipathy regarding me I missed no one, except my 5 year old brother, and I think he missed me for awhile. I would cry because I missed him so, which really confused my husband when it happened. All he knew was that I missed some guy named Jeff. He seemed okay with it once I explained though.

I have been married more than once. For further details, you have to buy the book, which is still available on Amazon. But when I found my third and last husband I had to learn love over again. No more being controlled, or hurt, or having about his new loves – no more having to protect myself. It was a very hard thing to learn, because I don’t trust easily. Like most of us, I’ve been disappointed when I’m not loved back, or treated as if I never mattered by people I had once loved. Accepting without regarding it as some sort of trick that I’d be sorry for later is harder than it looks, and I still have moments when I’m certain he deserves far better. Love is hard for me to receive. It’s easier to give and ask for nothing in return, because I can control that. I can’t control what I get, only what I give.

I’ve backed off on giving love, because eventually my disease will progress, and people will stop loving me. Better to stop that nonsense now. It’s hard for me to stop though. I love because there is so much to love in my life. In life. I still love people who want nothing to do with me because I’m weird, I’m liberal, I’m an atheist. Frankly, I’m sort of strange. It’s okay, no one’s perfect.

My husband is the best person I know, and I love him the most of anyone ever. I can’t quantify that, I only know how I feel. And Ash, my most loyal and smart dog, who is with me when no one else can be. I’ve loved all my dogs. They don’t change, they don’t judge me for anything, they won’t stop loving me no matter what. How can I not love them?

My story on love? This isn’t it. But I had things to say first.

Parkinson’s and Depression

One of the secondary symptoms of Parkinson’s is depression and anxiety. As a chronic depressive, this information causes me to have depression and anxiety. Which comes first, the chicken or the egg?
I’ve worked very hard to be mentally well, and overall I’m pretty happy, though there are those moments when it feels like my mind is slipping back into depression. Usually that feeling is cornered and dispensed with fairly quickly because I’ve learned how. And I take drugs. But the possibility that I might slip back into a major episode concerns me, because I don’t want to do that again.

But now I have this other thing, and another thing, and I’m still learning how to deal and how to arrange my life around it. And it’s really hard some days. I feel bad for my husband, who has been great, but he doesn’t deserve this. No one does. 

For a year and a half I experienced symptoms before I was diagnosed. I thought it was my fibromyalgia and I thought it would get better, but it didn’t, and the tremors became worse. Now I’m on a medication for the Parkinson’s and I’m doing much better than I was a few months ago. My brain has a big white cloud in it, and my neurologist tells me it’s from tiny strokes that I never knew about, and that’s why I have Parkinson’s now.

It’s like a 2 for 1 deal, Parkinson’s and brain damage.

Asking for help is really hard for me, and the thought of asking for support just causes more depression because … I’ll be weak mentally ad well as physically. And who would I ask? Who would I bother? The people I thought would be there are not. One friend didn’t contact me for over two weeks when she heard the diagnosis. People are busy with their own stuff, as they should be. People don’t know what to say, so they say nothing.

I’m most worried about work, because I need to make money. I just lost my biggest clients, but they’ve been wanting to take their stuff in house for months. Another client with two companies fired me when they found out I had Parkinson’s. (I shouldn’t tell them, but I’m annoyingly honest.) And how will I get more clients if just working at my desk wears me out after a few hours?

Will I get better? When will I get worse? It’s progressive, but I could have 20 more years left, so no one knows the answer to these questions. How will I make enough money next year? No one knows the answer to that question either, though I do think about it a lot. 

I’m just as smart as I always was, though I do have some issues with nouns, especially the proper ones. I’m overall happy to be living this life with my husband and Ash support, but I’d like to be able to talk to people about this, people other than my long suffering husband. He’s worried too. But I don’t want to bother anyone. 

I’ll keep remembering that depression, when it comes, is just a small wave, and it’ll pass. Sooner rather than later I hope. And the Parkinson’s will do whatever it will do.

And here’s a picture of my support dog.

Dresses and aging

This is a trifling story but I have to start somewhere if I’m going to take up writing again. At my age!

Yes, age has nothing to do with it.

I need a dress for an occasion. I rarely go to occasions lately, mostly because I don’t go anywhere where occasions are happening other than jeans and sweatshirts occasions. However, I do have dresses. Summer dresses, cocktail dresses, Opera dresses, casual dresses, and two wedding dresses. I am adrift in dresses. 

Unfortunately, I recently had a birthday and now, inexplicably, I am 60. Yikes! Yes, there was a big party and I’m sorry you couldn’t make it, but I wasn’t invited either. I also recently was diagnosed with Parkinson’s and a history of small strokes, which came and went unnoticed, but have taken some brain mass with them.

So, what does a suddenly old doddering woman wear?

None of that is true of course, and it’s not as if I feel 60, though I am often tired and sometimes slower. And I can’t remember proper nouns. But I still know numbers!

Anyway, A was helping me because he is both my fashion consultant and my husband, and excels at both. He went into my closet and brought out a variety of dresses for me to try on. Too casual, too summery, too black, too something or other. I have lost weight, thanks to my reluctance to eat anything that might disagree with me.

I had told him no sleeveless dresses because, I said, I have flabby old lady arms, which are heading into crepe paper territory. Turns out I have a lot of sleeveless dresses because I used to have fabulous arms. There was a dress we really like, sleeveless, and it turns out I can still wear sleeveless. It has an irregular and floaty hem, which does a lot to hide my legs. They need hiding because while they used to be fabulous, they’ve turned into stumps and one knee is twice the size of the other. 

Then he brought out a wedding dress. The last one, which is not white and not like a wedding dress. I tried it on and verified that I do weigh less now, but it would only be appropriate if I were invited to a ball and a prince wanted me to try on shoes, but I get very few ball invitations these days.

So the dark red floaty dress. Alas, I cannot wear heels, as I would prefer, but I’m likely to fall off of them and that would ruin the whole look. And I might break a hip. Apparently I have that to look forward to as well, but I plan on putting that off as long as possible.

This could be my last chance to go to an event, or not. There will be many beautiful and stunning people there, so I’ll at least make an effort.

There will be pictures.

Not My Fault

Many years ago, I met a girl at my last duty station. I should say she was a woman, I’m sure she had children, but she was a girl. Less than 25, girlish, flighty, half my size, and she knew everything there was to know in the world. She was also about 8 months pregnant, which would explain why I was there.

She was supposed to show me around my new office, her soon to be old office, in which I had two equally flighty majors or colonels, or one of each. I was barely 24 myself, but used to commanding an office of 4 or 5, which doesn’t sound very interesting if you realize desks don’t go to war. They sit, immobile, their people coming and going, but never far from their desks.

The girl sprite and I were to go somewhere and do something perhaps massively important, or perhaps to pick up toilet paper, which can also be massively important. She drove, in her giant tank of a car. She couldn’t see over the steering wheel without several cushions to sit on, which only reassured me. As we drove on the base, I noticed her speed was quite high.

“I think you’re over the speed limit,” I said, managing to slip that in while she chatted about her newest child, who was still firmly ensconced in its mother.

“No I’m not,” she said, ” my speedometer is broken,”

I failed to see how those two things were connected, but didn’t care to ask.

Before we made it to our destination we were pulled over.

“You were going to fast,” the stereotypical base cop said.

Sprite responded with, “No, my speedometer is broken, so I’m not.”

Cop was as confused as I had been by this statement.

“That’s not an excuse, you should get that fixed. You were still speeding.”

Then followed a generally polite but vicious five minutes of talk about how she couldn’t be responsible to for what she didn’t know and how her speedometer and her speed were her problem, not his. It was eventually resolved by her receiving a ticket, which she vowed to fight, while the patient policeman shook his head and stalked back to his car.

This concept was so foreign to me, but seemed practical. How far could I get in life if I took that tack? Nothing could be my fault if I failed to do the things I was required to do?

Probably pretty far, as shown by history, but stubbornly I stayed on my own path, taking blame for everything, whether it was my fault or not. Maybe a happy medium would have been best?

Sleeping, or not

When sleep won’t come because the mind is scared of what will happen and everyone else, even the dog, is asleep, I can barely talk myself into going to sleep. Chances are, if we’re looking at chances, nothing will happen. But it’s not a guarantee, and I like guarantees. It’s not as if I won’t sleep, because chances are I will, but now will I wake up? Will I be cold and shaking and wet from sweat? That’s the worst. Will I wake up feeling okay but in pain? I never know.

When day comes I’m hesitant to meet it, though I’m often excited to see what will happen next. Not with me, because it’s mostly sitting at my desk working or napping. But the world is full of constant surprises. What idiotic thing will the leader of the US do next? My excitement dims as I see it’s more of the same, a report redone to delete numbers that change the results to match a policy that is both inhumane and stupid. More bad edicts, more bad government peons in service to their oligarchs.

It’s all about money. It’s not enough to have money, it must still be more and more, while the much of the country is in despair. The oligarchs collect their money and then, in their attempts to keep what they have and make more, they spend obscene amounts buying the party, the politician they favor, and we are, most of the rest of us, helpless to stop them. We protest, we contact our reps in Congress but they don’t care because we can’t buy them like the oligarchs can.

When did my country become so mean? There’s so much hate, no integrity, no truth. Instead we have alt-facts and lies upon lies. It makes me sad. We’re not people anymore, we’re a commodity, and our owners know they can easily get more of us. If people die because they’re shipped off to war or they have no health insurance, they don’t care. And their followers seem confused and use what-about-ism to answer every argument.

I want to help, but my hands shake, sometimes my bad knee doesn’t work, I have headaches daily, my walk is not sure and steady, I’m still waiting for an MRI to determine if I don’t have Parkinson’s. And I’m so tired. And I must keep working.

It’s like that for most of the people I know. We work because we have to, because this is how we live. It’s still all about money.

I can be outraged only so much of my time. To much outrage and angry can transport many of right into depression and anxiety, and I don’t want to go there. I want to know what’s going on, because it matters and as far as I know, I still get to vote. A Many people don’t, and don’t care, and I wasn’t to ask “what about your children?” because they will have to live in this world a lot longer. I want them to have a just and fair world. I want a world where multiple aren’t killing themself lives out of despair and hopeless. The future will not be easy as it is.

I will sleep tonight. We both have jobs, health insurance from an employer, other benefits, we have a house, well, we and the bank, two good cars, and enough income to make the student loan payments every month. Life is good. We’re lucky and have white privilege, and one day, while in my car, I realized that I would never worry about being stopped by car, because I’m a privileged middle age white woman. And I cannot imagine what not having that privilege would be like. I just don’t know.

There is much rambling here, and for that I apologize. I’m still looking for what I want to write. There are so many choices after all.