I just got really lucky

I’d like to write an article about this but can’t seem to focus my thoughts enough.

I realize that I got really, really lucky that I found and married J. Even at our worst, I think we’ve always gotten along a lot better than a lot of couples do.

I’m basing this on the posts I read in my disability support groups and what I know of some of my family relationships (I won’t say whose in case this is ever found and traced back to me.) So many couples seem downright adversarial, even mean, toward each other.

I wrote an article yesterday in which I shared my thoughts on parenting. I’ve never really written much about parenting before, in part because I felt really icky about presenting myself as any kind of expert. And I realize that I feel much the same way about the success of my marriage.

How do you write about one of the most important aspects of your life, anyway, especially when you recognize that you just got lucky? It would be hard to do without coming across as sanctimonious.

I have realized, though, that our relationship is more rare than I ever understood. We don’t call each other names, even when we’re mad. We don’t tell our kids that the other parent is being unreasonable and the kids don’t have to listen to them (as regularly happens in the family relationship I spoke of.)

We don’t compete over whose life is harder. J doesn’t refuse to help me just because he works hard all day, for example.

We both generally go out of our way to make the other’s life better to whatever extent possible. Now that we’re both dealing with our separate illnesses, we’re really good about giving each other grace and picking up the slack when necessary. If he needs to sleep, I let him sleep. He does the same for me.

Our home is generally a pretty conflict-free place by intentional design. We don’t make fun of each other (except occasionally in an obviously lighthearted way.) We don’t insult each other as a normal part of conversation.

Our kids don’t disrespect either of us, let alone openly disrespecting me because that’s the example their father gives them.

I guess I didn’t realize that it was relatively uncommon to be like this because it’s just what I know. I honestly believed that more couples are genuinely nice to each other than they apparently are.

If the opposite is indeed more common than I thought it was, I am even more certain that I’ll never want to get married again. It would stress me out so much to be in a high-conflict relationship.

I was texting with my mom last night and she said I won the husband/father jackpot. Of all the couples she knows, she said that what J and I have is extremely rare. She said that the fact that we work well together as a team and express empathy for what the other is going through is extremely unusual.

If this is indeed the case, I have to appreciate the hell out of him and our marriage, even more than I already do. I don’t think I could ever find it again.

Progressive diseases tend to progress

Seems obvious, right? Of course if I have two progressive diseases, it stands to reason that they’ll get worse. I guess I just didn’t think it would really happen to me and certainly not this soon.

My left arm has been hurting for about four months. In case you might ask (like my husband did) why I’ve let it go this long without seeing a doctor, well, I just thought it would go away on its own. I figured maybe I was just sleeping on it weird or something.

But it has gradually become clear that this is not going away on its own. It feels like I have a 20-pound weight constantly strapped to my left arm. It’s hard to even lift a coffee cup.

This is also not intermittent pain. It doesn’t respond at all to pain relievers and only somewhat to muscle relaxers. It’s pretty much constant.

I know this is a telltale symptom of Charcot-Marie-Tooth, one of the diseases I have. But still, I’m a bit overwhelmed by how suddenly it came on. I’m even more overwhelmed by the fact that this symptom will probably never go away.

I’m kinda ashamed of the fact that I was crying about it to my husband last night. I mean, he’s dealing with being on chemo, for god’s sake. Who am I to be crying about my sore arm?

At the same time, I feel so much worse than I did before. I really, really don’t want to be a whiner about it. I don’t have a lot of respect for people who constantly whine about their health problems. At some point, I think you just have to suck it up and accept that this is one of your challenges and learn how to get on with your life anyway.

I just didn’t know that it would hurt this much.

Estate sales

I was coping somewhat well with my husband being on chemo this weekend, especially because he got the latest results of his CT scans, which showed that his various cancers are shrinking or stable. At the very least, he doesn’t have to go back on Oxaliplatin yet, which was the chemo drug that caused severe cold sensitivity and neuropathy when he took it before.

Amy made some off-handed comment about wanting a tasteful religious artifact that we have in our living room. I asked if she wanted it now, and she said that she’d wait for the estate sale in 25 years to claim it instead.

I objected to the “25 years” figure because that doesn’t seem so far away, and she assured me that it was just a random number. I said something about how my husband was probably likely to go first and she once again took me to task about that.

She thinks that I’m too pessimistic about my husband’s long-term survival. I get that and I recognize that it’s probably part of her coping strategy.

But still, it’s had me in kind of a funk ever since she said that.

It’s not bad enough that my husband has a terminal illness. Maybe I should be worrying more about my own survival, too?

There’s nothing to indicate that my lifespan will be significantly shortened by my illnesses. At the same time, though, no one really knows that they won’t be, either.

My husband had to sleep most of the day yesterday to recover from the marathon day we had on Thursday to celebrate my youngest son’s graduation with my husband’s sister. Then he had to go to work like usual Friday and the cumulative effects just really kicked his ass.

At the same time, I also slept most of yesterday. The effects of the graduation marathon, followed up by waking up earlier than usual on Friday to take Adam to a laser hair removal appointment really kicked my ass, too.

I know it’s not normal to have one really busy day require a full day of sleep to make up for it. Maybe this is a strong sign that my health isn’t very good either. I tend to view it as just my normal, even though it really is anything but normal.

At the same time, to think that I could very well be dead in 25 years seems so soon. My own parents are still alive at 65 and 72. I’m 47 and if I’m already dead by 72, that means I won’t have even lived as long as my dad. My parents could actually outlive me.

I know these are all thoughts that my husband has already wrestled with and faced. I thought that was tragic enough. But maybe there’s no guarantee that I’ll live much longer than he does, and I completely haven’t come to terms with that at all.

That $13,897 mistake

I made a big mistake on my taxes—a $13,987 mistake.

It took the IRS almost 3 months to get me my refund, so I figured that they also discovered the error. In the meantime, I sent in an amended return with the correct figures, which showed that I was supposed to get a much more realistic $797 back.

So I finally got my tax refund deposited yesterday:

Long story short, they deposited the $13,897 amount.

It’s so tempting to want to keep this money. I’ve owed the IRS before (years of freelancing makes that incredibly likely) and I know that they’re willing to work with you on making livable repayments.

I think of what I could do with that money. Most importantly, it would go a long way toward a down payment on buying a house and save me the long, tedious process of having to save up for one.

But J is surely right that this is not really our money to spend. The IRS will surely figure out that we owe them whenever they get around to processing the amended return I already submitted, and it will be a lot easier to already have that money set aside. And at least we’ll earn a small amount of interest on it.

Still, it’s just so, so tempting to see all that money in my account and know that I can’t spend it.

Writer’s block

I don’t know what happened but all of a sudden, I have writer’s block. I sat down to write something for Medium and before I knew it, I had written a bunch of crap.

Maybe it’s because I got psyched out by already being named a top writer in the topic of feminism. In fact, I’m pretty sure that’s what it was. It just puts so much pressure on me to make sure that my next article is really good, which ironically (but maybe not surprisingly) makes me seemingly unable to string together a coherent paragraph.

Maybe it was also reading things on Medium about how to make a lot of money there. That always psychs me out, too.

I feel like I’m on the verge of gaining a really big audience and I have an enormous case of impostor syndrome. Maybe they’ll find out that I can’t really write at all.

I know that realistically, not everything I write is going to be fabulous, and the point is just to keep writing anyway. But for whatever reason, I just can’t do it. It’s the ultimate in self-sabotage.

I have this feeling that I could really make a career of writing—much more so than I already have. Yet for some unknown reason, I can’t seem to get over this hurdle.

Dreams talk to me

Sometimes I just have weird dreams and I have to figure out what they mean. Other times, though, their meaning is perfectly clear.

Last night was one of those times when the meaning of a dream was crystal clear. I had a dream that I was back in Michigan but my home was still in Texas and I was trying to get back here.

It was late August and there were news reports that we might need our winter coats soon. (To be fair, we rarely needed them before September or even October.) I just remember that I was wailing because it barely seemed like we had a summer and it seemed so unfair that it was already over.

The other thing in my dream was that I was at a small meat and produce store that was kind of a big deal in my town and people were excitedly talking about the new autumn caramel apple beer being out already. And once again, I was just distraught about summer being over already even seemingly before it ever began.

The meaning of the dream is obvious: I can’t go back to Michigan after my husband is gone. So many of the people in Michigan are perfectly happy there. They don’t mind the short summers and can tolerate the long winters.

But I am not one of those people. I wasn’t when we moved back there last time, either, and my mistake was in believing that I could be.

I’m also a city person, through and through. At the very least, I need to be in the suburbs, if not the city itself. If J and I could choose where we wanted to go on vacation (and we didn’t have to go visit family), we would choose to visit another big city somewhere else. Neither one of us are the kind of people who want “to get away from it all.”

Sometimes I need my dreams to remind me of who I really am. While in many ways it would be easier just to pack up when my husband’s gone and go back home, I know I wouldn’t be any happier there than I was before. One way or another, I have to find a way to make it work in the city, even if I’m on my own.

Anniversary thoughts

Yesterday was my 27th wedding anniversary. It was a great day all around and I really enjoyed my husband’s company.

He bought me an anniversary band to go with my wedding set. I bought him a guitar. We normally exchange smaller gifts for our anniversary—usually we each try to stick to a $50 limit. (Though we both usually overspend on each other.)

It was really sweet because when he presented me with the ring, he went down on one knee—a reference to the fact that I never got that kind of proposal the first time.

Then we went out to eat in Dallas, our first time in a restaurant since March 2020. It was just really lovely.

As we were leaving Dallas, we took a highway exit and came up on an awe-inspiring view of city lights surrounding us on all sides. I asked him something like, “Ah, don’t you just love that?” And he said, “Probably even more than you do.”

So I guess we’re back on the plan to try to move to Dallas at some point. We could actually buy a 2-bedroom condo for less than it costs to rent our current house. But of course, we have two major factors that will both take a while to work on: saving up a down payment and closing costs and getting at least two of our three kids to be independent. (I suspect that my middle child will live at home the longest, if current trends are any indication.)

There’s also the fact of the matter that we don’t really know how long J will be around. This is one of those instances where we just have to assume that he’s not going anywhere any time soon and keep working away at it. At least until his health says otherwise, that’s all we can do.

I’m thinking that the next article I may write for Medium might be about how much I’ve learned to live in the moment as a result of both my disability and my husband’s cancer. You might not be able to tell it as much based on what I write here because this is where I also write about my worries, too. But for the most part, I really have learned to live in the moment.

It’s kinda funny because at one point in time, I was a lot more of a control freak. That’s gradually diminished as I’ve gotten older anyway but has rapidly accelerated since getting approved for disability and my husband’s diagnosis. I got approved for disability the day after he came home from the hospital, so it’s really hard to tell which had a more profound effect.

All I know is that I used to be pretty uptight and now I’m really not. My youngest, in particular, describes me as “pretty chill.” There was definitely a time when that’s not how people would describe me.

Maybe it’s just because I no longer have to try to hustle and make money. Or maybe it’s because I know that we’re not guaranteed anything, including time. But instead of feeling panicky about that, it just feels like I’m riding a wave and I’ll see where it takes me. Being chill is a lot better than being uptight.

Dreaming of other places

I could very well end up staying in Texas for the rest of my life but I like dreaming of other places.

I thought that Prague sounded perfect for me when I read the descriptions of the local culture. As a bonus, it’s about 30 percent cheaper than the US.

But then I read about the weather there. They get snow and most days are partly cloudy—just like my hometown. So that’s probably off the table for anything other than a visit.

Yet there are still lots of places in the world where I haven’t been. A lot of the countries in South America are also cheap, have welcoming cultures, and have mild and sunny weather.

Between this and yesterday’s post about wanting to try psychedelics, you may be wondering what’s up with me lately. Is this the midlife crisis I’ve been waiting for?

I don’t think it is, though I could be wrong. I just feel like there are still so many things I haven’t done and so many places I’ve never seen. Even though I’m kind of a homebody (as someone who needs a lot of sleep tends to be), I also feel like I’m getting less boring as I get older.

Part of it may be that my youngest child’s last day of high school is tomorrow and part of me feels like I’m finally free. That’s not to say that I don’t think the kids will need me anymore or that I won’t need them. But instead I feel liberated from what people expect of me. I’m certain that being on permanent disability also plays a major role in that; I would probably feel more constrained if I had to show up to an office every day.

It’s just kind of funny that I noticed today that the amount of grey in my hair is getting a lot more noticeable, while at the same time, the rest of me is starting to become more invisible. And instead of bemoaning my loss of youth or desperately trying to stay in the spotlight, I’m actually kind of relishing this invisibility.

I can write about whatever I want. My kids know me as being pretty critical of capitalism. I don’t really belong to any organizations or support any dogmas. I am ferociously willing to fight for my transgender kids and for the belief that Black Lives Matter.

By my own definitions, I think I’m actually becoming much cooler as I get older. It was so much work to try to be sexy and “cool” and keep up with trends, and I never really succeeded at that, anyway.

Now, I’m a lot more comfortable in my own skin and I’m a lot more unapologetic about what I stand for. I look forward to the adventures I may still have.

I wonder if all older women have this same secret badass side that nobody really knows about because they never notice?

Getting a crazy hippie idea

In truth, this has been on my radar for quite a while now but I just haven’t known what to do about it. I still don’t.

I want to experiment with psychedelic drugs. I’m kinda laughing about saying that but I’m also totally, 100 percent serious.

It’s kinda funny because I easily could have obtained them when I was young, but now I have absolutely no idea how to get them, short of buying Bitcoin (which is way out of my price range), getting a VPN, and going on the dark web. And though I say that like it’s no big deal, I still wouldn’t actually know how to even do that much. (But I’d bet that my 23-year-old computer genius of a daughter could show me how.)

In my younger years, I was always deathly afraid of psychedelic drugs (though I had fun messing with friends while they were tripping…I was a bit of a shit, yes.) But in recent years, I’ve read a lot of mainstream stuff about how transformative psychedelics can be, particularly for people with treatment-resistant depression and especially in micro-doses.

To the casual reader, I’m sure this may sound like I’ve gone off the deep end. But I assure you that the truth is anything but radical. I don’t want to get high and honestly, I’m still afraid of “tripping.” There is no “party” element to this at all and I very rarely even drink.

Yet I’m also open-minded enough that I’m willing to consider something that might actually be more effective in treating my depression than my antidepressant medication. My depression is not being managed very well by my medications anymore and I can’t increase my dosage any further.

Mushrooms are apparently much easier to obtain than LSD, but they are also more likely to interact negatively with antidepressants. My particular antidepressant is one that you can’t quit taking very easily and there’s some reporting that says that mushrooms might not be effective if you’ve ever taken an antidepressant.

But this all comes back to the question of where and how to obtain drugs anyway. I’d know how to get a hold of marijuana but frankly I never liked it much. My kids are not deviants like I was at their ages, so they don’t have those same kinds of sketchy connections that I once did.

I know that writers like Michael Pollan and Ayelet Waldman have written positively about their own experiences with microdosing LSD. I would really like to try it and see if it would help me, too. But they left out the part about how they obtained it.

That means that I’m still left in the somewhat unfortunate position of not knowing where or how to get it. Apparently, I’m not enough of a “hippie” to even know how to do this.

That’s the problem with being a normal-looking middle-aged mom in the suburbs: life is so safe that when you want to walk on the wild side a bit, you can’t even find the path to get there anymore.

Sometimes, you have to give up

I ended up quitting my part-time grading job. It was just ultimately a lot more than I could handle, even though it makes me feel incredibly pathetic to say so. I do feel better already, though.

I texted my mom to share my latest article I wrote for Medium and we got to chatting for a bit. I told her that I was having a really hard time dealing with my limitations lately and she was so kind and encouraging.

She told me that I have been through so much and that I’m so strong, even if I feel like I’m not. That was really helpful and just the thing I needed to hear. I wonder if this means she’ll be more emotionally supportive when I need it or if that will still remain inconsistent. I guess I’ll just take it as it is and see what happens.

I wrote two more articles for Medium in the past two days, which is a welcome sign that my inability to write last week was probably only because of the extra toll that the part-time job was taking on me.

I know that from a strictly financial sense, the part-time job was certainly more of a sure thing and therefore smarter. But I’m also (very, very reluctantly) learning to recognize my limitations. Hopefully, at some point, I’ll be able to recognize my limitations in advance, before I take on something that’s more than I can handle.

But for now, all I can seem to do is my regular freelancing and writing articles for Medium. Writing the articles for Medium may never make me rich but it makes me feel like my life still has purpose. I still have things that I want to say and I can still convey them in a well-written manner.

Is it really okay that all I can do is so little? I guess that question is kind of moot, since it’s all I seem to be capable of anyway. But maybe I’ll start to feel like I can give myself permission to relax. That would admittedly feel really nice, to not be putting so much pressure on myself.

It’s kind of funny: I have lost so much in terms of my abilities, but I still have the ability to write well, just the same as I always did. For now, I’m taking that as a victory, especially at a time when it otherwise feels like my victories are few.