Just a few quick thoughts

Last night, I slept even more than the night before—16 hours. I seemed to have no control over it, either.

I sent a message to my neurologist to see if she had any helpful information to tell me but I’m still waiting for her response.

To be honest, it kind of makes me feel afraid to go to sleep again. What if I just don’t wake up?

On the one hand, if I don’t wake up, I won’t have to deal with all the heartbreak and grief that is still waiting in my future. I fully believe I’d just be at eternal peace and not have to worry anymore.

But on the other hand, I’m not actively suicidal, so it just scares me more than anything. I do want to still be around, even despite the heartbreaks in my future. My kids will need me here. I think my husband would be heartbroken and even more worried if I died before he did.

At times like this, if I really admit it (I usually try not to), my illness scares me a lot. I don’t know if this excessive sleeping all of a sudden is a harbinger of something worse on the horizon. I also don’t know when it’s going to stop and I can function like a normal adult again.

I feel completely trapped and bewildered by my illness and I have no idea how to stop it. There’s no cure and even the powerful medicine I take to help me stay awake isn’t really working.

I just want to be normal and functional again.

Hidden sources of stress

I accidentally, unintentionally slept for about 14 hours last night. I have no idea why that happened and I suspect that I’m under some kind of stress and my body’s trying to repair itself.

It’s kinda funny because if you asked me, I’d say that I’m not under any kind of stress. But my body is clearly telling me otherwise. Sleeping an excessive amount like that is almost always a result of physical or mental stress.

I mentioned it to my husband and he thought that maybe the stress could be related to my daughter coming out. Even though that’s ultimately a positive thing, it is a very big and honestly unexpected thing (though as I mentioned previously, it really shouldn’t have been so unexpected. My oldest daughter says she knew two years ago but wouldn’t tell me how she knew.)

My husband just finished another cycle of chemo this weekend and had an especially rough day at work on Monday. He’s now back in the office full time and his boss and someone in HR are the only two people he works with who know that he has cancer.

To be honest, I really don’t know how he does it, but I’m so grateful that he does. In many ways, though, it also makes me feel like I should be able to buck up and work. I’m not the kind of person who can hide my illness like he does and I don’t know if that’s a personal failing on my part. I truly can’t even imagine going through chemo and trying to hide it from my coworkers, let alone being able to do that successfully.

I guess I’m stressed about other things, too, though. Like how much fear I have about having two trans daughters. My oldest has always been so independent and she has a really good long-term boyfriend who looks out for her, so I still worry but it’s more abstract. My middle daughter, on the other hand, seems much more fragile to me in many ways. I feel more of a need to actively protect her.

In a weird way, I even think my excessive sleeping last night might have been caused by my own stress related to my husband being on chemo, though that doesn’t really make sense, either. I’m not the one on chemo, so how can it be stressful to me?

Then that gets me to thinking about where I’ll live when my husband’s gone (which is another source of stress, I guess.) If my middle daughter is still living with me, it might still be a good idea to get out of the suburbs and move to that LGBT-friendly neighborhood in Dallas after all. But then I start worrying about how I would afford that.

In truth, I guess I’m more worried about my future survival than my conscious mind lets on. On the surface, I’m very good at trying to block it out. But I don’t actually know what I’ll be able to afford or when I’ll have to leave the house that I’m in. I’m still inclined to ask my landlord if he’ll sell it to me after J’s gone and I get the life insurance money but I also strongly suspect his answer is likely to be no anyway.

As I mentioned previously, I’m really caught between my present life and what comes after J’s gone, like I’m suspended between life and death. I don’t want to be in this state of mind, either; I want to be enjoying every moment that I have left with him. But I also seemingly can’t help but worry about what comes next and if I’ll even be okay.

My middle daughter says she’ll contribute to expenses if she’s still living at home at that time. My youngest son is going into a very good career field and would probably help as much as he was able, especially if I’m drowning. But I don’t want to drown. I want to give my kids a safe place to land for as long as they need it. However, it’s completely impossible to make projections about the future. I just know that it potentially looks much scarier than I used to allow myself to think.

I also know now that I really can’t work, which is taking a lot of adjustment. All this time, ever since I first got disability, I was 100 percent certain that I’d be able to get off of it. I believed it was only a matter of determination and when I decided to kick ass, I would fully be able to. But that actually doesn’t seem to be the case at all.

I’m taking all the worries about my future on my shoulders now, trying to figure everything out. I’m even trying to think of non-traditional ways to make a living, like getting a substantial online following or starting a business, but those ideas just exhaust me at the moment. I already feel like I’m carrying as much as I can possibly hold.

But for right now, my husband’s still got my back. He’s the one who’s actually carrying that heavy responsibility to make sure that we’re all okay for as long as possible. I can’t express the depth of my gratitude for that.

So why can’t I stop thinking about what I’ll do when he’s no longer around to have my back? Yes, I’m incredibly strong and resilient, but I’m also really scared and I don’t have as much control over my future as I thought I did.

Things I’m lucky enough to afford

I have to take a moment to count my blessings, especially because my husband’s job enables many of them. (He himself is one of my many blessings, as is the fact that he pushes himself so hard to work during chemo—especially given the fact that most people at his job don’t even know he has cancer.)

Last night, I booked regular service from a lawn mowing company, as well as having our front lawn reseeded because our lawn looks patchy and shit. You may not understand how big of a deal this is to me.

Neither my husband or I grew up with any household help, whether it be a housekeeper or a lawn mowing service. What’s more, I think his mom and stepdad actually enjoy taking care of their own lawn, like some kind of sickos. (That’s said totally as a joke but literally everyone in our house absolutely hates it.)

On a whim, I also looked up housekeeping services and decided it wouldn’t be worth it. I can keep up with most of it myself, with a little help from the kids. I get it all done, just maybe not as often as I’d prefer. (Now if someone would come over and just clean the window sill behind my kitchen sink, I’d totally take them up on it. I’m too short to reach and too lazy to bring out a step stool.)

I can really see the value of hiring a clutter organizer but they would have their hands full just dealing with my bedroom and closet. I know those rooms are messy but I just don’t know where else to put stuff.

Still, hiring a lawn service just feels so bougie. I feel vaguely ashamed that none of my kids thinks it’s even worth the effort to do it for the same price as I’d pay the service. I did offer, even though I know they wouldn’t do as good of a job. In this regard, I think maybe we spoiled them. I know my husband had to do it growing up and he didn’t even get paid.

But still, I feel so extremely fortunate to be able to afford it. We haven’t really done much to try to make our lives easier in any way while my husband goes through cancer and we don’t have tons of people offering to help, either.

Similarly, I really like that thanks to my husband’s income, I can afford to go looking for random GoFundMe campaigns and the food bank and find people to donate to. I get a great deal of satisfaction out of doing that small bit of good in the world. It makes me sad that I probably won’t always be able to do that, as I expect to be pretty poor when he’s gone.

And I suppose it would make more financial sense to save that money instead but that just feels so selfish. When there is so much genuine suffering in the world, how can I just close my eyes and ears to it and pretend I don’t see it? I always said that if we ever had enough money to do so, I’d want to help people with it, and it makes me feel good to hold true to that goal.

What will I do when I can no longer afford to help anyone? Hopefully, I’ll still find some other non-cash way to do it, to whatever extent my illness allows. And maybe, just maybe, someone will decide to pay it forward and help me when I need it. But even if they don’t, it wouldn’t change what I’m doing now.

Plans for my writing career

I’m still doing the same type of freelance writing as before, stuff that pays reasonably well and usually about medical or real estate topics. It’s not a passion, for sure, but it provides a source of income.

I decided that I might try my hand at writing personal essays, like the one I wrote for Medium which I linked here the other day. I went back to check my stats on the story and saw that it had been selected by Medium for further distribution.

Still, having been selected for further distribution only took my earnings for the article from 8 cents to 19 cents, so it’s clearly not going to replace my other writing work anytime soon (if ever.)

At the same time, though, I loved doing that style of writing, especially compared to my usual writing. I must have tweaked that story 7 or 8 times, wanting to make sure that it was just right.

By contrast, when I do my usual freelance writing, I just give it a quick once-over after finishing it to make sure I didn’t make any glaring errors. It’s obvious that I feel a lot more invested in making sure I get my personal writing just perfect (though, in truth, I still probably get my professional writing close enough anyway.)

I don’t know for sure what direction my writing career will take me or even if I’ll ever make substantially more money from it than I do now. But I do find it extremely gratifying that on my first attempt at writing a personal essay in many years, it still stood out.

My very first-ever piece that got published was also a personal essay, which appeared in an actual book. Maybe despite all my years of feeling like my personal voice has been drowned out by commercial writing, perhaps it’s still there after all. I’m curious to see where it will take me.

Finding normal when nothing is

Despite what you might assume, the day-to-day matters of life go on mostly as normal when you have a family member with terminal cancer. It’s not a topic we discuss around the dinner table, though it’s also not a secret.

We are very fortunate for sure that my husband is still able to hold down a full-time job. I am very grateful, however, that he finally has a job that pays well enough that he doesn’t have to have a second job, which he’s done a few times over the years. If it were necessary, he might still try to do it anyway because that’s the level of commitment he has to our family, but it would be unimaginably hard on him now.

But even despite the grim facts of his cancer and life on chemo, life still has to go on as normal. There are still bills to be paid and chores to be done and things we need to do for the kids.

We were talking yesterday about concerts and I said that I regretted making him go with me to one concert that was on the day he got disconnected from the chemo pump. Those days are always extremely physically difficult on him as it is. I tried lining up a friend to go with me instead but those plans fell through. I was going to just go alone but he insisted that he could do it with me.

I’ve felt so guilty since then about dragging him out when he clearly wasn’t feeling well. I worried about him the entire time. But he told me that I shouldn’t feel guilty anymore and if he’s going to miss out on stuff, what’s the point of even taking the chemo?

Life has to go on as much as normal, with or without cancer and chemo. For certain, the chemo makes things much more difficult for him. But I really admire his willingness to do it anyway. I can’t really imagine the strength that would require.

Things I didn’t understand

I remember that with my former best friend, I felt like she felt entitled to have the best of everything and raised her daughter with the same expectations. While I still disagree with many of her parenting decisions, I no longer think that was one of them because I get it now.

As I’ve already mentioned, it’s really good and personally enjoyable that my middle daughter is allowing me to be much more involved in her transition than my oldest daughter did. For example, I still have to ask my oldest daughter’s permission before buying her any clothes, so I usually don’t. She doesn’t seem to enjoy it.

She doesn’t really wear makeup anymore but she did for many years, and she didn’t allow my input on that, either. As a result, she usually picked up drugstore brands that were maybe not always the most flattering or natural-looking.

My middle daughter actively wants my input because all of this is so new to her. And I find that I’m not starting her out on the drugstore brands, even though they would be cheaper.

Part of that is because she is very, very fair-complected and I know from experience that it’s really hard to find a good match for that skin tone in drugstore brands. Similarly, I’m starting her out with the skin care products I use because her skin type is like mine, which are also not as cheap as drugstore brands. (Though I did manage to find them on a good sale and let her know that a bottle of cleanser, for example, typically lasts about six months.)

I’m sure that when she wants to start wearing mascara or lipstick (if she does), I can point her to some decent drugstore brands. I’m very mindful of the fact that she likely won’t be earning a lot of money for a while and don’t want to get her hooked on things she can’t afford to maintain (or commit to always buying them for her.)

But I’m really having a lot of fun being able to pick out clothes for a daughter. I send her links or pictures of clothes and respect her input. If she doesn’t like something, she just says, “I’ll pass.” It gives me an immense amount of joy to find things that she likes that I also like. Being able to essentially get her a whole new wardrobe is something that I feel very fortunate to be able to afford at this time and I can tell that it plays a big role in her courage to come out.

Dressed as a male, she always absolutely hated wearing jeans because she said they were so uncomfortable. So I was happy to tip her off to the existence of jeggings and told her how much more comfortable they were. I already ordered her a pair from the Gap but I suspect they may not fit her right because there’s not much difference between her waist and hip measurements.

So I did a simple Google search for jeans for her body shape and found a brand that’s supposed to be excellent for shapes with smaller hips. It’s a pretty expensive brand but luckily, I found a discounted pair at Saks Off 5th and ordered them for her. They were still more expensive than I’d normally consider spending, especially on a 20-year-old. But I think that the potential payoff will be huge if they make her feel more confident about herself.

And I guess that’s what I never understood before: it’s not really about spoiling your kid (you do that in other ways that you raise them) but about wanting them to feel good about themselves.

Particularly with a trans kid who already has to overcome so much in terms of accepting themselves, the more I can do to make that process a little easier is worth quite a bit of money to me.

And very soon, she’ll have enough of a wardrobe to dress in female clothes full time and will officially have us use her new chosen name.

And ultimately, all I can really think about is how lucky I am that I can still be available to drive my kids around, too. My middle daughter is going to need transportation to a lot of appointments coming up: therapy, endocrinologist appointments, and laser hair removal sessions. Meanwhile, my youngest son is also having a lot more things to do as he wraps up his senior year, from on-campus AP tests to get-togethers with friends. All these things would be difficult, if not impossible, if I were still working a full-time schedule.

For a while there, I was convinced that the kids didn’t really need me much anymore. But in fact, it actually seems like they need me more than ever. I can’t say that I mind at all.

There is no great enough distraction

I’m trying my hardest to find some kind of positive thing to distract me and keep my mind focused on hope and good things. But I’m finding it really difficult to do right now.

I don’t know if it’s because it’s been cloudy all week, which always puts me in more of a down mood. (You can see, therefore, why living in eastern Michigan was so difficult for me, since it’s cloudy there more often than not.)

I’ve tried meditating and it hasn’t really helped at all. I think that these are just uncomfortable feelings I’m going to have to sit with and frankly, I don’t have any kind of guide map to get out of this.

I’m really wrestling with the fact that my husband is going to die. I don’t know when that will be, but knowing that it’s a certainty within the next few years is more than I can wrap my head around.

Of course, I have all kinds of fears, and most of them are rational things to fear. This is far beyond my usual anxiety, which makes me worry about things which may or may not ever happen. The things I worry about now are things that very much could happen.

I try to comfort myself by talking to my kids about normal stuff. The other night, my youngest wanted to talk to me but he saw that I was talking to my middle daughter instead. Knowing that I’m seen as a valuable emotional resource to my kids makes me feel really special and honored, especially that they almost compete over who gets time with me.

But the fact remains that I am also talking less to my husband, for several reasons. Part of it is that we’re both so tired all the time, which leaves less to discuss. And another big part of it is that it seems like there isn’t much to say because what we’re going through is too scary to verbalize.

I honestly don’t know if I’ll ever get to have another normal date night with him. I don’t know if we’ll ever be able to go to another concert together. I don’t know if we’ll ever have a normal sex life again.

It’s hard sometimes not to think of our relationship in the past tense already, even though he’s still here. I have no idea what the future holds but it may not hold many of the same things as before. Of course, this is also a chemo weekend, when everything looks more bleak anyway.

It feels like the acute illness stage snuck up on me in a way that feels different than before. And I don’t know how much of that is due to the fact that we’re both spooked by the recurrence and lost a lot of our optimism, and how much of it is a genuine premonition that he’s not going to return to “normal” as he was even three months ago. I am essentially powerless except to wait and find out what’s next.

I have control freak tendencies as it is and this is really the ultimate test in learning how to live with things I can’t control. But this stage where it seems like he’s worse than before really feels like it’s the beginning of the end. He says the beginning of the end was when he first got diagnosed and I suppose that’s accurate, but this just feels different to me because optimism got me through it before and I don’t have much of that now.

I’m incredibly mindful of the fact that things are much harder for him than for me and try to keep my focus on alleviating his suffering as much as I can. But at the same time, I also have all these worries—the greatest of which is how I will get through the rest of my life alone. I really don’t want to be completely alone and for the most part, I haven’t been since I was 20.

I’m not ready for all this but I don’t really get that choice. I just wish someone would hug me and let me cry.

My future sex life

I have been doing pretty well to distract myself lately, especially with all the new excitement of my middle daughter coming out. On that note, we went for her second Covid vaccine yesterday and had lots of time to talk. And it occurred to me that if I end up staying in this area, it might still be important to get out of the suburbs and move to a more LGBT-friendly neighborhood.

But I digress. The truth is that I’m actually feeling pretty overwhelmed by my husband’s cancer lately, which is probably intensified because this is a chemo weekend.

An old friend I used to be very close to when I lived in Michigan contacted me, wanting me to review some stories she wrote because she wants to get them published. She said she trusted me to read them and give her honest feedback and didn’t really trust anyone else to do so.

Though she’s happily married to a man now and mothering two young children, she was in a lesbian relationship when I met her. We used to have long talks about how to cope with being bisexual while in a straight marriage. The outlet she’s found for that is apparently writing lesbian erotica. And though she told me it was pretty vanilla, she definitely wrote it well and as I replied to her, for being vanilla, that was certainly pretty spicy vanilla.

And that got me to thinking about the current state of affairs in my life. Not that I want a lesbian relationship, and certainly my sex drive fluctuates a lot more than it used to, thanks to the hormonal changes of perimenopause.

But my mom assured me that when I get through menopause, my sex drive will return and it will be like I’m a whole new woman. And it occurs to me that most likely, whenever that happens, my husband is not likely to be in a condition to share that with me, even if he’s still around. Already I can tell how chemo is taking a toll on him in that regard.

And it’s not a matter of patience or being unable to set aside sex when there are much more pressing health concerns. It’s obvious that his well-being comes first and foremost.

But it just really struck me that if I’m expecting to be alone after he’s gone, that’s also going to mean spending the rest of my life without sex. That’s one of my primary ways of feeling close in a relationship and I’m going to have to do without it altogether. I will definitely miss it.

I’m certain that my love and concern for him will bring us together during times when we can’t be physically intimate. I will probably find whole new ways of feeling close to him. But it just really reminds me again about how much I’m going to lose. Not just the love of my life but also the physical expressions of that love. And it reminds me once again that I feel far too young to be widowed and like the best times are already behind me.

Why do I do this?

I really wish I had a really good therapist, because this is the kind of question I would need to ask her.

I have a tendency to go to extreme lengths to try to make the people I love happy. An example from my current life is the story of the masks for my son’s girlfriend. He’s been dating her for four years and I have a lot of warm feelings toward her, almost like she’s a member of the family.

I made her a mask way back at the beginning of the pandemic and she really likes it; she says it’s her favorite one. I’m not the most expert at sewing and surely she has other masks that look better. But even when I see some of the pictures she draws, like portraits of herself and my son, she’s always wearing the mask even in the drawings.

I suspect it has some sort of emotional significance for her, though I can’t be sure. She’s a very sentimental young woman in general. She’s experienced a lot of loss and doesn’t have a stable mom figure in her life, and perhaps I flatter myself by thinking that sewing for her is an act of care that means something to her.

I’ve repaired the mask several times already (like I said, I’m not an expert at sewing.) I was looking for more of the fabric and it’s sold out everywhere in our metro area. I even got on eBay and Google to see if I could find more anywhere with no luck. She didn’t even ask me to make more.

She also recently got her dress for the senior prom and she wants me to make a mask to match her dress. So I sent her a link to the fabric site and asked which color was closest to her dress. She said it was somewhere between two of the shades, so I ended up ordering both and will have my son take them over to her so she can choose which is a closer match.

I’m sure this is nice of me and all but I also recognize that it’s pretty over the top. I have a tendency to do this sort of thing frequently and not just about fabric. I go on serious hunting sprees to find just the right things for people. (Did I mention here how many stores I went to in search of the Easter candy everyone likes? But I ended up finding everything, even a single-origin chocolate bar because that’s Amy’s boyfriend’s favorite.)

On the one hand, maybe I’m doing it for the reward I get from finding just the right things. Or maybe I do it because I think it will really make the recipient feel special that I went to that much effort, which is what I would tell you is my reason for doing it.

I know that gift-giving is my “love language” and it’s how I feel I’m most able to express love. I also really enjoy the thrill of the hunt. Searching high and low for something specific is deeply satisfying for me.

But realizing that I take it to extremes also makes me think there must also be something deeper going on, some subconscious motivation that I don’t understand.

Bonding with my daughter

I decided to step back and let my middle daughter approach me at her own pace with her requests. Today, she asked me to help her put on makeup. That was actually a lot of fun for me, since my oldest daughter never really let me do that.

I also gave her some of my skincare, which I suspect will likely work for her because her skin runs toward the oily type like mine does. I asked her if she wanted me to just show her how to put on makeup or if she wanted me to walk her through the skincare routine first, and she wanted both.

In that regard, I also feel like I missed out on similar bonding moments with my own mom. My mom didn’t let me start wearing makeup until I was 14 or 15; I don’t remember exactly when but I just know it was much later than I was interested in it. Even then, she said I could only wear mascara and blush. She didn’t show me how to apply it and she didn’t tell me anything about skincare.

As a result, I walked around through my entire 20s wearing foundation and powder (with no blush) that were way too light for me. I see pictures of myself now from that time and just kinda cringe. Someone really should have told me that I looked like a ghost.

On a similar note, I didn’t start doing much regarding skincare until like 2 or 3 years ago, which is extremely late in life. I had two Sephora marketing reps come to my house 3 years ago to watch me put on makeup and I took up much less than the allotted time, most likely because I didn’t start with a skincare routine. Again, I just didn’t know because nobody had ever told me.

This stuff may seem shallow and I’m sure that on some level it is. But at the same time, I figure that if my daughter is going to go to the effort of wearing makeup, I want to show her the right way to do it. It would be much different if she wanted to be creative or dramatic with her makeup. But because she wants to learn how to apply it and look natural, I want to spare her from looking back at her past self and cringing if I can help it. Being trans, she’ll probably experience that enough already. I just want to share with her some of the things I learned the hard way, and she seems to genuinely appreciate the lessons.

At first, I gave her a shade of foundation and concealer and blush that were too light for me, thinking they would work because she’s much more fair-skinned than I am. But it turned out that even that was still a shade or two too dark for her, so I ordered some in a lighter shade and am going to pick it up tomorrow so she won’t have to wait for it to be shipped. Wearing makeup seems to give her more confidence and I don’t want to delay that any further.

I also ordered some more clothes for her because I don’t want her to have to be cycling through the same three outfits. I was really clear to solicit her input about everything I ordered to make sure she really liked it and I ordered from stores geared towards women her age. If any of it gets here and she doesn’t like the way she looks in it, we’ll return it. I just want her to feel as good about herself as possible.

In that regard, I also feel like my mom failed me, though I don’t really hold a grudge anymore. But my mom always chose my clothes based on what she liked, maybe giving me a choice between two things she liked and telling me to pick one (when the truth was often that I didn’t like either, but I didn’t feel free to say so.) We always shopped together at stores that catered to older women her age, which had very few things that appealed to a teenager. Maybe that’s why I can relate somewhat to the dysphoria caused by not wearing clothes that really reflect you.

My daughter has decided that she thinks a different name suits her more than Autumn does and I know what name she’s considering, but she wants to sleep on it a few more days to be sure it feels right.

In all, I see a new confidence emerging in her gradually, as she realizes that the transformation she seeks is really possible. I just think it’s so lovely to watch her blossoming and I’m so honored that she’s allowing me to be a part of it.