Being a hippie

It’s kinda funny because I never really fit in with any groups in high school. I hung out with punks and skaters but always got the sense that I was never quite one of them. I was viewed as too much of a “normie,” I think.

But the interesting part (to me, at least) is that my kids view me as being kind of a hippie. My youngest asked me the other day if I’ve ever been in this store in the mall called Earthbound Trading Company, because he said it seemed like the kind of thing that I would like.

They sell tie-dye clothes (and did long before that became trendy), crystals, mandalas, Buddhist art, etc. And it is indeed the kind of thing that I like.

I found it interesting for some reason that my kids view me as a hippie, though. I guess that’s accurate. I know what herbs can be used to treat common health conditions. I really like spicy and earthy scents, including patchouli. My taste in home decor (especially in my office, which is like my personal space where I can express my taste the most) includes lots of candles and books, a Buddha statue, a Hindu tapestry on the wall, and prayer flags.

I wonder what, if anything, they think about having a hippie mom. I do find it interesting that they all have that view of me since I’m pretty quiet about it. Naturally, those views come out in conversation. But I also think that this is just naturally who I am and who I’ve always really been.

I don’t have to work at it or pretend to be different than I am to try to fit in or impress anyone. I pretty much have a “live and let live” philosophy about most things. I hope that at least in that regard, my kids have benefited from the fact that I’m usually pretty chill and laidback (no matter how much I might wish that I were more naturally ambitious.)

The future is unwritten

I’ve been thinking a lot about two major topics, neither of which will come as a surprise: my husband’s cancer and my disability.

First, regarding my husband’s cancer, I got a helpful reality check from one of my online support groups. There are a number of people among the group who have the same type and stage of cancer as my husband. Like my husband, they had a long period of being free of disease, only to face recurrences. They’ve been in and out of NED status for up to 12 years and counting, in some cases.

That gave me a lot of hope that the recurrence he’s dealing with now is not necessarily a sign of immediate doom. You can probably imagine that I just let out my breath when I read that. Maybe he’ll still have many years left. They might be punctuated with sucky times on chemo but he may indeed still be around for a while.

The other thing I’ve been thinking about a lot is my disability, particularly in terms of what I expect of myself. In short, I still think I should be able to do just as much as I could before, even though I butt up against my limitations on a regular basis.

I was talking about it with my husband yesterday and he estimates that my capacity—or the number of “spoons” I have available on any given day—is only about a third of what I had in my mid-20s. Yes, I’ve really lost 2/3 of what I used to have.

I admit: that stopped me in my tracks. It just seemed so stark. But at the same time, I also couldn’t really debate him on that, either. I realized that he was most likely correct in his assessment of how much I’ve lost.

Yet I still haven’t adjusted my expectations of myself accordingly. In truth, I still believe that I should be able to do everything I could before. I set extremely unrealistic expectations for myself and then criticize myself harshly for being unable to meet them.

I still hear this voice in my head telling me that I’m just lazy. And I know where that comes from: my dad. He made several comments to me over the years (that I’m sure he didn’t realize would carry the weight that they did) suggesting that I was lazy. I could accomplish a lot more if only I managed my time better.

Was that ever fair or justified? Maybe it was at one time, though it wasn’t ever kind. I deeply internalized it anyway. But the fact of the matter is that my capabilities are severely diminished since then. I’ve been seriously in denial about admitting to myself just how limited my capacity is now.

I first started thinking about this in regards to my part-time job grading English/language arts test answers for 3rd-5th graders. The work is really pretty easy and I enjoy it for the most part. But there’s also the fact that doing this job absolutely kicks my ass. I don’t get to take evening naps anymore because of the hours I work and frankly, I’m suffering because of not getting those naps.

It makes me feel very prematurely old that I need those naps and in fact, can’t function well without them. But whatever I may feel about those naps doesn’t change the fact that I really do need them.

Maybe it’s time to start being kinder to myself. I need to respect what my actual needs are, instead of pretending I don’t have them. The fact is that I’m on disability for a reason (as shocked as I admittedly still am that I can’t just overcome this through force of will alone) and that I really am sick.

Healthy people can get through a full day without napping. I am not one of them. Healthy people also don’t have MRIs of their brains that look like mine, either. I really, really don’t want to believe I’m as limited as I am. But I am, whether I like it or not.

Maybe it’s time to start being my own little cheerleader, celebrating what I am actually able to do.

Look for the helpers

Yesterday was the day of my youngest son’s senior prom. I enjoyed the preparation and getting to be a part of it, especially since he was the only one of my kids to attend prom.

My son’s girlfriend’s guardian drove them to and from prom, then to the after-party. I brought over snacks and a change of clothes for my son between the prom and the after-party (and I also drove both of them home later from the after-party.)

The most surprising part of the night was that I spent almost 2 hours in between the prom and the after-party talking with Dylan’s girlfriend’s guardian. Though I’ve obviously known him on a cursory level for the four years that Dyl and his girlfriend have been dating, I never really had a real conversation with him until tonight.

I was surprised that we talked fairly easily. His wife was my son’s girlfriend’s grandmother and she died of cancer 8 years ago. There was a fairly significant age gap between them, so he was the exact same age when his spouse got sick as I was when my husband was diagnosed.

I respect him a great deal for the loyalty and care he has shown to my son’s girlfriend. Her grandmother actually had custody of her because her own parents were unfit and he still stuck around and raised her after his wife died.

I sent him a thank you card about a month ago, thanking him for all he’s done to help feed and drive around my son over these four years. I also wrote in the card that he’s done a wonderful job raising my son’s girlfriend and that she’s such a lovely and polite young woman. Yesterday, I noticed that they still had my thank you card on the mantle of the fireplace, which pleased me. (You never know when what seems like a small gesture will be so meaningful to the recipient.)

He didn’t really have to raise her. Technically, he’s her “step-grandpa” and apparently had only played that role for a few years before taking on the role of raising her permanently. He really loved his wife and hasn’t remarried since he lost her to cancer. He’s always struck me as having an air of sadness about him.

Last night, we talked quite a bit about having spouses with cancer and about how heartbreaking and challenging it can be to navigate that role. We also talked about raising kids to adulthood and how we were both in such a hurry to be on our own at that age, yet we both fully support wanting to keep our kids at home until they’re ready to leave.

He found out from my son’s girlfriend that I’m a fan of George Michael and he is, too, so he gave me a biography of George Michael that he just finished.

Overall, it was just a really nice and friendly conversation. In so many ways, we don’t have much in common otherwise. (No, I can’t see myself ever dating him after my husband’s gone, for example.) But we found enough common ground to have a lovely conversation and I really enjoyed it.

In some ways, he’s been a very unexpected source of help, especially as my husband is going through cancer treatment. He’s really helped a lot with driving around my son, especially from school events. In all honesty, I don’t feel like many people are helping us otherwise.

Sometimes people come into your life and you don’t know why. When my son and his girlfriend started dating four years ago, I remember my son first telling me that his girlfriend’s guardian was her “step-grandpa” and being so confused by what that meant (especially because I don’t have any divorces or remarriages in my own family.) But for all intents and purposes, he’s her dad, and she usually refers to him that way.

At the time, I had no idea what I would come to have in common with him during the course of my son’s relationship with his girlfriend. There’s something kinda sad about the fact that what we have in common is having spouses with cancer. But I have to admit that it was just really nice to have a conversation with someone who totally gets what I’m going through.

Better days…sorta

The downside of today was that I completely slept through the time when I was supposed to have a telehealth visit with my neurologist. It wasn’t particularly early, either.

I still have no creativity left to write any personal essays, either. I really think that my part-time job is completely kicking my ass. It’s only temporary, so I guess I’ll probably stick it out. But not being able to get my evening naps is already taking its toll…plus I also feel like I’m coming down with a cold that my youngest has had for a couple of days.

On the bright side, though, I did have a bit of a chance to talk with my husband. He said that it’s not really possible or realistic to try to make every day special. I’m not sure if I’ll really be able to release myself from that expectation but I’ll try.

He also strongly argued against me going back to Michigan whenever he’s gone. He said that although housing is indeed cheaper there, so many other things are more expensive. And dealing with snow and ice again on a regular basis would be disastrous, since my balance is not very steady anymore.

And the healthcare is also much worse and more expensive there. Being able to go to a research hospital like UTSW means that they have very generous financial aid. (Not to mention that they actually understand what type of illness I have.)

He’s also pretty confident that I can make it work here, even if I’m not able to buy a house. He was also looking into housing for sale in other neighborhoods, where the areas aren’t quite as popular as where we live now, and are therefore a bit more affordable.

Ideally, I’d still like to have a house like this one, with plenty of space and enough bedrooms that the kids will always have a place to stay if needed. But that’s really a want more than a need, and realistically, I can likely afford to rent a 1-bedroom apartment at the very least.

I guess it does kind of make me feel better that no matter what happens, I probably won’t have to leave this area, even if my circumstances are less than ideal. He always knows how to talk me down when my anxiety has me hanging off a ledge.

Fear is blocking my creativity

I wanted to try to write another article for Medium again. I tried writing two different drafts on separate topics last night and tonight and I just couldn’t get in the right frame of mind to finish them. They were both crap and I knew it. I wasn’t in the state of “flow” that I needed to be in, where the words come out of me easily.

In this case, I know that what’s blocking me is my fear. Not fear of writing, really, although I do feel some pressure that my next article better be good after such awesome responses to my others.

No, instead what I’m feeling is fear of being alone when J’s gone. (He starts another round of chemo tomorrow, can you tell?)

I feel like I’m caught in this weird in-between state, where I’m supposed to cherish every moment that he’s still here and I feel a lot of pressure to avoid thinking about when he won’t be.

But this is difficult, if not impossible, for several reasons. For one thing, real life still has to go on as normal, and it’s a lot of pressure to make even the mundane moments feel special.

For another thing, I’m really terrified that I won’t have enough money to survive —or at least not here. The thought has actually crossed my mind that I could end up having to move back to Michigan, despite having fought so hard to get out of there. I still hate it there for many reasons (and it’s cold there, which I hate extra intensely!), but it is possible to get a very cheap house there. At least I’d have my parents there and a few friends.

I’ve thought about moving to Oklahoma City because it’s only a couple of hours from here but I literally don’t know anyone there. That idea sounds just as bad. While the weather would be better than in Michigan and I could still keep my doctors here, it wouldn’t be that much cheaper.

There’s also the fear about being completely alone. I know I’ll never meet anyone else I love like J. But does that necessarily mean that I should never again marry anyone? I feel guilty even thinking about that. I feel like it should be enough to just live alone with my cats.

The fact is that cancer makes me feel like it’s a battle we’re fighting alone. Nobody really wants to hear about it. And I try to keep it at bay and we rarely even talk about it as a family, trying to keep our lives as normal as possible.

But really, nothing about this is normal, and I can only deny that for so long.

Family guests

My sister-in-law is driving from Tennessee in about 2 weeks to be here for my youngest’s high school graduation, just as she did when my middle child graduated high school two years ago.

Granted, it helps that she still has a lot of family in this area, since she lived here for more than 20 years. And her schedule has a lot of flexibility because she’s a teacher. But if my sister wants to know how to stay close to our kids despite the distance, well, this is one way that really matters.

I’m actually really looking forward to seeing my sister-in-law. She’s my favorite person in J’s family by far, now that his grandma passed away. (No one can ever top his grandma. She was incredibly special and I still greatly miss her.)

I can’t help but notice that this time, J’s mom is not coming along, like she did for my middle child’s graduation. On the one hand, that’s kind of a relief, because she can be very difficult to deal with. But on the other hand, she also had an excuse for why she couldn’t come, which was something she totally could have worked around if she really wanted to. But she’s pretty selfish and what she wants always comes first.

The sad reality is that she may never again see J while he’s still alive. It’s just a fact and it makes me so incredibly sad. Even if we choose to take vacation time to go back and visit family in Michigan, she lives so remotely that it would be several hours away.

But as for my sister-in-law, she learned well from her mother how not to be. My sister-in-law is truly a joy to be around. She’s a pretty devout Christian, but one of the types who seems to truly live her faith and is not judgmental about it. I really wish more Christians could be like her. Heck, I wish more people could be like her, period.

She’s fully vaccinated and so are we, so according to the CDC, we’ve got the green light for hanging out together unmasked. We’ll get to give rounds of hugs, which after this past year especially will be so wonderful.

I can’t wait to see her. She’s always there when it really counts and I’m counting my blessings to have her in my life.

Too much work…plus thoughts of homeownership

I had a really good Mother’s Day. I felt loved and special. Amy even got me a card (although it was not very sentimental), which was a big gesture because she very famously dislikes cards. My youngest also wrote that he appreciates “that we can talk like friends” and my middle child wrote that they didn’t know if they ever would’ve had the courage to come out without me. My husband also made me feel loved and special. It was just a good day.

But today was back to reality, which is going to kick my ass for the foreseeable future. I picked up a part-time job grading English/language arts essays written by 3rd through 5th graders on standardized tests. I actually greatly enjoy the work and I rock at it, which is good for my self-esteem.

But the problem is that I’m used to taking a nap during the hours I work and now I have to try to function without the naps. That’s actually a lot harder than I thought it would be and I somehow have to still be able to do my freelance work afterwards. I’m so tired already and I wonder if and when it’s going to catch up with me.

This is also an extremely busy week in terms of things I have to do for my youngest as he wraps up his senior year, as well as having two doctors’ appointments myself. I’m stretching myself sooo thin right now. I have all kinds of ideas for pieces I want to write for Medium but no energy left for them.

On a different note, suddenly I’ve become really obsessed with wanting to buy a house here and it feels really urgent because the housing market is exploding. I’m really scared of getting priced out of being able to afford to live here at all once J’s gone.

I made such a comment to Amy yesterday and she took me to task for using the phrase “when Dad’s gone.” She said that I was “being a doomer, like those people in D&D who need to roll a ten and say there’s no way they’ll roll a ten.”

On the one hand, I get where she’s coming from; I shouldn’t give up hope yet. But on the other hand, how can I NOT think about what happens to me after he’s gone, when I don’t know if I can even afford to stay in this same city?

If I were able to buy the exact same house I’m currently renting, the payments would stay about the same as what we pay for rent. And I do feel like time is of the essence: we have lived here for 5 years and our landlord hasn’t once raised our rent. By now, we are paying almost $500 less per month than the median rent for a single-family home in our area.

Not only could our landlord raise our rent at literally any time, this also means that without J, I’d either have to go down to a 1-bedroom apartment or move out of the area altogether. Since my middle daughter is nowhere near ready to move out yet, the 1-bedroom apartment is really not a viable option.

I know: my husband is still here. My landlord (so far) has not made any noise about raising the rent and we’re good tenants. It’s also possible that “starter homes” (like the one we’re living in) are overvalued due to a massive influx of new residents from California. Maybe the prices for this type of home will come back down because they’re not in line with average wages.

But then again: California has a lot of places that aren’t in line with average wages, either. And those average-wage people are indeed just priced completely out of homeownership. I predict that with all the Californians who are moving here, prices are going to remain high. I don’t really predict that they’re going to go back down.

The fact remains, though, that even though our debt-to-income ratio is good and we would only buy a house that costs about 2/3 of what we could qualify for, we still don’t have the down payment plus closing costs yet. (Especially considering that most houses are selling for more than the asking price.) I admit that it does really make me wish that my mother-in-law was as generous to us as her parents were with her—and she could certainly afford to help us with a down payment—but that’s just not who she is.

It all just makes me feel really unsettled. If rents and housing prices continue to go up at this rate, I might have no choice but to leave this area whenever J does die. And for all that I hate about Texas, there’s also a lot I like about it, and it is home. I don’t want to have to leave.

Random thoughts

I looked up whether it’s possible to make a lot of money from writing for Medium and it’s really not—usually only a couple hundred bucks a month. From there, I followed links to how to make a lot of money as a writer, and it was all the same old pitching ideas and constant self-marketing that I hate and have never been able to do successfully.

It’s kind of ironic because I know that I’m a good writer. My pretty much immediate success in writing for Medium only surprises me a little (mostly in that I expected it to take longer to find success.) But the very first thing I ever wrote got published in a book that was a compilation of essays, and I’ve been on the masthead of a couple of different magazines. I do kinda know that I’m talented, though I still feel incredibly obnoxious in saying so.

And I probably indeed could be very financially successful if I wanted to turn it into my personal form of hustle culture. But despite that, I just have no interest in doing so. My writing voice is incredibly shy and gets scared away easily when I start trying to make a lot of money from it, especially when rejection enters the picture. I guess that is what it is…but it also makes me hopeful that I’ll be successful when I finally start writing books.

On a totally different note, tomorrow is Mother’s Day. My husband already got me roses and we’re going to drink mimosas and cook on the grill tomorrow. I’m painfully aware that this is the last Mother’s Day when all my kids will still be living at home.

I asked J today if I was really a good mother. (Maybe it’s common to wonder that? I actually have no idea if it is or not.) I was admittedly not a great mom for most of the kids’ elementary school years. To the same degree that I connect really well to teens, I just can’t connect to little kids very well. I’m so awkward about it. I found ways to delight in things my kids did when they were little, but for the most part, I just really didn’t know how to relate to them.

J asked me what I liked about each of the kids. I told him that I like Amy’s passion for causes and her dedication to the people she cares about. I like Adam for their gentle and sensitive personality and the way they genuinely care about wanting better lives for all of humanity. And I like Dylan for his tenacity and willingness to work hard to achieve goals that are important to him.

Then J told me that those are all character traits that they learned from me. I guess he’s right, but it still surprised me. Overall, I just often feel like J is the superior parent to such a large degree that it’s sometimes hard to see any good traits that the kids get from me.

But as he pointed out, there’s often a line outside of my office most nights after he goes to bed, in which the kids are waiting to talk to me. So I guess that’s something.

However, Amy is never one of the kids waiting to talk to me, in part because we’re on different schedules. I feel like I’m not as close to her as I could be…but she’s also 23 and I remember that I didn’t feel particularly close to my mom at her age, either. I just hope it won’t take her until she’s in her 40s to want a relationship with me, like it did with me and my mom.

Oh, wow! I’m blowing up!

So I’ve shared the links that I’ve shared to the 3 articles I’ve written so far for Medium. The first 2 had a couple hundred page views; not too shabby, but certainly nothing I’d ever be able to make into a career.

The most recent one I wrote, The Cultural Lie of Mother’s Day, was chosen for greater distribution today and since then, it has absolutely Blown. Up.

An editor of an online social justice magazine contacted me and asked if she could publish the article, saying that she would be “honored” to do so. (Little did she know that the honor is really all mine, since writing essays about social justice topics is pretty much my greatest dream as a writer!)

I secretly hoped that eventually, one of my articles there would get some major attention, but I just didn’t expect it to happen this quickly. I am so excited to keep writing and to see what happens next.

On another note, I picked up a part-time job grading English/language arts essays and I sailed through training. I had to pass several sample grading tests, using the criteria I learned to apply to each one, and I nailed it, scoring 100 percent on all of them.

Things indeed do look a lot better today.

Feeling sorry for myself

I don’t often get in this kind of mood and I know that probably a lot of it is just that I’m really overtired. I’ve been pushing myself pretty hard since this past weekend and I just started a new part-time work-at-home job grading student English/language arts essays. But despite my better judgment, I’m going to indulge in a rare bit of venting/whining.

My disability sucks; that’s all there is to it. Maybe this is a delayed response to finally finding out what I really have; I don’t know. But I’m learning all the little ways that my disability is progressing and realizing that most likely, I’m never going to get better. The reality of that is really weighing on me heavily.

My left arm from my elbow through my forearm has been sore and exceptionally weak for a couple of months now. I told myself that I was probably just repeatedly sleeping on it weirdly. But it turns out that it’s actually a symptom of one of my diseases and probably isn’t ever going to go away.

Because I still wasn’t ready to admit defeat in terms of trying to get off of disability, I applied for a full-time job at home doing TV captioning for the deaf. I got to the point of doing extensive assessment tests for the job and I easily passed all of them except one, the one that measured my reaction time in response to hearing cues.

The recruiter wrote to me and explained the situation, saying she’d give me another chance to take that part of the test, since all the rest of my scores were so good. But nope, I still couldn’t pass it even on my second try.

The weirdest part about that whole thing is that I’m 100% certain I would have easily passed that section even just a couple of years ago. Based on that, I can really tell how much I’ve lost skill-wise in just a couple of years.

In the day to day of things, I don’t often notice my limitations and I still think that I’m capable of doing all the same things that I used to do. Times like these are a rude awakening that remind me that no matter how much I want to believe that I’m still capable, believing that doesn’t make it so.

I’m asking myself all sorts of questions, chief among them being why this had to happen to me. Why couldn’t the faulty genetics have been divided up a little more fairly, with me and my sister each getting one of these diseases, rather than me getting both?

And in truth, I’m honestly scared of the fact that both of these diseases are progressive. If I’ve lost this much in just the past few years, how much more will I lose in the coming years? How will I ever be able to take care of myself when my husband’s gone and my condition gets worse, when there are already so many things I just can’t do now?

I know these questions have no answers. I know life is random. And I also know that for the time being, anyway, my life is still pretty good despite these challenges. Worrying about the future won’t change any of it. I just wish, with every fiber of my being, that I had more control over my destiny.

At least I can still read and write (even if I can’t write by hand anymore.) If I ever lose those abilities, I really don’t know how I’ll cope.

Now it’s time to go to bed and see if my outlook is better when I wake up.