The perception that divides you from him is a lie

There are lasting repercussions to my years in the church and my years being powerless in general. The biggest is the amount of ground I have lost in awareness of social justice issues and in passing along that awareness. Oddly enough, I came to this realization last night after reading the interview with the cast of Arrested Development in the New York Times, of all things.

The interview disturbed me a lot. As I read the article, I felt every instance in which I’d ever been shut down, mansplained, gaslighted, dismissed. Clearly, I wasn’t the only one with that kind of reaction; I’ve seen tons of responses to it today and Jason Bateman made some long-winded but kinda confused-sounding apology. But this NPR article about the NYT article (how very meta) sums up my reaction to the issue pretty well.

Today I also came to realize how much I have failed to impress upon my sons and in many ways also my husband what I feel is important about women’s rights. We recently signed up for Hulu and I was telling them about wanting to watch “The Handmaid’s Tale,” a book I loved that’s been made into a show. My middle son, a high school junior, asked why I described the premise of the show (essentially forced reproduction and where female freedom in general is controlled totally by men) as scary and too close to our current reality. And he didn’t really buy my answer; he doesn’t think things are that bad.

It was then that I realized that, for one thing, I haven’t been talking about the horrible things in the news regarding the threats to women’s rights. Part of that is because I’ve found it overwhelming and that it makes me feel defeated.

But between Iowa passing a law that outlaws abortions at the time a heartbeat can be detected — before most women even know they’re pregnant — to a former Oklahoma senator trying to pass legislation that a fetus is the man’s property and the father must sign a permission slip before a woman can get an abortion, women’s rights are clearly being chipped away.

Oh, in a “Handmaid’s Tale isn’t so far off” twist, that same OK senator (now the EPA chief–you know, that same agency chief who banned AP and CNN reporters from its summit on contaminants a couple days ago) would require the woman seeking an abortion who said she’d been raped to somehow prove it. Because we all know how seriously the authorities take rape cases.

Too many links? Less than 40 percent of reported rapes result in arrests. As the receiver myself of a “what were you wearing?” response to my own admission of a date rape, and having trained as a volunteer sexual assault advocate for a women’s shelter, I know that few women feel assured that anyone will ever come to their defense if they report rape. Few will believe them. And I believe it’s getting worse and women are less safe now.

Just look at the “incel” (involuntary celibacy) movement that is being used to justify mass murders. Seeing as how the incel group on Reddit had 40,000 members before it was banned, and the issue is still being discussed in other forums, it’s clearly not going away. It’s the sexual side of the alt-right. Women, along with Democrats and people who care about helping others, are seen as “weak” and worthless.

It’s the biggest reason I never doubted Trump would win, like so many of my friends did: I knew the size of the community and their anger. Honestly, I should have seen this coming years ago with the Heartiste site (not linking to it) and the whole idea that men who respected women were wimpy “betas.” That whole movement promised men both more sex and respect if they asserted their dominance over women, refused to help with chores and insisted on sex on demand.

I, along with many women I know, have always had this low level of fear of sex and men and rape. It’s really hard to let go of, even when you’re old and fat. If you’re female, it’s just something you live with your whole life, but eventually most women find ways not to have it in the forefront of their minds. (Even my mother-in-law used to avoid certain ATM machines and advised me to do the same because of the presumed greater risk of rape there…as though any place is really a rape-free zone.)

I am so angry about so many of these issues and I feel like if I let any of it out, I’m going to explode.

For nine long years I was supposed to be anti-abortion because of religion. Obviously that also meant avoiding women’s rights news because it so often ties into reproductive rights. I could never quite get there–certainly never enough to join my lone Catholic friend who invited me to join her in “40 days for life” crusades to pray rosaries for an end to abortion.

But I still tried to stick my head in the sand. The best I could say was that it was complicated. And it is still complicated for me. But I absolutely understand why women would choose to get an abortion, and if I were to get pregnant now, I probably could not continue that pregnancy. I do not want abortion to ever become illegal. The places where it is illegal are hardly bastions of human rights in general.

But my complicated feelings and anger about how much women’s rights are being dismantled are even harder because I’m the lone woman in a house full of males.

None of the males in my house have an explicitly anti-woman attitude. Most of them are too shy to harass women. They’re not the kind of swaggering dudes in the old boys’ club, bragging about how much pussy they get. They’re actually pretty against those kinds of attitudes.

So how can it be that I still feel like nobody takes me seriously when I talk about this stuff? Maybe it’s just because they don’t understand, not having experienced it first hand. I know my younger boys (especially my youngest) have said that they often feel like men get an unfair rap because of the actions of a few — or even the actions of the majority. The point is that he’s not one of the bad guys and doesn’t appreciate being lumped in with the ones who are.

And I get all of that. I truly do. The males in my home are gentle and sweet and are not at all the asshole types who are making things worse for women. But that doesn’t excuse their need to know about women’s rights and the issues I fear.

Just like that, I finally had my own lightbulb moment of understanding. I’ve been low key annoyed for several months by some of my friends who are way more vocally upset about racial issues than I am. By and large, these friends are people of color. And I’ve always totally agreed with their demands and been outraged at their mistreatment and I have never once used my white woman’s tears to get out of anything.

That article about how white women strategically use crying to silence women of color actually really pissed me off when I read it a couple weeks ago. Even more so when I saw it shared and retweeted all over the place. I have definitely never done that, so I felt personally attacked for something I hadn’t done. I feel like calling all white women “Becky” reduces me to a stereotype, the same thing I consciously try to avoid having doing to others.

I was similarly uncomfortable a few years ago when some famous blogger whose name I can’t remember wrote about how poor white people could still be privileged. At the time, I was still in Michigan and struggling a lot, so that took a really long time to wrap my head around. But I finally got that privilege doesn’t mean you don’t struggle. It just means that you accept that others face even more obstacles than you do.

And now, I’m starting to get the whole big picture. It’s hard to be a part of a privileged class when I don’t feel I’ve abused my privilege. I want to say that it doesn’t apply to me, and I truly don’t believe it does.

But if my response is more about my indignation over being lumped in with the oppressors, than validation of and concern for the oppressed, I am indeed part of the problem.

Similarly, when my sons and husband say the complaints about men don’t apply to them, I know that they’re coming from a place of good intentions. The complaints about men don’t apply to them in most cases. They may not feel they have much privilege. Even though they benefit from being straight white males, they’re not the alpha dogs leading the football team or sitting in the C suites. But you don’t need to be rich and powerful to have some degree of privilege.

But when they tell me they just don’t see what I see or that they think the “me too” movement and the conviction of Bill Cosby (how many times did that take?) are signs that things are getting better, it makes me feel dismissed and completely invalidated. Their gut reaction to defend themselves is an unconscious failure to believe what I’m saying. It’s exactly the “me too” issue on a much smaller scale, the initial tendency to doubt that women’s experiences could actually be true.

Acknowledging that these systems where people are being oppressed are in place, even if you’re not consciously doing the oppressing, is really uncomfortable. A lot of us think that if we’re not intentionally trying to hurt others, our work here is done.

But we can always do better when we just listen to and validate what people tell us. Just like when trans people take offense to unintentionally transphobic phrases some people throw around without intending harm, it’s hard not to feel defensive.

But being defensive is actually the worst thing you can do because it doesn’t indicate an open mind or a willingness to be educated. So many of the things we say and believe are based on unconscious beliefs, biases we were raised with, even cultural meanings that we never examined before.

This applies to me as much as it does anyone else in my life. Or anyone in society, really. We have to be willing to be uncomfortable when others tell us they feel oppressed. Because when you are in an oppressed group, that often comes with a lot of fear. There’s nothing to ramp up and make your fears feel justified like being told things aren’t as bad as you think they are, especially by the people you love most. If even your loved ones, your “safe” people, don’t take your concerns seriously, who will?

And that’s what I should have been modeling all along. I clearly had my own awareness to develop, which is still in progress. Instead of giving in to that innate human tendency to defend ourselves–especially when we know claims made against others like us don’t apply to us personally–it’s a lot more important to just listen. Take that defensiveness as a sign that you have a lot more to learn.

Those of us with some sort of privilege, even if it doesn’t seem like much, owe it to those with less privilege to at least validate what they’re saying. I hear you. I believe you. I’m trying.

Push it real good

I have to come to realize that I am super bad at self-care. For a long time, I didn’t even know what it was. Now I know I’m just actively resisting it.

I thought “self-care” was some kind of Oprah phrase for affluent white women, a concept that conjured up images of fancy tea and bubble baths and fluffy $100 robes. I also thought maybe that idiotic “she shed” commercial was even attempting to explain self-care very badly: eating crappy processed snacks as you hide out in an ugly floral room. (And in reference to that commercial, which is possibly the most irritating thing I’ve seen in many years, who the hell thinks Fiber One bars are a luxurious treat, anyway? And who came up with that annoying AF phrase “she shed”?)

But I am figuring out the hard way that for me, self-care is pretty close to imposing a hospital-type stay on myself. I recently suggested to my husband that I should try to recreate the experience; I called it a hospital day at home. That would entail basically just reading and watching TV and staying in my pajamas in bed all day, having meals and fresh water refills served to me, being free to take naps as needed. Not leaving the house. Not doing any work, paid or otherwise.

He has been all for the idea ever since I suggested it and keeps bringing it up. He would definitely help me do it. And the thing is that I have a million excuses for why not to do so. I just can’t seem to do it. I would be too aware of what was not getting done during my day off. It seems like the re-entry day would be twice as bad, so I’m better off just not taking that kind of lazy day in the first place. (And yes, I think of a rest day as “lazy.”)

I mean, even when I was actually in the hospital, I couldn’t stop working. Once I was admitted and had to stay, I asked my husband to bring me my laptop so I could still get my work done. You know, in between the MRIs and heart tests to see if I was having a stroke or an MS relapse. “Fortunately”, it was the latter. But even in the hospital, I couldn’t totally let myself relax. I still stayed up too late and worked too much. But it’s telling that I still got much more relaxation time there than I normally allow myself.

I even worked while I sat with Cammy in the last hours as he was dying. Part of that was to distract myself, and part of it was because I needed the money and freelancing meant I had to work even during one of the most traumatic experiences of my life. (No days off, even when my greatly beloved cat is dying? It’s no wonder the FT freelance life was total garbage to me. I deserve days off, especially for illness or family traumas.)

When I was younger, I said I wanted to avoid the treadmill kind of life. And yet here I am anyway. Being your own boss doesn’t eliminate the treadmill. If you do it wrong (as I have) being self-employed gives you less freedom.

Part of my resistance to a hospital-day-at-home is that my bed is really uncomfortable because it’s way too squishy, so it would cause me considerable MS-related pain to stay in bed all day. And realistically, with two kids starting to drive in the next six months, I probably won’t have the money to get a new mattress for a while (unless I keep freelancing while working to save for one, which is tempting.)

But even if a magical fairy just poofed a perfectly supportive new mattress into my bedroom tomorrow, I would still resist taking care of myself. It’s the same reason I find it so hard to stop freelancing even when I also have a full-time job. I always feel like I have to push myself a little bit harder — or a lot harder.

In truth, I know what self-care means for me. It means turning down lucrative freelance projects that I know are going to tax my brain almost to the point of meltdown. It’s eating way more vegetables and virtually no processed food. It’s forcing myself to drink a ton of water all day long, instead of avoiding it because I’m afraid of having to use the bathroom while I’m picking up the kids.

It’s finding a way to incorporate moments of self-care into every day, instead of making it the last priority I only allow myself once I’m nearly at breakdown point.

It’s getting enough exercise. It’s avoiding situations and people that make me feel threatened or stressed out. It’s keeping up with a regular meditation habit.

It’s admitting to myself that I really do have multiple sclerosis and that does require making some major changes. And that there’s a link between how much I hurt and how much I do (or don’t do) the “right” things for self-care.

In short, self-care is all about finding the balance between saying no to the things that are bad for me and saying yes to the things that are good for me.

But that sounds so much simpler than it is. It’s actually painfully difficult for me.

I have serious problems with saying no, especially when it comes to people I care about or opportunities to make more money. I will drop everything to help a friend, even putting myself out there when my help isn’t asked for. I have a hard time even feeling justified in telling my husband there’s a change of plans because I suddenly feel unwell. I just have terrible boundaries in general.

Unfortunately, I’m also pretty indiscriminate when it comes to freelance work. No matter how unpleasant the work sounds, no matter how much I know it will be too much for me to handle, as long as it pays enough, the extra money is nearly always too hard for me to resist.

These poor boundaries and constantly accepting more work are the exact opposite of self-care. In some ways, pursuing a FT job outside the home is a step in the right direction, adding some predictability to my life and income, and paying attention to my own inner truth that I am too social to be happy at home. But I know from experience that just having a FT job doesn’t eliminate my tendency to push myself and deny taking care of myself, either.

I’ve always had this perception that self-care means only doing the things that feel good as you’re doing them. Going to the spa! Getting new bedding! Going shopping with the girls like in a movie montage! That self-care should be “fun” and pampering and luxurious. Like it’s a brief vacation from life that you only deserve if you work hard enough…and I never feel like I work hard enough, because “enough” for me is based solely on income. And I’m never at that point of comfort.

And actually, I think for me self-care is doing the opposite of what sounds appealing. What sounds appealing is eating salty junk food and drinking tons of coffee and burning the candle at both ends (and in the middle as well.) Staying up way too late. Competing with friends about who took off fewer days from work last year.

Going to bed early? Eating mostly vegetables? Meditating? Exercising and doing yoga? Boring. Oh god, sooo boring.

Maybe that’s a sign that I still haven’t grown up yet at 44 years old. Maybe it’s just that I’m a product of our modern 24/7 culture. I don’t honestly know why I have this deep, innate belief that whatever I’ve done still isn’t enough and I should be doing more.

I have read before that many people with MS are similarly hard on themselves. It’s hard because I’m trying to resist blaming myself for my illness, especially since many people have similar traits and don’t have MS. It’s not my fault I have MS and I can’t control it. But I do know I’m apparently capable of making it worse.

But staying well may depend on my ability to overcome my tendencies. To not feel like I’m a complete failure as a person if I don’t work every day. I have to get over my intense lifelong FOMO. When I was a kid, I resented my way-too-early bedtime because I was just sure something exciting was going on without me and that’s why they wanted to get rid of me so early. But for how long will I let my childhood rule me? It’s over.

I may not be able to do everything because of the MS, which also ramps up the FOMO. I know for sure that I can’t keep up with the over-scheduled life that is so valued nowadays. I may have to have some weekends (or even just one whole day, ever) when I’m not going anywhere, not trying to work, not feeling the stress of “you should be doing more” hanging over me.

I just don’t know how to get to that point. That will probably require something good for me that involves self-discipline that I don’t want to do, like meditation. Because being good to myself is really hard, but my health depends on it.

Yet, you remain here because all you need is me

Sometimes I still have moments of intense panic and despair, but I’m getting better at getting over them quickly.

First of all, I realized that my goal of extreme self-denial to become more financially secure is just going to make me miserable and suck all the joy out of living. I’m comparing myself to a few people I know and/or may be related to, who have incomes that are more than double the national median. Why in the world would I compare myself to them? Not only do I not share their incomes, I also don’t share their values in most cases.

Similarly, comparing myself to the savings habits of immigrants is also not very realistic. The one thing I am not willing to do is live in a really crappy or small place in a bad neighborhood just to save lots of money. Sure, I could probably cut my rent nearly in half if I got a two-bedroom place and made all 3 kids bunk up in the same room. I could save a shit ton of money if I lived in a place that was falling apart. But we’d be miserable.

I don’t have the savings habits of immigrants and as such I also don’t have similarly large amounts of money saved. And honestly, I’m in good company: everything I’ve read shows that most Americans are in a similar boat as I am, if not worse off. The fact is that most of us have relatively stagnant wages, especially compared to astronomically rising health care costs. If you happen to need a lot of healthcare like I do, it’s going to be even harder to really get ahead.

In truth, my life is pretty great. The MS factor is really hard; there’s no doubt about that. I spend a lot of time in pain. But I live in a beautiful house with a great landlord in an internationally diverse neighborhood. I just got a newish car last year (2 years old) and it was exactly the kind I wanted.

My kids finally all have their own bedrooms, something they had wanted all their lives. I have great, intelligent kids who are both interesting and kind. We have enough food. We have little luxuries the family enjoys like high speed Internet and a family plan on Spotify premium.

I didn’t move here to suffer more so that I could save more money. Honestly I probably could have done that in my hometown, since there was no shortage of entire blocks full of rundown houses for rent for not much more than my car payment. My kids might have been at risk for random drive-by shootings and my husband at risk of chronic unemployment, but hey, I could have rented a whole house for less than $500 a month!

I wanted a better life where things weren’t so miserable. Why would I intentionally pursue more misery just to save money? That’s not me–even if my eyes are open to the possible consequences of not doing so.

On top of all this, I’ve been married almost 24 years to someone who still makes me laugh and still has interesting things to discuss with me. He helps me out, especially when my MS is acting up, but still sees me as kind of a badass overall anyway. We got through the distancing from our respective religions. While he still considers himself a non-practicing Catholic, he completely accepts me for my reversion to what I always was (save for the last few very weird years): a spiritual mystic, Buddhist-influenced humanist who really doesn’t want much to do with Christianity.

He is interesting and smart and hilarious and hardworking, the one constant I can count on. To be truly known and loved anyway is one of the best things there is.

So maybe I won’t ever be able to be so strict with my expenses that I’ll never have to worry about money again. Maybe I don’t want to give up everything that brings me a little joy in hopes of maybe someday paying off my student loans a little sooner.

But in the meantime there’s really so much good about my life and I want to appreciate it, instead of comparing myself to people whose lifestyles I probably can never have (the wealthy ones) or whose lifestyles I probably wouldn’t want.

Tonight I might change my life, all for you

Can I be honest for a minute, like brutally honest? I just don’t know how to get ahead.

Before I used it all when Cammy got sick, I finally had the requisite Dave Ramsey-approved $1,000 emergency fund. It freaks me out that I don’t have that anymore, and I’m really hoping that the client work I’m doing now will allow me to regain it.

I’m not a crazy spender. I’ve never eaten dinner at a place where it costs more than $25 a person, and even that is only on special occasions. I don’t have a shopping addiction. I cut out my regular Starbucks habit years ago. One of our primary family cars is an 11 year old Chevy.

We’re not poor anymore like we once were in Michigan. We’re finally able to pay our bills on time. But it’s still paycheck to paycheck and things like an extra high utility bill affect our budget for the month. We do pay a lot in rent — far from the highest, but needing a four-bedroom place in an acceptable school district without a grueling commute just plain costs a lot around here.

And to be clear: I’m not complaining about any of this. I love where I live. I love that I don’t have to total up the groceries I’m buying to make sure I can afford them anymore. That’s actually kind of what prompted this: there was a thread on Twitter about how the difference between poor and broke is when you stop having to carefully ration everything you buy at the grocery store.

I can still spend $20 a week on my smoothie ingredients, which I consider both a luxury and a preventative health measure. I couldn’t do that if I were poor. Yet I did the type of grocery shopping where I kept a running total on the calculator on my phone for so long that it’s still second nature. I can usually guess the total within 5 dollars even without using the calculator.

And I know that being okay with that 5-dollar margin of error means I’m no longer truly poor. But I’m also scared to let anyone else do the shopping because they don’t have that same innate budget-tracking skill that I do, and we’d feel the effects if they spent a lot more.

Yet I think about the fact that there are people who have incomes similar to ours who are saving a lot more money than we are. And instead of feeling sorry for myself, now I want to figure out how they do it.

First step has to be about earning more money. We’re still right about on the median household income and not rapidly progressing. I’m sure that lack of rapid progression accounts for something significant.

But maybe I also need to go through my spending with more of a fine-toothed comb. I was telling my husband earlier that I was proud of myself that I had spent less than $100 this year so far at Sephora and about an equal amount at Ulta. He pointed out that his mom and sister always used drugstore makeup and hair care products. I’ve worn designer brands of makeup for years and I know which things work best for me. Drugstore hair care products seem to especially suck for me.

But if I could cut back from designer brands to drugstore brands, I could probably save a couple hundred bucks a year. If I could get over my (admittedly strong) bias against stores like Aldi for my grocery shopping, I’m sure I could save even more. If I saved, say $30 a week, that would add up to an additional $300+ per year. Maybe I could turn up the indoor temp a couple degrees in the summer and be a little less comfortable. I’d eventually get used to it.

It has to be a mindset and it’s one I haven’t yet developed: embracing frugality so I can save more money, not because I’m poor or broke. But because the goal is to become un-broke, to stop living paycheck to paycheck. I want to be like one of those people (most often immigrants) who work way harder for way less money and still manage to save major cash.

There’s also the fact that I feel like there’s a two-fold front I need to attack. The first is having automatic savings, which I hope to start when I get a new job, and the second is making a lot more money. My husband already works very hard but doesn’t seem to be on a fast-track to rapid income growth. I’m not either, but I have a pretty damn lucrative side gig. I can keep doing my side gig while also working full time and hope I won’t need much sleep (which is admittedly a challenge with MS.)

There has to be some way to do this. Even having about the median income with somewhat high rent and medical expenses, I refuse to accept that we’re doomed. I really want to pay off our student loans, and that’s going to require a lot of sacrifice. Other people seem able to save major amounts of money, no matter how much or little they make, although I know the majority are living paycheck-to-paycheck and relying on credit. I just don’t want to be the majority; I want to be more secure.

Maybe I can make enough from my side gig and saving money to really make that happen. It’s like a game or a puzzle that I’m determined to master. The question is if I can avoid feeling completely deprived and miserable in the process.

I am not a pretty girl. That is not what I do.

This is a picture of some of the magazines I threw out in recycling today, all of them unread. I had been keeping them, waiting for the day when I wanted to read them, but I realized it was never going to come.

Fortunately, I spent very little money on the subscriptions, having taken advantage of special deals. But I was starting to feel like a year’s worth of unread magazines, five titles in all, was getting scarily close to hoarder territory and it was time to purge. (Yes, I’m a little obsessed with avoiding becoming a hoarder. I’m not the most amazing organizer but I find it very satisfying to get rid of possessions, and I similarly avoid acquiring too many things I don’t actually need.)

Armloads of magazines went to recycling. They were in two categories: Christian magazines and women’s magazines.

Surprisingly, even though I no longer really consider myself a Christian at all, those magazines had content that was much less disturbing to me than the women’s magazines. After all, the Christian magazines I read were Relevant, at least half the content of which was about indie music, and Christianity Today, which occasionally had some interesting trend stories and reporting on social conditions around the world.

However, the women’s magazines were a different story. There was no artful arranging of how these landed in the recycle bin, but the Allure issue with Alicia Keys was a perfect example of why I had no interest in reading the magazines. (And not because I have anything against Alicia Keys.) The issue below it had an article about birth control access, definitely an issue that’s changing for the worse even if not personally relevant to me anymore…but I’m not going to get my political info from a magazine that’s also trying to sell me $300 perfume.

But “vaginal beauty is having a moment”? No no no no. Unfortunately enough trend stories have filtered into my brain and I know what they mean by that. Stuff like vaginal steaming (thanks a lot, freaking Gwyneth Paltrow…google it if you want to know because I ain’t linking to it) and bleaching and deodorizing and tightening…just no. If you think I need any of that stuff then 1) you don’t deserve to see my vagina anyway and 2) you’re probably a raging woman-hater. Is everyone on staff at these magazines a misogynist?

“Is Botox feminist?” I didn’t read the article but I’m just gonna go ahead and say no. There. Saved you some time. Unless you need it to treat migraines or some other legitimate medical use — which isn’t really a feminist issue — then I’m going to say there’s no way a feminist case can be made for using Botox.

Then the “hair tourism” story, I don’t have any interest in reading it, but I can say it sounds uninteresting and stupid.

Really, I think all these articles have one major thing in common: the idea that there’s something inherently wrong with women’s bodies as they are, and with aging women in particular. They say we should all spend lots and lots of money trying to be “perfect.”

Look, I have smile lines around my eyes. That’s a good thing because it means I’ve been smiling enough for 44 years to cause those wrinkles. My vagina looks like a vagina and anyone who doesn’t like it doesn’t get a vote. My hair is normal-people hair: some days it looks cute, some days it doesn’t. I don’t have enough money right now to regularly go to the salon, but frankly, I don’t care that much anyway. Most of the time, I can think of better things to spend $50-100 bucks on.

I’ve realized that a lot of stuff that’s promoted as essentially female are things that I just really don’t care about. Unless it’s a special occasion, I don’t care if my bra and panties match. I am pretty secure in knowing that I don’t have to dress a certain way for my husband to be interested in me.

I also don’t care much about keeping up with fashion and beauty trends. Supposedly, women in their 40s aren’t supposed to wear statement t-shirts or graphic t-shirts anymore and you know, I just don’t care. I want to have the opportunity to dress up a little better for work, but I’m not at a point yet where I also want to dress like I’m at work when I’m at home. I’m also really freaking short but I’m not wearing heels (and that was true even before MS affected my balance.) I also don’t need to buy everything I find cute.

Similarly, with makeup, so much of it is designed to look good on 20-year-olds. If glitter and extreme contouring are really your jam, then by all means, do it no matter what your age. But if I try to wear it, I’m just going to look like an adult trying to look like a kid to keep up with the trends. Like Chrissy on “Three’s Company.” And I am personally not a fan of the extreme contouring that’s trendy now; it often seems more like performance art or stage makeup. I think makeup should mildly enhance your features, not make you look like someone else entirely.

I like to browse Sephora and Ulta but most of the time I don’t get anything. I wear the same makeup regularly, so how many new lipsticks and eyeshadow palettes can I possibly use? Eventually, it’s just more clutter (see above about my fear of becoming a hoarder) and more wasted money. I’d rather save that money to make my future more secure or spend it on something more meaningful (travel, for example, which is still one of my biggest goals.) I’m not going to spend $45 on something I might only use once when I first get it and then forget I have it.

Sigh. I am pretty much an advertiser’s worst nightmare. You have to work pretty hard to convince me that I really need something frivolous. I’m not trying to get a man and I see that as a pretty pointless mission promoted by women’s magazines. I don’t want someone who only wants me because I have a “pretty vagina” acquired through lots of expensive maintenance or a wrinkle-free face that doesn’t move. I don’t think that’s what most people find attractive in a woman, anyway. I want to be interesting to people much more than I want to be sexy.

I’m convinced that the mainstream messages aimed at women are designed to make women poorer, more insecure, and less interesting. Nobody on a date wants to hear at length about a person’s shopping finds or beauty rituals. You’ve gotta have more interesting things going on in your mind and in your life.

It really is true what people say: the older you get, the less of a fuck you give about what people think about you.

During my years in the church, I was being pretty untrue to myself and therefore I cared more on some level about appearing like I fit in. But now that I’ve cast that aside, I’ve realized that I truly don’t care much at all about what anybody says I’m “supposed to” do. I was like this before, but only more so now.

My biggest discomfort with aging is about feeling like some possibilities in life are less likely. For example, it’s very unlikely I’ll ever go to med school now (something I once wanted but ruled out because I thought I was too old…at 24.) But I really don’t lament the loss of my youth or my beauty. I still have quite a ways to go on this front, but I am so much less insecure now than I was when I was younger. I may have had a much more attractive body and had more interest from other people then, but I was a mess. And I didn’t feel beautiful anyway, even when I was more conventionally so to more people.

The phase I’m moving into now is to appreciate myself for how I am. Not to try to beauty-product my way into self-acceptance or try to live up to misogynistic messages in women’s magazines or live vicariously through my children. Life is really too short for that. I have to learn to love myself. Love other people better. Make peace with my mom before it’s too late. Work on accomplishing some of the things that will make me feel like I’ve had a life well lived.

And absolutely none of those things are going to be achieved by listening to society’s shallow messages of femininity.

What I am is what I am

I’ve been thinking a lot about the ways I’ve changed over the past year. While it’s easier to define what I’ve given up (namely, church attendance and pursuit of Christian faith), it’s also worthwhile to take stock of what I still have, the things that define me.

While forgiveness doesn’t always come easily for me, I generally try to make peace with most people. I still beat myself up over a few memorable moments over the years when I trash-talked someone else in an attempt to make me look better. It’s the kind of thing I’m only aware of doing once every few years and I feel bad enough for having done it that I really try to avoid it. (That said, I’m also not a saint. Some people do still bug me but I try to keep my complaints about them shared only with my husband, my snark repository, if you will.)

I guess on that note, I also think it’s a good thing that I’m extremely self-aware. I often know even when my behavior is inconsistent, even if I’m not always able to do better. If anything, I’m way too hard on myself, which I’m also working on. But I don’t think anyone could ever say I’m delusional or think I’m better than I am. I’m very aware that my words and actions affect others, even if again, I can’t always do better even when I know better.

I’ve also come to realize that even though I like some adventures and getting out of the house (and specifically greatly prefer to work outside the home), I also like for my home to be my sanctuary. I like to keep it relatively clean with a lot of empty space. My house in Michigan had accumulated too much stuff and we got rid of at least half when we moved down here. I discovered that I really like having less stuff. I’m not really a collector of anything.

On that note, an interesting study I found showed that living with more clutter increases anxiety. I tend to believe this is true because it increases mine. I’m not an insane neat freak; I don’t dust often enough and I still have two random cardboard moving boxes in my bedroom that I never got around to unpacking because I don’t know what to do with the contents.

But at the same time, I definitely reach a point where things are too messy for me. I have to go through semi-regularly and clear out the junk mail and the things I’ve stacked on my dresser so the counters and dresser top can be empty again. (Note to self: get rid of all those magazines you haven’t read.)

My husband often tells me that I focus too much on the amount of memory and brain function I’ve lost as a result of my multiple sclerosis. He says I’m still much mentally sharper than the average person even now. On the one hand, I can’t help but be sad about how much I notice that I’ve lost.

On the other hand, I recently got a glimpse that he may be right. I was in a job interview and I said I read medical journals in my leisure time and that I understand them (both are true facts and yes I’m a nerd.) The interviewer asked for an example and I talked about having read about how inflammation can strip away the myelin from nerve pathways in the brain. Luckily, I was at a medical company and the person I was interviewing with said her major had been neuroscience and she knew exactly what I was talking about. But afterwards, I realized that was a perfect illustration of what my husband always says about me still being smart, despite what I’ve lost.

I think another good thing I’ve learned about myself is that I really value knowledge and learning and that I’m perpetually curious. A lot of people aren’t. They’re just happy to consume entertainment and don’t care if they ever learn anything again. If they see something (for example, the name of a charity mentioned on a show), they probably aren’t even curious about what the charity does. But even if they are, I kinda doubt that most would get their phone and look for that information just to satisfy their curiosity and desire to find an answer.

I don’t ever want to stop looking for answers. In many ways, I think that’s why my attempts to follow Christian faith were so frustrating: they tried to give me the answers. And when there were no easily found answers, they encouraged me to stop looking and just trust that it was all “God’s plan.”

I hope I never stop asking, never stop wondering. The idea that the world is way too big for me to figure out gives me a sense of purpose, because I can keep chipping away at trying to understand.

I’m not perfect by any means. The fact that I can make a list of things that I think are some of my good traits is both challenging and uncomfortable. In the back of my head, I hear this little voice (maybe my parents’?) asking “just who do you think you are?” My inner voice tells me not to get too uppity and to remember my failings. I do remember all my failings far too well and I’ve made apologies where appropriate.

But the time has come to start recognizing what I do well. What unique gifts I have to offer to the world (or even that I have unique gifts to offer.) Many of the things that I’ve often considered flaws or weaknesses are actually good things, like my curiosity and intelligence and willingness to forgive.

Maybe as I continue to learn to like myself, I’ll have more to give others as well.

Oh baby you should go and love yourself

Dear Insta-famous weight loss blogger,

It’s time to break up. You won’t notice, since I’m just one of the 750,000+ followers you don’t follow back. It’s not about you: you’re awesome and go on with your bad self and keep killing it in the gym with your husband every day.

The problem is me, and what I’ve discovered about my distorted body image. On several online body image sites I’ve viewed in the past, I always think that I am the second from the largest silhouette shown, even though I’m actually just slightly bigger than average and weigh less than 200 pounds. This is nothing new and I’ve dealt with it my whole life: I always think I’m much bigger than I am. And thanks to some very negative influences in my early adult years, I further internalized the view that being fat was itself a character issue, a measure of desirability or lack thereof.

Instagram is definitely not helping, even though I follow the supposedly inspirational success stories of people who have transformed their bodies with hard work and exercise. Many have lost more weight than I ever weighed in the first place. And truly, that’s so awesome and commendable for them. Period: no ifs, ands or buts.

Well, maybe there is one “but”: the inspirational weight loss stories end up serving the same function as the women’s fashion magazines I once read religiously and stopped doing so years ago. They promote this idea that I’ll be happier if only I look different. If only I transform myself through hard work and plastic surgery. Instagram has even made me start to wish for plastic surgery on my body, in addition to weight loss.

Some people have sexual fantasies or crushes on celebrities or daydreams about winning the lottery. I don’t have any of those and never really have. In general, I’m too much of a realist and my imagination sucked even when I was a kid.

But the one exception is the fantasy I fall into all too often: that I will become the next weight loss success story. People will be inspired by how much weight I lost. They will ooh and aah over how great I look now, the flip side of which is always the implicit comparison to how bad I looked when I was fat, which they always thought but politely never told me.

It truly wouldn’t matter how much I punished myself with exercise (while telling everyone I loved it, naturally), avoided any foods I remotely like, followed a very strict and regimented lifestyle that’s carefully calculated and monitored to achieve and maintain my results. The results are all that matters — and if I’m one of the majority who regains the weight in a few years, that equals personal failure.

It doesn’t matter that I have MS and do not have the strength and energy to keep it up with consistency. It doesn’t matter that I’ve also had a PCOS diagnosis for more than 20 years, which is another factor that makes weight loss much harder. I’ve seen all the “fitspo” quotes about how excuses just keep you fat and nothing tastes as good as thin feels and if you don’t put in the work you can’t expect the results. I once had a whole board of this kind of toxic mental garbage on Pinterest.

None of those factors mean that I can’t lose weight, maybe even major amounts of it. But they do mean that it would take really dedicated and focused physical and mental efforts to keep that up. Slow and steady is the only sustainable way, in which case the end goal can’t be my motivation anymore, because it would take way too long to see it.

And the reason pursuing an end goal of thinness is not a good idea is because my mindset and motives wouldn’t be right.

I’ve never been happy with my body, even when I weighed 94 pounds. Even then I was obsessed with the size of my stomach, when my best friend and I made the horrible jokes about fat people that I now think are causing my bad karma (except for the fact that I ‘m fat and she’s not.) She was much meaner about people’s specific body imperfections than I have ever was, but a lot of my views about myself come from her.

Even during all the years of reading fashion magazines and writing health articles that are essentially the same kind of one-size-fits-all prescription, I never once wanted to be thinner because I was motivated by self-love. If I’m honest, it was never because I wanted to be healthier, either.

It was always because I hated myself and thought I would only be worthy of love once I lost weight. A lot of weight. To be honest once again, I actually wanted to be significantly underweight, envied for my intense self-control. I loved stories about anorexia when I was a little kid, before puberty, when I was really tiny for my age. Even then, I wanted to be dangerously thin. I just unfortunately couldn’t fight the biological drive to eat.

You can’t shame yourself into doing anything. Nobody builds up things they hate and makes improvements to them.

After all these months of following them, none of these Instagram bloggers have actually inspired me to do better with my diet or exercise. Instead, they just reminded me every day of what I felt I should have been doing but failed to do.

Seeing sweaty gym selfies every day didn’t motivate me to work out. Trying to follow the keto diet last year led to the worst MS relapse I’ve ever had. I was so hopeful that it would help me lose tons of weight like it has for others, but it actually just made me sicker because it was the wrong thing for me.

But they also didn’t stop me from reaching the conclusion on my own that I deserved to eat better. I’ve given up alcohol, soda, and ice cream, none of which has changed my weight–but I do feel better, especially when I also drink more water, eat more vegetables and fewer carbs. I also reached the conclusion that exercise makes me feel better and, as a bonus, may prevent my MS from progressing as quickly.

It was only when I started to think that I would finally have something to help me value myself again–a job outside the home–that I got motivated again to eat well and exercise. And now that motivation to do better has nothing to do with weight loss. If I lose some, great. If I don’t lose any, well, I might be a little bit pissed off because it’s so hard for me to lose weight, but it won’t have any effect on my motivation.

I can’t guarantee that I’ll always be motivated to eat well and take care of myself, even if I have a job. Having struggled with depression off and on my whole life, it could come back at any time. So could another MS-related setback. But no amount of looking at other people’s before & after weight loss photos will get me out of depression when and if it does happen again.

So it’s time to stop following “inspirational” lifestyle bloggers who don’t inspire anything in me except a feeling of self-loathing. I don’t follow makeup bloggers or stores I like because they would just “inspire” me to spend money I don’t really have. That’s just another facet of the same idea that happiness always lies somewhere else, just out of reach, and it could be yours if you tried hard enough. It’s just not true.

Sooner or later, I have to be okay not just with what I have, but also with who I am.

It’s time to start loving myself before trying to change myself. I haven’t quite figured out how to do that yet. But saying goodbye to the fantasy of making an astonishing transformation by becoming significantly underweight is a good first step.

Faces look ugly when you’re alone

We’ve got one big collective problem, and it’s getting worse. It’s called loneliness and isolation. There just happened to be two separate articles about it which popped up in my feed today.

The NPR story shared some fairly shocking statistics about loneliness. Nearly half of people surveyed by Cigna said they feel alone or left out. Just over half said nobody knows them very well. Slightly over half also said they feel like when people are with them, they’re not really with them–suggesting a sense of isolation even within relationships. And two out of five respondents said they lack companionship, feel isolated, and their relationships aren’t meaningful.

The other article, called “The Shut-In Economy” was a really good read about the rise of a mind-boggling number of services people used to do themselves that now make it possible for people to essentially become hermits. From grocery and meal delivery to services that pick up our dirty laundry and later return it back in our drawers, clean and folded, there is virtually nothing we can’t have done for us by someone else. We never have to leave our houses, assuming the income to pay for it, of course.

In many ways, the NPR article ties in very well with the second, particularly because young people are most likely to feel isolated and lonely. They’re also the most likely to use services to do their work for them. Loneliness and isolation can and do affect people of any age and income bracket, but I think the problem is worst in the youngest generation because so many of their connections are digital and they’ve spent most of their lives online.

I thought for a long time that by waiting to get smartphones for my kids, I would prevent that sense of isolation. But of course, that was a do-as-I-say-not-as-I-do situation: I have been isolated myself for most of their childhoods. I desperately craved social interaction but was stuck at home, so I got the interaction through digital communication instead. I was a pretty early adopter of the Internet: I first got online in 1995, where I met friends from all over the world in Usenet and Listserve groups.

Somehow I knew that digital connections were a very poor substitute for real life ones and I wanted to keep my kids away from it as long as possible. But because I myself was already isolated and depressed, I didn’t know how to create those face-to-face interactions for them instead.

A weird thing happens when you isolate yourself and live your life online: the world shrinks. You know you’re vaguely unhappy, but the thought of going out seems daunting. You tell yourself you’re more comfortable at home anyway. You start to think people out there will think you’re too weird and unlikeable, so you just stay home. And then you lose confidence in your social skills, which is self-perpetuating the longer you do it. But the same is not true online; those are the people who get you. Thus perpetuating the cycle.

There are a couple of interesting issues to unpack with all the home delivery services, though. Of course they facilitate that avoidance of the outside world. But many of the people who use them (as mentioned in the article) are young people who have jobs that burn them out and barely give them time to do much more than go home to sleep. Obviously if you only get an hour of free time a day, things like going to the pharmacy or stocking your fridge are going to be challenging. These people can afford to outsource this work, but they do so to free up more time to work, not to spend time with friends.

This brings up the other point, that this is also a class issue. The people who are doing food and package delivery and Instacart and dog-walking services often cannot afford these services themselves. Being able to utilize such services itself reflects a certain level of income and status.

Many of the delivery service workers are people who are otherwise shut out of the traditional economy: moms who need flexible schedules, people who lost a job and never got another one, those who retired but couldn’t afford to stay retired. Which in turn brings me to something in an earlier post that I said I’d discuss: the gig economy.

All of these people are members of the gig economy. As far as I know (though I could be wrong), most of them are contractors rather than permanent employees. They have no benefits, no job security, not even a guaranteed minimum number of hours. Because I’ve been a freelance writer for most of the past 10 years or more, I already knew that the vast majority of contractors work way more than 40 hours a week to earn a full-time income. You never know when a project will abruptly end, which is especially true when working for a startup company that delivers goods and services.

You can’t relax with a life like that. Despite the fact that many such contractors say they enjoy the freedom of scheduling their own days, they also say they can’t take days off without worrying they won’t have enough money to pay the bills. I believe many of these people would rather have one full time job that provides a little bit of flexibility and pays enough to live on.

There’s the other aspect of all these contract and freelance workers who are part of the gig economy: they’re responsible for paying their own taxes, which are higher than they would be if they had the exact same job working as a payroll employee. If you’re making $8-15 an hour driving an Uber or delivering food or doing odd jobs for people on TaskRabbit, are you really going to be able to set aside 30 percent of those earnings to pay the tax man? Chances are that you’re barely getting by as it is, let alone able to save that kind of money for taxes.

And the government always gets their money. You can avoid them for about 5-7 years maximum from what I’ve read, but if you don’t pay them at all, you will eventually go to jail, especially without a steady paycheck for them to garnish. It’s not hard to predict that many of these people working in the gig economy are going to wind up in major debt to the government with no way to pay it off.

You can look at the increased rates of loneliness and isolation along with the rise in the gig economy and easily see the problems that are already beginning to appear in our country’s social fabric. When you’re isolated, you don’t know or trust your neighbors. It’s even easy to see how our president used that growing fear of outsiders to get elected.

But I think there’s a bigger issue at play here that should not be overlooked. Those who are lucky enough to have jobs are often worked half to death. If you want to have a work-life balance, you give up a substantial amount of money. Total dedication to the job first is the only way to really make a lot of money and climb the corporate ladder.

And this issue isn’t getting any better over time. Many stories like this one in The Atlantic say that even though the economy “officially” recovered from the 2008 recession, the workforce is now more unequal, poorer, and sicker than before. If you happen to be lucky enough to be on the fast track for high earnings and career success, there’s a sense of precariousness to it; one wrong move and you might not ever bounce back.

But the secret to their success often involves the ugly E word: exploitation. There’s no way people can give their whole lives to an employer without help, which fortunately they can afford. I truly do think that most people don’t believe they’re exploiting the people they hire; they don’t have time to think about those ramifications. The real exploiters are the companies who take a cut of the earnings of these odd-job workers, while giving nothing in return other than the short-term chance to earn a little cash. The Upworks who take 20 percent of their freelancer’s earnings (who then still have to pay taxes on it as well.)

Still, there’s no way around the fact that when we outsource work to others, they’re usually not getting a fair wage. They’re not getting any of the benefits that are part of a just society, like health insurance, paid sick time, vacation time, retirement plans. Due to the irregular and unstable nature of their work, they’re usually screwing over their futures in advance.

I’m not naive enough to see this as a rich vs poor kind of issue. The workaholic young people devoting all of their lives to their jobs may have things like money and health insurance, but no time to take advantage of either one. Both the wealthy workaholics and the struggling gig-economy workers are isolated, lonely and worried about the future, because what they’re doing is not sustainable in either case. It’s like being on a treadmill that keeps speeding up.

It’s the powers that be, that tiny handful of individuals at the very top, who are making the decisions that squeeze workers at all levels. Obviously the workers with the high-paying jobs have more resources, which can help shield them from future catastrophes if they save and spend carefully. But people in constantly-exhausted survival mode aren’t usually the best planners.

We should all be looking more closely at the fact that the safety net is eroding for everybody. Most of us are actually on the same side, no matter how much certain voices try to pit us against each other.

The fact that we’re becoming lonelier and more isolated is a factor that can combine with the loss of economic security to make our society worse as a whole. But I want to believe that we’ll find a way to collectively fight back.

As for myself, I’m looking to get out of the gig economy as my primary income as soon as I can. In doing so, I will also become less isolated. But I can’t only count on making friends with people at work either, so I’m going to have to make intentional efforts to make real, face-to-face connections with people offline.

In between the moon and you

I tried something different in a job interview today: I went as myself.

Now, you may ask, aren’t you always yourself? Maybe other people are, but not me. I’ve had this awareness over the past year or more that I’ve cut off my real voice and hidden the real me for so long that I’m not 100 percent sure I can even get it back. I’m not even 100 percent sure who the real me is though I’m gradually getting clearer.

Since my previous job search attempts kept getting through multiple interviews and then nothing–if I was even lucky enough to get an interview at all–I was starting to really doubt myself. Maybe I was too old, my experience too irrelevant, maybe I’m too fat. So I said screw it, I’m trying a totally different approach this time.

(And I should just make it clear here that no, this is not leading up to me announcing that I got an offer yet. I’m still in the horrible waiting period.)

Instead of making myself into the candidate I thought employers wanted, with well-rehearsed answers and an uncomfortable outfit and a stiff nervousness, I was doing something different.

I left my nose ring in, which I have never ever done for any other interview, even though I’ve had my nose pierced for about 13 years. I got a different dress than my usual interview dress, which was certainly motivated by superstition, because I was starting to feel like my standard Interview Dress was cursed. I went in there with the attitude that I was a great candidate, but if they didn’t see that then screw ’em.

It ended up being the only time I can ever remember actually having fun at an interview. I actually ended up getting the people I was interviewing with on kind of unrelated tangents about some of our personal interests (particularly the person who would be my peer, with whom I’d have to closely collaborate.)

I made jokes, sometimes at my own expense (definitely not at theirs!) I was open, talkative, not at all nervous. I asked really thoughtful questions about their business and gave answers about my goals that the prospective boss said were really good. Somehow I ended up being there an hour and a half. I didn’t feel self-conscious at all about my age or my weight or any of the things I usually obsess over.

Later in the afternoon, I sent the prospective boss a note thanking him for our meeting. An hour later, he replied saying that he and the other person I interviewed with definitely want to move forward with me in the interview process. About five minutes later, their HR rep asked for my availability to meet next week. And she sent me a personality test to fill out, the thought of which made me nervous because I always “fail” personality tests like at retail jobs.

But when I finished the test and saw my results, I realized it was actually a variant of the Myers-Briggs test, and I found the results super interesting. I came out as ENFJ, when I have usually scored INFJ most of my adult life. (Just case anyone reading doesn’t know, the E stands for extroversion and the I stands for introversion.)

An interesting part of that link about ENFJ, it says there aren’t many stay-at-home parents among this group. That would certainly explain why I’m so unhappy being home. However, some of the other things it said about my “type” were inaccurate, like having high earnings–though I think that’s a flaw with their definition, because some careers they named for my type were low-paying professions like social workers (many of which were careers I considered.)

I’m not a true introvert because being around people energizes me. I’ve taught classes before and I never get nervous before having to give presentations or speak in front of a crowd. But I think that in truth I’m only mildly extroverted; I am also comfortable being alone and often enjoy it.

Still, the takeaway for me is what it said about leadership. I’ve always felt that I had the capacity for leadership, but my previous job roles have not allowed for it. I think it’s interesting because my oldest child (who’s 20) shows similar leadership characteristics at his job and he’s being noticed for it. I’d like to have a role where I can work toward that.

But the shadow side of this is what made me score as INFJ so many times, and that’s depression. Dealing with depression makes me feel unwanted by others, unworthy of being around them, like I have nothing to offer. I’ve been depressed for most of the past 20 years. Although I’ve recently become aware of my role in this and tried to work on it, depression makes me kind of a crappy and self-centered friend. It makes me function as though I’m an introvert, reclusive and shy. I expect rejection so I don’t put myself out there.

But I don’t believe I’m naturally introverted because I don’t like retreating from people when I’m depressed. Even when depressed, I still need to get out of the house and walk around among other people, even if I don’t talk to them. Though I’ve been depressed a lot in recent months, I still look forward to grocery shopping just because it gets me out around people.

When I have hope, that gives me the more confident mindset that brings the extroverted side out of me to play.

This provides several clear answers to things I haven’t previously understood, like why I seemed almost like a different person when I first moved down here.

I wore brighter colors. I paid more attention to my appearance. I naturally lost a little weight effortlessly. I was more optimistic and happy (which is still a relative measure, of course.) I was more talkative at work. I didn’t make close friends there, but I at least had some people who would sit with me on breaks and suggest we hang out after work.

Then after that, my son got in his accident and I quit that job. I never really made a lot of friends at the job after it, probably because my attitude sucked so bad in general and also it was a crappy place to work.

I admit, I’ve wondered more than a few times if that anomaly of being so happy when I first moved here was because I was by myself. I tried to push those thoughts away because that leads to big unpleasant questions.

But then today, just feeling hopeful and positive again made me feel that same warm glow, the same happy feeling I had when I moved down here. I realized my happiness was not because I was alone.

Then I remembered the other time in my life when I was similarly happy, and it was when I had this job at a TV listings company when my firstborn was about 18 months old. I loved that job so much. I made more friends there than I ever have at any other job, one of whom is still a friend I dearly love. (She even drove my kids to and from school my first year back here because I couldn’t find anyone else, even though she has no kids of her own and didn’t even live that close to me.)

I loved that job so much that I didn’t even use all my vacation time because I preferred to be at work. I honestly thought that was gone forever, a lucky experience I had once and never would again.

I felt a glimmer of that old feeling while in the interview today. Not that this will be the job for me and maybe not that I will make friends with my coworkers like I did at that job. But for the first time in like 18 years, I actually feel like that’s possible again. (Maybe the common thread is that my best-job-ever was a creative job and that’s what I’m pursuing now? Perhaps I’m just not cut out for call centers or software companies and those aren’t “my people.”)

Like if I find the right employer and the right coworkers, I could be likable and have friends and love going to work again. And then I can work on being a better friend, make more connections with people, work toward some career achievement someday. I would regain my confidence, which would have a whole spiral of other positive effects.

I’m kind of curious to see who I’ll be and what my life will look like when I find the right place for me. Regardless of whether this particular job is it or not (I’m trying to remain unattached to the outcome because of how devastated I’ll be if I don’t get it, even though my feelings are obvious) I actually have hope, in a way that I haven’t in four years. That feels really good.

At the very least, I learned something super valuable about the importance of being my true self.

But we cannot cling to the old dreams anymore

In the stages of grief, acceptance follows denial. I don’t know if it’s always a linear process, per se, but it wouldn’t surprise me if I leapfrogged over a stage or two given how long I was in denial.

While I can’t say I’ve fully come to the acceptance stage regarding my MS yet, I’m not hiding from it anymore, either. And as I sit and wrestle more with the nature of this chronic illness which will never fully leave me, I’ve noticed just how much society contributes to and reinforces denial. Society doesn’t even slow down for the sick, let alone protect them.

Being sick for long periods of time is simply not allowed in American society. As George W Bush said as president to a mother with three jobs, “you work three jobs? That’s uniquely American, that’s just fantastic.” (I’m paraphrasing slightly, but I looked up the actual quote and it’s pretty close.)

Working three jobs is a “fantastic” thing? I don’t count each of my freelance clients as a separate job in the same way that I would count being at an office or working a cash register. There’s something uniquely draining about having to show up someplace at a specific time, rearrange schedules around each other, and never getting a day off.

There’s a difference between the ordinary human experience of working hard and riding the struggle bus every day without a break. We shouldn’t be collectively applauding the latter but we do. Sometimes it feels like this is the Hunger Games and we’re all volunteering as tribute–not for honor or self-sacrifice, but for the prize of being able to say we suffered the most.

Still, I am reminded of how easy I have it compared to others–sitting at a desk typing is much less physically demanding than carrying food to tables or standing on your feet all day. Even though my disease often significantly slows my thinking speed, at least I can sit down while I work. There are many people even with my disease who have to work on their feet, which I can’t imagine. (Though I’d be fired on my first week on the job as a waitress, since I often can’t hold things steady.)

Yet here I am, still making comparisons to those who have it worse so as to minimize the need to take care of myself. Just because I could write articles from my hospital bed during my last MS relapse that blurred my vision and had cut my typing speed by two-thirds doesn’t mean that I should have. (And the fact that I had to is a major reason I want to have a regular job with paid sick time again…)

And the next time I exchanged email with my sister after my hospitalization (we don’t talk much), she said, “well, at least now you’ll be able to get on meds so this won’t happen again.”

Not “I hope you’re well” or “get some rest.” The implication in saying that now I could get on meds to prevent future relapses puts more faith in those meds than is warranted and makes it seem like illness is avoidable. It also isn’t a far cry from saying it’s my own fault I got sick because I wasn’t taking the meds.

And don’t we all want to think there’s some reason it can’t possibly happen to us? If someone else has a chronic illness, well, surely it must be because of something they did to cause it.

As though multiple sclerosis simply goes away with medication. Even at their supposed peak of effectiveness, the drugs are only alleged to reduce the number of relapses, not eliminate them altogether. There have been no studies that prove that the disease-modifying drugs have prevented anyone’s MS from progressing.

Yet in our society, there’s not much patience for people who aren’t at peak performance, let alone the ones suffering from chronic, incurable conditions. And we expect everyone to be healthy and top-performing, even though our society promotes the exact opposite things that we all need to stay well: clean, healthy food, exercise built into our environments and walkable cities and plenty of rest and vacations.

We reward workaholism. I value and admire workaholism; I still freelanced even while working a job that had me gone from home 60 hours a week. Even though I have this illness that requires a lot of rest, the friends I envy most are the ones with high-powered careers that require long hours and frequent travel. Yet if I were to try to live that type of lifestyle, the toll on my health would be evident in less than a year. Relapse city.

And look at how we, as a society, treat sick people. Since I’ve been coming to terms with my illness–and my fear of losing the ability to walk independently and drive–I’ve started to pay attention to other visibly disabled people. Passers-by tend to have one of two reactions to the disabled: either they pretend they don’t see them (equating them with the sidewalk beggar) or with pity and impatience. I’ve observed more cases than I count of people trying to get into or out of a building at the same time as someone in a wheelchair or with a walker, a situation that almost always brings eyerolls and sighs and impatience.

I’m ashamed to say that at one time, I probably would have had the same reaction. When you’re 100 percent independently mobile, the idea of not being so doesn’t even cross most people’s minds. (And those are just the visible illnesses!)

The challenge as I continually try to accept the existence of my illness and its unpredictable nature is to be grateful for what I can still do at any given time. Right now, I can still walk and drive. But the day may come when I cannot, and I’ll have to focus on what I can still do then. This type of positive thinking doesn’t come naturally to me.

I also have to be patient with others who don’t get it. Like the one friend who told me with alarm that I absolutely must work on improving my balance, because poor balance increases the risk of falling and even dying. Like I don’t know that–but she didn’t understand that poor balance is part of MS. I can do exercises to try to improve it, but I can’t eliminate the symptom. It’s an increased risk I’ll always face.

And in moments like those, I’m reminded that my health means I’m not just like everybody else. This is a really big disease–I’ve seen many websites describe it as a “terrifying” diagnosis–and I’m not doing myself any favors if I pretend I don’t have it.

Look, I didn’t sign up to be the disability advocate, fighting to enlighten and educate those who don’t understand. I didn’t really volunteer to be the crusader against stupidity and ignorance about illness. Yet here I am anyway.

Simply having the illness doesn’t make it easier to be on the receiving end of pity, or clueless assumptions. It’s hard to know how to maintain my dignity and not feel like I’m being treated like a child when others think they know what will fix me (even though they themselves don’t know what it’s like to have this illness.)

But at the same time, I can’t change the fact that this is my reality. I may want to be fiercely independent but it’s often very difficult to be so because of my health. I’m not going to be able to go back to the life I knew when I wasn’t sick. It’s not possible. Because even when my symptoms are somewhat at bay, I have to do the right things to make sure that continues to be true.

I hope the next stage of acceptance will help me get rid of the envy of those who are well and take their wellness for granted. And my envy of those who have access to better resources and healthcare. Because when you have a chronic illness that never goes away, you don’t get the luxury of not thinking about it. I honestly miss that.