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.

There’s always gonna be another mountain, I’m always gonna wanna make it move

Someone I considered instrumental in mentoring my career as a freelance writer once referred to the other people we compete against as the “Energizer bunnies” we chase, if you remember that old commercial. (I do hope she’ll correct me if I’ve got the details on that wrong, since it’s filtered through my fuzzy memory of about 15 years ago.)

Over the years, I’ve chased a lot of Energizer bunnies, nearly all of whom went on to far surpass me in their writing careers by writing for bigger-name publications than I have. Many succeeded in making themselves a “brand.”

It makes sense that they would have surpassed me since they were more focused and put in more effort than I did, and were not sidetracked by mental and neurological health issues the way I was. I hold no bitterness toward them and cheered their success from afar.

I do also note, however, that many of them are also not full-time writers anymore, either, and I wonder why that seems to be so common. It seems to be a career that has a somewhat limited shelf life. I’m thinking of high-profile bloggers who mainly write personal essays, in particular, and I realize that most move on to something else after 10 years or less.

Maybe that’s because the instability of self-employment gets old, particularly the responsibility for paying one’s own taxes. (The issue of self-employment tax is part of a worrisome trend in many industries–not just writing–and I hope to write about it soon. Teaser: self-employment is sold to us as the ultimate freedom, but is it really, when many such people end up owing thousands of dollars in debt to the government?)

Maybe people grow out of freelancing because, like me, they are perpetually curious sorts who want to pursue lots of different interests in their lifetimes and can’t be confined to one career.

Maybe some new passion just became greater than writing. Or maybe they eventually began to realize that writing as a business is not the same thing as writing as a passion and decided to separate the two so they could rediscover the latter.

Maybe they initially started freelancing as a means to keep busy and earn a little money while staying home with young children, and no longer saw it as being as viable or necessary to be home as the kids got older. At some point, you realize your kids probably don’t need full-time servants anymore and you need to rediscover who you are as an individual.

Maybe using their personal life and relationships as material had negative effects on said relationships. I’ve actually observed several such cases.

All I know is that more than half of the freelancers I’ve known over the years have gone on to do something else. Sometimes they’re still self-employed in other industries. Those who are still writing have at least changed areas of specialization. (I know the primary focus of my paid writing has morphed several times over the years.)

The ones who have no specializations at all generally work more hours for less money and have fewer bylines with their names attached to what they write, which is essentially not much different than assembly-line work.

Despite all this, I still have one Energizer bunny that I chase, and she doesn’t even know me, let alone that I low-key chase her.

But she does share my name. Her first and last name is the exact same as mine, and she’s a year younger than me. She comes up first when you do a Google search for my name. Her name still comes up first when you search my name + writer.

I would like to come up first in the rankings of my name before hers. I mean, 6 of the 10 entries on the first page of Google results when you search my name + writer are still links to my profiles, website, or bios related to work that I’ve done. I continue to write more for new clients and as Google indexes those pages, I’m sure I will move up in the rankings.

But isn’t this also similar to the pursuit of Instagram and YouTube fame, which I so often criticize? I don’t want to be famous; I truly don’t care about that. I’m actually working toward getting a FT job somewhere, where my digital presence will likely matter even less. It’s actually kind of ridiculous to care about whether I’m better known than some Ivy League professor because we’re not even in the same lanes, as they say. I doubt she’s even aware of me, let alone feeling any competition.

My fellow name-bearer can keep pursuing all her professory talents and I may gradually fall off the Google radar altogether. Or I may not; the Internet has a long memory. I don’t think I’ll ever stop writing completely, even if I push freelancing into the background.

But in the meantime, that’s what drives me: to fill up more of the search results associated with my name with links to work I’ve actually done for different paying clients. So far, I’ve made a lot of improvement in that regard. I don’t want to be the most well-known writer. But I would like to be the most well-known writer with my name, and it bugs me that I’m not yet.

I’ll never see myself in the mirror with my eyes closed

An important discovery: I’m only really terrified of premature death when 1) I’m going through an MS relapse or 2) I’m not on the right path with my life. Right now, it happens to be both.

Instead of giving into the fear, I’m better off sitting patiently with myself and trying to determine what exactly I need to change.

Because ultimately, fear is always a symptom for me that I’m doing something wrong–and it’s usually something within my control, if I have the nerve to face it and actually make a change. But change is hard. I know what I need to be doing, but I get stuck in old patterns that reinforce a predictable cascade of other problems.

In the case of my MS relapses, they are almost always triggered by times of great stress. For me, the stress that triggers MS is more often physical than psychological in nature. An example was when I broke my wrist, the recovery from which preceded my initial relapse that led to my first diagnosis.

Or when I was working in downtown Dallas, commuting three hours a day–but even that in itself wasn’t the source of stress; it was when I got a new boss who was very intense and I couldn’t keep up. (So I guess that one may have been part psychological, on top of conditions that were also physically stressful.) During that time I was drinking regularly and I had temporarily taken up smoking again. Perfect recipe for a relapse.

Then last year it was changing to a high-fat, low-carb “keto” diet. I believe that particular diet can work for many people, but I do not believe it is good for MS. I actually think low-carb is good for MS, but not high-fat. I hate low-carb and low-fat diets, but they’re what make me feel healthiest.

And this year’s relapse that I’m in right now is also a combination of physical and psychological stress, due to the aftermath of getting rear-ended (which didn’t cause me much physical injury, but the intense runaround of trying to get the other driver’s insurance company to repair my car was a near-daily nightmare). And I wasn’t eating well or exercising. And then I went to a concert that required me to stand on my feet for a couple hours, which my body can’t normally easily handle anyway. Any one of those factors alone probably would’ve weakened my HP (to borrow a term from my kids’ video games) but adding them all together was like a knockout punch.

But I did not have relapses during times of great emotional stress, like when I moved down here or when my middle son was hit by a car or when our previous rental had termites and we had to wait months to move. At those times, the rest of my life was more in balance. Even Cammy’s death didn’t cause a relapse, though it did cause a period in which I rapidly lost major amounts of hair.

The recipe for relapse is a sign that I have failed to manage my stress, to adequately practice self-care (is it bad that I’m still not totally sure what “self-care” even means?) and protect myself.

Just like if I’m stressed out about money, that’s usually a sign that I need to spend less and save more, I suspect I could minimize a lot of my relapse triggers by paying very careful attention to my health.

And then there’s the fear of premature death, which I’ve realized only strikes me when I feel like my life is completely on the wrong path. Interestingly, I don’t think I’ve ever had that fear of premature death when I was working outside the home.

The way I came to realize that is because I was almost paralyzed with fear about an early death yesterday when I heard about the death of my young former church friend. But today I found out that I have an upcoming job interview and I have a really good feeling about this one, and suddenly that fear went away almost entirely.

Another time when I felt that fear of premature death was after my initial MS diagnosis and I realized I might not ever get out of my small hometown in Michigan that I hated so much. The diagnosis gave my life a sense of urgency that was quite frankly terrifying. It was a wake-up call that if I didn’t make some major changes, I was going to be very unhappy with what I had done with my life.

The same is true now. I slipped back into working at home because I had gotten some better-paying freelance clients and had written some articles I was really proud of. (As a side note, I do find it really fascinating that I wanted so desperately to move back here and most of my work is specifically oriented to this area now.) And besides, the FT job search had gotten discouraging. Maybe those were signs to give up on my dream.

But just as my dream to move back here from Michigan never died–and I’ve never regretted the decision to do so–my dream to work outside the home again hasn’t died, either. Just a few days ago, I was thinking my life just wasn’t going to go the way I wanted and there wasn’t much I could do about it. My doctor wrote me a prescription for an SSRI for my depression and anxiety, which I filled but have been holding off on actually taking.

And today when I got the notice of the scheduled interview (along with some other potentially positive signs about this particular job), suddenly I didn’t feel like I needed the SSRI anymore.

I know what I need and it’s the same thing I’ve known I’ve needed for years: to work outside the home. Working at home is awesome for some people, and there are some people for whom it’s terrible and a recipe for depression. I’m in the latter camp and nothing is ever going to change that. I need an external structure. I thrive on seeing people, even if they’re not my best friends. I am at my worst when I can structure my own days and rarely see anyone.

So I don’t know if I will die prematurely or not. I still have the same risk factors that I did yesterday. But I feel more hope again that I can control them and that seems to make a world of difference.

Tonight thank God it’s them instead of you

I found out today that someone I volunteered with at my old church passed away in his sleep last night. He was a really nice guy, even though I didn’t know him well. The especially sad part: he was young, in his early thirties.

I’ve had a phobia of dying early for years, before I was even diagnosed with MS. (This article says phobia of premature death is a common part of MS, even before diagnosis. However, some studies say premature death actually is about two to three times more likely in people with MS, depending on age group. I’m now in the three times as likely age group–how can you know that fact and not feel like a walking time bomb?)

Way to make someone else’s death all about me. I’m uncomfortable with that degree of my own narcissism. But every time I hear of someone else’s premature sudden death, it seems to remind me of my fear.

And in keeping with the theme of using song lyrics as my blog post titles, I have my husband’s gallows humor to thank for that. I was telling him about my friend’s early death and asked how I could cope with the anxiety that brings up for me. His response: “what’s Bono’s line in “Do They Know It’s Christmas?” That’s one of our long-running inside jokes because I adore that song, but am horrified by the incredibly culturally insensitive lyrics in a way that I wasn’t as a kid.

But I digress. There’s actually nothing funny at all about someone else’s death, premature or otherwise. It’s such an unsettling thought for me that I have to find a way to lighten the situation so I can cope, and I’m grateful my husband is so good at that.

Still, it also brings up something more difficult: the unpredictability of life. If you believe, as my friend did and fellow former church members do, that you’re going to Heaven to be with Jesus when you die, that softens the blow a little bit. You can say “Heaven needed another angel” or “God’s ways are not our ways to understand.” Comfort yourself and each other with platitudes.

But that doesn’t change the fact that a young guy was here two days ago and now he’s not. He never had a chance to find someone to love and marry. He never got to have a child of his own, which he clearly would have been amazing at raising, given his level of devotion to his young niece.

The fact is that life is often just random and cruel. You can try to comfort yourself with the odds based on the life expectancies of your relatives and your known risk factors, but that ultimately doesn’t offer any guarantees.

I’ve known other people who died young of natural causes when they had no bad family histories and no known risk factors. Just like there are people who are killed in random tragic accidents. When your time is up, that’s it.

While I don’t ultimately believe that Jesus or Heaven are real–I have tried really hard to do so, but just can’t convince myself of it–I do believe that we’re all at peace after we die. No one can really concretely prove what happens after we die, but I don’t honestly believe it’s bad. It’s either something magical or it’s just a peaceful nothingness; neither is anything I fear. I would probably rather not have a heads-up when I’m going to die, anyway.

What makes random untimely deaths so tragic is how they affect those left behind and what it says about the nature of life itself. We all want to think we’ll have the standard 75-85 years on Earth. At age 44, I am at a little more than half the average life expectancy. Based on my grandmothers’ life spans, I have at least 40 more years left. Plenty of time left to do what I want, to feel like I made the most of my time here.

But for whatever reason, I have spent most of the past 8-10 years afraid that I’d die early. Then I got diagnosed with MS. Then I found out that I have a common heart condition that also increases my risk of early death by about double. Of course, those are all just statistical averages. I have no reason to assume that I’ll be in the percentage of people who have the bad outcome of the earlier death.

But I also have no reason to assume I won’t be, either. Life is random and ultimately out of our control.

I could try harder to control my known risk factors, but then I think about people like Bob Harper, who was very high-risk for heart disease due to family history, became a famous fitness trainer and did all the “right” things — and still had a nearly-fatal heart attack at 51.

If I could believe in religion, maybe it would make the randomness easier to accept. But that would require completely changing the way my brain works.

So maybe meditation to calm my brain is the only thing to do in the face of these scary reminders of the brevity and randomness of life.

And maybe I should also consider taking daily SSRI medication for my anxiety, even though it’s never really helped me much before.

And I just need to keep moving ahead, trying to accept each day as it comes, working on the things I want to achieve. While I hope I’ll never reach the point where I feel I’ve achieved everything, I do have to focus more on the good things I’ve already accomplished and experienced. Because that part of it is the only aspect I can control.

So raise your glass if you are wrong in all the right ways

When you start to think for yourself again after trying to conform yourself to various Christian doctrines for nearly a decade, it can be a confusing process. It’s similar to smashing a building and then sifting through the rubble to see what still remains.

I told most people at my old evangelical church who asked that my reason for leaving centered around my support for LGBT rights. While there were many reasons, that was definitely at the top of the list. It simply didn’t make sense to me that the LGBT people I knew and loved for years were all doomed and destined for hell, just because of whom they loved. It didn’t even make sense according to my own concept of God, who loved people as they were.

Support for LGBT rights was not acceptable at my church – either the Catholic church or the evangelical one – so I quietly distanced myself from the activism I once held. I never became fully convinced that it was bad to be gay, but over the years, I started to wonder if maybe the church’s view could be more correct than mine. After all, they had their interpretation of the Bible to back them up (even if I thought their interpretation was weak) — all I had were my own personal opinions, which I was told were the wrong ones. At the very least, maybe it was “unnatural” to be gay. But I never felt strongly enough in agreement with the church to change my voting accordingly or to speak out against LGBT rights.

After finally extricating myself from all churches, I returned to my previous degree of full acceptance of LGBT rights. I got a couple shirts with pro-LGBT sentiments, which I wore to express my support of my LGBT loved ones. I thought I was being a great ally. The story I told myself and my former church acquaintances about my departure was that my decision was all about my support for the LGBT people I loved.

But I still felt that there was more to it than that, and I only recently figured out what it was: it’s actually about rejecting what the church would say about the real me.

I am bisexual myself, even though I’ve been married to a man for almost 24 years. Being bisexual was once a very big part of my identity, even though I was and am in a monogamous relationship. My husband knew about that aspect of me before we got married, and many of my closest friends knew as well. It wasn’t anything I ever told my family nor was it the kind of thing I shouted from the rooftops, but it also wasn’t something I thought I should be ashamed of.

It was like any other preference. Like “this is what I like, but it’s not a big deal.” I am equally likely to be sexually attracted to women as to men. But being married, I’m not going to act on any of those attractions, so therefore it’s mostly irrelevant.

But then I came to realize that over the years in church–especially the years I spent in the evangelical church–I had come to view this fact about myself as something sinful and shameful. I tried very hard to block out even noticing when someone else of any gender was attractive.

When you come to view yourself as inherently flawed and sinful, just because of something you desire — even if you never intend to act on it — it’s like putting yourself in a cage. You can’t possibly like yourself if you think there’s one part of you that’s so unacceptable you must never think of it again.

One of two things happens when you try to completely block something out: either you become obsessed with it or you become a self-loathing mess. (Or both.) There have been numerous high-profile cases of famously anti-gay preachers or politicians who get busted having gay sex on the DL: those are the ones who become obsessed with the aspect of themselves they try to block out.

I was the second case. I became so focused on my lack of acceptance of being bisexual that I came to completely hate myself. I grew ashamed of who I was. Considering that I was first attracted to other girls in elementary school, I’m pretty damn certain about who I am. It’s not anything that’s likely to change. And it wasn’t a source of anguish until I started going to church. I internalized those anti-LGBT messages really deeply and aimed them all at myself.

There’s a great deal of freedom in finally letting yourself be who you really are. So I’m attracted to both men and women: so what? But simply choosing to stop pretending otherwise is incredibly liberating and that provided the greatest relief when I left church.

I’m faithful to my husband and intend to stay that way, so I think that should be the only true measure of my morality.  In realizing that the gay rights issue was ultimately my reason for leaving church, the person to whom I was granting unconditional acceptance was actually myself.

I’m your biggest fan, I hope you know I am. But do you think you could somehow slow down?

There’s nothing to convince you that you suck as a parent like having teenagers. And the thing is that my teenagers have been really good kids so far. No drug addiction, no time in juvie, no pregnancies (yet, at least), no runaways. They’re all good kids by every measure.

But I’m not going to lie: it’s hard to lose that absolute admiration they have for you when they’re little. It’s not as easy to make them happy as it was when you could read them a story or make costumes for their favorite stuffed animals.

It was particularly hard for me when it got to the point that I realized I couldn’t share about their lives anymore. When I realized that maybe I shouldn’t have been doing it in the first place.

When I realized that they saw my flaws as clearly as I did.

I’m glad I recorded the cute things my kids said and the interesting perspectives they shared on things when they were little, because now I have a permanent record of it. But the growth of other people’s kids always seems to pass more slowly, in the way that I often think my sister’s kids are much younger than they actually are. And now I find that some people who enjoyed my tales of my kids’ younger years want more of those cute stories and don’t realize that time has already ended. Am I still interesting if I’m not talking about the interesting things my kids do?

There are a lot fewer of those cute stories now, and I don’t have permission to share most of them. My kids have grown into independent people with minds of their own. And I guess it’s hard for me to understand sometimes that they always were independent people with minds of their own. That’s a mistake I regret. They still say interesting and insightful things all the time, possibly even more than they did when they were little. But now it has to stay just between us.

For that reason, it was a very intentional choice not to become a “mommy blogger” when my kids were little. I had a lot of people encouraging me to do so. It was one thing to share their cute stories with my friends on Facebook, something else entirely to put it out there where anyone could find it. It felt like too much pressure put on both me and them to make their lives the material for my work. And I always had enough doubt in what I was doing that I feared making them into subject matter could tragically backfire, in the way it often has for other kids who grew up in the public eye.

I went through a long phase of really doubting myself as a parent, especially after we moved down here. After all, it was all my idea. I believed it would be best for them, but talk about a lot of pressure. And at first, there were a lot of signs that it was not in fact better for them. My middle child got hit by a car just a couple months after moving here and broke several bones. My oldest, well, his story is his own to tell, but let’s just say that his adjustment didn’t go well and he held a lot of resentment against me.

But time heals most things, albeit slowly, especially with teenagers. The most heartbreaking thing was probably when my middle son, always the one closest to me, went through a phase of not wanting to talk to anyone, including me. He came out of it and now we regularly have good conversations. He comes out of his room to hug me and say a personal goodbye when I’m leaving the house, where once he would not have.

My oldest is clearly an adult at 20 years old, with a job and bills of his own. He takes pride in trying to contribute to the household and doesn’t keep score. Sometimes I still see flashes of his old anger at me and it pierces me. But I also see his deep concern for me and desire to help me, particularly when my MS is at its worst.

My youngest is the one who makes me feel like I’m finally getting things right. I talk with him the most openly about personal stuff in his life, some of which occasionally makes me cringe (but I answer it anyway.) Today I took him his uniform for JROTC and I said I wouldn’t embarrass him by asking for a hug in public, so I just reached out for a handshake…and then he pulled me in for a hug anyway.

Some of these positive changes just occurred with time. Some are because I also changed in ways that they needed. I’ve never wanted to be one of those people who believed I didn’t have to change anything because I could do no wrong.

The challenge now for me is not playing the comparison game. I have friends whose kids are getting into prestigious universities, getting scholarships, winning awards for all types of amazing accomplishments. My kids have always been brilliant, testing way above their age level, and that could have theoretically been them making the same achievements.

But I didn’t nurture it. I didn’t know how, both because of my struggles with depression and because I couldn’t overcome the same challenges myself. I regret that and wonder if I failed them.

Yet at the same time, I increasingly try to walk that line of telling them they are capable of doing anything (and I will support them in anything they do, even my youngest’s interest in ROTC, which may or may not ever result in military enlistment, even though I am historically pretty anti-military.) But I also tell them about other paths they can take, realistically what struggles they may face if they skip college, and that I will love them in whatever they choose.

I don’t want to be that parent who tells them that college is the only way to go. I tell them that their college experience can be more successful than mine was if they do things I could not, like take internships and are willing and able to move for jobs. But growing up is hard enough without feeling like your parents have decided your path for you–especially if it’s one you don’t particularly want to pursue.

I truly enjoy my kids for the people they are. I want them to feel validated and supported, while also trying to teach them some life skills that may help them. I want them to pursue independence but not feel pushed into it prematurely.

And for the first time, I’ve finally started to feel like I’m coming out on the other side of the worst of the teen years. I still can’t afford to give them all the material things they deserve. But I hope that in time, they’ll recognize the things I did well and forgive the things I didn’t.

Raising teenagers: it definitely gets harder, but if you’re lucky, then it starts to get easier again. I’m finally feeling like the latter might be true.