Have mercy

Right now I feel like I’m very much at the mercy of both the medical community and fate itself.

My husband starts his new three-year regimen of chemo tomorrow and I am full of worries. Since this is a pill form of the same drug he took before in IV form, I don’t know if he’ll respond the same way. He responded pretty well to the IV form, all things considered. The pill form is supposed to be easier to tolerate, but I also know that it has some different side effects. And the damage and risk to your body increases the longer you take it…and so does the possibility that the drug will stop working because you become resistant to it.

But I’m worrying about a million little what-ifs. What if he’s one of the ones with a fatal reaction to the drug?

What if I’ll be rushing him to the emergency room in the next few days for a heart attack (a not-uncommon side effect)?

What if the fact that the doctor hasn’t ordered anti-nausea meds yet means that he won’t and my husband will be incredibly sick (and then may possibly have to be hospitalized for that?)

What if the fact that we can’t afford our $4,500 copay (not a typo) for tomorrow’s treatment means that he can’t get the treatment at all?

What if the fact that he’s currently in a state of no evidence of disease means he could go on and be well for a while, rather than going through three years of chemo? Why can’t he spare his body from becoming resistant to this chemo now and just wait for the likely inevitable recurrence and treat that when it comes back?

Even if the doctor says there’s a 70-80 percent chance of recurrence, he didn’t say when because nobody can predict that. My husband could be well for the next couple years without the continuous chemo.

What if he’s not able to work anymore and we can’t afford to keep living where we are and have to move while he’s weaker and so am I?

What if he won’t make it through these three years at all–there’s no guarantee that he will–and this marks the beginning of a miserable end?

What if what if what if. I can what-if myself into paralysis and nearly have. But I’ve noticed that this is a state I’ve frequently been in regarding my MS as well. If everything seems fine and normal now, why does either of us have to use these risky sledgehammer drugs to prevent some future worsening that we don’t even know for sure is coming? Denial may be naive but at least it’s more comforting.

Financial worries also abound. We’re already starting to pay on our back taxes from my freelancing and we’re having to help our daughter cover her car insurance, so I don’t know how we’re supposed to come up with an extra $9,000 for our annual out-of-pocket maximum healthcare expenses. My income got cut a little as it is. Then if he ends up starting that new job (which is up in the air but still in play), we’ll have to start over with all new copays again.

My worries about MS are in the back of my mind, too, though MS seems so trivial compared to cancer. Like it’s worrying about a hangnail in comparison. I tentatively decided maybe I will go on a stronger MS med if my current one doesn’t work out. (You’re not mistaken if this seems like a course reversal; it is and it’s largely motivated by my fear of the unknown.)

But then I read bloggers who went for the most aggressive treatments and still progressed to needing a wheelchair, some even to death, by their mid 50s. The uncertainties make me more afraid.

Things have been so normal and so good in the past two months since he’s been off chemo. It almost feels like our old life again. In many ways, it’s been better than our old normal because we have that whole sense of “life is precious” urgency.

I don’t like that it has to change, that I have to step out of comfy denial land back into the world of the fearsome unknown where I have to be strong and brave. I just want to stay in this calm, normal zone for a little bit longer. I’m not ready for whatever’s next.

Silence doesn’t equal unhappiness

Quite the opposite, actually.

I know I haven’t been writing here as much lately, but it’s not a sign that anything is bad. Things have actually been pretty good overall.

My husband and I have been getting along well, though that’s not unusual. He goes for his last chemo treatment tomorrow, which will surely make for a tough weekend. But it’s kind of a big milestone that he’s finally reaching the end of chemo!

Of course, that doesn’t mean it will be his last round of chemo ever. A lot will depend on the results of his next scan, which I’m already nervous about. They might say he’s completely free of the disease. In the cancer community, that’s NED–no evidence of disease. They don’t say remission anymore.

With stage IV cancer, I understand that it can never be assumed to be completely gone. We should expect a recurrence at some point. But I’ve heard of other people who have made it 10+ years at stage IV.

I’m feeling less like it’s an impending death sentence than I did at first. A lot of that can be credited to finding a really good online community for colon cancer. They have a group specifically for spouses of people with stage IV and it has been so helpful and welcoming so far.

This is exactly the kind of support I needed. Rather than being depressing (like you think such a group would be) it’s actually hopeful. They have a group motto: keep fucking going or KFG. That reflects the sense that you don’t live waiting for death. This is likely to be a chronic condition in which you may or may not ever reach NED status, but you just KFG until you reach the end.

That takes a lot of the fear out of it. Between that, therapy, and some medication adjustment, I’m really holding my shit together pretty well.

My youngest’s 17th birthday is this Friday. My oldest’s 22nd birthday is next Wednesday, which she’s spending with her boyfriend. This is always a very busy time of year for me.

But still, I’m left with a sense of peace about everything. We’re going to see one of my favorite bands next Wednesday, when it will be far enough out from chemo that my husband should be feeling pretty well. I’m excited about that show–though a little nervous because it will be my first large arena show since I saw The Cure in 1992. I’m used to seeing lesser-known artists in small, intimate venues.

I’ve got money already set aside for Christmas gifts. My husband’s employer is having their Christmas party at one of the fanciest restaurants in Fort Worth and I’m looking forward to that as well. Even if my husband needs more cancer treatment, he’ll have the month of December off. That will be really nice.

Everything is just really good, which makes it harder to write. But I’d definitely rather have the good times for a while. After the way this year has been, normalcy is very welcome.

Spiraling

I haven’t known what to write here as often lately. In truth, I’m kinda spiraling, having trouble keeping my thoughts from running away from me.

I’ve done a lot of supremely unhelpful things related to what I’ll do once my husband dies. Given the fact that I don’t even know when that will be, it seems premature to be worrying about it now. But it’s all I can think about anymore.

I’ve looked up the cost of one-bedroom apartments vs. the cost of renting another house. Given that, again, I have no idea when it will be, I don’t know if any of the kids will still be living at home. I also have no idea what the housing market will be like at that unknown future date. I don’t even know if I want to stay in this area and have started researching other places.

I’ve realized that without my husband to help, I’ll definitely have to hire movers. And with my MS being what it is, I’ll probably have to hire a professional to come in and do a deep-clean before I move out.

This is all incredibly premature and completely pointless. I don’t want to have to figure out how to live without him so focusing on the things I can control makes the things I can’t control feel a little less overwhelming.

I don’t know what is the point of thinking about logistics now, when I don’t even have a date yet. I am still deeply hoping that he’ll be like the person he recently ran into, who also had the same type of cancer with more metastases and was treated at the same place and just celebrated I think the second year free of cancer.

That’s the outcome I want. His goals are to make it to our youngest’s high school graduation, then his fiftieth birthday, then our 30-year anniversary. The latter is nearly five years out. If he makes it that long or even longer, that gives me a lot of time to save more money and prepare myself. I’ve recently read stories of people with the same type and stage of cancer who lived for more than 10 years after diagnosis.

Not that I will ever be able to prepare myself. But this is a horrible way to live, in this perpetual state of feeling like there’s an axe hanging over my head. I have to snap out of it because I don’t want this to be what I remember of our time together.

I was really hoping therapy would help me with these fears and so far my first therapist was a bad fit. I see the new one in a little over a week and I really hope she’ll be more compassionate and helpful. My other therapist seemed to (probably unintentionally) make my fears worse by focusing solely on finances. What I really need help with is managing my fears so that I don’t ruin today.

I realize that there’s a greater lesson to learn from this whole spouse-with-stage IV-cancer experience, and that’s that I need to let go of fearfulness and control and live in the moment. I’ve always struggled with that but even more so now. It’s like the universe decided I needed the master class in learning how to be grounded in the present moment. A lot of times, I really don’t think I’m ready for the lesson.

Ultimately what it comes down to is that I have to continue learning how to put myself and my own needs aside to be of greater service in general and specifically of service to my husband. It’s a very valuable lesson and one I needed to learn. I just hope I’ll be able to get out of my own way and rise to the occasion.

The courage to reach out

Cancer is lonely. That’s from my perspective as a spouse. I would assume that it’s even worse for the one who actually has cancer.

I spend a lot of time thinking; how can I not, especially since I work from home? I’m spending the summer driving the kids around a lot too which gives me a lot of time to think. But it doesn’t give me time to seek out real-life support groups.

Then I remembered my friend who just got married within the past year to a wonderful man, after having been in a bad marriage for years. Her new husband was diagnosed with cancer as well, a couple weeks after my husband was. We both sent each other messages saying we’re there if the other wants to talk. But like most things go, people get busy and those kinds of things go on the back burner.

So I finally reached out to her yesterday and she seemed so happy to have someone to talk to about it. She said that most people try to empathize but don’t really understand. And that’s true: it’s the kind of thing you really can’t understand until you go through it. I think I have created a two-person support group with my friend. I have another longtime friend who checks in on me a couple times a week, which touches me. But having someone who knows exactly what you’re experiencing is invaluable.

Cancer is like the club that nobody wants to join. All of a sudden, you’re plunged into this new world with chemo treatments and staging and oncologists and fears about catching a virus that will put the person you love most in the hospital. You second-guess what you eat for dinner and you change routines on a moment’s notice depending on what’s happening. You never know when you’ll have to shuffle your life around.

You think about death much differently when you’re in this cancer club. Suddenly something you thought would be for sure 40 years in the future is now something you can’t take for granted.

It’s terrifying in a way that nothing else is. But at the same time, it zeroes in your focus on the ones you love the most. Nothing else really matters. You still have to do all the usual day-to-day stuff and you try to keep life as normal as possible. Sometimes you even get breaks that feel normal, like we did this weekend.

But it also makes you look at life in a whole new way, and at your partner with fresh eyes. Suddenly they seem more precious than they did before and you really truly grasp how much of a gift it is to have them for another day. When you no longer assume you have all the time in the world, it makes you truly value what you have every day.

Resolutions of two varieties

So the positive resolution is that finally, almost six years after my son got hit by a car, our lawsuits against the insurance companies have been settled without going to trial.

I’m glad it didn’t go to trial because I definitely don’t feel strong enough right now to relive that chapter of my life. The deposition (by now a couple years ago) was hard enough, reliving the details of the accident. I definitely have some PTSD from that.

Since my son and husband are co-plaintiffs now that my son is a legal adult, they’ll be allocating the money between them somehow, my son obviously getting the majority. We didn’t get as much as we hoped for but our share will likely be enough to pay off the balance on my car and pay off some small debts. My son will get a pretty good chunk of change, especially for an 18-year-old, but fortunately the only thing he wants to spend it on is a used car and wants to save the rest.

My youngest should get enough to pay for an inexpensive used car as well as compensation for witnessing the accident. So that long and painful chapter of our lives will soon be coming to an end.

Just in time for other battle: my husband’s cancer. For the second week in a row, his chemo treatment was canceled because his white blood cell count was too low. It actually dropped from last week. I guess that’s a testament to just how powerful the chemo was.

But even though I really don’t want to be brave–in fact, it’s the hardest thing I’ve ever done, even harder than when I moved down here alone–I have to make a resolution to be optimistic. I can’t be around any negativity at all.

It’s time to find that fighter spirit in me, the same one that healed my dermoid ovarian cyst weeks before surgery, using only visualization and chakra healing. That was almost 20 years ago and I haven’t used it again, but it’s time I find that reserve of strength that I know is still within me.

I’ve done a lot of things in my life that required great strength. From coming down here alone for almost four months to make a way for my husband and kids to pursuing big publications to getting through undergrad with honors with virtually no child care and three little children, I can be tough when I need to be.

My anxiety is coming back and it’s taking more effort to beat it. Every time my husband’s chemo gets canceled, it fills me with more fears. I’ve even started obsessing more about my own health and my future. I am torn between living in the moment, not borrowing trouble thinking about the what-ifs about the future, and planning how I’ll survive as a widow. It’s a terrifying rollercoaster ride to be on.

My best friend can’t leave me yet. If he does, I’ll cope somehow, but I just can’t let myself think about it in advance. I truly believe that it will all work out how it’s supposed to, whether or not that’s for the good. But the next few years are going to be a fight.

So it’s time to make and keep a resolution to be strong. To call on the strength that has gotten me through other times almost as challenging as this one. I’ve never really tried to cure my MS using my strength of mind, figuring it was my cross to bear. Yet maybe I can.

But for my husband and my desperate wish for his survival, I will summon that strength and be the best fighter and advocate for him that I can be.

The limits of positive thinking

I was discussing the book Bright-sided: How Positive Thinking is Undermining America in the comments and thought it deserved a full exploration in itself.

If you’re naturally prone to pessimism and depression like I am, the concept of positive thinking has some merit. I’ve learned that I can stop low moods from blowing up into days-long depressions by stopping my train of thought before it derails. It’s a concept I’ve written about a bit that I call “catastrophizing,” taking one bad thought or worry and running away with it.

I can often choose to stop that process and avoid a lot of the depressions and anxiety attacks I used to experience. In that sense, the reminder that we can control our thoughts has some validity. Certainly, if you also focus on having gratitude for the good things in your life, you can train your brain to notice more of them.

But there’s also the concept of “toxic positivity,” which Barbara Ehrenreich wrote about in the above book about her experience with breast cancer. This toxic positivity is also super big among a lot of evangelical types like Joel Osteen, who preaches that you’ll be blessed with wealth as long as you give generously to church. This prosperity gospel has no basis in either the Gospel of Jesus or the laws of reality.

There are a lot of people who say “good vibes only” or people who are big into the Law of Attraction (another type of woo) who discourage negative thoughts. But the effect of those kinds of statements makes you feel like your thoughts are illegitimate, which encourages repression and isn’t healthy.

Mental illness is one thing and there’s only a certain amount of control you can have over those processes.

Then there are things like your spouse having cancer, which just isn’t the kind of situation you can positive-vibe your way out of.

The Law of Attraction suggests that you have control over everything that happens to you. While it’s true that your thoughts are powerful, they’re not that powerful. The Law of Attraction says that all deaths are a form of suicide, for example, which is just ludicrous.

Louise Hay, one of the main promoters of the Law of Attraction as it relates to health, believed that cancer was caused by “deep hurt, longstanding resentments, carrying hatreds, deep secrets eating away at the self.” Ultimately, this is no different than saying that cancer can be cured by apricot kernels or a macrobiotic diet. It’s victim-blaming, saying that the randomness of cancer is one’s own fault.

I had a discussion with my husband last night about religious perspectives about death. As a Catholic, he believes that you can offer up your sufferings to unite with Jesus’ on the cross. Your suffering can be redemptive for others as well. Those were some of the aspects of Catholicism that I always found hardest to understand: both the concept of substitutionary atonement at all and how you could “offer up” your own suffering to lessen that of others. Suffering isn’t a transaction.

My beliefs have always leaned more toward the Buddhist. I tend to believe that life is truly random, suffering is an inevitable part of life, and that when we die, we are ultimately at peace. I believe we are made of energy and that when we die, that energy returns to the universe.

But yet when I lost my favorite cat at a tragically young age due to illness, I was absolutely devastated. I didn’t know how to place it into perspective so my grieving process was messy. Having had no experience in how to handle death in a healthy way, I just let myself feel all those horribly painful emotions, which I think was the most natural thing for me to do.

I had him cremated and made what my oldest called a shrine, with the cat’s urn of ashes and a shadow box with his picture and paw print and lock of fur. I placed it where I could see it from my office, where I spend the most time.

Then one day some months later, I felt comfortable moving his urn and the shadow box into a less prominent place in my office. I realized I had processed enough of the grief that I could think about my beloved cat without crying. I no longer feel as much like I was robbed of time with him, but grateful to have had the joy he brought to me for so long.

And I realized that’s the answer to how to deal with death according to my own spiritual beliefs. You can’t run away from the pain, even though it’s intense and it feels at times like it will overwhelm you. You have to cry and let yourself feel sad until the day when it hurts a little less. You’ll come through it on the other side changed.

We’re mired in this culture of “good vibes only” and #blessed and we collectively run away from any unpleasant emotions. Even little kids are taught to stop crying when they get hurt, told that whatever happened to them wasn’t that bad. It’s like we’re so uncomfortable even seeing unpleasant emotions in others that we teach kids that it’s not okay to feel them, either. Our culture teaches that we should run away from pain, that it’s undignified to show it.

That’s yet another way in which I differed from my own parents in how I brought up my kids. Whereas my dad would scowl and make some negative comment about my little nephew crying when he got hurt in T-ball, I always tried to validate what my kids were feeling. I didn’t bribe them with a treat to make them feel better, nor did I overdo a dramatic reaction. I tried to react to them getting hurt as a part of life that was okay to cry over, but that they could get through it, too.

I realized that I had been trying to squash my feelings about my husband’s cancer so that I could be more positive for him. I do believe that a positive mindset does help in recovery and I don’t want to be a source of negativity. But suppressing my scary feelings when they come up only makes them seem bigger and scarier.

We should let ourselves feel what we feel. Yes, we can sometimes stop ourselves from overdramatizing our bad feelings and avoid further unnecessary suffering. But repressing bad feelings and trying to convince ourselves that everything feels great when it doesn’t is really just lying to ourselves.

It extends beyond the individual, too. Not only are we collectively encouraged to deny the bad things going on in our own lives, we also look away from the suffering of others, like the atrocities at the border. There’s no amount of positive thinking that will get children out of cages, no amount of Law of Attraction that says they had control over being there. Our entire American culture is based on looking away from that which makes us uncomfortable. That’s why a lot of your friends go quiet when you’re grieving.

Sometimes life is just random and sometimes it really doesn’t feel good. Toxic positivity is just another form of telling people to pull themselves up by their bootstraps, without seeing if they even have bootstraps. The more we try to “look on the bright side” of things, the more we invalidate real suffering–both our own and others’.

 

 

 

The magical thinking associated with illness

The hardest thing about having multiple sclerosis and my husband having colon cancer is sometimes not actually what we’re experiencing, but that everyone else has this magical thinking about serious illness. And of course, they want to share their magical thinking with you.

I found this article that offered a lot of insight into how the randomness associated with cancer makes people feel a loss of control. In response to that loss of control, they turn to things they can control, namely diet. So you get a lot of advice from people who insist that the way to beat cancer (or MS, for that matter) is through diet. Note that these usually aren’t people who actually have cancer themselves, they’re just afraid of it.

It’s true that some dietary changes are scientifically proven to be associated with better outcomes for colon cancer in particular, like regular consumption of tree nuts and lower insulin levels.

But overall, cancer is still ultimately random in who it affects, who recovers from it, and who dies from it. That’s absolutely terrifying to realize that you don’t have control over something that is affecting you so profoundly.

Multiple sclerosis is much the same. On the one hand, it can rarely kill you (but secondary infections due to treatment itself can), but on the other hand, it also has no cure. There’s some anecdotal evidence that diet can affect it but there’s no scientific agreement about it.

I’m admittedly bitter about dietary changes being presented as a cure-all because I place a lot of blame on that for my husband’s cancer going undetected for so long. Part of that delay was a combination of stereotypical male avoidance of doctors and expensive health insurance.

But the surgical oncologist who did his surgery said it looked like he had years of undiagnosed ulcerative colitis that turned into cancer. And during all those years when he was suffering, he just kept giving up more and more foods, buying into documentary woo about dietary cures. I blame myself for bringing a lot of that documentary woo into our house, since I wrote for the natural health industry for so long.

He largely gave up drinking milk in his teens and was a vegetarian for many years. He spent the past 10 years or so gluten-free. He pretty infrequently ate processed meat. By all accounts, although he did not have a perfect diet, it was free of most of the things the woo-sayers tell you to give up. And he still got cancer anyway.

The randomness of cancer is scary. In fact, that’s the aspect I still find scariest, since I’m a recovering control freak with anxiety that I’m learning to manage.

I was reading cancer forums in hopes of finding support but instead they freaked me out. I read about one person whose husband died of colon cancer (itself scary to read) who ended up also being diagnosed with it herself, which then made me worry about myself as well. Just because I have MS doesn’t mean I won’t get cancer, too.

But MS is also random. Will I be one of the people who loses some mobility but otherwise lives an okay life? Will I someday find some gainful employment I can do? Or will I be one of the ones who ends up in a nursing home in my fifties?

People are just as bad about telling people with MS that diet is the cure as they are to people with cancer. Yet in one of the groups I follow for people with MS, a woman just yesterday said that she followed a vegan, sugar-free, gluten-free diet for years and her MS still got worse anyway.

The randomness of illness sucks. There’s no other way to put it. You can and should do things to try to be healthy. Healthy habits never hurt. But there’s no guarantee that they’ll prevent anything from getting worse. That’s how randomness works.

I’m really, really tired of woo peddlers saying that an alkaline diet or apricot seeds will cure cancer or a low-fat diet will cure MS (or alternately, a low-carb, high-fat diet…not like low-fat and high-fat are complete opposites or anything.)

The hardest part of being sick is how little control you have over it. But when people insist that you do have control over it if you just do the right things, that skirts the line awfully close to blaming people for being sick.

Challenge and growth

It was 10 years ago today that I got to go see my grandmother’s grave, several months after she died.

That’s a good example of one of the things I found it so hard to forgive my parents for: they kept her death a secret from me for months after it happened. It wasn’t because I was far away, either. In fact, one of the reasons I initially moved back home was because I wanted to be there when my grandparents died. And in the end, it didn’t even matter that I was there.

That secrecy on the part of my parents extended to so many big things, like the fact that my dad had been married before and had a baby that died. Everyone else in the extended family knew all along, of course, but they were all in on the plan to keep it a secret from me and my sister at my parents’ request.

That informed a huge part of my own parenting decisions, much to my parents’ disapproval. I was not going to lie (even by omission) to my kids, especially about big things. I broke it only once, when I promised my oldest that we’d stay in Michigan until he graduated, but moved back here when he was 16. I get why he was so mad at me, even if we both now agree it was a necessary move. But lying to kids about things like death is really damaging and it’s really hard to forgive.

So needless to say, my relationship with death hasn’t been one in which I learned to cope with it well. My parents’ general M.O. seemed to be that if something was too painful, you just wouldn’t discuss it, therefore not deal with it, either.

The frustrating part is that on the other side of the work I’ve done on myself, I can see that they weren’t doing that to intentionally hurt me. They likely hadn’t dealt with the painful things themselves and probably thought they were protecting me. They encouraged me to take the same approach with my kids, but of course I didn’t because I didn’t agree with it.

I overreacted to my aunt’s death from melanoma, sobbing at her funeral far disproportionately to my relationship with her, which had never been close and was always kind of cold. I just didn’t know how to process death.

Even the gang-violence deaths of the patrons at the inner-city library where I worked seemed to deeply affect me, even though they weren’t people I knew well.

And of course, I completely lost my shit when my favorite cat died way too young a little over a year ago. That was my first experience with the death of someone I deeply loved. It took me months to stop crying whenever I thought about him and about how traumatic it was to watch him die.

So now I’m faced with the biggest and scariest fear of death yet with my husband’s cancer. I kind of had a meltdown about the fact that he couldn’t get his second round of chemo yesterday because his white blood cell count was too low. It stirred up all those fears of loss, all those feelings of not knowing how to cope with death. For a moment, I fell back into bad habits of assuming the worst.

But then I had some time to think and meditate on it some more. I realized that the more enlightened way to look at this is that you can’t live life expecting death. It’s going to happen; you just don’t know when. That’s true for all of us.

Even though I have intuitively known for a long time that he would have cancer (and even this specific type), it still caught me by surprise. I didn’t think it would happen yet. Ever since my MS diagnosis, I fully expected him to outlive me by decades. I am still in shock, like a punch to the gut, that this might not actually be the case.

But I can’t live every day expecting him to die, even if it’s my greatest fear. Whenever that time comes (hopefully decades from now), I don’t want him to be afraid to go because of me. I think he is more at peace with his cancer than I am, and I need to do something about that. I don’t want my fear to be contagious.

What I need to do is step outside my fear. Face it, and know that I can handle whatever comes. Enjoy every day that I have with him without worrying about how many there will be. How lucky I am that I found him at such a young age and that we’ve already had so many years together.

In that, I can’t help but think of my friend who spent many years in an unhappy marriage, just got remarried to a wonderful guy a couple months ago–and then recently found out he has a less treatable form of cancer than what my husband has.

There are truly no guarantees. I could get in a car accident and my husband could still outlive me. I have to be at peace with today, every day, without worrying about tomorrow. I think everyone has to learn that, but this is a hell of a way to do it. Like the universe pushed me off the deep end of spiritual challenges and expected me to figure it out. Once I do, it’s going to be amazing, but until then, it’s absolutely terrifying.

I read some stuff about psychedelics helping people cope with fear of death. Maybe I’ll try that once none of my kids are minors anymore. But I hope I’ll be dealing with it better by then.

I’ve spent the past few years focused on personal growth and I’ve made a lot of progress so far. I’m already dealing with anxiety so much better and less often than I did before.

But all of that growth was precipitated by some sort of pain. It’s hard to grow without pain. I didn’t want another opportunity to practice growth yet; I wanted a period of relative peace and ease. That’s not how it ended up happening, though. And now is not a time to start running away from fear.

I can’t worry about how I’ll survive if my husband passes and I can’t work. That’s the wrong focus. I have to find out what gives my life meaning, in addition to my husband and kids and cats. And I have to trust that the universe will take care of me.

I choose to face the pain that my parents did not. Even if it brings me to my knees, I know I can survive it.

Brené Brown and getting through cancer with gratitude

Even though I’m a big fan of Brené Brown and have read several of her books, I hadn’t gotten around to watching her recent Netflix special until last night.

I guess it’s part of that commitment to self-care that I wrote about last time: I did a couple hours of work, then let myself watch something for enjoyment.

She made a lot of great points that I’ll likely use as topics for other posts, but right now I want to focus on one: the concept of “foreboding joy” and how gratitude is the antidote.

Foreboding joy is the concept of being afraid to experience true joy because you fear that something could take it away. I know I have been guilty of this before–and something bad did indeed happen.

I was so excited but also scared about moving back to Texas by myself five years ago with the hopes of bringing my family down here. Someone who was a hater disguised as a friend said I was awful and horrible to pursue being happy and said I didn’t deserve it. (Brené Brown had a lot to say about haters in the special, too, but that’s for another time.)

From that point on, even as I was successful in my efforts to move my family down here, I was terrified that something bad would happen to someone in my family. I actually believed that the laws of the universe would make me pay for my great joy with a tragedy, like some sort of twisted karmic retribution.

And then three months after arriving here, my middle son got hit by a car and broke multiple bones. One of the best events of my life was followed shortly thereafter with one of the worst events of my life.

But somewhere in the years since then, I’ve embraced gratitude more fully as a way of life. From being grateful for the house I live in and being current on my bills to little daily things like forehead kisses from my husband and the way he calls me his “little bird”, I have trained myself to constantly think of things every day to be grateful for.

I think that’s one reason why I don’t let my multiple sclerosis get me down more than it does, even if I’m in pain a lot of the time and that limits my activities. I see a lot of people online who are very bitter about their MS and I can honestly say I don’t relate. I miss having the energy to do more and I really hate that I can’t pursue my grad school dreams, but that’s not the same as being miserable every day about my illness.

I’m grateful that I got disability and can sleep when I need to. Many people with MS are worse off than I am and don’t have that option.

Brené Brown also talks about how truly loving someone means being vulnerable. That opens you up to the fear that you could lose someone you love. Not everybody understands you when you’re expressing vulnerability and some will use it against you. Those aren’t the people you want in your life, but it can take a lot of strength to prioritize yourself enough to let them go .

Because I’m constantly working on both being more vulnerable and on feeling more gratitude, I think that’s why my husband’s cancer diagnosis is something I am handling okay so far. The vulnerability aspect means I’m aware that I could lose him.

But guess what? Whether I am more vulnerable or not doesn’t change the outcome of his cancer. If it’s his time to go (please God, no) I can’t change that by being more scared. And if it’s not his time to go, then being vulnerable and open just makes us closer with the time we do have.

However, because I’m also feeling more gratitude and that’s the antidote to the “foreboding joy” concept, I can honestly say I no longer feel afraid to feel joy. I don’t think bad things are lurking around the corner.

I actually am sure that there are currently unknown bad things lurking around the corner because that’s how life works. But there’s a lot of joy around the corner, too. It’s all about where I place my focus, and I want my focus to be on joy and gratitude and the intimacy that comes from being vulnerable.

In so many ways, I’m so much less afraid in general than I was even five years ago. And yet in that time, some admittedly terrible things have happened–my husband’s cancer diagnosis probably being the worst. Yes, there’s a lot to fear. But there’s also a lot to celebrate even now.

I choose to be grateful and vulnerable even if it means I could experience loss and pain. As Brené Brown says, when you close yourself off to being vulnerable, you also close yourself off to true joy and intimacy. It’s a trade that I make with my eyes wide open.

Balance and self-care

As we come to terms with my husband’s cancer, and to a lesser degree, my disability for my progressive illness, one thing has become painfully clear: my husband and I both suck at self-care. Our entire lifestyle was centered around poor self-care.

We each failed to find balance in our own ways, though we were both prone to overwork. One thing my middle child says often is that he learned from us what not to do, because neither my husband nor I have been really good at just sitting still and taking time for leisure. My son would rather have a low-paying job and more time for himself than pursue a high-pressure career.

On the one hand, his view of our lifestyle as a warning also means he is the least concerned with success out of his siblings. And while he’s really stepped up with helping the household and never missed a day of work when he had a seasonal job last fall, he probably has the weakest work ethic of all our kids. But he’s also the most relaxed.

It’s definitely one of those messages you don’t realize you’re sending until you see the results of it, but it’s now pretty clear to all of us. Working hard is important, absolutely. But failure to seek balance is also not only a bad thing, it might be actually detrimental to your health.

Does that mean I blame overwork and inadequate self-care for my MS or for my husband’s cancer? No, of course not. I’ve had MS symptoms for 18 years (even though I only got diagnosed 6 years ago) and my husband has a long family history of cancer.

At the same time, I think our lack of self-care and balance was so extreme that it was like tossing a match in a very dry forest.

It wasn’t that we had bad habits like smoking (which we did, but gave up years ago) or heavy drinking. No, our issue was the same that many people have: the glorification of being busy.

We’d stay up way too late, not prioritizing sleep. My husband used to frequently say, “I’ll sleep when I’m dead,” which now takes on a much more ominous tone. I’ve known very few people who push themselves quite as hard as he did. It was how he was raised and he took his responsibilities to me and the kids very seriously, so taking care of himself was way down on the priority list.

While my requirement for more sleep than I wanted to get was one of the most obvious symptoms of my MS, I still tried to push beyond it for years. I had bad habits (particularly of not getting enough sleep) that were harming me and I had to give them up. It hasn’t been easy.

I also had been that way for years. Even when I was 16, I had a full-time nanny job in the summer and worked part-time at a restaurant. I didn’t see anything wrong with that and my parents endorsed it, even though I was working 60-70 hours a week.

I still don’t know how I managed to get through even two months of a full-time job last year because I was constantly extremely sleep-deprived. I was still freelancing on the side, too, so I’d come home from work exhausted, take a nap, then write articles.

Right before my husband’s cancer diagnosis, I was still thinking I could be a full-time grad student and part-time freelance writer, despite not having anywhere near that many usable hours in a day anymore. I was still ignoring my limitations and thinking I could push myself harder.

And yet, even now, I still look at the people I know who claim they function great on four hours’ sleep a night with admiration and awe, rarely stopping to think that they might be full of shit. But it’s hard to break that decades-long habit of shortchanging myself.

Look at our culture, at how we are likely to brag about how little sleep we got, how much coffee we’re consuming, how few days we took off, how little we’re taking care of ourselves. It’s almost like a very twisted competition we voluntarily signed up for, in which rest means you lose.

When was the last time you heard a conversation where people were talking about how well they take care of themselves? I know that in my workplace experiences in recent years, people bragged about how little they slept, how much they worked, how much alcohol they drank.

Cancer has made rest a necessary part of our lives now. My husband’s in bed at a good time every night and naps whenever he needs it. I nap whenever I need it, too, though I still often resent needing to do it.

We’re learning to change our default habits. Now it’s about saying that getting enough sleep just isn’t optional anymore. For me, it’s that a very hot summer means I need more sleep to counteract the effects. It’s about saying no to that less healthy but more convenient dinner and opting for something with more vegetables. It’s about saying that sorry, two hours of shopping is our physical limit. It’s about making the kids pitch in with housework a bit more instead of doing it all by ourselves as a default.

Sometimes it’s even about just sitting and reading a book. Not because we’re taking a class or trying to study for some certification, but just because it’s okay to have a little bit of leisure time.

It’s a hard change to make and we’re nowhere near where we need to be yet. But finding some balance is no longer optional. I’m starting to think it might literally be a matter of life or death.