A love story

When I first got married, my mom told me she hoped that I would have a lifelong fairytale romance.

At the time, I found that kind of unrealistic. I was 20 and my husband was 21 when we got married. We were best friends above all else with a phenomenal connection and I knew I needed him in my life forever. But I was never the little girl who dreamed of a fairytale wedding, straight out of Disney. In fact, I didn’t dream of my wedding day at all. And when we got married, my husband wasn’t particularly romantic and the way we came to the decision to marry ranks up there among the least romantic marriage proposals of all time.

We both had a lot of growing up to do when we got married. He was wary of marriage, a child of divorce who didn’t really have a positive model of marriage. I came from two parents who had been seemingly happily married for 20 years but didn’t show me much about how their marriage worked.

We also both had gigantic chips on our shoulders about the way we had been raised and life in general. Mine was particularly huge; I was so angry with my parents that it was beyond irrational. It shocks me now to think that I was ever that angry. We moved 1300 miles away from our families right after getting married and I often think that distance from family and the legal piece of paper kept us together in the first few years. We were both fairly selfish and immature; I would say I was more so than him.

For us, it was that deep friendship and easy companionship that kept us together. Fortunately, we waited four years to have our first child because neither of us would have been good parents before that. When we did have kids, he went into hyper-responsibility mode by working a lot because that was the example his stepdad had given him. I was profoundly depressed after the birth of my first child, something that didn’t let up for years, made worse because I was so alone with my husband working so much.

We never were the angry, name-calling, plate-smashing kind of couple, even at our worst. Instead, we were more likely to have only cursory interactions, burying our dissatisfactions deep within ourselves, sometimes sniping at each other under stress.

But in the intervening years, our mutual loyalty to each other grew into a deep love. After he revealed his longtime porn addiction three years ago, he worked on facing his own inner demons. His method for transformation was through his Catholic faith. I didn’t share the faith but learned to be grateful that it helped him so much.

Although the revelation of his hidden addiction explained so much about our marriage up until that point, it was one of the most painful things I ever went through. But it also strengthened us more than anything else. He had always worked hard to provide for our family and we had always been close and we enjoyed spending time together.

But after the total honesty on his part, he also changed and became the kind of fairytale husband I never dared to dream of. He started showing that he deeply valued me and calling me his beautiful bride, which he had never said before. I often briefly wake up to him kissing my forehead when he gets up to get ready for work. He sends occasional random texts saying I’m the best thing that ever happened to him.

He even gave me a cute nickname, his “little bird”, loosely taken from Matthew 6:26, the Bible verse about birds not needing to worry about how they’ll be fed because God will meet their needs. He gave me that nickname because I used to always be so worried and it was a reminder not to worry because everything would be okay. It may sound silly, but in doing so, it helped me work to overcome my anxiety (specifically about money.) Now its a nickname that doesn’t really apply to my anxiety anymore but still makes me feel treasured and cared for.

Once I started working on my issues, I came to love him as affectionately and deeply as he loved me. It’s true what people say: you have to start to love yourself before you can truly love others. He was part of how I learned to love myself, though learning to love myself is an ongoing process.

And I started working on how to be truly respectful of him, something I admit I didn’t always understand. Now I wouldn’t dream of wanting to criticize him or say something sarcastic about him or make a joke at his expense anymore, but unfortunately that wasn’t always the case. I started to really look at how I was treating him, which was less than it could have been.

It’s funny in a way because we had always had a pretty good marriage. We were two very imperfect people who nonetheless saw enough good in each other that we were able to be best friends and constant companions, even in the times when we were each too broken to understand what love really was and how deep it could go.

I don’t know what other people’s marriages are like enough to know if we just finally caught up to where other people start, or if what we have is rare. What I do know is that we both became completely vulnerable to each other as a result of working on ourselves and that transformed a best friendship into a deep, fulfilling, irreplaceable love. I guess in the end, my mom’s wish for me ended up coming true after all.

“It’s like a long book that you never want to end” – Pam Halpert in “The Office” finale, about her romance with her husband Jim

 

Fear and why it can’t win

If the last time I wrote was the side of me that could see all the reasons to be grateful, now I’m feeling the fear creep back in.

My husband got his chemo port put in yesterday, which made everything all seem more real. Now in addition to the other limitations we already had, we can’t even easily hug or snuggle without having to worry about the port. I hope that will change as the port heals.

But between the port and the colostomy and the surgical scars from a month ago, it seems like there’s so much of him that I can’t touch anymore. It’s a hard adjustment for me and I know it’s harder for him.

It didn’t help that I’d had so little sleep before the surgery that I felt sick. It also didn’t help that it was at a different hospital than I’m used to, where a lot of things seemed pretty subpar.

I am trying so hard to stay optimistic and hopeful, both for his behalf and for mine. I’m usually focusing more on the likelihood that the chemo will cure him and the overall percentages than I am on the oncologist’s description of his prognosis as “guarded” or that my husband’s case is the worst that he’s seen in a couple years.

Most days, I’m really good at keeping things positive, keeping it in perspective. I’m a big believer in beating difficult odds. But the port placement was unexpectedly really hard on me.

At one time since the cancer discovery, my husband made some off-handed comment drawing parallels between him and Cammy, my beloved cat that we tried so hard to save. I’m pretty sure that what he meant was that he felt some empathy for what Cammy went through, since it’s likely that Cammy had undiagnosed cancer.

But in my worst and darkest moments, when I’m sobbing in the closet, I draw the same parallels in a different way.

Cammy went from seemingly fine (though looking back, we can now see subtle clues) to very sick, very fast. And he never got better. Once we took him to the emergency vet and he got a feeding tube, it was a rapid decline from there.

He got sick and then he got sicker and every day I felt more helpless, as I started to realize his premature death was inevitable.

This feels like that. I know a lot of it is that I am incredibly deficient on sleep and am working too much and barely staving off an MS relapse, so that makes everything feel worse.

But in moments like these, it feels like I’m on the same speeding rollercoaster to the death of one of my greatest loves. I don’t have much experience with death but what I do have has been pretty traumatic. It’s hard for my mind not to go there.

It’s been exactly a month since we got my husband’s diagnosis. Nothing has been the same since. Even though there were subtle clues, I miss the old “before cancer” days so much. I’m sure he misses them even more than I do, since he’s the one going through it.

But as he pointed out on our 25th anniversary this past week, sometimes it’s hard to tell where he ends and I begin. And I feel like the part that’s him has been cut off from me.

Because I’m worried and not sleeping well, I’m also getting sicker. My balance is declining and I’m walking worse, so now I’m using a cane. That increases my fear about myself. Then I feel ashamed of being sick, because I need to be helping him. I need to not be sick. If I didn’t have MS, I would be able to take over all the things for him and get less sleep and be just fine.

He officially starts his chemo next week. I don’t know what that’s going to be like.

I just need to dry my eyes, brush myself off, and get back on the optimism train. Yesterday was just one really bad day. My husband needs me to be strong for him.

Hopefully, six months from now, he’ll be cancer-free and this will be just a memory of something scary we got through together. But for the moment, it’s hard not to hold my breath.

The strange juxtaposition

I’ve been thinking about something a lot lately that seems really weird and illogical. It’s that right now our lives are actually the best they’ve ever been, and yet my husband was recently diagnosed with stage 3 cancer and I was declared officially permanently disabled at nearly the exact same time.

My belief in any sort of religion isn’t strong enough to give that the credit. It’s just phenomenally weird, in a quite unsettling way, how much good is occurring at the same time that so much bad is also occurring.

I should be in despair. I’ve definitely had moments where I felt that way but they’re always fleeting. Even though I intuitively knew my husband would one day have colon cancer in specific, I really didn’t think it would be now. I didn’t know what it would feel like to hear an oncologist say my husband’s cancer is the worst case he’s seen in a couple of years.

I didn’t know what it would be like to see my powerful husband who can do anything brought to a point where he can’t, in fact, do everything. He’s still pushing himself and helping out a lot and going to work every day, at least until he starts the chemo. Yet he needs a lot more rest than he used to, which is a big change.

But just the fact of his colostomy alone will likely permanently affect his ability to do things he used to, like trying to fix his own car. Now that we got him a better car, he’s covered by warranty for three more years. But I also think that particular type of fixing stuff himself is probably over forever, which I’m sure he won’t mind since he never liked fixing cars.

As for the scary worst-case scenarios, though, my mind just doesn’t go there. I don’t know if that’s denial or if I disciplined my mind to stop expecting catastrophe, but I just don’t think the worst-case scenario will happen any time soon. Yet that doesn’t mean that the fear is ever completely gone, either.

Then there’s my health. The stress of my husband’s diagnosis and nine-day hospital stay brought back my MS symptoms so badly I finally had to get a cane to help me walk.

I realize how much false confidence I had, since I really believed that my vast improvement due to exercise meant I had total control over my health. I really believed I’d start grad school this fall with the intention of working as a full-time therapist. I didn’t think I’d ever feel my MS symptoms again, quite honestly. Yes, that sounds naive to me now as I read it.

Seeing how my brain and body reacted to my husband’s illness and hospitalization made me realize that I can’t actually have any type of significant stress in my life. I’m already doing too much right now as it is. My disease is not actually something I can control very much.

And so, between my husband’s terrifying diagnosis and the reality of my own disease, things should feel scarier than ever. And in many ways, they do.

And yet, there’s also this irrepressible gratitude for everything else in my life that’s just naturally occurring at the same time. There have been times in my life when I genuinely just had a shitty attitude and really had to work to feel gratitude. But this is gratitude I don’t have to cultivate.

There are so many good things in the midst of the bad. For the very first time in our 25-year marriage (as of our anniversary tomorrow), we both have decent, newer, reliable cars.

We are in a house that we like that has enough space for us, even with an office for me to do my writing. Our kids actually all have their own bedrooms, which we weren’t ever able to give them until three years ago. As a result, they really value having their own spaces a lot.

My husband is making more money than he ever has and works for a company of really good people. He got diagnosed with cancer six weeks after starting the job and he’s had nothing but support. A lot of employers wouldn’t have been so understanding, especially with such a new employee.

I was approved for disability far easier than I expected and I didn’t have a long, difficult fight to get it. Of course, that also means that I’m really legitimately sick. But I have that guaranteed income to fall back on. Although it’s not a huge amount, it’s enough to make a significant difference–especially because right now I also have enough freelance work that it’s maxing out my allowable earnings on disability.

My kid who has gender identity issues is finally feeling more comfortable in his skin. He’s paying for therapy out of his own pocket, having thoroughly researched the right therapist for his issues. I can’t tell you how pleased and proud I am that he’s both pursuing therapy on his own and that he’s finally moving toward coming out publicly and changing pronouns and all that. I’m grateful that he was born into our family since my husband and I and our other kids all just accept him as he is.

My middle son is about to graduate high school in a couple weeks. Because his older sibling didn’t graduate and instead got a GED, this is the first time I’ll get to witness one of my kids graduate. He’s not going to college yet because he’s sick of school and said that would just be a waste of money, but he has a good alternate plan and I’m not worried about him.

He will also finally get the payout soon from his lawsuit against the driver who hit him five years ago. It’s not a huge windfall, but it’s enough that he can get himself a used car and start a pretty substantial nest egg.

My youngest is trying hard for a National Merit Scholarship to get his college fully paid for, because he knows where he wants to go and what he wants to study. It’s a lucrative field but he still wants to avoid college debt. He’s just got great plans for his future and is super motivated. He wants to get a job this summer and already start saving for retirement.

My kids are adults or nearing adulthood and I can see that I managed to raise bright, capable young people. They have a better understanding of how to handle money than I did because I never hid my mistakes or the results (at an age-appropriate level and with some secrets, of course.)

They understand when it’s time to pitch in and help the family, like now. I don’t have to nag about chores anymore. They now manage their own laundry and volunteer to wash the dishes. I can’t say I did everything right–I know I didn’t–but somehow I have these competent, compassionate, well-informed young adults and I’m just in awe of that.

I repaired my relationship with my parents. It may never be exactly what I want it to be and I can’t live in the same town again. But I value their company and recognize the good traits they gave me. I’m so grateful I got to go back for a visit last fall because my husband’s cancer would definitely mean I couldn’t go this year.

For the first time in a long time, we can stay current on our bills and get a little extra and have money for some little conveniences here and there. When it comes to money, we can finally breathe, which is largely because I got disability and am doing freelance work on the side.

I have hope.

Even in spite of my husband’s cancer. Even in spite of how bad my mobility is getting and how much I hurt.

I could spout all the Instagram-worthy quotes about how suffering is a choice and you’d probably roll your eyes. Yet it’s also true. This is simultaneously both the best time of my life and the worst time of my life.

But the point is that I really feel alive. Like this is the point of life itself: to be in the midst of great suffering and fear, yet to also be profoundly grateful at the same time.