What a Difference a Year Makes

November 1, 2011 at 11:15 am (Uncategorized)

A few days ago—when I was mired in the worst of my post-chemo nausea, tiredness, and hopelessness—my husband of 14 years, Jay, came home on his lunch hour to watch an hour of good television with me.

It was the nicest thing he’s done for me in a while.

“She has either very-good-TV or very-lame-marriage material,” you are probably thinking.

Well, it was the season finale of Southland, a compelling, character-driven, gritty cop show (my weakness). But that’s not what made Jay’s gesture so meaningful.

It’s taken us seven years in Chronic Town—four years of chemo, four major surgeries, 10 trips to major medical centers outside our state, dozens of nights in emergency rooms, dozens more nights in hospital wards, and more terrifying moments closer to death than life than either of us would like to count—to learn how to be together in sickness. Did I mention we’ve also had to learn how to parent at the same time? Our son, Andrew, was just three months old when I was diagnosed with sarcoidosis.

For the first several years, Jay was, in many ways, the Platonic ideal of a partner for someone in Chronic Town. He was by my side for nearly every one of those medical trips, hospital stays, and pre-surgery moments. He never complained about my transformation from his mountain-climbing, globe-trotting, self-sufficient, “do it all” wife to the financially-dependent, often bed-ridden, 100-pound heavier version whose doctors wouldn’t make predictions about my future prognosis. He did more than his share of child care, grocery shopping, cooking, and household management. He still works not one but two free-lance jobs to supplement our income and pay for the thousands of dollars of medical bills I routinely rack up every year.

But Jay had his Achilles heel (to over-extend my Greek reference points) in all of this. He is a man. Now let me explain before you think I’m being too harsh in this assessment. I have resisted gender stereotyping for most of my life. I thought Men are From Mars¬, Women are from Venus should have been be pulped, along with the reductive and essentialist thinking behind it. What can I say? I went to U.C. Berkeley. Plus, the book was terribly written. But I digress.

After partnering with a man and co-parenting a child with a man (and watching my son manifest personality traits that are frighteningly similar to his father’s with very little prompting), I have come to the conclusion that the Y chromosome carries with it some unusual qualities. More bizarre than the male-wide delusion that football isn’t merely a game, but some mythological battle of good vs. evil, justice over inequity, and (in a perfect world, at least) the New England Patriots kicking the crap out of the New York Jets, is their belief that they should always be able to fix a problem.

Here’s the mindset: if the car needs its oil changed, you fix it. If the garbage disposal is sputtering or the front door doesn’t have a proper seal, you fix it. If your wife has systemic sarcoidosis and the disease has knocked out the cranial nerve responsible for balance, you…fix…it. Damn it, I can’t fix this.

Unable to magically wave a magic masculine wand (don’t go there, Rebecca; just don’t go there) and resolve my medical problems, Jay withdrew emotionally. Sure, he kept fixing all the fixable things in our life. He practically became a Costco employee he was there grocery shopping so often. He taught Andrew how to ski, paid our bills, made sure I got time to rest. He fixed so many problems at work that they kept giving him more to fix. He kept oiling the gears of domestic life, keeping his mind focused on the task at hand, one foot placed determinedly in front of the other, eyes focused just past the tips of his shoes.

But what about unfixable, messy old me? Where did I belong? Unfortunately, home alone, stuck in bed, while Jay flitted around town taking care of everything that could be taken care of. I was lonely. I was alone. I was sick. I would go—alone—to the doctor and get bad news, and come home to live with it—alone. I was beginning to think my husband was a real jerk.

Last year, we had our big bang—a crisis that blew us out of the petty resentments and habits that bound us in our opposing roles. We had to decide to choose each other again. After 13 years of seeing each other’s flaws and limitations, did we still want to call each other husband and wife? Best friends forever? If we did, we had to find a way to reach each other across the great divide of chronic illness that yawned open between us. For me, this meant relinquishing bitterness and hurt feelings. For Jay, this meant embracing the sick me—the fat woman with an unfixable illness. It meant joining me in Chronic Town, instead of keeping the hedgerows trimmed on the periphery.

The good news is we did choose one another. But a lot of hard work was still ahead.

I will always respect and admire Jay for the ferocity and love with which he faced the problem. You would have thought I’d signed on to play for the Patriots. He showed up to our life every day. He listened to what I needed and wanted. He asked how he could make hard days a little easier and truly heard my answer. “I want to feel less alone on bad days. I just want a friend to hold my hand when I am hurting.”

And so, two days after Rituxan, when I was barfing and wheezing from an allergic reaction to the drug, when I was too sick to take a shower, when turning over in bed was about all I had the energy to do, he skipped his afternoon workout and came home to snuggle beside me and watch Southland—and hold my hand.

It was better than a truckload of flowers, a pantry full of groceries, anything that could have been bought or simply said. He was there with me when I was broken. And he didn’t worry that he couldn’t fix me.

15 Comments

  1. Leanne Shirtliffe said,

    Wow. Now that is a love letter. 2x over.

    I wish I could hold your hand too. Does virtual hand-holding count? 🙂

    • Rebecca Stanfel said,

      Thanks, Leanne. Virtual hand holds definitely counts!

    • Rebecca Stanfel said,

      Thanks, Leanne. Yes! Virtual hand holds definitely count!

  2. Rayna said,

    Beautifully written and truly inspiring, as always.

    • Rebecca Stanfel said,

      Thank you, Rayna. It means a lot to me that you always take the time to read my blog. I really appreciate the positive feedback!

      xo
      rebecca

  3. Barbara Barnes said,

    A bit weepy here… and so glad he can be there WITH you, instead of there FOR you. Such a huge difference between those two ways of caring. So glad you chose yourSelf, and Him, and vice versa. Sigh.

    • Rebecca Stanfel said,

      Hi Barb,
      You helped me make sense of the mess When It All Came Down and are always an inspiration and role model. I’m glad this resonated with you.

      xo
      rebecca

  4. Marianne said,

    I like how Barbara put it – with you and not for you. I think it is so much harder being with someone – especially if you want to fix something and you can’t.

    • Rebecca Stanfel said,

      It does indeed take two to tango. Or two to figure out what love and care look like when you’re 40 and have been together for many years, instead of 23 and head-over-heels.

      I think our culture perpetuates some misleading (or maybe just overly optimistic) portrayals of relationships. In movies or tv shows, it’s all about the work of catching the right partner. But I think the real challenge is staying together, growing up, and growing old together. Maybe it’s not as glamorous.

      So I think a lot of people (myself among them) think that once you’ve found the right guy and figured out all the thorny issues that pop up when you’re planning a wedding, you’re done. Cut. Roll credits and the young couple wanders into the sunset. Lo and behold, the sun comes up the next day…and the next..and you get the picture.

      A wise friend told me that it takes a crisis to truly improve a marriage of many years. Because it’s the crisis (whether that’s an illness or something else) makes the couple work, and through that work, they develop a deeper connection. But most people don’t want to work at love, and so they stay in middling crappiness until a big bang comes along and forces them to either split up or dig down and work.

      I think what Jay and I went through is universal. It’s just that–like in so many of the other issues I write about here–chronic illness brought them on us as little earlier and more forcefully than others. I once called chronic or serious illness the X Games of life. It’s still sports, right? But it’s edgier, more aggressive, and younger than the staid Olympics.

      I really appreciate you reading and commenting.

      Rebecca

  5. Trish Loye Elliott said,

    Oh Rebecca, I have tears in my eyes. This is an amazing post. The growth of your relationship is inspiring, and it makes some issues I have seem so trivial. Thanks for opening my eyes.

    • Rebecca Stanfel said,

      Thank you so much, Trish, for your kind words. I’m glad this entry resonated with you.

      I am sure, though, that whatever is going on with you is NOT trivial. One thing I’ve learned in Chronic Town is that there is no hierarchy of pain. I just try to share what’s going on with me because I have found that chronic illness is a useful lens to explore the stuff we are all going through, whether or not we’re “healthy” or “sick.” Needing to figure out new ways of being in a relationship once the shine of young love has gotten scratched and dulled after many everyday days seems like something all of us old married folks have to contend with.

      Anyhow, I really appreciate you reading my blog and commenting on it. I had such an awesome time hanging out with you and the other wordbitches as SiWC, though I am still in throes of shoe envy for your sparkly silver heels.

      Take care,
      Rebecca

  6. Paul said,

    Rebecca

    Again, for the umpteenth time, you’ve left me needing to say something but not knowing what to say.

    Jay

    Keep up the good work – Keep looking after that very special lady

    Cheers
    Paul

    • Rebecca Stanfel said,

      And you, Paul, for the umpteenth time bring tears to my eyes with just a few words.

      I showed him your message and told him, “Paul said you’d better be nice to me.”

      Isn’t it nice I have such easy access to my 7-year old, inner little sister/brat self?

      Hoping you are happy and healthy.

      xo
      rebecca

  7. kathy said,

    beautiful blog.

    How are you feeling on the rituxan nowadays? Has it changed your quality of life as much as it seemed to have when you went to Scotland? I’m considering this drug for my autoimmune illness. Thank you and keep blogging! I love your insights.

    • Rebecca Stanfel said,

      Thanks, Kathy.

      I believe that Rituxan is what has made the biggest difference towards improving my health. Before I started on Rituxan, I was in and out of the hospital every month or two. I was losing my vision and in constant, chronic pain. I had vertigo so intense, I couldn’t drive, work, walk, or function very well. That said, I don’t know if Rituxan is the right drug for everyone. I had to exhaust a lot of other (lower cost) medicines before I started Rituxan. My very basic understanding is that Rituxan acts on the B-cells involved in immune responses, while anti-TNF agents like Remicade suppress T-cell action. It seems like I do the best on a combination of Rituxan, Remicade, prednisone, and Cellcept. (Suppressing every bit of my over-active immune response, I guess?)

      I’m happy to answer specific questions or just chat with you about my experiences with Rituxan (and a lot of other medicines too!). Send me an email at chronic.town@hotmail.com, and we can take it from there.

      Best wishes for a speedy recovery and finding the right medicine to help this happen,
      Rebecca

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