DEAR SUGAR, The Rumpus Advice Column #58: The Light That Just Entered The Room

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Dear Sugar,

A half decade ago, I met a man and fell in love with him and then moved in with him too fast, as people do. Once I moved in with him, I realized our incompatibilities were so vast that I wanted out. He’s older than me and he’s of the opinion that men don’t talk—after the ecstatic intimacy of falling in love, he’s become cold and stonewalling. I’m a ferociously warm person who wants to share everything with my intimate partner. He’s sexually unadventurous and not giving. He doesn’t care about the things I care about.

We were in the middle of a civil break up when somebody broke in to our apartment. The intruder attacked me and I got a spinal cord injury. I’m never getting out of bed again. We’ve been to the Mayo Clinic, we’ve been to specialists who decry the Mayo Clinic, we’ve visited healers even though we’re sworn atheists. The damage done to me is permanent. I need help bathing and eating. I can’t walk. There aren’t any interventions to try—I’m on heavy narcotics and a host of other medications to make being bed-bound bearable. I’m in my 30′s.

My partner and I got married a few months after my injury—a gesture on his part to show me that he was supportive and could be the partner we both wanted him to be. But he has not been a stable pillar of support. He’s helped me with everything imaginable and financially supported me, but he does not love me. He’s complained every inch of the way about being burdened by me, even saying in the first years that he couldn’t see himself living the boring life of a caretaker—we have a paid caretaker in the house several hours a day, who we pay privately—but my husband knows that without him, I’m fucked.

We’ve explored options to separate. I receive federal disability. I don’t have any living family. I’ve gone to live in nursing homes that accept state funding. I gave several a try—for weeks and months at a time. They were horrific. Some negligent, some abusive, some letting me sleep in my own piss. My condition deteriorated every time to the point that my husband pulled me out and declared that he loved me; that he was going to keep his marital promises and take care of me.

This man and I would not be together if I had not gotten the spinal cord injury. We’d have dated for six months and then split as friends. He says this isn’t true; he says he’s glad to have me in his life, even if it happened for a terrible reason. But he also won’t be emotionally intimate with me and I do not feel his love. He bickers with me. He makes me feel small and dependent. If he’s in a terrible mood, he reminds me that I have nowhere to go. He resents his obligations.

I believe in real love, not grudging obligation. We’ve been to therapy and a therapist visits me. She’s advised me not to rock the boat—to realize that the love I need to feel from my husband (the only person I see other than medical professionals) isn’t realistic. That my demands for big, true affection are only making me disappointed. She’s advised that I make myself impervious to him and accept that situation for what it is. There isn’t, I’ve learned, a safety net for my condition. I need the financial support. I need to give up on getting the emotional support. I need to just steel myself to him and not let it hurt me any more.

Sugar, I can’t do that. I know I’m being impractical. I know I’m making myself miserable, but I don’t want to be trapped and appeasing. More than anything, I don’t want my husband to be trapped.

Ideally? I want the big love he says he feels sometimes and that I do feel for him. Yet? For all the putting me in nursing homes and not wanting to take care of me? I hate him. I really believed that my injury had brought us together when we got married. Now I see that it made us cell mates. I have so much anger, and all my feelings seem impotent.

He says he doesn’t want the relationship to end. He doesn’t want me to go into a nursing home. I believe his resistance to getting a divorce is some kind of honor, or commitment for commitment’s sake. He’s said—and it stings my heart like battery acid—”Don’t go. I don’t want to be Newt Gingrich.” And I hate him. I hate my situation. I don’t know how to make sense of any of it. How can my relationship with this man be meaningful? I feel like we have no choice, like my injury holds us captive. Like the best we could ever do is Stockholm syndrome, even if we did recover that love we have for each other. I never thought this would be my life.

Heartbroken and Spinal Cord Broken

Dear Heartbroken and Spinal Cord Broken,

I think your injury is holding you captive, sweet pea. I think something so profound and life-altering happened to you five years ago when you were attacked that you’re still trying to make sense of it. I think you’re angry and you have a right to be angry. I think you’re directing your fury at the only person you can: your husband, a man who has essentially done you right.

Your letter is a litany of contradictions, much to my relief. It tells me there is a space between what’s perceived and what’s possible. You tell me your husband doesn’t love you, then that he says he does. You say you wanted to leave him years ago, then that you feel “big love” for him. You imply your agency in the decision to move to a nursing home, then that it was your husband who cast you out. You write that he has not been a “stable pillar of support,” then describe a man who is.

I don’t blame you for your rage and imprecision, darling. Your life has taken a grievous course. There are layers upon layers upon layers of loss and sorrow that go along with an injury like yours. I am sorry such a terrible thing happened to you. You got the life none of us expects or wants. You feel trapped because you are.

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But you know what? Your husband isn’t. He could have left after your injury and few would have blamed him. In addition to the tremendous burdens of your physical condition, the two of you were in the midst of breaking up, after all. He had an out. He didn’t take it. He married you—a bed-bound woman who requires lifelong financial support and around-the-clock care. People don’t do that as a “gesture.” People don’t stay because they’re afraid of being compared to Newt Gingrich. Your husband may not express his love the way you would like him to, but that does not negate the fact that he so very obviously cares deeply for you. That he feels obligated to you is not evidence that you’re nothing but a huge pain in the ass; it’s proof that he’s willing to honor his commitment to you in spite of the hardships.

Of course you should expect him to love you better, Heartbroken, to express his feelings with kindness and respect. I applaud your insistence that emotional intimacy with your partner is essential to your life and I think you should do all you can to get it. But first I think you need to make a mental shift in the way you think about your marriage, to change the story you tell yourself about your man, if you will.

I’m not suggesting you delude yourself. I have no doubt that your husband has failed to be your ideal partner in a number of ways. But I think it would serve you to let go of some of the assumptions and negative emotions that you’ve been holding onto these past years—emotions that likely helped you survive. In your letter, you write that your husband claims to love you and also that he wishes to continue to live with you and care for you. What would happen if you believed him? What if you released the guilt you feel about “trapping” him into the life you have and you simply accepted it for what it is? What if the jumping off place for the conversations the two of you need to have in order to come to grips with each other wasn’t this isn’t love, it’s only grudging obligation, but rather we are committed to learning how to love each other better, in spite of the profound complexity of our situation? Can you feel the light that just entered the room? Do you see the difference between opposition and collaboration?

It is from a collaborative stance that you must proceed if you are to find a more fulfilling union. You will only have the kind of big love and deep joy that you yearn for with your husband when the two of you become allies, sweet pea. Being allies means you’re on the same side regardless of your differences. It means you’ll ride out the truth even when the truth is hard. Being allies means you make an honest attempt to lovingly accept the other person for who he or she is and receive the same in return.

Are you up to it? Is he?

You’re married to a man you had every intention of leaving five years ago because he was incompatible with your desires. He’s married to a woman who is entirely dependent on him, for even the most basic physical functions. You want emotional intimacy. He doesn’t know what emotional intimacy means. You’re angry. He’s resentful. There it is. Pow. That’s what’s true. There’s probably a bunch of other stuff that’s true too—good stuff. Beautiful stuff. Stuff that allowed the two of you to make it through the most profoundly difficult, dream-destroying life changes imaginable. I hope you’ll dig up some of that too, should you go to the trouble of digging up the hard stuff.

I don’t know if you’ll ever be happy in your marriage, but, as you know, the stakes are so incredibly high that you must give it a serious try. I suggest you talk to your husband and find a new therapist that you can see together (one who doesn’t encourage you to simply make yourself impervious to your husband). I hope, as you work on going deeper as a couple, that you will also consider branching out from each other. That medical professionals are the only people with whom you have any contact aside from your husband is dreadful—for both you and him. We all need a community to thrive. You both need support that doesn’t come from each other.

Obviously, you’re online—you found me—and I assume that you know there’s a whole world of people with spinal cord injuries in cyber space. I hope you’re connecting with others who are struggling with the same things you do each day (if you’re looking for one, there’s a really good blog by a 29 year-old woman named Christina Symanski, who suffered a spinal cord injury five years ago, called  “Life; Paralyzed” ). Online friends will likely be invaluable to you, but I strongly encourage you to do all you can to reconnect with real, live friends too. Surely you had some before you were injured. Might you contact some of them? Having other relationships, and therefore other sources of support, will make it easier for your marriage to work because you won’t need to rely on your husband to meet your every need. It will also make it easier for you if in fact you opt someday to divorce or move into a nursing home.

You are only five years into this new life of yours, Heartbroken. You are paralyzed physically, but your life will remain dynamic, like everyone’s life. That may seem hard to imagine now, but it’s true. Several years ago, I worked as a care attendant for a woman who was a quadriplegic. She’d been injured in a car accident at 13; paralyzed from the tops of her shoulders down. Like you, she needed help doing everything. It was only after I’d dressed her and hoisted her from her bed and onto her electric wheelchair and strapped her in and attached a number of devices to her wrists and hands—which she could flap like wings with the help of her shoulder muscles—that she could do things like push the button that would propel her wheelchair around or get a spoon to her mouth or type on her computer with a little stick she wedged into her wrist brace.

By the time I worked for her, she’d been a quadriplegic for 25 years. She was living alone in a small house she’d bought herself in a rough part of town. I was her weekend attendant—working one long shift straight through from Friday to Sunday. On our days and nights together she told me stories about her life. How she’d lived with her parents in the years right after accident, but by 18 longed to be free; how she’d moved into a nursing home and lived there until she was in her mid-twenties, though the conditions were terrible; how later, she moved into a communal house with a couple of friends who also had spinal cord injuries; and how, a few years after that, she’d worked out a way to live by herself, against great financial and logistical odds, in the house where she lived when I met her.

She wasn’t an upbeat woman. She struggled mightily with the rage and depression brought on by her situation. She never really got used to the lack of privacy or freedom being a quadriplegic entailed. But I’ve never met anyone braver. Her courage literally made me ache. When I put her into her bed at night she was stuck there until someone came and lifted her out. She could only move her head and shrug her shoulders. But when something wasn’t working she changed it, even if it took her years to do it, even if it seemed utterly impossible. She found ways to build a life that felt to her like the happiest version of her life that she could build.

You can build that life too, Heartbroken. We all can. Good luck.

Yours,
Sugar

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