Q&A: How has your relationship with your spouse or partner changed?

The question of when you stop feeling like a girlfriend and start feeling like a caregiver is, and there was a point where I absolutely know that that happened. I saw that he relied on me probably too much to get the care that he needed. There's a lot of stuff, that I used to, know, that Mike would take care of for me, and I made a point of the things Mike could do, I would happily throw at him. Whether it was fix my earrings or put up stuff he could do, I made sure he was still being able to be of service to me like he used to be. Just so we could feel like there was some symbiotic-ness in what we do for each other.

The intimacy, we don't have the intimacy we had before. Sometimes we even feel like roommates. I mean, it's been 14 years since he was injured, and we've lost a lot, and it takes a lot of effort to keep that intimacy, that marriage going. Well, we try to make sure that we make time for each other, and sometimes you have to schedule it. In any marriage you have to schedule a time for each other, but when all you have is words between you, or if the biggest part is words, you really have to make sure that those words are important, and that you're saying the appropriate things, and making time for that.

Before my accident, I was dating a gal.  And we dated for all in all seven years from the time we started to date till we broke up.  And we were living together before the accident, and then I got in the accident, and we kept living together, and then we got engaged because I never thought I was going to get married.  And then after seeing the way everything worked out, I never wanted to have kids either, so after dealing with paralysis, I realized what I really do want.  So we got engaged, and then things went south, and she ended up taking off.  And, you know what, it worked out better for both of us, I haven’t been happier than I am now.  Worked out for me, and hopefully it worked out for her. 

I think it’s funny.  I think sometimes there was a lot of anger on his part, and I think that he wanted me to choose between Pat and him.  I think that we’re working through that now, and we also communicate on a different level and, perhaps, a better level now.  We’re finding a little more time to spend with each other and it’s enjoyable time.  

I could have not survived; I could not have gotten through the disability, the initial stages, without him. He was a rock, and a tremendous source of support. What unfortunately occurred was we'd had problems prior to my acquiring a spinal cord injury. But about two years after my injury, we decided that it would be best if we separated and got a divorce— which was really the best for both of us— and I think it was also the best for our children, in retrospect. And he has since remarried, we have remained friends. We did it, we did the divorce as simply as we could, and as amicably as we could. The accident was a catalyst, but I think we would have gotten divorced at some point.

My wife and I didn’t have the best relationship anyway. I wouldn’t say it’s her fault, and I wouldn’t say it’s my fault, I would say it is both of our faults. I led a much more shallow existence before my spinal cord injury and I think that we met on that same level. When things got critical in our lives, we weren’t able to come together for one another’s benefit. I won’t blame the spinal cord injury on the demise of our marriage, but our marriage fell apart shortly after that. I think that in part because it was such a struggle, also in part because I was learning so much of the value of loving relationships. And not due to either one of our faults but to both of our faults, I think we weren’t able to find that mutual respect through vulnerability in our relationship. And so it crumbled.

It’s a lot of work, and we already had a relationship where we were a team.  I’ve got three kids; we have to work this through.  And, I would say that’s been reinforced.  It’s a huge task, and to some extent, if there was a system of allocation of—“You do this and I do that, you pick up one child, I’ll pick up that one”—when that came, it became a little more intense.  I don’t think it’s made my relationship better; I don’t think it’s made my relationship worse.  I think it’s become more of a team effort, if that means anything.  

Absolutely not, it’s just grown and gotten better. My husband, before he asked me to marry him, his dad sat him down and said, “I love Jamie, but do you understand what you are getting into? Do you understand that this is different than a normal marriage?” And I so appreciated him doing that because it made my husband go, “okay, yes, I do.” And he does understand. When he said, “I do,” he wasn’t just being a husband, a father, he became a nurse, he became a counselor. He took on a lot of roles and he’s done them very well.

We are so much more close and in love than we were before this happened, which is funny because I didn’t think that was possible. I felt very close and in love with him before, but this injury, even though it’s a tragic and hard thing, has brought us together in a way that nothing else really can. Because of how much you have to be there for each other, and just how much it changes your world in that you have to see each other through it and guide each other through it. It’s just brought it to a whole other level which is really, it is actually really nice.

We’re still friends; it’s definitely not the same relationship that it was before I became injured.  I couldn’t survive without her, but I don’t think she can survive without me either.  So, all things considered, divorce is—a very high percentage of divorce with people who have been spinal-cord injured, from what I’ve researched—and I don’t think we’re going down that road.  So, I would have to say that things are good.  We’re raising kids, we’re a family, she needs me for things, I need her for things, and that’s just the way it is.

I think that we’re just so blessed to have one another, and I don’t think that our emotional relationship has changed much, because we’ve always been there for each other.  But, we probably just give each other a little more respect, and little bit more time to really talk to one another and talk things out.  Our physical relationship hasn’t changed much either, to be quite honest.  There’re days though that I miss some of things we did while he walked, just him standing up and hugging me.  But, you change the way you think, and we’re still able to have that physical and emotional bond.

Once this happened to me, I had to revise everything that I thought was going to do, my plan failed. So, in her eyes it was like I failed also, but she still hung with me because of the way I treated when I was walking, I never treated her badly or anything. I could tell it bothered her, because she lost a lot of weight; she used to be crying at night sometimes. She needed to go outside sometimes just to get some fresh air, I didn't want her to because I needed attention. And after that, we argued a couple of times but I had to figure out, like, I did this to myself, and I can't be on her like that cause she still has her whole life to live. So, we still talk on a daily basis, she tells me everything, I tell her everything.

It's gotten stronger, it's gotten deeper and more meaningful. The only thing we don't have is a sex drive. That in itself—it's kind of like when one door closes, another window opens. Well, when this happened to my wife, I, I almost immediately lost a sex drive. It sounds crazy, but there was no time to think about sex, there was no time to think about myself. I just had a wife who now really needed me more than she ever did. Maybe it's, you know, maybe it's my age, you know I'm 65. I'd like to think that, you know, that we have these normal drives, but it was put into neutral—maybe that's what it is, it was put into neutral.

Really made me, you know, show how much she loved me and really how much I couldn’t live without her. Because she’s like the backbone of the family and you know, very supportive. Our relationship is just, used to—I’d be the provider, to go to work. And then now, you got to look back, and she’s not necessarily the sole provider, but she’s just the one that the family depends on little more than it used to. It’s still, it’s a 50-50 relationship, so we still do everything, you know, cooking, cleaning. I help cook, I do a lot of cooking. I cook outside, I got a smoker, do a lot of outside cooking.

It’s definitely not as intimate as it was.  You know, I know that there’s all these different techniques, and things like that.  I kind of tried them, didn’t like them, and we just kind of mutually agreed, “Let’s not mess with that stuff at this point.”  It’s not as intimate as I’d like it to be, I think as she’d like it to be, so that’s something that, you know, it’s just there.  It certainly has to do a lot with a spinal cord injury.  It’s frustrating, you’re kind of needy when you’re  in bed, or even when you’re in bed with a pressure sore, whatever it might be, you’re needy; someone always has to stay with you if you need something.  And so, that happens often.  When I was hospitalized for like seven months with a wound, she came and visited me all the time, and that takes a lot of time out of her schedule, time away from the kids, that kind of thing.  So, I think that’s something that if I couldn’t wiggle my nose and fix, I would do that, that would be the fix that I would do.  Is a little bit more intimacy and I think if I could have her not ever, ever have to be a caregiver, I think that would be fine.  But, I think she would tell you the same thing, that it’s just not as intimate as it used to be.  

The fear of losing her was put to rest pretty early on, you know, which was a huge a relief for me.  Even though I kind of gave her the out, you know I said, “You didn’t sign on for this.”—I said, “You know, if you think it’s better for you and for our daughter, I understand.”  You know, and she about kicked me from here to next week when I even brought that up.  You know, she says, “I signed on for better or worse”—She said, “We’re going to do this together.”  From then on, it was like, “All right, you asked for it, you got it.”  But we’ve had just a wonderful relationship.

I know that I pushed her away when I was injured, basically telling her to go off on her own. She didn’t, and we’ve been together ever since, and we’ve been fighting medical issues ever since. And I mean it’s definitely a little different, but right now we function, we don’t really even notice the chair. My wife also has mobility issues, she has got cancer in her leg, so that’s caused problem. So, we help each other and get through everything we possibly can.

Her father has not contacted her or spoken to her since her injury. And, with her brother and sister, they became closer. And because of Michele's injury, I think her brother, that's why, he went into medical school; he wanted to do something for her and plus for others in her condition, and we don't know. For now, yes, her relationship with her brother and sister has become stronger, but with her dad no, it went the other way. I did not expect my husband to react that way after her injury. I don't think it was because of her injury that we got divorced, but we grew apart, further apart.

We’re actually quite a bit closer because we have to communicate so much more. And I heard someone describe it this way: in your home when you are both able-bodied, there’s blue jobs and there’s red jobs, and then there’s the jobs that the male does and the jobs that the female does. Well now, we have purple jobs because there’re certain things I can’t do, and she has to pick up the slack, so therefore, it’s fair enough for me to take on some of her tasks. So, I’m the laundry person at our house, although I need help with it all the time. Not so much because I can’t do it, but because I’m lazy, so I’ll recruit her to help me. But yeah, so I mean having to compromise and work together like that, there’s obviously stress about it at first and it takes getting used to with everything else. But as long as you keep an open mind and you’re fair to each other. That’s the other thing is that you have to be really fair to your spouse especially, or if it’s a parent, then you have to consider that person. They can’t do everything for you as much as they might want to, and you want them to. Tou have to be realistic, they don’t want to say no to you.

I think it’s come full circle actually.  You know, in the early days, I think we were disconnected, and she needed to let her hair down, or blow off some steam, and she did that.  But I think now, we actually, we’re in a better place.  We’re—this is what I’d say three years out—where we actually talk like partners about stuff, we actually make decisions regarding our kids’ future.  I think it has come full circle—it’s taken some time—but it’s come full circle.  I hear stories all the time of how guys have injuries, or people have injuries like me, and all of a sudden, they’re in divorce court.  That happens quite often.  Thankfully, I don’t have that wife, that partner, she was in it for the long haul, little did she know what to expect.  But, it’s come full circle, it doesn’t feel much different—I use that often—it doesn’t feel that much different than it did before the accident.  It maybe even better because I’m home more, so we have to communicate more.  So, I think it’s really good right now.  

My husband and I have gotten closer. We had a solid marriage before Molly's accident, thank God, and we were able to figure out pretty quickly what each other's strengths were in this particular circumstance. I was a physician; I knew all the medical stuff that was going on. I was also the woman, so I helped Molly with all her dressing, all her personal care. I did all the day-to-day things and the contact with the physicians and most of the other, as you know it ends up being a whole community of wheelchair providers, medical supply people and everything. I ended up doing all of that. He worked a lot on getting the other resources done, getting the house ready, he worked with the school, to some extent. And he, a lot of, and this was never discussed it was a role he sort of fell into, he would take over at least emotionally when he got home. He would help, you know, cut her dinner, and make sure she, you know, had her favorite T.V. show on, he would make her laugh. I didn't have any energy to do that, I had the energy to get done what needed to get done, but he was able to do the rest. And we work quite well together. He was also smart enough to leave me alone on days where I didn't get out of bed, and instead of saying, "what did you do all day," he kept his mouth shut for a very long time. And he must have realized on some level that I needed that time to get myself back together.

It’s gotten stronger and we get the question a lot. “How do you guys deal with being around each other 24/7?” And, sometimes it is hard, I’m not going to lie, sometimes it is. But my wife is my best friend, I mean, she’s my best friend. I don’t even know how else to describe it, she’s there for me one hundred percent. And, she’s always got my back, she’s always there. I wouldn’t have it any other way. She’s my rock.

It's been a rollercoaster ride. We got some highs and we got some lows, and you just try and weather the storm. And you know, if you can stay together, that's great, and I've had a wonderful partner, and she's done so much for me I could never thank her enough for it. You just really try and ride it out and see what's going to happen because you're the same person as you were before your injury, and you go through a lot, a lot of sickness you know, a couple steps forward another step back—but if you can come out of that, it really makes for strong bond.