In October 2012, my husband and I were celebrating our anniversary with a romantic dinner from our local Italian restaurant. As we ate, Stephen stopped talking to look at me. Our eyes met, and we said nothing and everything in those few moments of silence. After 24 years of marriage, our eyes spoke more than any words we could choose.
Suddenly, a bright light and the noise of a door opening interrupted the moment. It was 7:30 p.m. The nurse walked in and yanked us back into reality. Being in the hospital on a special day wasn’t new for us, and we were doing our best to celebrate our marriage despite me being sick again.
In 2004, during the delivery of our youngest son, a rare epidural complication caused a lesion at my T11-12 vertebrae, and my new life began. The first five years were the most difficult. By 2009, our marriage was in real trouble.
Chasing a cure, managing my constant medical complications, raising our family and running a business all came to a head that August. We were facing bankruptcy, and the reality that there was no miracle cure for me overwhelmed us both. We had become ghosts of our former selves, floating through whatever fresh hell came at us from day to day.
“I just don’t know what to do, Em. I can’t do this anymore,” Stephen barely whispered one day as we sat in the car at a stoplight. I looked over at him, and I honestly felt nothing. I was completely numb. It had happened; Stephen wanted out, and I wanted it for him. He wanted to move out, but the problem was, we were broke, and I was unable to live on my own while I recovered from spinal implant surgery. Staying together was our only option.
When I was first injured, the doctors and our friends told us we would thrive in our new life, and maybe even help other couples once I had adjusted. Throughout those first five years, we would hear how inspiring we were despite the many setbacks in my recovery. We didn’t feel like we were inspiring or thriving. Honestly, we were barely surviving. We weren’t having sex, and most days, we only talked about kids and medical issues. I couldn’t remember the last night we’d spent alone together outside of the hospital.
I knew something had to change, so I went about finding small ways to connect despite the chaos of the medical issues I was experiencing. I gave up the idea of thriving post-injury, and I began what I called “surthriving.” We had to keep surviving as well as making our relationship a priority.
We started with small things like coffee and breakfast in the mornings. Stiff and awkward in the predawn light, we sat and tried to remember who we were when we fell in love. Later, we planned small outings and made sure to steer the conversation toward anything other than my injury and the wreckage left in its wake. We crept around resentments, fears and lost dreams.
Slowly, we began to find each other again. Stephen and I had not been intimate for a long time, and it was mainly my fault. I refused to give up on getting back to “normal,” and paralyzed me was never in the mood. Sex was hard, and starting slow was the key. When we were together physically, intercourse was not the goal. We needed to start over at the beginning, as though we had just met. I had lost who I was, and I couldn’t start again where we had been. Together, finding the new me proved very exciting. Everything became brand new again and slowly, over time, we began to know each other again.
Marriage and long-term relationships are difficult under the best of circumstances. The U.S. divorce rate is currently around 40%. For those in relationships at the time of injury, statistics predict an increased risk of separating in the first three years. Recovery, and the strain it puts on couples, make keeping romance alive challenging. Rehabilitation and recovery goals focus on the person who has been injured, leaving their partner feeling more like a caregiver and cheerleader. Being a caregiver is taxing and depleting. It can lead to tension and even the end of a relationship.
One of the dirty little secrets about life as the partner of an SCI/D survivor is that resentment is inevitable, especially in the early months and years. You know the injury is not your partner’s fault, and they need your love. But a significant detour from the life you expected can be a hard thing to accept. In my case, what would people say if Stephen left me? What kind of soulless dirtbag leaves his paralyzed wife and seven children?
Tiny cracks between couples begin to build, and unspoken needs go unanswered. These building blocks for resentments can grow unchecked. When people return home following rehabilitation, they need to take time to reinvent their current relationships and find new ways to be intimate. For couples that meet their partners post-injury, communication is key to building long-lasting commitments.
Jeff & Ariane
When Jeff Mitchell met Ariane New-hall at a concert over three years ago, there was an instant connection. Mitchell, an investment specialist and a C6-7 quad since 1994, says he first noticed Newhall’s eyes and beauty. “She had such a sweet nature,” he says. “I felt comfortable with her right away.” The attraction was mutual for Newhall, a medical assistant. “He had such nice looks, and I liked the way he looked at me,” she recalls.
Despite living two and a half hours apart, the two Californians began texting and calling each other daily. After a few weeks, they met for a first date. Both shared a love of music, good food, wine and staying active. Soon, they began seeing each other every weekend.
“It was exciting when I met Ariane, and it still is today,” Mitchell says. “Ariane takes time to plan special things for us to do together. I’m more spontaneous, which works to keep our time together feeling new and exciting.” They keep connected with frequent text messages, funny memes, photos and telephone calls throughout the day. She will text him a few days before the weekend to let him know she’s excited to see him. She may pick up something sexy to wear that she knows Mitchell will like. Newhall says, “Jeff will light candles, play romantic music, and we share a bottle of wine cuddling and kissing.” Discovering new restaurants and music is a steady source of creative dates for the couple. Adding to the excitement of their weekends together, Mitchell and Newhall share a deep connection and intimacy earned by working through difficult times as a team.
Over the past year, Mitchell has been fighting a complicated UTI, which makes it difficult for the duo to be as active as they would like. Newhall helps with Mitchell’s additional medical needs as well as keeping him upbeat and focused on his recovery. “I’m sure to let Jeff feel my love and commitment to him during times of sickness,” says Newhall.
Mitchell, in turn, focuses on patience and planning events for when he is well again. “It helps us to know what we are currently going through is temporary,” he says. “We have things planned for the future, and it motivates me.” Newhall agrees: “Part of keeping the romance is being able to work through situations with the understanding that our love is the most important thing to protect.” Mitchell adds, “We keep the flame alive because we share the same level of chemistry we had when we met. The rest just comes naturally.”
That doesn’t mean things always come easily. “When Jeff is sick, there is more work, and it can be harder,” says Newhall. “We love each other and know the little things don’t matter, our love does, and we focus more on the good times.” Mitchell is excited about the good times to come. “Something must be working right,” he says. “This spring, I’m selling my house and moving in with Ariane.”
Joanne & Paul
Unlike Mitchell and Newhall, Joanne and Paul Wilde were 15 years into their marriage when Joanne sustained a spinal cord injury at T11-12. Joanne met Paul in 1999 when they worked for the same company in the United Kingdom. “I noticed Paul’s thick, long blond hair and blue eyes,” Joanne tells me. “He was tall, slim, and his confidence was so attractive.” Paul found Joanne’s good looks, charming personality and sense of humor intriguing. “We laughed a lot, especially at each other, and we loved being together,” says Joanne. After dating, then traveling for a year, the couple decided to move to the U.S., settling in Largo, Florida.
They married in 2002 and welcomed their son, Zak, in 2005. Between work, travel, and being parents, Joanne and Paul were enjoying the simple things in life. The couple focused on romance despite being parents to a young son, planning regular romantic dates and making time for weekends away together. They also enjoyed taking cruises and going on family road trips. During one of these trips to North Carolina in January 2014, Joanne sustained a fracture at T11-12 while sledding with Zak.
Paul says he never felt like leaving the marriage following Joanne’s injury. “In the beginning, it was harder, but you work through it, and now it’s just normal for us,” he says. Still, Joanne admits the thought of Paul staying in the marriage out of obligation has crossed her mind. “Paul is aware of these feelings, and he knows I would hate to have him stay for that reason … I didn’t want him to leave, but I wanted him to love me, not pity me or feel an obligation to care for me.”
Joanne lets Paul know how much it means to her that he manages everything and keeps the family on track. “Paul is my rock, although at times he tries to do too much,” she says. “I try to remind him that I need some independence.” Paul admires Joanne’s strength and determination and feels supported by his wife of 20 years. “I always let Paul know how much I appreciate everything he does for us. I remind him he is an excellent husband and father,” adds Joanne. Likewise, Paul reassures Joanne of his love for her with frequent text messages, little gifts and flowers. “I don’t just love Joanne,” he says. “I am in love with her.”
Paul and Joanne keep their love exciting by shopping for sexy underwear together and booking nights at a local hotel to reconnect. They also text sexy messages to one another during the day. Sometimes Paul will surprise her with her favorite take out.
Although happy with the couple’s intimate times, Joanne struggles with her confidence and libido. Confidence was an issue pre-injury, and she tries to remember to focus on what makes her feel attractive when they’re together. “I wish I could be more comfortable with sex. I’ve never had a lot of self-confidence,” she says. “I wish I had a stronger libido and that Paul would slow down and listen.” Paul is happy with their sex life, although he would like to be intimate more often. “We keep working at it, and that’s all that matters. We are close physically, and I like that,” Paul adds.
When medical complications sideline romance, the couple adjusts. “We tackle it together and keep smiling,” says Paul. He helps by scheduling appointments, picking up extra chores and keeping Joanne focused on the positive parts of life. Another way the couple helps to maintain passion during these times is to have quiet date nights at home.
“From the time of my accident, we have been open and honest with each other. We also find that laughter is the best medicine,” says Joanne. The hardest part for Paul is seeing Joanne in pain and feeling helpless to fix it. “Even though Joanne is the one with the injury, we deal with it together,” he says. “There is nothing we can’t do together. When she’s down, I feel it is my job to keep going and make her happy.”
It Can Get Better
Stephen and I have come a long way since those early mornings spent drinking coffee and breathing to life our worst feelings. We now find time for nights away in the desert and going away for the weekend with friends. Two years ago, we began to journal weekly. If there is something we need to talk about or want to do, it gets written down. The journal ensures we take time to plan dates and keep communication open. Once a month, we plan an afternoon to go over the journal and make any adjustments. It’s working for now, and I think our marriage is better than before my injury.
As long as both partners share a deep commitment to each other, are able to communicate and are willing to explore the new reality after SCI/D, there is no reason that love and romance can’t be even more intimate and fresh than it was prior to injury.
This past September, Stephen and I took a trip to Northern California with some friends. One evening, after dinner, I overheard him talking to a friend about our marriage of 26 years. “How did you do it?” our friend asked, “I mean, you guys have been through so much?” Stephen answered, “I looked at Emily one day and I realized I couldn’t live without her, and I had to figure it out. … We rebuilt ‘us’ from nothing, and now she’s my everything.”