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By any measure, Lisa Niemi and Patrick Swayze had an exceptionally close marriage. By Hollywood standards, its endurance was astounding. The pair met as teenagers in Houston, at his mother's dance studio, and wed four years later. They cheered each other on as struggling actors and survived the stresses of celebrity couplehood after Swayze shot to fame in the 1987 blockbuster Dirty Dancing. They raised horses together, copiloted planes and costarred in two movies (Steel Dawn and One Last Dance, which Niemi also directed). They sometimes veered toward the rocks, propelled by Swayze's bouts of depression-fueled drinking, but somehow they always managed to regain their bearings.
Then, shortly before their 33rd wedding anniversary, Swayze was diagnosed with stage IV pancreatic cancer. Doctors gave him a few weeks to live. Yet he survived for nearly two years, shooting a TV series (The Beast) and renewing his vows to Niemi in a joyful ceremony at their Los Angeles ranch before his strength failed. She nursed him to the end and held him as he took his last breath, in September 2009, at age 57. Her moving memoir of their final struggle, Worth Fighting For, was just released. Niemi, 55, spoke with LHJ on the ranch's sunny patio.
LHJ You started writing your book just months after Patrick's death. What drove you to tell your story?
LN There are plenty of books about divorce, but nobody ever talks about what happens when a marriage actually works. In the wedding vows, it's "till death do you part." It's so hard to wrap your mind around that parting, but at some point, we're all faced with it. And nobody's prepared for it.
LHJ Serious illness can trigger problems in a relationship, even divorce. How did you two keep it together?
LN We had a lot of ups and downs in our marriage, but we'd gotten a lot of crap out of the way before we went into dealing with this. That was a huge gift. The challenges we'd already faced helped us in this journey.
Also, not everybody is as courageous and gallant as my husband was. When people are in existential angst, they sometimes lash out at the ones closest to them. Patrick had his moments of fear, but he was infinitely loving and kind to me. He had a high pain threshold, like a lot of dancers. He refused to accept limitations. Cancer wasn't going to tell him how to live his life.
LHJ You seem pretty strong-willed yourself. Did that help you cope?
LN I'm from a Finnish family and I grew up hearing this word: sisu. It refers to a particular kind of courage, where you're doomed to fail and yet you continue to fight. It's about going the distance, about facing down death itself. With Patrick there was no distance I wouldn't go for him. I'd always been afraid of needles, but I got very good at giving him shots. I started out barely knowing the names of medications and ended up giving orders to the nurses.
I learned how important it is for the patient to have an advocate. Medical professionals work really hard but they are only human. Yours is not the only case they have; they can get tired and make mistakes. I'd go to doctors' appointments with my legal pad and write down everything, so we could keep track of all the details. There were times when someone would say, "We should do such-and-such," and I'd go, "Um, no, we already did that a month and a half ago. It didn't work."
I was amazed at how much Patrick trusted me. That was wonderful, but it was also an enormous responsibility. I felt like I had his life in my hands. I need to sleep sometimes! That's why, dealing with a terminal illness, you really have to watch out for the caregiver getting sick. Because you know what? It's happening to both of you.
LHJ How did you handle the stress?
LN You've got to recharge your batteries so you can be there for the person you're caring for. It's important to take breaks. When we had visitors, I'd go out for lunch or run errands, just to get out of the room. I knew I was going to be there for the long haul.
"He refused to accept limitations. Cancer wasn't going to tell him how to live his life."
My instinct was to handle everything by myself -- that's how I was raised. But you need to have people you can vent to. I had a couple of girlfriends I could call at 3 in the morning -- not that they'd always pick up, but just leaving a message helped me defuse the panic.
LHJ How did Patrick manage to outlive his prognosis for so long?
LN He was a tough son of a gun. But we also had such good luck -- every time we turned around, we were getting mini-miracles. He got into a clinical trial and responded well to the experimental chemotherapy. When that stopped working, he had success with other chemos. When he had a procedure to fix one problem, they found another that would have made him sicker and fixed that, too. When he got a bad infection, we just happened to be right near the hospital. Our timing was always impeccable. Or maybe it was that so many people were praying for him. It just seemed like angels were watching over us.
LHJ You saw the positives even though you knew the cancer would ultimately kill him?
LN Not always. There were times I thought I'd hit my limit and I'd cry, "It's not fair!" But we took every piece of good news we could get. There's nothing like facing death head-on: You really learn to appreciate what you have. Patrick had always been vain about his hair, but he handled losing it amazingly well. There were bigger things on the table! The cancer ate away his muscles, but I still thought he looked beautiful. Though I looked like I'd been hit by a truck.
So many positive things were happening, despite the bad stuff. We didn't have a lot of big conversations; we just seemed to know what the other was thinking. Time was different. It felt like forever. Also, when you're not going to have somebody for very long, it makes it easy to forget about all the things that you thought you needed from him in order to be happy. I discovered that it didn't take much. Because all those messes we got into with ea at the most important thing in my life. What could I have done differently? But looking at him, I could see that Patrick wasn't his body. He was in his ch other -- that was love! Love is not always a happy, floaty feeling. Love is a raw connection, and it challenges you, and hopefully uplifts you. It's not there to make you happy, but just looking at him made me feel that way.
LHJ Toward the end, how did you make the tough decisions?
LN Eventually, we had to stop trying to make him better and focus on his comfort. Deciding to give up the fight -- that was horrific. A very lonely place to be. I felt like I had failed at the most important thing in my life. What could I have done differently? But looking at him, I could see that Patrick wasn't his body. He was in his body, but the last bit of it was being used up. If I wanted to help him, I couldn't let my fear of losing him stand in the way. I had to let him go. As it turns out, some pretty phenomenal things happen during that process. It's an extremely precious, delicate time. Except for saying I love you, there are hardly any words. I would just sit for hours with my head on his shoulder, holding his hand, listening to music. You seem to transcend everything. It's a powerful thing to help somebody over that bridge.
LHJ Afterward, how did you feel?
LN Afterward is terrible. After I lost Patrick I could see why a lot of spouses follow their mates into death. I thought, if my car goes off the road tomorrow, it's okay, because I'll get to see him.
I'm usually such a positive person, but I found nothing positive about widowhood. It's easiest for me to talk to other widows about this, because I know they know how I feel. It's not just one loss -- it's loss after loss. The first time I opened the bedroom door and he wasn't there. The first time I walked into a restaurant we used to go to. His birthday, our wedding anniversary, you name it. Every one of them hurt. Financial repercussions, tax stuff to deal with. And about six months into it, just when you think it can't get any worse, it gets really bad. The good memories are the hardest to deal with. You can't even look at photos from those times. Your emotions toward the one who left are not always pleasant. And there's not anything you can do about it.
LHJ How did you find the strength to get past that dark time?
LN I saw a grief counselor. That helped. So did writing the book. For the past year I've been the national spokesperson for the Pancreatic Cancer Action Network. But I still have bad days. The second anniversary of Patrick's death was last September and the whole month was terrible.
It's taken a long time, but things are becoming more manageable. I can open my eyes in the morning now and not say, "My life sucks." I've found that it's like working a muscle -- you just have to keep on getting out of bed and walking down the road. Every step you take is going to make you stronger.