Christa

Christa’s seven-year marathon ended right before Christmas. Her death hit us hard. We grieved for her and for her husband; we ached for her son and daughter who would grow up without their mom. To help us express our feelings about Christa we made a memory book to give to her family. The book had words like brave, optimistic, persistent, determined. Those words showed up over and over again. They defined this woman who fought so hard for so long.

None of us knew Christa when she was well, however. She and her husband and daughter moved here a few months before she got sick. I moved here after they did, and I heard about them through church from the announcements and sign-ups passed around to help the family. I saw Christa occasionally from a distance and even from far away during the early years of her ordeal, it was clear that she was seriously ill. We met when she was hospitalized with pneumonia and I visited her as the new president of the church’s women’s organization. She was terribly ill and looked it, yet all of them – Christa and her husband and children – were taking her hospital stay in stride. At four years into her illness, this was the cadence of their lives. And Christa – she had a fight within her that was unparalleled. Besides, a simple case of pneumonia and a few days in the hospital were nothing compared to all she had gone through.

Christa’s journey began when she started feeling numbness in her feet when she was pregnant with her son. She was thirty and her daughter was two. On Christmas Day, less than three months after her son’s birth, and after puzzling and progressive symptoms, doctor visits, and a hospital stay, Christa could barely breathe or walk. She was hospitalized. She was put on a ventilator and became paralyzed from the neck down. She suffered a stroke. Her skin turned purple, she rapidly gained 40 pounds, and the doctors drained fluid from her body daily. Finally she was diagnosed with a rare disease called POEMS syndrome. The treatment was aggressive chemotherapy. She spent the next five months in three different hospitals. Along the way, she developed another rare disease that caused two more strokes and resulted in two brain surgeries.

When she was finally able to return home, breathing on her own, Christa was still paralyzed. Family and new-found friends from church helped with everything – cooking, cleaning, caring for the children, her personal needs. If she wanted to feel her son, someone had to hold him against her face. Yet despite her limited abilities, Christa was in charge – directing how things should be done. This was her home, her domain, and she was organized and particular. She was determined to retain whatever small degree of control she could.

Eventually, Christa recovered enough to get around with a walker and braces, although she was still very ill. The spiky wig, stylish clothes, and manicured nails all provided clues as to who she was. It was kind of an in-your-face attitude toward her illness. But her challenges weren’t through. She developed leukemia, the most serious type, which resulted from the earlier chemotherapy. This led to a successful bone marrow transplant that took place several states away, which meant Christa was away from her family for several months with only a web camera to connect them.

For the last couple of years of her life, Christa was back in a wheelchair. She had developed graft versus host disease from the bone marrow transplant and it significantly affected her lungs, which meant that breathing was difficult. It also meant that talking was difficult, moving was difficult, everything was difficult. Her arms and hands had been affected, too, although I don’t know what that was from. She could use them, but her hands seemed frozen in an unnatural position. None of this kept her from being a wife, a mother, a friend. She took the kids to school. She folded the laundry. She went to every school event and soccer game. She fixed dinner. It often took her all day, but she fixed dinner because she was going to do as much for her family as she could. We tried to get her to accept more help in those last few years. She wouldn’t accept it. When one of her friends had twins, she took dinner to the family because they had helped her family out during her illness and she wanted to return the favor. Perhaps she complained about how hard her life was, how she had one of the unluckiest hands ever dealt. That’s not a side any of us saw, though.

Several times throughout the years, the doctors thought Christa wasn't going to make it. They didn’t fully know her, either. It wasn’t luck that kept her around; she fought with everything she had. She had a family to care for and she wasn’t about to give up. And she wasn’t just going to survive her ordeal – she was going to live. When she was healthy she had been an avid snow skier; she had owned a house cleaning business. Of course she couldn’t engage in those activities anymore, but that didn’t mean that Christa gave up living an active life. Someone ran into them on a snowy hike in the mountains on a trail with wheelchair access. Someone saw them at Disneyland. She went on a cruise. And then there were the regular trips to Costco, with Christa riding on a large, flat cart as though it was her own personal sled. This may make it sound like Christa was an otherwise healthy woman who happened to be in a wheelchair. That was not the case. She was a very sick woman and that was readily apparent to anyone who saw her.

Toward the end of her life, her lungs were functioning at a mere fraction of capacity. She still fought. What thirty-something woman wants to leave her husband and children? She needed a lung transplant, but her body was so battered. She had wrung every last ounce of usefulness out of it and she wasn’t a candidate. The doctor who had treated her from the start told her goodbye. She continued to fight.

During Christa’s last hospitalization, a few of us helped her children decorate the house for Christmas. When we put the presents under the tree, we thought that some elderly relatives had sent gifts. But the scrawl on the tags was Christa’s. She had somehow managed to purchase and wrap presents. Although she hadn’t know it when she bought them, those were the presents her husband and children would open after her funeral.

The night before she died, Christa tricked several people into thinking she wanted some coffee – which she didn’t drink because of her religious beliefs – then joked about fooling them. This from a woman who could barely talk. These two incidents were a fitting period to the end of her story. They were pure Christa. She was still giving to her family, still engaged in life, and still eking out pleasure.

Christa’s life was a lesson to all of us about focusing intently on what is most important in life – family. It was a lesson on looking forward and fighting to do what you can, regardless of your circumstances and limitations. It was also a lesson on what really constitutes a problem. You simply could not be around Christa and think you had any when you saw all she went through.

Like many inspiring women, there are co-heroes in her story: her husband first and foremost. You cannot read this story without having an inkling about his love and devotion during those seven years. Her mom, step-mother, and mother-in-law; her sister; and the many women who became her friends as they helped throughout the years. While these women may not have known Christa when she was well, they definitely knew her. Brave. Optimistic. Persistent. Determined.
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