By Chris Parker
By Jesse Marx
By John Baichtal
By Olivia LaVecchia
By Jesse Marx
By Olivia LaVecchia
By Tatiana Craine
By Judy Keen
We've all experienced failings of the body-- a nasty cold or blast of influenza. It's all you can do to stumble around the house in search of some sort of relief, let alone be cheery and attentive to your children. Laundry waits, dishes congeal, the dogs don't get walked. Time is the only cure and you know that soon you'll feel better. But what about the bigger stuff? Ever hobble through the house on crutches or dress a preschooler with your arm in a sling? Getting to the car is like running an obstacles course and mowing or shoveling or carrying groceries are physical impossibilities. Rinsing out diapers or picking up toys become intellectual challenges as you try to navigate the ordinary terrain of the household without the ordinary use of your body. Sometimes fear can hamper our movements too: the lump, the odd cramp in the stomach, the injury that doesn't heal. What if it's something serious! When the body fails--or threatens to fail--our grip on life shifts a bit.
This is the story of three families whose lives turned on that moment when "what if" became reality; three families who have shifted their lives to incorporate, but not be subsumed by, illness. The Zimmerman, Adams, and Zwolski families each stumbled, stunned, into a world dominated by doctors, hospitals, wheelchairs, medicine. They each emerged from the initial shock and crisis to build lives that are in many ways ordinary, and in others extraordinary. Each family is living with lupus.
Lupus is a slippery disease, often difficult to diagnose because many of its symptoms are symptoms of other diseases as well. Lupus affects a myriad of body parts and varies greatly in severity; while most people with lupus can expect the disease to be moderate and limited, some face serious illness and life-threatening problems. According to material published by the Minnesota Chapter of the Lupus Foundation of America, lupus is classified as an inflammatory disease in which the immune system attacks healthy tissues and organs. Immune systems produce antibodies, protein substances that normally fight off bacteria and other foreign substances. In people with lupus, these antibodies turn against the body's own organs and tissues.
There are three types of lupus: discoid, systemic lupus erythematosus, and drug-induced lupus. The latter is quite rare: symptoms of the disease occur only when someone is taking specific drugs and the symptoms stop when the drugs do. Discoid lupus is limited to the skin, and consists of a potentially scarring, scaly red rash, especially in areas of the body exposed to sun. Systemic lupus erythematosus (SLE) is the type of lupus affecting members of the Zimmerman, Adams, and Zwolski families. SLE can involve skin, joints, lungs, kidney, blood, nervous system, brain, and more. In some cases, the disease attacks and harms a number of organs. Lupus rarely affects the spine, but when eight-year-old Bree Zimmerman was paralyzed by the disease in 1994, she became one of only forty-seven such cases that have, according to her doctor, been documented.
Lupus wasn't Bree's first challenge. Born in Ethiopia, she spent her first months in a hospital waiting for the Zimmerman's adoption paperwork to file through countless bureaucratic hands. Well aware of the health risks facing orphaned or abandoned Ethiopian children, Kathleen and Randy Zimmerman were anxious about their daughter's health even before they met her, and tried unsuccessfully to get Bree moved from the hospital to a better facility. When that transfer fell through, the couple assessed the situation: Ethiopia was in the midst of war and famine; a Washington D.C. official called and warned them it was too dangerous to travel to Ethiopia; their daughter was there and might be starving to death. Weighing all factors, Kathleen and Randy did the only thing they could do: they flew across the world and into a war to get their child.
When they were finally able to meet and take home their baby, they were relieved and grateful that malnourishment was the only thing wrong with five-month-old, ten-pound Bree. Their trip was also a tangible reminder of how luxurious the typical middle-class American life is compared to the lives of most people on this earth; Kathleen and Randy arrived back in Minnesota feeling doubly blessed and very lucky. Surrounded by love and lots of good nutrition, Bree did what babies are supposed to do--she morphed into that amazing, energetic, and mostly happy creature known as the toddler.
But when she was about three and a half, Bree's energy level began to change. She tired easily and wanted to rest a lot. Worried, her parents brought her to the doctor but nothing serious seemed amiss. By the time her fourth birthday rolled around, Bree was limping and in pain: another trip to the doctor revealed that Bree's blood platelets were alarmingly low. An X-ray showed that she had arthritis in her ankles, knees, and wrists. The possibility of leukemia emerged. Bree began receiving gamaglobulin infusions to increase her platelet count--and possibly her energy--as the tests and speculations continued. By the time Randy and Kathleen got the diagnosis of lupus, they were relieved. Kathleen remembers, "At that point we were thinking, thank God it's not cancer. It's just lupus. We were really naive about lupus."