Guest Post by Ann Brandt Author of “A Caregiver’s Story”Within three years I learned about two different rare diseases. I also mastered the art of caregiving. My husband and I practiced caregiving on each other. He was first. Persistent, excruciating pain in my right shoulder was found to be caused by Guillain Barre Syndrome—GBS—a rare disease that causes paralysis for a period of time, then recedes, leaving the patient to rebuild his or her body—slowly. GBS—so goes the saying—stands for Getting Better Slowly.
However, I had to step up the healing process because my husband was taking his turn as the patient. His disease was far more serious and decidedly life-threatening Cancer. more explicitly, cancer of the brain. Moreover, in line with the precedent we seemed to have established for rare diseases during this period, George’s brain tumor was diagnosed as Primary Central Nervous System Non Hodgkins Lymphoma—PCNL, a rare type of brain tumor. The prognosis was grim—twelve weeks at best.
I had experienced caregiving from the other side of the bed, so to speak. So, I had the advantage of knowing how it feels to be helpless and ill. However, my illness had not been life-threatening, just inconvenient. Moreover, during my recovery I slept most of the time, waking up only for short periods. George’s battle would test abilities that I had never dreamed of.
During my turn as patient, I had maintained my wits and cultivated my already quirky sense of humor. When a wheel fell off the wheelchair as George was pushing me into Denny’s on the way home from the hospital, I laughed. When we attended a play one evening in a place at the top of a hill and George hit a patch of ice, the wheelchair with me sitting and George hanging on—for dear life, I imagined—whizzed down to the parking lot while onlookers gazed in amazement. I laughed for two days.
Brain cancer is different. I still found humor, but the opportunities were few and the circumstances bleak. Most of the treatments were done with George as a hospital patient. I’m convinced that people who work in oncology units are special. Their empathy and caring ways made me feel that everything was going to be OK.
It helps to be in denial. Contemplating a future without George was so awful that I couldn’t think about it. The future was a long black tunnel that I wanted no part of. And so my friend denial kept me going. Each morning I would walk the dog, eat breakfast and join the traffic going into the city, hoping to be at the university hospital in time for morning rounds so I could glean as much information as possible from doctors and students. Many evening drives home provided a beautiful sunset—colors changing from orange to purple and fading to create an effect of a large pearl covering the sky.
Caregivers need an outlet, a way to unwind. My garden was my solace. Alone and quiet, I puttered among my flowers, weeding, deadheading spent blossoms, watering. Then I would heat up a hot dog or fry an egg, watch the evening news and go to bed. Some caregivers I have spoken with cannot bear to be alone. I cherished my solitude. Life was on hold and I floated through each day in a kind of daze.
The day came when the treatments ended. The final MRI was done and we waited for the results. The biopsy and the journey had begun on May 5, 1998. On September 15, 1998 the doctor telephoned. “The tumors are gone.” He had to say it three times before we understood those precious words.
When life is handed back to you those four words carry a lot of responsibility. A lot of repair work was in store for both my husband and me. George had to rebuild his memory, create new neuro pathways for reasoning and communication. His body was weak from the brutal doses of chemotherapy. I had to rest and resist the temptation to worry about symptoms. Many survivors of tough diseases harbor a small seed of worry: Is it coming back?
In the years since that awful summer of 1998, we have attended many support groups meetings, counseled many brain cancer patients and their families. I volunteered as patient liaison for the Guillain Barre Foundation for nine years and remain as a member of the local GBS support group. You might say we had a couple of life-changing illnesses.
The Book: 
This is a Guest Post by Ann Brandt Author of “A Caregiver’s Story”
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