cont. Half the Walk Is Through the Rain

In the mid-1980s, along with several required family members, I had genetic testing done at the University of Chicago. At that time, genetic testing for CF required as many blood family members as possible from both sides of my sister’s and her husband’s families. I can still feel the November cold, smell the black, rich plowed dirt, and see the starkness of the treeless, flat Illinois landscape as it contrasted with my new home in warm, hilly, pine-treed, Georgia. We set our appointments for the Friday after Thanksgiving. The kids, Theresa, Michael, and Beth, all cried when they were told of the blood draws. My younger sister, Karen, avoided some of the problematic issues of genetic testing by already becoming pregnant with her first child. I thought it was a good idea to be tested, and at that time, it was the only way to find out if Michael was a carrier of the CF gene. By Christmas we had our answers. Michael is not even a carrier. My sister and brother-in-law hit on the 25 percent box three times in a row. About ten million - or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. The gene came from my father’s side of the family. My brother-in-law’s mother, now deceased, was also a carrier. I was only other family member found to be a carrier of the CF gene. Oddly, I felt bonded to my nieces and eventually to other CF families in a way that other family members were not. When Theresa was waiting to get her call for her new lungs, I started reading the transplant and the CF bulletin boards on the internet trying to get as much information as I could about CF and double-lung TXs. Then, I was gathering information as a coping mechanism but I still periodically return to these electronic bulletin boards. What draws me to these cyber communities? Perhaps it is the intimacy of people willing to share their personal fears and painful losses. Perhaps it is the fact that it is a suspenseful community where the future outcome of any one health crisis is real and unknown. Or is it the pull towards reality where my virtual encounters may overlap into my physical world and my daily, lived experience?