PAUL & KRISTI FELD
From our first date, I laid it out on the line what it was like to hang out with a person with CF.
Problems of CF That Are Just for Men/Women
Gender Issues with Cystic Fibrosis–Autumn 2002
BY PAUL FELD
When I first thought about this topic, I doubted I could fill two paragraphs. But the more I thought about events that have happened in my life, I believe gender played a large role in how my life has turned out. I was not diagnosed with CF until I was 20 – it was 1977. I was engaged to be married at the time and wasn’t told the fact that 99% of CF males cannot have children. My fiancée and I were interested in having children almost immediately. When I finally did marry at the age of 22, we tried in vain to conceive to no avail. We went to fertility doctors who were at least as ignorant as I was regarding CF and infertility, as they tested and tested my wife for months without finding any definitive problem. It wasn’t until I was almost 24 when my pulmonologist laughed hysterically at my comments relating to my wife’s difficulty in conceiving. He handed me a three-page CF brochure that stated the obvious – this was not her problem. Although we were shocked, we got through this little misunderstanding and started the adoption process. About two years later, we adopted a baby girl on her 1st birthday. Sarah is now a sophomore in college.
Gender issues did not start or end there, however. Around the time we adopted Sarah, CF was becoming increasingly active in my life. I was beginning to get pneumonia every 6-9 months, which typically required a 2-3 week hospital visit on IV’s. This lasted for several years, and began to take its toll on my marriage. My wife and I had made a decision when we adopted our daughter that she would stay home and care for our daughter until she was at least school age. There is no doubt in my mind that that was a good decision. However, that made me the family breadwinner, which also made my family dependant on my good health. This was before the days of Cipro, Pulmozyme, and TOBI, and during the days of endless CPT, IV gentamycin and ceftazadime. I was using my sick days as fast as I accumulated them, and my long-term health outlook looked pretty bleak. Internally, this was taking a severe mental toll on my wife, who had concerns of raising a child without a father, a good education, or a job in over 6 years.
The day came where we had a talk and she had decided she could no longer put up with the stress of my illness and wanted out of our marriage. Without going into a lot of detail, I agreed with her that it was in the best interest of all involved to end our marriage and go our separate ways. We got an uncontested divorce, and agreed to share joint custody of our daughter until she was 22. Every week, Sarah would switch the home in which she lived. She was 9 years old at the time.
A year or so later, I began dating my present wife, Kristi. We had worked together for a year or so in our healthcare system. From our first date, I laid it out on the line what it was like to hang out with a person with CF. I let her understand immediately that any relationship with me was going to be a challenge for a couple of reasons, but primarily because of CF, an ex-wife, and a stepchild. For Kristi, I think the ‘easy’ part was the CF, and the other two challenges were her biggest ‘threats’ during the first couple years of our marriage. She even went as far as to start a support group for step-parents, which for a couple of years was a great help to our relationship, as she found out she wasn’t alone in dealing with these issues. Time has healed many of those early bumps in the road, and we have now been married over 11 years. We still have stepparent issues, but all parties seem to handle these much more maturely now, and they never really pose the threat they were early in our relationship. Kristi has been a wonderful, outstanding partner in my life. Without her to keep me stimulated and interested in the many things that keep me going, along with her constant nagging me to take care of myself (which is a good thing), she is the best thing that’s happened in my life.
So gender issues have had an enormous impact in my life for the last 23 years. Personality by gender is just as important, but there are times when the common stereotypes take over, and you really have to work to open your mind to new ideas and ways to handle challenges in your life.
Paul, 45, lives with wife Kristi in Florissant, MO. He is a Director of USACFA. His email address is: pfeld@usacfa.org