I was born with restrictive cardiomyopathy of the right ventricle. It is rare and it is genetic. On my dad’s side, we lost many family members to heart problems. That was normal. The condition has seemed to effect women worse than men. Four female cousins were diagnosed with this condition. One died at 16. One had a heart transplant in her 30’s and passed away shortly after. Her sister had a major stroke in her 30’s. Another cousin has followed a course similar to mine, receiving treatment for congestive heart failure and having an implanted pacemaker/defibrillator. That was normal.
For years I knew an earlier-than-usual death was a possibility for me. Knowing this, I still did not consider that transplantation was an eventuality. I always said, “I’ll be here as long as God wants me to be.” That’s how I felt. That was normal.
Life before my transplant was good. Sure, there were challenges – that was normal - but it was my life. It was certainly better than the alternative. I had a loving husband and a caring family. I worked part-time at an acting school with the most flexible and understanding boss. We were involved in a wonderful church, playing and singing on the worship team, among other things. I had just started taking online college classes with the goal of obtaining a degree in psychology and doing some Christian counseling. I felt that I had purpose in life and that I was doing well overall.
Of course, every day was a struggle with fatigue. That was normal. I pushed through to do the things that were most important – or most important to me, anyway. Resting in the afternoon was essential to my routine. I would still get tired, but that was normal. I really didn’t know there was any other way to feel. I worked, did chores and errands, spent time with family and friends, took care of church responsibilities and, in the last few months, did college course work. Every night I went to bed what I call ‘bone-tired’. At times I got so tired I cried. That was normal.
It affected my appearance. My hair was drab, my skin was pale and my lips were purple – all the time. That was normal. My legs were always bruised due to medications and had broken blood vessels. Looking back at pictures, my eyes often portrayed the exhaustion that was in my body. Spud, my husband, used to look at me sometimes and say, “You need to rest.” Other people used to ask if I was okay. I didn’t understand then what they saw or why they were so concerned. I was okay, but I did need to rest. That was normal.
Over the years, certain activities had sort of ‘disappeared’ from my life. I always liked to bowl, but I could really only bowl one game without getting tired. I love amusement parks, but the last time I went I had to get a wheel chair. Prior to that some of the rides had started to make me almost pass out. I couldn’t go shopping for very long. It just took away energy from the other things I needed to do, so I rarely went to a mall. A trip to the grocery store was draining for me. There were many things – sports, exercise - that I never attempted, because I knew I wouldn’t be able to do them. I couldn’t walk and talk at the same time without ending up panting and breathless. That was normal.
That was my life, my version of normal. What I didn’t understand was how abnormal my normal was. I couldn’t understand, because I had never experienced anything else. If I saw these kinds of things written about someone else, I would think how difficult their life must be. I would have sympathy for them and pray for God to help them in their struggle. Thankfully, that’s what other people were doing for me......