There are pivotal moments in everyone’s life when something happens and they are no longer headed in the same direction they were only moments before. This can happen when you fall in love, when you get a new job or when you are diagnosed with a new illness.
I was too young to remember my first diagnosis of Cystic Fibrosis. I was 6 months old and was not going to the bathroom properly. This tipped off the doctors and they did a sweat test on me that came back positive for CF.
I’ll never forget the story my mother told me of her reaction. In fact, its image is so burned into my brain that I feel like I have a memory of it. She said that when she got home from the doctor she held me and cried for hours. She just wandered around the house whispering over and over “My baby, my baby”. I was the fourth child and my mother felt sure that she had worked out most of the child-rearing kinks and I was to be “the perfect child”. My diagnosis took this dream away and changed both of our lives forever.
There is such a void of knowing when you are in the early stages of facing an illness like CF. Learning all the new medications, all the ways to administer them and figuring out what possibilities the future may hold is overwhelming, to put it mildly. At the time of my diagnosis, the life expectancy of a CFer was around twelve years old. My mother decided that she would compensate for my short and difficult life by never telling me “no”. This approach worked fine until she noticed I had become a raging brat by the age of 6! She started reining me in at that point and saved me from myself.
I feel a tremendous sadness for my parents when I think of that time in our lives. How scary it must have been for them and how many parental hopes for my life they must have had to throw away. As much as my life has been a roller-coaster, they have ridden it with me the entire way. Being the parent of a sick child never ends. I think they did an amazing job in a very difficult circumstance. I have eternal gratitude for all that they have done and continue to do to make my life as comfortable and safe as possible.
When I received my diagnosis of Chronic Rejection, I was 2 years post-transplant (I was about 29). My lung function had been falling and, after countless tests, the transplant team ruled out every other possibility. They made a clinical diagnosis of the illness and, despite my dropping numbers, I was completely shocked. I really didn’t know much about Chronic Rejection except that it killed you. (That is less the case now, there are more things that can be done to treat it.)
My initial reaction was one of cold panic. I felt a wave of nausea pass through me and I fought to stay focused on what the doctors were saying. I felt like I was underwater and I could barely make out their words.
I don’t think I cried about it right away, even when I got home. All I could feel was fear and confusion; sadness hadn’t made its way to the top yet. The only thing that I wanted to know was “What do I do now?” Should I quit working even though I don’t feel that poorly yet? Should I pretend like nothing happened and just forge onward as usual? How long do I have? How will I die? What will it feel like when things get worse? How do I live with this new information? And the big question: “Could God really do this so soon after my transplant?” That, perhaps, was the hardest thing to wrap my mind around.
Acceptance was a slow process and it involved educating my self on the disease process as well as letting myself take it one moment at a time. I no longer had the luxury of long-term thinking and planning. All I could depend on was how things were going on that particular day with no ability to predict how tomorrow would be. I had to mourn my future plans and embrace the present. It was a difficult lesson to master.
I attempted to stay in school for a time, but as the illness progressed it became more and more difficult. I eventually dropped out and got a job as a professional pet sitter. This was satisfying, albeit physically challenging, and I did it for about a year. At that point, I was very ill and moved to another town to be closer to my family. The day I moved, I also started using oxygen around the clock. I got sicker and sicker until my second transplant one year later.
One minute we are sick, getting tests and hoping its something that is easily treatable so that we don’t have to take too much time out of our lives to deal with it. The next minute that sickness has been made into a diagnosis and our busy lives drop away and all we want to do is survive. Making that mental and emotional transition is arduous and tangled. I can’t really think of anything else in this world that has changed my life as dramatically as a new diagnosis. There is a great loss that comes from letting go of the things that illness takes away. The hope I can offer is that there is an opportunity, after the mourning, to learn profound lessons of life and self.